Tired but doing ok!
I haven't blogged for a few days as I have been feeling quite tired and not quite right, so didn't want to alarm anyone. Thankfully I seem to be feeling better today so am feeling more positive again. It really just started when I got back from Newcastle and I was finding it harder to get up in the morning - the last few weeks before that I have been up and about at 7am, although in retrospect that was probably more abnormal! I also was finding it harder to walk Seb as my limbs just felt very achey and heavy and everything seemed like a bit of an effort. I have been worrying that this is a sign of more rejection, however I do feel better today and I have no other symptoms such as breathlessness or temperature. I suspect it was just a backlash from my busy weekend at the wedding followed by the trip to Newcastle. I keep forgetting that I am still only 9 weeks post surgery and have a lot of stamina still to build. I also keep forgetting that it is normal for people to feel tired sometimes, and was reassured when my friend told me that when she woke the other morning her first thought was about when she could get back into her bed that night, lol. So, my duracell bunny impression over the past few weeks was quite possibly steroid fuelled and as my steoirds have been gradually reduced, my body is just trying to readjust and get back to some degree of normality.
Despite feeling tired I have still managed to keep myself busy. I have however been trying to avoid shops as this inevitebly ends in spending again. Andrew had a dream the other night that he had a hole in his wallet and all his money kept falling out - I don't think you have to be an expert to work out where that came from! I have instead been doing more baking and cooking (see, i am saving money doing this!). So far this week I have made a rhubarb sponge, 2 rhubarb tarts (someone at Andrews work gave him rhubarb), 4 fruits loaves and am currently experimenting with a double mix of flapjacks. Funnily enough I seem to have put on about 2 kilos according to my own scales, so am nearly at my target weight. This might mean I have to cut down on the lattes and home baking *sigh* . Although to be fair, eating 8 flapjacks a day probably is excessive by anyone's standards ;-) I have also been trying different soups for my lunch and made butternut squash soup the other day, which was very nice. I have also been experimenting with dinners so Andrew is never quite sure what he is coming home to. It's a bit of a hit or a miss really, depending on what random herbs etc I have added. I think its the only way to learn though and at least I am trying. The only issue I really have is with safety - I probably shouldn't be allowed to use knives unsupervised. I currently have plasters on 3 different fingers due to cooking related 'incident's'. I think the term my mum likes to use is "hash bash". I need to learn to slow down...
The weekend has been quiet for me, as Andrew and my dad are building the greenhouse. In between the deluges of rain they are making good progress and we might even have time this year to grow some veg ( if we buy some plants already brought on). I'm looking forward to experimenting with that. Andrew has also been shovelling the slate chips so the rockery is nearly finished - I will post a photo of the final article at some point.
Seb is doing fine and still enjoying all his extra walks, although has come to expect them now. We had the interesting task of introducing him to another dog yesterday. Andrew was walking his friends dog while they were at a wedding, so we decided I would meet him on neutral territory with Seb to see how they got on. They have met twice before with little success - the first time I came home with Seb and the other dog, Alfie was in our house. Alfie barked his head off, and Seb was scared so ran behind my legs. He then moved into the hallway and would throw out a bark before quickly retreating backwards! The next time Seb was already in the house and Alfie came into the hallway - Seb went into territorial mode and after climbing on the stairs to gain some height, he barked and barked until Alfie had to leave. This time we got on much better on neutral ground. Seb was quite unsure at first but when we started walking together he did follow on ok, although Seb had to walk behind Alfie so that he could keep an eye on him at all times :-) He then tried his casual look where he just pretends he hasn't even noticed there is another dog. Everything was going really well until we got to our house and there was no way Seb was letting Alfie anywhere near the front door! Walking together was progress though, so would be worth trying again. I think it would be nice for Seb to have a doggie friend, even if he does consider himself to be human...
(p.s Just a message for Peter who left me a comment - sorry couldn't see an email/blog to reply to! I realise about the relationship between reflux and chronic rejection and am taking part in a study - measuring ph and relating to biopsy results. If I have significant reflux I will be offered a fundoplication surgery, so I will be interested to see my results from this. With regards the sinuses, I do daily saline washes - it does really help. I did offer up the theory that damage to my vagus nerve was causing the high heart rate, but the doctor thought this was unlikely. I still think its the most plausible explanation although I do also notice that tacrolimus can cause high heart rate and it may be this. Anyway just wanted to answer those queries - thanks for reading the blog and leaving a comment! :-)
Sunday, June 29, 2008
Tuesday, June 24, 2008
Outpatient Clinic
I am home! They didn't keep me!
We travelled down yesterday afternoon and spent the night at Pat's (mums friend) before heading to the clinic for 7.15 am this morning. We thought we were nice and early but there was already a queue of people waiting! You have to take a ticket when you arrive, so that you get taken in order - it's a very busy clinic and the relatives often get sent to sit elsewhere as there are never enough chairs. The first port of call is blood tests, which have to be taken early so you can then take your anti rejection drugs. Unfortunately my veins didn't want to play ball today and after a few attempts the first nurse gave up and I had to wait on the more experienced nurse to have a go. Another few failed attempts later and I was told to sit with my hands in a basin of hot water to make the veins come up. Luckily this did help and I finally parted with some blood. I have to phone tomorrow for the results but I'm sure they will be fine.
Next it was round to lung function and I was disappointed when on the first attempt I blew exactly the same as last time (75%) when I had the rejection. However after another attempt I got it up to 79% which sounds much better :-) I am still chasing the elusive 80% + which would put me within the bracket for a 'normal' person. It's a target for next time. I then went round to x-ray and since no one commented otherwise, I assume it was fine.
I also had to get an ECG today because my heart rate was a quite fast (12o at rest) and it has been like this since I got my transplant. It was always fast before due to poor lungs and chronic infection, but it should have come back to normal by now. The ECG was just to check that the rhythm was normal, which it was.
We had all this done by 9.30am, so just had to hang about for the next 2 hours waiting to be seen by the doctor. It is quite boring I must admit, but I did have a book to keep me busy. We also bumped into a lady we knew from my old children's hospital and she has had her transplant for 15 years, which was so encouraging to hear!
We finally saw the doctor about 11.30am and I'm sure he wasn't amused when I pulled out my list of 'things' I wanted to ask about! I was concerned about the heart rate and he did think it was odd, but wanted to discuss it with the consultant after clinic. It's not really anything to worry about but they can use drugs to slow it down if it is bothering me. It does bother me at night as I can feel it thumping in my chest as I try to get to sleep - however the drugs to slow the heart down (beta blockers) may also make me tired and I don't want that. We will discuss it at my next appointment.
I also explained that I had been coughing a bit lately and could feel and hear some mucus in my chest - this was worrying me because I had this during the last rejection. He said it could still be due to the healing process and wasn't too worried in light of the fact my lung function was up, and I was otherwise feeling ok. They cannot rule out rejection at this stage but they would not do another bronchoscopy so soon after the last one, so there is nothing else to be done at the moment. If I start to feel otherwise unwell I can contact them but I am due back in 3 weeks for my 12 week bronchoscopy anyway so I will be getting checked out soon enough. I will just have to be prepared for a potential stay at my next visit and if all is well it will be a bonus!
I also have been suffering from terrible sinus pain lately, which is quite annoying to say the least. I had major problems with this pre-transplant but at the time it was the least of my worries - now its really bothering me because I feel so well otherwise. I am still taking all the strong painkillers for my wound and this is hardly touching the sinus pain. The doctor said I have to be referred back to the ENT (previously I was too ill for further sinus surgery so was discharged from the clinic) in case there is anything else they can do. The main concern is my sinus infections causing infection in the new lungs, especially since my sinuses harbour all my old CF bugs. I have already phoned my CF team and they are going to refer me now so that we can get the ball rolling.
My final complaint was acid reflux which seems to have got worse since the transplant. Apparently this is quite common and is due to interference with nerves and side effects of medication. I am on high doses of medication for this anyway so not much else can be done. I am still taking part in a study looking at acid reflux post transplant and will be getting more tests in a few weeks to look at this, so I will mention it then. Maybe I should cut down on the coffee - that's bad for reflux. Let's be realistic though - that's just not going to happen ;-)
Otherwise they were really pleased with me - lung function up, weight stable, sats 99%, blood pressure normal and chest sounded good, so I can't ask for much more than that! Gold star for me :-)
I am home! They didn't keep me!
We travelled down yesterday afternoon and spent the night at Pat's (mums friend) before heading to the clinic for 7.15 am this morning. We thought we were nice and early but there was already a queue of people waiting! You have to take a ticket when you arrive, so that you get taken in order - it's a very busy clinic and the relatives often get sent to sit elsewhere as there are never enough chairs. The first port of call is blood tests, which have to be taken early so you can then take your anti rejection drugs. Unfortunately my veins didn't want to play ball today and after a few attempts the first nurse gave up and I had to wait on the more experienced nurse to have a go. Another few failed attempts later and I was told to sit with my hands in a basin of hot water to make the veins come up. Luckily this did help and I finally parted with some blood. I have to phone tomorrow for the results but I'm sure they will be fine.
Next it was round to lung function and I was disappointed when on the first attempt I blew exactly the same as last time (75%) when I had the rejection. However after another attempt I got it up to 79% which sounds much better :-) I am still chasing the elusive 80% + which would put me within the bracket for a 'normal' person. It's a target for next time. I then went round to x-ray and since no one commented otherwise, I assume it was fine.
I also had to get an ECG today because my heart rate was a quite fast (12o at rest) and it has been like this since I got my transplant. It was always fast before due to poor lungs and chronic infection, but it should have come back to normal by now. The ECG was just to check that the rhythm was normal, which it was.
We had all this done by 9.30am, so just had to hang about for the next 2 hours waiting to be seen by the doctor. It is quite boring I must admit, but I did have a book to keep me busy. We also bumped into a lady we knew from my old children's hospital and she has had her transplant for 15 years, which was so encouraging to hear!
We finally saw the doctor about 11.30am and I'm sure he wasn't amused when I pulled out my list of 'things' I wanted to ask about! I was concerned about the heart rate and he did think it was odd, but wanted to discuss it with the consultant after clinic. It's not really anything to worry about but they can use drugs to slow it down if it is bothering me. It does bother me at night as I can feel it thumping in my chest as I try to get to sleep - however the drugs to slow the heart down (beta blockers) may also make me tired and I don't want that. We will discuss it at my next appointment.
I also explained that I had been coughing a bit lately and could feel and hear some mucus in my chest - this was worrying me because I had this during the last rejection. He said it could still be due to the healing process and wasn't too worried in light of the fact my lung function was up, and I was otherwise feeling ok. They cannot rule out rejection at this stage but they would not do another bronchoscopy so soon after the last one, so there is nothing else to be done at the moment. If I start to feel otherwise unwell I can contact them but I am due back in 3 weeks for my 12 week bronchoscopy anyway so I will be getting checked out soon enough. I will just have to be prepared for a potential stay at my next visit and if all is well it will be a bonus!
I also have been suffering from terrible sinus pain lately, which is quite annoying to say the least. I had major problems with this pre-transplant but at the time it was the least of my worries - now its really bothering me because I feel so well otherwise. I am still taking all the strong painkillers for my wound and this is hardly touching the sinus pain. The doctor said I have to be referred back to the ENT (previously I was too ill for further sinus surgery so was discharged from the clinic) in case there is anything else they can do. The main concern is my sinus infections causing infection in the new lungs, especially since my sinuses harbour all my old CF bugs. I have already phoned my CF team and they are going to refer me now so that we can get the ball rolling.
My final complaint was acid reflux which seems to have got worse since the transplant. Apparently this is quite common and is due to interference with nerves and side effects of medication. I am on high doses of medication for this anyway so not much else can be done. I am still taking part in a study looking at acid reflux post transplant and will be getting more tests in a few weeks to look at this, so I will mention it then. Maybe I should cut down on the coffee - that's bad for reflux. Let's be realistic though - that's just not going to happen ;-)
Otherwise they were really pleased with me - lung function up, weight stable, sats 99%, blood pressure normal and chest sounded good, so I can't ask for much more than that! Gold star for me :-)
Sunday, June 22, 2008
The Wedding
Ardanaiseig HotelI had a wonderful weekend at my friends wedding and I was so pleased that I was able to make it. We travelled up to the hotel on Friday afternoon - the wedding was in an old country house overlooking Loch Awe and it certainly was a beautiful setting. I had left my packing until Friday morning and I cannot begin to tell you how much easier this was compared to before the transplant. The last time I had to pack a few months ago I ended up in tears because I was just so breathless trying to gather all my belongings, not to mention the stress of trying to pack and remember all the medications, oxygen, overnight feeds etc. It really put me off going anywhere because the effort and stress involved almost negated the benefits of getting away. This time it was so easy and apart from my medications I had nothing else to worry about. What a great feeling!
The wedding itself was fairly intimate with around 40 guests, so the whole hotel was booked out for the weekend. Arriving on the Friday was really good in this respect as it allowed the guests to mingle and meet each other before the big day. We had a relaxed afternoon with coffee and scones in the drawing room before we all gathered again for a BBQ in the evening. I know I am not supposed to eat BBQ food, but not too worry because the chef prepared me a special plate with the meat well done so I wasn't taking any risks!
On the Saturday we had all morning to do our own thing so myself and Andrew took a long walk around the hotel grounds, gardens and down to the loch. The grounds were lovely with lots of little paths leading into the woodland, so we had a lovely time just exploring the area. We had some lunch before we got ourselves ready for the ceremony, which due to a fortunate change in weather, was to be held outside by the loch.
Out Exploring
Andrew made me pose for this!
The ceremony itself was lovely - we were all gathered in what I can best describe as a small stone amphitheatre which overlooked the loch. A harpist played as the bride arrived - looking absolutely stunning in a almost mediaeval style dress (I would post a photo but would need to ask for permission first!) The mother of the groom read out a poem she had written for the occasion which was very fitting. After the ceremony we gathered back at the hotel for a champagne reception while the bride and groom had photographs taken.
Loch Awe (view from hotel room)
The meal was amazing - sea bass and scallops for started followed by venison as the main, all of which were beautiful. I polished off all my courses including the large slice of sticky toffee pudding. Andrew says he has never seen me eat so much! The speeches were all very good and plenty of humour kept us amused - I even got a special mention from the brides dad to say they were pleased I could make it - it took me a second to realise they were talking about me, and I was really touched.
After the meal in true Scottish tradition there was a ceilidh band. For those familiar with ceilidh dancing you will know it can be quite energetic to say the least, so I had to be careful because of my wound. I did however manage to get up for one of the more sedate dances, which makes another first since my transplant. I can't even remember when I last danced - it might even had been at my own wedding almost 4 years ago. I have a few more weddings to attend later in the year and I'm sure by that time I will be glued to the dance floor :-)
My new dress
(which makes me look even smaller than normal!)
(which makes me look even smaller than normal!)
We had a nice breakfast this morning before heading back home. I would like to say we have been relaxing but Andrew ended up outside shovelling slate chips and I was unpacking, then repacking for Newcastle tomorrow - no rest for the wicked. I am organised now though, and myself and mum will head off about lunch time tomorrow so we miss the traffic. Clinic is on Tuesday morning so pleased keep everything crossed I get a good report. I am more prepared for an unexpected stay in light of what happened last time, but I do hope we will be heading back up the road on Tuesday afternoon. I will report back as soon as I can :-)
Thursday, June 19, 2008
The art of shopping....again
I thought I would blog today as I am going away tomorrow for the wedding and then on Monday I am travelling down to Newcastle as I have an outpatient appointment on Tuesday morning. I am hoping for a good report and fingers crossed they find no reason to keep me this time. The only thing worrying me is the fact my chest sounded a bit rattly yesterday, and this was one of the only signs I had during the last period of rejection. I am however otherwise feeling well and have no temperature or other worrying signs, so hopefully it's nothing to be concerned about. It is really hard not to over analyse these things though and it can't help but play on my mind. I would be really upset to have another episode of rejection so soon after the first but I will just have to wait and see how I am over the coming days and what my lung function and x-ray are like on Tuesday. I will be due another bronchoscopy in about a month so I'm sure if they are at all concerned they would do that earlier.
Otherwise all is well and I am really looking forward to my friends wedding this weekend. We are staying at the hotel for both the Friday and Saturday as there is a BBQ on the Friday night and then the wedding on the Saturday. The hotel is in beautiful surroundings so hopefully we will get some nice weather! Seb is going to his Granny's for the weekend so he will probably be worried I am leaving him again. He is like my shadow at the moment, following me around the house and trying to get as many walks out of me as possible. He has perfected 'the stare' which he uses when he wants either a walk or a biscuit. It's quite intense - I must try and get a photo of him doing it :-)
I have to confess to some more shopping - but in my defence it was the Debenhams half price sale so it would have been foolish not to go ;-) I got a lovely dress for the wedding which I was really pleased about as I normally have great difficulty getting dresses - mostly because I am between sizes and also because anything that zipped up the back made me feel like I couldn't breathe. Of course I had to get matching shoes but they were my bargain of the week - £35 reduced to £13.50!! I do like a bargain :-) Another couple of tops might have found their way into my basket but I did make sure I got a bigger size so I have room to expand. We were there for hours and when I got home it's the first time I have felt really tired since I got home - shopping should be a sport.
After all that shopping my legs were really achey and I have now developed a new problem - numbness and pins and needles round my ankle. It's the same side as I had the foot pain on so I guess it is probably related. Unfortunately walking makes it worse but I really want to keep up with the walking to improve my fitness. Any advice or ideas from my medic friends is very welcome - please leave a comment!
I probably wont post until I come back from Newcastle, unless I have time on Monday. I will update with the outcome of my clinic appointment once I am home - fingers crossed its all good news.
I thought I would blog today as I am going away tomorrow for the wedding and then on Monday I am travelling down to Newcastle as I have an outpatient appointment on Tuesday morning. I am hoping for a good report and fingers crossed they find no reason to keep me this time. The only thing worrying me is the fact my chest sounded a bit rattly yesterday, and this was one of the only signs I had during the last period of rejection. I am however otherwise feeling well and have no temperature or other worrying signs, so hopefully it's nothing to be concerned about. It is really hard not to over analyse these things though and it can't help but play on my mind. I would be really upset to have another episode of rejection so soon after the first but I will just have to wait and see how I am over the coming days and what my lung function and x-ray are like on Tuesday. I will be due another bronchoscopy in about a month so I'm sure if they are at all concerned they would do that earlier.
Otherwise all is well and I am really looking forward to my friends wedding this weekend. We are staying at the hotel for both the Friday and Saturday as there is a BBQ on the Friday night and then the wedding on the Saturday. The hotel is in beautiful surroundings so hopefully we will get some nice weather! Seb is going to his Granny's for the weekend so he will probably be worried I am leaving him again. He is like my shadow at the moment, following me around the house and trying to get as many walks out of me as possible. He has perfected 'the stare' which he uses when he wants either a walk or a biscuit. It's quite intense - I must try and get a photo of him doing it :-)
I have to confess to some more shopping - but in my defence it was the Debenhams half price sale so it would have been foolish not to go ;-) I got a lovely dress for the wedding which I was really pleased about as I normally have great difficulty getting dresses - mostly because I am between sizes and also because anything that zipped up the back made me feel like I couldn't breathe. Of course I had to get matching shoes but they were my bargain of the week - £35 reduced to £13.50!! I do like a bargain :-) Another couple of tops might have found their way into my basket but I did make sure I got a bigger size so I have room to expand. We were there for hours and when I got home it's the first time I have felt really tired since I got home - shopping should be a sport.
After all that shopping my legs were really achey and I have now developed a new problem - numbness and pins and needles round my ankle. It's the same side as I had the foot pain on so I guess it is probably related. Unfortunately walking makes it worse but I really want to keep up with the walking to improve my fitness. Any advice or ideas from my medic friends is very welcome - please leave a comment!
I probably wont post until I come back from Newcastle, unless I have time on Monday. I will update with the outcome of my clinic appointment once I am home - fingers crossed its all good news.
Tuesday, June 17, 2008
Random update
I am continuing to get stronger by the day and slowly but surely am starting to get some fitness back. Don't get me wrong, my legs still ache even when walking on the flat, but it is gradually getting easier. I am taking Seb out twice a day for 20-25 minutes, which I think is quite good even by a 'normal' persons standards! At the weekend we went for a long walk at the country park and poor Seb nearly keeled over at the end - he kept just lying down if we paused for a moment and once we got home he was unconscious for the rest of the day. With those tiny legs he isn't really built for distance walking. The good news is that my foot has been fine since I got my new trainers, although the last two days I have had sore knees!! I'm not sure if its CF related joint pain which I suffer from occasionally, or if its just the extra strain I am putting them under. I suspect the latter, which should improve as my leg muscles get stronger and can support my knees better. I will probably be complaining about my hips by the next blog.
I went home on Sunday for Fathers Day, which was really nice as that's the first time I have been home since my transplant and for the first time in ages we could park at the front of the house and I could walk up the steps (Andrew used to drop me round the back as I couldn't manage the stairs). We had a nice dinner and I managed to catch up with my aunt and uncle, two of my cousins and my next door neighbour (as well as my dad obviously!) It was great seeing everyone and I'm sure they would have been pleasantly surprised by how well I look :-)
The slate for our rockery didn't arrive last week so Andrew was spared the task of moving it over the weekend. He did continue with the garden bench repair though, so I did manage to keep him busy. We need a bit of metal to support the middle of the bench, as the original piece is broken. My dad however is currently fashioning a replacement piece for us using some piece of metal he had in his 'stores' - anyone who knows my dad will understand that he ALWAYS has 'something that will do the job' hidden away in his garage, workshop, hut, basement....he has many hiding places ;-)
Worryingly I seem to be turning into an amalgamation of my mum and dad. Like my dad I have been getting up at the crack of dawn (7am most mornings) and like my mum I have continued to with the baking and cooking. It's quite scary really. I did have a baking disaster at the weekend when I forgot to put sugar in the fruit loaves but the birds have been enjoying it since. I have also been trying out various recipes that use the herbs we have bought (I think we have every herb that the garden centre sold!). The mint plant was taking over so yesterday I made pea and mint soup. It sounds a bit funny but it was actually really nice and I would make it again. I have also discovered that I shouldn't be allowed to use sharp instruments as so far, this week, I have cut myself three times - with a knife, my razor and the hand blender. I have been going through plasters at some rate. Just as well I'm not a chef.
Seb is still enjoying the new me, and I have become his new favourite person - I'm sure the novelty will soon wear off. We decided to give him a bath last night (not sure when he last had one as I was to breathless to help and it's a two man operation). He was very good and just stood there looking a bit pathetic. I decided as a treat for behaving he could have a tripe stick afterwards. Well that was the worst idea I've had in a while - he took the tripe stick and proceeded to roll about on top of it until he was sure that he smelt like tripe all over! I couldn't believe it - all that effort giving him a bath and now he smells like tripe. You live and learn.
Healthwise, everything seems to be on track. The blood sugars are improving with bigger doses of insulin, my weight is slowly creeping up and my chest feels great. I have been getting problems with my sinuses again, which is really disappointing but I am trying to do nasal washes everyday to help this. I used to have a wee machine for this but I am paranoid it has bugs growing in it, so instead have bought something called a 'neti pot' or 'rhino horn', which is basically like a wee plastic teapot that you fill with warm salty water and pour into your nostril. If you tip your head correctly the water flows in one side and out the other (it doesn't go down your throat) and it's supposed to be really good for keeping sinuses clear. My ENT recommended a similar thing years ago, so its not as daft as it sounds and I am hoping it will keep the sinus pain at a manageable level. The only other health thing that is bothering me is the side effects of the steroids, as my face is starting to get the puffy hamster cheeks! I was complaining about this at the weekend when mum helpful said 'well it doesn't look too bad when your hair is over your face'. I'm sure that's not exactly how she meant it to come out! I'm hoping when my steroid dose is lower this will get better, although I suspect I'm stuck with it for a while. I suppose there is a price to pay and I would rather have a fat face and lungs that work so I have to keep things in perspective. I don't have to like it though!
Some random squirrels ....
I am continuing to get stronger by the day and slowly but surely am starting to get some fitness back. Don't get me wrong, my legs still ache even when walking on the flat, but it is gradually getting easier. I am taking Seb out twice a day for 20-25 minutes, which I think is quite good even by a 'normal' persons standards! At the weekend we went for a long walk at the country park and poor Seb nearly keeled over at the end - he kept just lying down if we paused for a moment and once we got home he was unconscious for the rest of the day. With those tiny legs he isn't really built for distance walking. The good news is that my foot has been fine since I got my new trainers, although the last two days I have had sore knees!! I'm not sure if its CF related joint pain which I suffer from occasionally, or if its just the extra strain I am putting them under. I suspect the latter, which should improve as my leg muscles get stronger and can support my knees better. I will probably be complaining about my hips by the next blog.
I went home on Sunday for Fathers Day, which was really nice as that's the first time I have been home since my transplant and for the first time in ages we could park at the front of the house and I could walk up the steps (Andrew used to drop me round the back as I couldn't manage the stairs). We had a nice dinner and I managed to catch up with my aunt and uncle, two of my cousins and my next door neighbour (as well as my dad obviously!) It was great seeing everyone and I'm sure they would have been pleasantly surprised by how well I look :-)
The slate for our rockery didn't arrive last week so Andrew was spared the task of moving it over the weekend. He did continue with the garden bench repair though, so I did manage to keep him busy. We need a bit of metal to support the middle of the bench, as the original piece is broken. My dad however is currently fashioning a replacement piece for us using some piece of metal he had in his 'stores' - anyone who knows my dad will understand that he ALWAYS has 'something that will do the job' hidden away in his garage, workshop, hut, basement....he has many hiding places ;-)
Worryingly I seem to be turning into an amalgamation of my mum and dad. Like my dad I have been getting up at the crack of dawn (7am most mornings) and like my mum I have continued to with the baking and cooking. It's quite scary really. I did have a baking disaster at the weekend when I forgot to put sugar in the fruit loaves but the birds have been enjoying it since. I have also been trying out various recipes that use the herbs we have bought (I think we have every herb that the garden centre sold!). The mint plant was taking over so yesterday I made pea and mint soup. It sounds a bit funny but it was actually really nice and I would make it again. I have also discovered that I shouldn't be allowed to use sharp instruments as so far, this week, I have cut myself three times - with a knife, my razor and the hand blender. I have been going through plasters at some rate. Just as well I'm not a chef.
Seb is still enjoying the new me, and I have become his new favourite person - I'm sure the novelty will soon wear off. We decided to give him a bath last night (not sure when he last had one as I was to breathless to help and it's a two man operation). He was very good and just stood there looking a bit pathetic. I decided as a treat for behaving he could have a tripe stick afterwards. Well that was the worst idea I've had in a while - he took the tripe stick and proceeded to roll about on top of it until he was sure that he smelt like tripe all over! I couldn't believe it - all that effort giving him a bath and now he smells like tripe. You live and learn.
Healthwise, everything seems to be on track. The blood sugars are improving with bigger doses of insulin, my weight is slowly creeping up and my chest feels great. I have been getting problems with my sinuses again, which is really disappointing but I am trying to do nasal washes everyday to help this. I used to have a wee machine for this but I am paranoid it has bugs growing in it, so instead have bought something called a 'neti pot' or 'rhino horn', which is basically like a wee plastic teapot that you fill with warm salty water and pour into your nostril. If you tip your head correctly the water flows in one side and out the other (it doesn't go down your throat) and it's supposed to be really good for keeping sinuses clear. My ENT recommended a similar thing years ago, so its not as daft as it sounds and I am hoping it will keep the sinus pain at a manageable level. The only other health thing that is bothering me is the side effects of the steroids, as my face is starting to get the puffy hamster cheeks! I was complaining about this at the weekend when mum helpful said 'well it doesn't look too bad when your hair is over your face'. I'm sure that's not exactly how she meant it to come out! I'm hoping when my steroid dose is lower this will get better, although I suspect I'm stuck with it for a while. I suppose there is a price to pay and I would rather have a fat face and lungs that work so I have to keep things in perspective. I don't have to like it though!
Some random squirrels ....
Thursday, June 12, 2008
Shopping
I seem to have been spending a lot of money this week. I'm really just making up for lost time, but I think the sooner I get back to work the better ;-) It started with a trip to Tiso's earlier this week to get myself some decent walking trainers. My foot was still giving me a lot of bother and I didn't want to risk doing myself a longer term injury. I took advice from the nice man in the shop and tried on several pairs before settling on the most expensive ones. Obviously. They have been much better for walking in though and my foot is really improving now. My legs still get really sore walking but I guess it's going to take several months at least to build up my muscles - considering it took them at least two years to deteriorate as much as they did. My lungs however are coping so well, and I do feel much less breathless than I did before the high dose steroids. I don't know if this means the rejection was impacting on my lung function, or whether I am just finding things easier as the new lungs settle down more. Either way, it all seems to be going in the right direction.
Yesterday I dragged mum to the shops as I had a gift voucher which was about to expire - calling for an emergency shopping trip. We went to an outdoor shopping centre so it would be easier to avoid crowds of people, but the shops were quiet anyway so it wasn't a problem. I didn't really want to buy any new clothes at this stage as I don't know what weight I will stabilise at (still putting a bit on just now). I did however manage to purchase two pairs of shoes and some nice beaded jewellery. I successfully spent all my vouchers (..and some) and really enjoyed my first shopping trip! The last time I was at the shops was before Christmas, and mum took me in the wheelchair. At the time I thought it was quite a distance we had covered, but yesterday when I was walking I realised it wasn't very far at all. Funny how quickly your perspective on things can change. It was so great to be able to wander around without getting tired and breathless, or trying to tell mum which direction to push me in the chair (and getting stuck between clothes rails etc). It also meant that mum could look at things too, instead of having to worry about me. I could try things on if I wanted, where are I had got to the stage of just buying things and hoping they would fit, as it made me far to breathless getting changed. I am looking forward to a wee spree when my weight is settled...I better start saving now!
I did something really amazing yesterday - I RAN!! Ok, it was for about 10 seconds and my legs nearly seized up, but I did it! I don't think I am meant to be running about at this stage (too much pressure through the wound) but I was walking Seb round the playing fields and he kept stopping to sniff, which gets really annoying - so the only way you can get him going is to start running, and then he flies along after you. I have seen Andrew do this many times, but its something I obviously would never have done before - but yesterday I just thought 'why not?!' and why not indeed. I don't think I will be taking up running mind you, but it was just the fact that the impossible is now possible. It's hard to believe sometimes :-)
The garden plans are coming along nicely, and we have now ordered tons of slate for the rockery and a greenhouse. I think Andrew is going to be busy for the rest of the summer. Although I have to be careful with soil, I should be ok to potter about in the greenhouse and am looking forward to learning about about what plants and veg I can grow. I sound very middle aged I think - I must keep a check on that!
I will leave you with some recent bird photos...
I seem to have been spending a lot of money this week. I'm really just making up for lost time, but I think the sooner I get back to work the better ;-) It started with a trip to Tiso's earlier this week to get myself some decent walking trainers. My foot was still giving me a lot of bother and I didn't want to risk doing myself a longer term injury. I took advice from the nice man in the shop and tried on several pairs before settling on the most expensive ones. Obviously. They have been much better for walking in though and my foot is really improving now. My legs still get really sore walking but I guess it's going to take several months at least to build up my muscles - considering it took them at least two years to deteriorate as much as they did. My lungs however are coping so well, and I do feel much less breathless than I did before the high dose steroids. I don't know if this means the rejection was impacting on my lung function, or whether I am just finding things easier as the new lungs settle down more. Either way, it all seems to be going in the right direction.
Yesterday I dragged mum to the shops as I had a gift voucher which was about to expire - calling for an emergency shopping trip. We went to an outdoor shopping centre so it would be easier to avoid crowds of people, but the shops were quiet anyway so it wasn't a problem. I didn't really want to buy any new clothes at this stage as I don't know what weight I will stabilise at (still putting a bit on just now). I did however manage to purchase two pairs of shoes and some nice beaded jewellery. I successfully spent all my vouchers (..and some) and really enjoyed my first shopping trip! The last time I was at the shops was before Christmas, and mum took me in the wheelchair. At the time I thought it was quite a distance we had covered, but yesterday when I was walking I realised it wasn't very far at all. Funny how quickly your perspective on things can change. It was so great to be able to wander around without getting tired and breathless, or trying to tell mum which direction to push me in the chair (and getting stuck between clothes rails etc). It also meant that mum could look at things too, instead of having to worry about me. I could try things on if I wanted, where are I had got to the stage of just buying things and hoping they would fit, as it made me far to breathless getting changed. I am looking forward to a wee spree when my weight is settled...I better start saving now!
I did something really amazing yesterday - I RAN!! Ok, it was for about 10 seconds and my legs nearly seized up, but I did it! I don't think I am meant to be running about at this stage (too much pressure through the wound) but I was walking Seb round the playing fields and he kept stopping to sniff, which gets really annoying - so the only way you can get him going is to start running, and then he flies along after you. I have seen Andrew do this many times, but its something I obviously would never have done before - but yesterday I just thought 'why not?!' and why not indeed. I don't think I will be taking up running mind you, but it was just the fact that the impossible is now possible. It's hard to believe sometimes :-)
The garden plans are coming along nicely, and we have now ordered tons of slate for the rockery and a greenhouse. I think Andrew is going to be busy for the rest of the summer. Although I have to be careful with soil, I should be ok to potter about in the greenhouse and am looking forward to learning about about what plants and veg I can grow. I sound very middle aged I think - I must keep a check on that!
I will leave you with some recent bird photos...
Coal tit
Chaffinch
Blue tit
Monday, June 09, 2008
Keeping Busy
Well, I had quite a busy weekend buzzing about and not really resting :-) I had Andrew up early on Saturday again, so we could take Seb back up to the country park, which he absolutely loves. We did the same route as last time, but the other way round. Unfortunately there was a lot more walking uphill this way, so my wee legs did suffer but the lungs coped remarkably well. I just can't explain how wonderful it is to be able to walk again....just taking Seb for a walk along the road makes me feel so happy inside! Having poor health for so long and then being given this second chance really does make you appreciate the smaller things in life and I hope I never lose sight of that.
I have also been doing more baking - this time scones and fruit loaves. Courtesy of all this high calorie food I seem to have put some weight on! Hopefully this will continue and I will be at my target weight in no time - then I will probably be worrying about piling the pounds on. I have also been doing a lot of the cooking, which I have not really been doing over the past year. Even something as simple as putting things in the oven seemed like a mammoth task. I actually thought I didn't enjoy cooking and was not looking forward to it post transplant. However I now realise that it was more to do with the fact I found it so exhausting, coupled with the fact I NEVER felt hungry, so couldn't really care less what we had for dinner. I would rarely finish my dinner and eating was a huge chore, as well as being something that made me breathless. Now my appetite is slowly returning and I am starting to enjoy food again, so I actually don't mind cooking and would even go as far as saying I quite enjoy it. I have even been experimenting with the herbs we bought for the garden, although at this stage it's very much trial and error. I have no clue what I am doing, but at least it sounds good ;-)
Yesterday I went to the supermarket for the first time (in about a year). We had to go at 9am though, so it wasn't busy as I still have to avoid crowds. It was weird being able to move about and not hang onto the trolley, which is what I would normally do - in fact the last time I went to the supermarket I had the oxygen cylinder in the trolley so I could push it about. How things have changed! I must admit that I still hate food shopping and plan to continue doing it online, but it was nice to at least have a choice about going and not leaving it all to Andrew. I'm sure there will be a great many 'firsts' in the coming months and I am enjoying each one of them.
Seb has been enjoying all the walks but is now expecting a lot more from me. He doesn't like when I am moving around the house and not paying him any attention. When I was baking yesterday he insisted on sitting right in the middle of the kitchen, so that I had to continually walk round him. Then he moved to the front door and sat there looking up at his lead, as if to tell me a walk was in order. Later on I decided to have a shower and left Seb curled up in his basket. As I was getting dressed I heard an intent scratching on the bathroom door. I opened the door and Seb was standing there looking at me, before he quickly dived into the bathroom, grabbed my slipper and ran off. I think we could call that attention seeking behaviour! He has however been busy most of the weekend with the giant bone I got him. He can hardly carry it but has insisted on taking it around with him, even out into the garden and back into the house. At one point he even went to sleep with the bone safely tucked under his paws...it's quite cute in a strange sort of way.
Well, I had quite a busy weekend buzzing about and not really resting :-) I had Andrew up early on Saturday again, so we could take Seb back up to the country park, which he absolutely loves. We did the same route as last time, but the other way round. Unfortunately there was a lot more walking uphill this way, so my wee legs did suffer but the lungs coped remarkably well. I just can't explain how wonderful it is to be able to walk again....just taking Seb for a walk along the road makes me feel so happy inside! Having poor health for so long and then being given this second chance really does make you appreciate the smaller things in life and I hope I never lose sight of that.
I have also been doing more baking - this time scones and fruit loaves. Courtesy of all this high calorie food I seem to have put some weight on! Hopefully this will continue and I will be at my target weight in no time - then I will probably be worrying about piling the pounds on. I have also been doing a lot of the cooking, which I have not really been doing over the past year. Even something as simple as putting things in the oven seemed like a mammoth task. I actually thought I didn't enjoy cooking and was not looking forward to it post transplant. However I now realise that it was more to do with the fact I found it so exhausting, coupled with the fact I NEVER felt hungry, so couldn't really care less what we had for dinner. I would rarely finish my dinner and eating was a huge chore, as well as being something that made me breathless. Now my appetite is slowly returning and I am starting to enjoy food again, so I actually don't mind cooking and would even go as far as saying I quite enjoy it. I have even been experimenting with the herbs we bought for the garden, although at this stage it's very much trial and error. I have no clue what I am doing, but at least it sounds good ;-)
Yesterday I went to the supermarket for the first time (in about a year). We had to go at 9am though, so it wasn't busy as I still have to avoid crowds. It was weird being able to move about and not hang onto the trolley, which is what I would normally do - in fact the last time I went to the supermarket I had the oxygen cylinder in the trolley so I could push it about. How things have changed! I must admit that I still hate food shopping and plan to continue doing it online, but it was nice to at least have a choice about going and not leaving it all to Andrew. I'm sure there will be a great many 'firsts' in the coming months and I am enjoying each one of them.
Seb has been enjoying all the walks but is now expecting a lot more from me. He doesn't like when I am moving around the house and not paying him any attention. When I was baking yesterday he insisted on sitting right in the middle of the kitchen, so that I had to continually walk round him. Then he moved to the front door and sat there looking up at his lead, as if to tell me a walk was in order. Later on I decided to have a shower and left Seb curled up in his basket. As I was getting dressed I heard an intent scratching on the bathroom door. I opened the door and Seb was standing there looking at me, before he quickly dived into the bathroom, grabbed my slipper and ran off. I think we could call that attention seeking behaviour! He has however been busy most of the weekend with the giant bone I got him. He can hardly carry it but has insisted on taking it around with him, even out into the garden and back into the house. At one point he even went to sleep with the bone safely tucked under his paws...it's quite cute in a strange sort of way.
Friday, June 06, 2008
My energy levels have been a bit better over the last couple of days - probably helped by not drinking coffee after dinner, which always stops me getting to sleep at a normal hour. You would think I would have learnt by now. I have been up bright and early the past few mornings and am really not sure what to do with all this extra time! Mum is still coming through most days to keep me out of trouble and help with all the housework that I am not allowed to do just now (shame). It will be easier when I am allowed into crowded places though, because then we can get out and about a bit more. I've had a friend over yesterday and it was so good to catch up and not worry about getting breathless or tired and be able to just relax and enjoy the chat. I think I could get used to a life of lunching and meeting for coffee :-)
The peg tube removal has continued to be a great success and I have had no problems at all since I took it out. Unfortunately my weight still appears to be drifting downwards, so some hard action may be required. I asked the GP to prescribe me some high calories drinks which I will try and take every day and have set myself the deadline of my next clinic appointment (2 1/2 weeks away) to put on some weight. If I haven't by then I will probably resort to the overnight NG feeding for a while because I really can't afford to let things slide at this stage. I have however still been baking quite a lot, and did manage to devour an entire tray of flapjacks over 2 days. They were rather good if I do say so myself :-) The blood sugars are still a bit random but this will settle as my dose of steroids comes down in the next few weeks, so I'm sure this will also help with the weight gain.
The good news is that my foot is a bit better, although it still quite sore to walk on. My mums friend is a physio (hello Irene!) and has given me some advice and exercises I can do, so hopefully that will settle down soon. I am just taking Seb for two shorter walks a day so that I don't put too much strain on it. Seb appears very happy with this arrangement, and in fact was so tired last night he refused to go out with Andrew. Fussy wee thing.
Otherwise, I seem to be getting on really well and gradually building up my stamina. I did give myself a fright this morning when I checked my temperature (which I have to do twice daily) and found it significantly raised, which is a warning sign of infection or rejection. I then realised that I had just finished my coffee and my mouth was still hot! I double checked with the good old fashioned underarm mercury thermometer and my temperature was absolutely fine. What a dafty.
Well my friend is coming over for lunch, so I am away to make some soup. My mum will be so proud...
The peg tube removal has continued to be a great success and I have had no problems at all since I took it out. Unfortunately my weight still appears to be drifting downwards, so some hard action may be required. I asked the GP to prescribe me some high calories drinks which I will try and take every day and have set myself the deadline of my next clinic appointment (2 1/2 weeks away) to put on some weight. If I haven't by then I will probably resort to the overnight NG feeding for a while because I really can't afford to let things slide at this stage. I have however still been baking quite a lot, and did manage to devour an entire tray of flapjacks over 2 days. They were rather good if I do say so myself :-) The blood sugars are still a bit random but this will settle as my dose of steroids comes down in the next few weeks, so I'm sure this will also help with the weight gain.
The good news is that my foot is a bit better, although it still quite sore to walk on. My mums friend is a physio (hello Irene!) and has given me some advice and exercises I can do, so hopefully that will settle down soon. I am just taking Seb for two shorter walks a day so that I don't put too much strain on it. Seb appears very happy with this arrangement, and in fact was so tired last night he refused to go out with Andrew. Fussy wee thing.
Otherwise, I seem to be getting on really well and gradually building up my stamina. I did give myself a fright this morning when I checked my temperature (which I have to do twice daily) and found it significantly raised, which is a warning sign of infection or rejection. I then realised that I had just finished my coffee and my mouth was still hot! I double checked with the good old fashioned underarm mercury thermometer and my temperature was absolutely fine. What a dafty.
Well my friend is coming over for lunch, so I am away to make some soup. My mum will be so proud...
Wednesday, June 04, 2008
Trying to take it easy..
I've been feeling quite tired the past few days, but suspect it's just the comparison with how much energy IV steroids give you. Also add the fact I really can't sit back and relax and feel like I should be doing something all the time. I haven't watched any TV since I have been home because I just can't stay still long enough and my mind is constantly whirring and I seem to be constantly pottering around the house, without realising how much energy this uses up. I felt very much like this after my false alarm as well, so it's really like my body and mind has been in high gear for the past 3 months. I am now making the concerted effort to calm down and give my self a chance to heal. Hopefully the weather will pick up soon and I can sit in the garden and read (not lift heavy watering cans).
I did do a little painting at the weekend when the expected hot weather did not materialise. The only problem I found was that my tremor (side effect of anti rejections) became much worse when I was painting, which made intricate detail much harder. Hopefully this will settle down soon, or I will just have to resort to painting giant canvases using industrial sized paintbrushes. Could prove interesting.
I have continued to walk Seb every day, although finding it really variable in difficulty despite doing the same route. I am walking for about 20 minutes, although that does include a great deal of stopping to allow Seb to sniff every tree and lamp post. I do have a tendency to worry whenever I find it hard going because I am aware that I didn't pick up the subtlety of the acute rejection last week so am now a little hyper vigilant for any signs. I think I just have to accept that some days it will be harder, depending on what else I have been doing, how much sleep I've had and how fast Seb decided to walk! I did do a lovely long walk (about 40minutes) at the country park on Sunday morning - dragging Andrew out of bed and arriving at the park just after 9am. He says he preferred it when I liked a long lie at the weekend. It was a lovely sunny morning though, so would have been a shame to miss out. Seb was absolutely exhilarated by the experience - he was diving about, running at all the dogs and generally behaving like a dog that had never seen the outside world before. Needless to say it was all a bit much for him and he spent the rest of the day fast asleep ..but very happy. Unfortunately since this walk I have developed a really sore foot - pain in my heel shooting down the sole of my foot. My self diagnosis is Plantar Fasciitis, which basically means I have strained the fibrous band of tissue that runs along the sole of your foot. One of the commonest causes is doing activity you are not used to, which sounds pretty much spot on. I have bought wee cushion things for the heel of my trainers but they aren't really helping and from what I understand you should really rest the foot but this is kind of difficult when I am meant to be exercising! I will just keep my fingers crossed that it eases up soon, because I really am hobbling like an old woman.
On a cheery note, I had the great pleasure of removing my peg tube at the weekend. The pain disappeared instantly when I removed the tube, and I have had no pain at all from it since! It also has not been leaking as I thought it would and appears to be nearly closed over already. It does however look like I now have two belly buttons which is quite amusing, in a strange sort of way. The only problem is that I still haven't put any weight on, and in fact when I weighed myself this morning I appear to have lost a kilo. I really don't want to resort to NG feeding at this stage, so plan to get a supply of the high calorie supplement drinks to see if those help. I am eating ok (although appetite not great) but I do wonder if the period of rejection has been on reason that I haven't gained weight and also the fact the high dose steroids have sent my blood sugars haywire again. I have been baking myself lots of goodies and trying to drink lots of full fat milk, so it's just a case of perseverance and I'm sure I will get there.
In response to my question and answer post, Emmie was asking me how Seb has been acting since my transplant. He was pleased to see my home, which did surprise me. I am used to the cold shoulder treatment when I have been away, but maybe he knew this time it was different. At first he was really quite suspicious and confused by the fact I kept moving around the house instead of just sitting on the sofa and he followed me around for a few days, wanting to keep an eye on what I was doing and generally being quite unsettled. He was also rather overexcited every time I took him for walk, as it was so novel. He has however adapted very quickly and is now expecting a walk and harassing me to do so. He comes and sits and gives me 'the stare', sometimes pawing my foot or just standing at the front door indicating he would like to go out somewhere. It is difficult to ignore him! He is also now fine about me moving around the house and doesn't really pay much attention to what I am doing, unless he sees me putting my trainers on and thinks he is going for a walk. My trainers have velcro on them, which he can actually hear from the garden!! He comes bombing into the house whenever he hears the velcro, so I have to try and do it really quietly if I'm not taking him out. He is a funny dog.
Well, I am off to sit in the garden now, as it looks nice and sunny. I wonder how long I can sit still for...
I've been feeling quite tired the past few days, but suspect it's just the comparison with how much energy IV steroids give you. Also add the fact I really can't sit back and relax and feel like I should be doing something all the time. I haven't watched any TV since I have been home because I just can't stay still long enough and my mind is constantly whirring and I seem to be constantly pottering around the house, without realising how much energy this uses up. I felt very much like this after my false alarm as well, so it's really like my body and mind has been in high gear for the past 3 months. I am now making the concerted effort to calm down and give my self a chance to heal. Hopefully the weather will pick up soon and I can sit in the garden and read (not lift heavy watering cans).
I did do a little painting at the weekend when the expected hot weather did not materialise. The only problem I found was that my tremor (side effect of anti rejections) became much worse when I was painting, which made intricate detail much harder. Hopefully this will settle down soon, or I will just have to resort to painting giant canvases using industrial sized paintbrushes. Could prove interesting.
I have continued to walk Seb every day, although finding it really variable in difficulty despite doing the same route. I am walking for about 20 minutes, although that does include a great deal of stopping to allow Seb to sniff every tree and lamp post. I do have a tendency to worry whenever I find it hard going because I am aware that I didn't pick up the subtlety of the acute rejection last week so am now a little hyper vigilant for any signs. I think I just have to accept that some days it will be harder, depending on what else I have been doing, how much sleep I've had and how fast Seb decided to walk! I did do a lovely long walk (about 40minutes) at the country park on Sunday morning - dragging Andrew out of bed and arriving at the park just after 9am. He says he preferred it when I liked a long lie at the weekend. It was a lovely sunny morning though, so would have been a shame to miss out. Seb was absolutely exhilarated by the experience - he was diving about, running at all the dogs and generally behaving like a dog that had never seen the outside world before. Needless to say it was all a bit much for him and he spent the rest of the day fast asleep ..but very happy. Unfortunately since this walk I have developed a really sore foot - pain in my heel shooting down the sole of my foot. My self diagnosis is Plantar Fasciitis, which basically means I have strained the fibrous band of tissue that runs along the sole of your foot. One of the commonest causes is doing activity you are not used to, which sounds pretty much spot on. I have bought wee cushion things for the heel of my trainers but they aren't really helping and from what I understand you should really rest the foot but this is kind of difficult when I am meant to be exercising! I will just keep my fingers crossed that it eases up soon, because I really am hobbling like an old woman.
Me at country park
On a cheery note, I had the great pleasure of removing my peg tube at the weekend. The pain disappeared instantly when I removed the tube, and I have had no pain at all from it since! It also has not been leaking as I thought it would and appears to be nearly closed over already. It does however look like I now have two belly buttons which is quite amusing, in a strange sort of way. The only problem is that I still haven't put any weight on, and in fact when I weighed myself this morning I appear to have lost a kilo. I really don't want to resort to NG feeding at this stage, so plan to get a supply of the high calorie supplement drinks to see if those help. I am eating ok (although appetite not great) but I do wonder if the period of rejection has been on reason that I haven't gained weight and also the fact the high dose steroids have sent my blood sugars haywire again. I have been baking myself lots of goodies and trying to drink lots of full fat milk, so it's just a case of perseverance and I'm sure I will get there.
In response to my question and answer post, Emmie was asking me how Seb has been acting since my transplant. He was pleased to see my home, which did surprise me. I am used to the cold shoulder treatment when I have been away, but maybe he knew this time it was different. At first he was really quite suspicious and confused by the fact I kept moving around the house instead of just sitting on the sofa and he followed me around for a few days, wanting to keep an eye on what I was doing and generally being quite unsettled. He was also rather overexcited every time I took him for walk, as it was so novel. He has however adapted very quickly and is now expecting a walk and harassing me to do so. He comes and sits and gives me 'the stare', sometimes pawing my foot or just standing at the front door indicating he would like to go out somewhere. It is difficult to ignore him! He is also now fine about me moving around the house and doesn't really pay much attention to what I am doing, unless he sees me putting my trainers on and thinks he is going for a walk. My trainers have velcro on them, which he can actually hear from the garden!! He comes bombing into the house whenever he hears the velcro, so I have to try and do it really quietly if I'm not taking him out. He is a funny dog.
Well, I am off to sit in the garden now, as it looks nice and sunny. I wonder how long I can sit still for...
Me and Seb pretending its sunny enough to sit out (note how seb has own chair!)
Monday, June 02, 2008
TRANSPLANT - QUESTION AND ANSWER!
OK, here are some of the questions I have been asked...and some I know you want to ask but don't know how to (be warned - it's long!)
Do I still have Cystic Fibrosis?
The lungs that I now have are genetically different so they DO NOT have the CF gene and will never develop CF.
CF however is a multi organ disease, so I still have CF in the rest of my body - most of the effects are due to the sticky mucus associated with CF. This affects mainly the pancreas - so I need enzymes to digest my food, take vitamins that I cannot otherwise absorb and have CF related diabetes. It also affects the gut, causing cramps and blockages at times and also acid reflux, so I take medication for these problems. I also have osteoporosis (thinning of the bones) related to CF - this doesn't cause me noticeable problems and I just have to take some medication to keep my bones strong. The mucus in my sinuses is still sticky and harbouring various bugs, so I will still be prone to my usual bouts of sinusitis and I also occasionally suffer from CF related joint pain - however this was mostly during infections so I am hoping that will not be a problem now. People with CF can also have liver problems however I luckily have NO problems in this area. I will continue to see my local CF team for these issues, but won't need to see them nearly as much as pre transplant.
As you can see CF is quite a complex condition and certainly not just a 'lung disease'. However I have always been mostly affected by the lung component and compared to other people with CF am relatively lucky in the other areas. To not have CF lungs anymore will make a huge difference to my quality of life, and is something I have only dreamt of before.
Can I still get a chest infection?
Yes, I can still get a chest infection like any non- CF person, and will be at slightly greater risk due to my immunosuppression - but not because there is anything wrong with my lungs. The main issue in CF transplants is that you still harbour your old bugs in the sinuses and upper airway (where they attached the new lungs). This means that there is always a risk of infecting the new lungs with bacteria I previously carried. However this will not have the same effect as it did in CF lungs, because I don't have the thick mucus which provided the ideal breeding ground. I will continue to take nebulised antibiotics twice a day to try and prevent reinfection but may need oral or IV antibiotics in future if I did grow any bugs in the new lungs. I don't fully know the long term implications of this, but understand that it can be fairly common and will be tackled if it arises so I will not worry about that for the time being.
What was it like to breathe after the transplant? Did it feel deeper?
When I initially woke up it did not feel any different - because of the pain preventing deep breathing and the new lungs needing time to settle in. The feeling of restriction around my chest has only just started to lift now (5 weeks post transplant) and I now feel like I can breathe deeply. This is most noticeable when exercising, because I previously felt 'air hungry' like I just couldn't get enough air into my lungs, where as when I get breathless I am breathing deep long breaths and can recover quickly. Someone also asked if my lungs felt different because they were not full of mucus - the answer is yes! Part of the reason however is that the nerves to the lungs have been cut, so I actually have no/little feedback from my lungs and do not feel when there is mucus, unless it is in my main airway (which is still my own, with intact nerve supply). I therefore am advised to do some deep breathing every day and cough to make sure there is no mucus lurking. It does however feel amazing to have a clear chest and not have physio to do - it is so much easier to sleep without all the coughing, and I don't have to worry about clearing my chest every day, which was a major task, especially towards the end of my time on the list, when it was exhausting and felt never ending I could have done physio all day and still not cleared my chest - it was a big task. It's a lovely feeling to have a clear chest and possibly the best bit of the transplant so far!
How long does a transplant last?
Unfortunately a transplant is not a cure but its aim is to increase life expectancy and improve quality of life. The general statistics quoted are that 80% survive the first year, and 50% survive 5 years. However, Newcastle showed me unpublished data two years ago at my assessment where they had taken only the CF patients statistics and the data showed 80-90% 1 year survival, 70% 5 year survival and 50% 10 year survival. CF patients probably do better because they are used to drug regimes so comply with anti-rejection medications and also because they are younger, so therefore otherwise fitter than the average transplant patient. Also to note, is that the data must be at least 10 years old, so survival data on transplants today will hopefully be much better. I have heard of people doing well 15 years and I certainly aim to top that! If you compare this to the expected 50% two year survival quoted for people placed on the transplant list and the fact only 50% of people waiting actually get a transplant, then the odds are now in my favour :-)
Can you get a second transplant?
It is possible for some people to get a second transplant if the need arises - but very rare. The information I was given said that medical issues arising from the original surgery will often prevent further transplantation. It is something that can however be evaluated if need be, but would be a last resort and not something I need concern myself with at the moment.
Why is life expectancy still reduced?
One of the most common reasons for transplant failure is people not taking their anti-rejection medications properly. Hard to believe I know! With all the alarms I have set on my mobile phone, there is no chance I will miss any doses. In the first year the biggest risk is from infection and acute rejection, the latter actually being easier to treat. The risk of infection is always present so to try and prevent this I am on long term antibiotics and anti-virals. After 6 months, there becomes a risk of chronic rejection where the lungs become scarred and lung function starts to fall - this is a poorly understood process but some treatments are available to help, although not cure.
The other reasons for reduced life expectancy arise mainly from the effects of anti-rejection medications on the rest of the body - they are tough on the kidneys and can cause renal failure (it is possible to get a kidney transplant and I know people who have), an increased risk of certain cancers and the ongoing risk of some unusual infections. There is no way of predicting whether any particular person will develop problems, so you just have to stay vigilant to any signs and symptoms, contact the transplant team for advice and keep your fingers crossed that you don't encounter many, if any of these problem. Obviously I have had one episode of acute rejection, which is almost to be expected and I may have more. So far, I have not encountered any other issues and hope to keep it this way.
Although this list may sound a bit scary (and I apologise to any pre-transplant readers) it is something I have to contend with and might explain why I still get myself a bit worried from time to time. It's really like having a different, and quite unpredictable illness to deal with. However the other option of not having a transplant only had one possible outcome - continued deterioration and a much reduced life expectancy. With transplant I gain much needed quality of life and the chance to actually LIVE my life.
Can you have children after a transplant?
Yes, some people can and Newcastle have a few people who have had children successfully. It is not advised in the first few years. and there is some data to suggest that it can increase risk of rejection early on especially if you have had previous episodes. Some of the drugs could also affect the unborn child, so it is something that has to be discussed with the transplant team. Another consideration would be the risk of passing on the CF gene - 50% if your partner is a carrier (which can be tested for). This however is a personal issue which I won't go into on a blog.
What do I need to avoid after a transplant?
Most of the main restrictions are in the first 3 months and are mainly aimed at reducing risk of infection. In the longer term this still applies, but the rules are not quite a strict. Regarding food, I have to treat myself like a pregnant woman - no soft cheese, pate, raw fish, rare meats - basically anything with higher risk of food poisoning because this would affect the absorption of my anti rejection drugs, as, unfortunately, does too much alcohol! It is however allowed in moderation (whatever you take that to mean;-)) You also have to be careful digging in soil, compost bins etc due to bacteria in the soil and always wear gloves if gardening. I was also told not to use showers running off large water tanks, such as found in large hotels or hospitals, because stagnant water carries a risk of certain bacteria, and to always wear high factor sun cream, even in this country, to reduce risk of skin cancer. The rule of avoiding people with colds or other infections is long term, although difficult to completely adhere to. It is however all about balance, and common sense should prevail.
What am I most looking forward to in the coming months?
I am most looking forward to getting out and about with Seb (and Andrew of course!) - which I have already started doing. I am looking forward to taking back control of my life; taking back on all the responsibilities I passed to others but can now do for myself. The simple joy of hanging up the washing :-) I am looking forward to catching up with friends and knowing I will be well enough to enjoy this, to plan holidays and know I will be able to go on them and to generally regain some semblance of a social life. Towards the end of the year I really hope I can think about getting back to work, something I have really missed in the past year. In essence I am just looking forward to life...just everyday life! Just so many possibilities and so many dreams to chase.....
P.s any other questions just post me a comment or sign the guest book privately :-)
OK, here are some of the questions I have been asked...and some I know you want to ask but don't know how to (be warned - it's long!)
Do I still have Cystic Fibrosis?
The lungs that I now have are genetically different so they DO NOT have the CF gene and will never develop CF.
CF however is a multi organ disease, so I still have CF in the rest of my body - most of the effects are due to the sticky mucus associated with CF. This affects mainly the pancreas - so I need enzymes to digest my food, take vitamins that I cannot otherwise absorb and have CF related diabetes. It also affects the gut, causing cramps and blockages at times and also acid reflux, so I take medication for these problems. I also have osteoporosis (thinning of the bones) related to CF - this doesn't cause me noticeable problems and I just have to take some medication to keep my bones strong. The mucus in my sinuses is still sticky and harbouring various bugs, so I will still be prone to my usual bouts of sinusitis and I also occasionally suffer from CF related joint pain - however this was mostly during infections so I am hoping that will not be a problem now. People with CF can also have liver problems however I luckily have NO problems in this area. I will continue to see my local CF team for these issues, but won't need to see them nearly as much as pre transplant.
As you can see CF is quite a complex condition and certainly not just a 'lung disease'. However I have always been mostly affected by the lung component and compared to other people with CF am relatively lucky in the other areas. To not have CF lungs anymore will make a huge difference to my quality of life, and is something I have only dreamt of before.
Can I still get a chest infection?
Yes, I can still get a chest infection like any non- CF person, and will be at slightly greater risk due to my immunosuppression - but not because there is anything wrong with my lungs. The main issue in CF transplants is that you still harbour your old bugs in the sinuses and upper airway (where they attached the new lungs). This means that there is always a risk of infecting the new lungs with bacteria I previously carried. However this will not have the same effect as it did in CF lungs, because I don't have the thick mucus which provided the ideal breeding ground. I will continue to take nebulised antibiotics twice a day to try and prevent reinfection but may need oral or IV antibiotics in future if I did grow any bugs in the new lungs. I don't fully know the long term implications of this, but understand that it can be fairly common and will be tackled if it arises so I will not worry about that for the time being.
What was it like to breathe after the transplant? Did it feel deeper?
When I initially woke up it did not feel any different - because of the pain preventing deep breathing and the new lungs needing time to settle in. The feeling of restriction around my chest has only just started to lift now (5 weeks post transplant) and I now feel like I can breathe deeply. This is most noticeable when exercising, because I previously felt 'air hungry' like I just couldn't get enough air into my lungs, where as when I get breathless I am breathing deep long breaths and can recover quickly. Someone also asked if my lungs felt different because they were not full of mucus - the answer is yes! Part of the reason however is that the nerves to the lungs have been cut, so I actually have no/little feedback from my lungs and do not feel when there is mucus, unless it is in my main airway (which is still my own, with intact nerve supply). I therefore am advised to do some deep breathing every day and cough to make sure there is no mucus lurking. It does however feel amazing to have a clear chest and not have physio to do - it is so much easier to sleep without all the coughing, and I don't have to worry about clearing my chest every day, which was a major task, especially towards the end of my time on the list, when it was exhausting and felt never ending I could have done physio all day and still not cleared my chest - it was a big task. It's a lovely feeling to have a clear chest and possibly the best bit of the transplant so far!
How long does a transplant last?
Unfortunately a transplant is not a cure but its aim is to increase life expectancy and improve quality of life. The general statistics quoted are that 80% survive the first year, and 50% survive 5 years. However, Newcastle showed me unpublished data two years ago at my assessment where they had taken only the CF patients statistics and the data showed 80-90% 1 year survival, 70% 5 year survival and 50% 10 year survival. CF patients probably do better because they are used to drug regimes so comply with anti-rejection medications and also because they are younger, so therefore otherwise fitter than the average transplant patient. Also to note, is that the data must be at least 10 years old, so survival data on transplants today will hopefully be much better. I have heard of people doing well 15 years and I certainly aim to top that! If you compare this to the expected 50% two year survival quoted for people placed on the transplant list and the fact only 50% of people waiting actually get a transplant, then the odds are now in my favour :-)
Can you get a second transplant?
It is possible for some people to get a second transplant if the need arises - but very rare. The information I was given said that medical issues arising from the original surgery will often prevent further transplantation. It is something that can however be evaluated if need be, but would be a last resort and not something I need concern myself with at the moment.
Why is life expectancy still reduced?
One of the most common reasons for transplant failure is people not taking their anti-rejection medications properly. Hard to believe I know! With all the alarms I have set on my mobile phone, there is no chance I will miss any doses. In the first year the biggest risk is from infection and acute rejection, the latter actually being easier to treat. The risk of infection is always present so to try and prevent this I am on long term antibiotics and anti-virals. After 6 months, there becomes a risk of chronic rejection where the lungs become scarred and lung function starts to fall - this is a poorly understood process but some treatments are available to help, although not cure.
The other reasons for reduced life expectancy arise mainly from the effects of anti-rejection medications on the rest of the body - they are tough on the kidneys and can cause renal failure (it is possible to get a kidney transplant and I know people who have), an increased risk of certain cancers and the ongoing risk of some unusual infections. There is no way of predicting whether any particular person will develop problems, so you just have to stay vigilant to any signs and symptoms, contact the transplant team for advice and keep your fingers crossed that you don't encounter many, if any of these problem. Obviously I have had one episode of acute rejection, which is almost to be expected and I may have more. So far, I have not encountered any other issues and hope to keep it this way.
Although this list may sound a bit scary (and I apologise to any pre-transplant readers) it is something I have to contend with and might explain why I still get myself a bit worried from time to time. It's really like having a different, and quite unpredictable illness to deal with. However the other option of not having a transplant only had one possible outcome - continued deterioration and a much reduced life expectancy. With transplant I gain much needed quality of life and the chance to actually LIVE my life.
Can you have children after a transplant?
Yes, some people can and Newcastle have a few people who have had children successfully. It is not advised in the first few years. and there is some data to suggest that it can increase risk of rejection early on especially if you have had previous episodes. Some of the drugs could also affect the unborn child, so it is something that has to be discussed with the transplant team. Another consideration would be the risk of passing on the CF gene - 50% if your partner is a carrier (which can be tested for). This however is a personal issue which I won't go into on a blog.
What do I need to avoid after a transplant?
Most of the main restrictions are in the first 3 months and are mainly aimed at reducing risk of infection. In the longer term this still applies, but the rules are not quite a strict. Regarding food, I have to treat myself like a pregnant woman - no soft cheese, pate, raw fish, rare meats - basically anything with higher risk of food poisoning because this would affect the absorption of my anti rejection drugs, as, unfortunately, does too much alcohol! It is however allowed in moderation (whatever you take that to mean;-)) You also have to be careful digging in soil, compost bins etc due to bacteria in the soil and always wear gloves if gardening. I was also told not to use showers running off large water tanks, such as found in large hotels or hospitals, because stagnant water carries a risk of certain bacteria, and to always wear high factor sun cream, even in this country, to reduce risk of skin cancer. The rule of avoiding people with colds or other infections is long term, although difficult to completely adhere to. It is however all about balance, and common sense should prevail.
What am I most looking forward to in the coming months?
I am most looking forward to getting out and about with Seb (and Andrew of course!) - which I have already started doing. I am looking forward to taking back control of my life; taking back on all the responsibilities I passed to others but can now do for myself. The simple joy of hanging up the washing :-) I am looking forward to catching up with friends and knowing I will be well enough to enjoy this, to plan holidays and know I will be able to go on them and to generally regain some semblance of a social life. Towards the end of the year I really hope I can think about getting back to work, something I have really missed in the past year. In essence I am just looking forward to life...just everyday life! Just so many possibilities and so many dreams to chase.....
P.s any other questions just post me a comment or sign the guest book privately :-)
Saturday, May 31, 2008
Home Sweet Home...again!
Well, I did manage to escape this morning and after a 3 hr drive was back home by lunchtime. I was very proactive in organising this discharge and really hassled the poor doctor yesterday to make sure my prescriptions were on the ward last night. The consultant came round about 10am and I was sitting ready with all my bags packed and having just finished my final dose of IV steroids (after harassing the nurses to get it started first thing this morning ;-)) He clearly didn't notice the packed bags when he said I could get home tomorrow. My heart just sank - it was a beautiful day outside and I couldn't bear to stay isolated in that room for 1 more minute, never mind 1 more day. Apparently you are meant to stay for 24 hours after the last dose of steroids but I chanced my luck and asked very nicely if maybe I could just go home today. He paused for a moment before agreeing that yes I could go home tonight. Needless to say he was only 5 minutes off the ward and me and mum legged it to the car - I wasn't waiting until tonight! I did check with the nurses and they didn't see a reason to stay so I wasn't arguing with that. It's so good to be home again after what was a scary few days and I have been a little overexcited and unable to sit back and rest. Hopefully tomorrow I will be able to chill a bit more. At the moment the assumption is that the steroids will have worked and I will have another bronchoscopy in two months time, and lung function checked at clinic in three weeks. It would be amazing if I could top my 75%!
The other good news is that I also asked the consultant about removing my peg tube, which is still causing me a lot of pain. He said as long as I was eating then it was fine to remove it. My weight has still not gone up but I am wondering if that has been related to the rejection, so am hoping it might start to increase now. I phoned the peg tube nurse specialist who has told me to remove it at night as you can't eat for 6 hours after taking it out - because it will all come out the hole!! Nice ;-) It will probably need some dressings for a few weeks until it closes over properly and since I have had it for a good few years, this can take a bit longer. I am going to bite the bullet and take it out tonight, so that might prove rather interesting. Incidentally if you are wondering how it is removed, it has a wee water filled balloon which holds it in place - I just have to draw the water out to deflate the balloon and pull it out. Easy Peasy. I had to do this to change the tube every few months anyway so I know what to expect.
While the consultant appeared to be in such an amenable mood I decided to ask about a good friends wedding which is in 3 weeks time. Since I won't be over my 12 week period and also still on higher dose steroids, I thought he would say no. He didn't though! He said it would be ok as long as I was well, that there wasn't big crowds (it's a small wedding) and to avoid snotty nosed children. I think I can manage that ok. I am absolutely delighted to get the go ahead for this wedding and am really looking forward to it. I am due back in Newcastle for a clinic in 3 weeks time, just before the wedding, so please keep everything crossed that they find no reason to keep me this time.
I am also pleased to say that Seb treated me to a few tail wags again, although he looked rather surprised when I walked in the door. He hasn't been as clingy this time, so hopefully he is getting used to that fact that I might occasionally disappear but that I do eventually come back. I will hopefully be able to take him out for a walk tomorrow, as I was trying to avoid meeting anyone today. It will be interesting to see if the steroids have made any difference to how easy or hard I find the walk and I'm really hoping I just continue to improve from now on. I know there may be more set backs but for the moment I am just trying to stay positive and enjoy the fact I am feeling well today.
Well, I did manage to escape this morning and after a 3 hr drive was back home by lunchtime. I was very proactive in organising this discharge and really hassled the poor doctor yesterday to make sure my prescriptions were on the ward last night. The consultant came round about 10am and I was sitting ready with all my bags packed and having just finished my final dose of IV steroids (after harassing the nurses to get it started first thing this morning ;-)) He clearly didn't notice the packed bags when he said I could get home tomorrow. My heart just sank - it was a beautiful day outside and I couldn't bear to stay isolated in that room for 1 more minute, never mind 1 more day. Apparently you are meant to stay for 24 hours after the last dose of steroids but I chanced my luck and asked very nicely if maybe I could just go home today. He paused for a moment before agreeing that yes I could go home tonight. Needless to say he was only 5 minutes off the ward and me and mum legged it to the car - I wasn't waiting until tonight! I did check with the nurses and they didn't see a reason to stay so I wasn't arguing with that. It's so good to be home again after what was a scary few days and I have been a little overexcited and unable to sit back and rest. Hopefully tomorrow I will be able to chill a bit more. At the moment the assumption is that the steroids will have worked and I will have another bronchoscopy in two months time, and lung function checked at clinic in three weeks. It would be amazing if I could top my 75%!
The other good news is that I also asked the consultant about removing my peg tube, which is still causing me a lot of pain. He said as long as I was eating then it was fine to remove it. My weight has still not gone up but I am wondering if that has been related to the rejection, so am hoping it might start to increase now. I phoned the peg tube nurse specialist who has told me to remove it at night as you can't eat for 6 hours after taking it out - because it will all come out the hole!! Nice ;-) It will probably need some dressings for a few weeks until it closes over properly and since I have had it for a good few years, this can take a bit longer. I am going to bite the bullet and take it out tonight, so that might prove rather interesting. Incidentally if you are wondering how it is removed, it has a wee water filled balloon which holds it in place - I just have to draw the water out to deflate the balloon and pull it out. Easy Peasy. I had to do this to change the tube every few months anyway so I know what to expect.
While the consultant appeared to be in such an amenable mood I decided to ask about a good friends wedding which is in 3 weeks time. Since I won't be over my 12 week period and also still on higher dose steroids, I thought he would say no. He didn't though! He said it would be ok as long as I was well, that there wasn't big crowds (it's a small wedding) and to avoid snotty nosed children. I think I can manage that ok. I am absolutely delighted to get the go ahead for this wedding and am really looking forward to it. I am due back in Newcastle for a clinic in 3 weeks time, just before the wedding, so please keep everything crossed that they find no reason to keep me this time.
I am also pleased to say that Seb treated me to a few tail wags again, although he looked rather surprised when I walked in the door. He hasn't been as clingy this time, so hopefully he is getting used to that fact that I might occasionally disappear but that I do eventually come back. I will hopefully be able to take him out for a walk tomorrow, as I was trying to avoid meeting anyone today. It will be interesting to see if the steroids have made any difference to how easy or hard I find the walk and I'm really hoping I just continue to improve from now on. I know there may be more set backs but for the moment I am just trying to stay positive and enjoy the fact I am feeling well today.
Friday, May 30, 2008
Rejection - UPDATE
Well I got some great news this morning - following further lab tests it looks like I DON'T have any humoral rejection at this stage (and fingers crossed I won't develop it in future). So at the moment I am dealing with the more straight forward cellular rejection which is very common in the first year and normally responsive to the IV steroids. I finish the IV steroids tomorrow and should be allowed to go home immediately afterwards, so hopefully we can get organised early tomorrow and get on the road asap. As I am very immunosuppressed again I may not be allowed any visitors at this stage but need to speak to the doctor for more details of the do's and don'ts. I will be due another bronchoscopy in a couple of months but I think I will be back down at out patients before then. They use lung function to monitor if steroid therapy has been successful - I would normally have this rechecked before going home but as it is a weekend I won't be able to do this, and certainly am not hanging about until Monday for the privilege. It is quite possible that I could have another episode (or more) of rejection in the coming year but fingers crossed this is my first and last.
Emotionally I took a bit of a battering yesterday and really felt so worried about the implications of this uncommon rejection. There were moments when I even longed to have my old lungs back - as poor as they were, at least I understood them and knew what to expect. With the possibility of two different forms of rejection looming over me I felt so out of control as I battled with an unknown entity. The fear of what might lie ahead was overwhelming at times - as much as I try and stay positive all the time, sometimes your darkest thoughts can bubble to the surface and it's pretty damn hard to ignore them. I am also cursed with having just a little too much knowledge, and as my friend Stef pointed out - ignorance really is bliss. The last couple of months with my false call and then the real call, have been an emotional roller coaster, and yesterday I just had that awful feeling of 'it's just not fair!'. Thankfully I have moved on from my wallowing and self pity, and with the good news this morning feel more ready to get on top of this rejection and back to my crazy new life. As always, it's onwards and upwards!
Well I got some great news this morning - following further lab tests it looks like I DON'T have any humoral rejection at this stage (and fingers crossed I won't develop it in future). So at the moment I am dealing with the more straight forward cellular rejection which is very common in the first year and normally responsive to the IV steroids. I finish the IV steroids tomorrow and should be allowed to go home immediately afterwards, so hopefully we can get organised early tomorrow and get on the road asap. As I am very immunosuppressed again I may not be allowed any visitors at this stage but need to speak to the doctor for more details of the do's and don'ts. I will be due another bronchoscopy in a couple of months but I think I will be back down at out patients before then. They use lung function to monitor if steroid therapy has been successful - I would normally have this rechecked before going home but as it is a weekend I won't be able to do this, and certainly am not hanging about until Monday for the privilege. It is quite possible that I could have another episode (or more) of rejection in the coming year but fingers crossed this is my first and last.
Emotionally I took a bit of a battering yesterday and really felt so worried about the implications of this uncommon rejection. There were moments when I even longed to have my old lungs back - as poor as they were, at least I understood them and knew what to expect. With the possibility of two different forms of rejection looming over me I felt so out of control as I battled with an unknown entity. The fear of what might lie ahead was overwhelming at times - as much as I try and stay positive all the time, sometimes your darkest thoughts can bubble to the surface and it's pretty damn hard to ignore them. I am also cursed with having just a little too much knowledge, and as my friend Stef pointed out - ignorance really is bliss. The last couple of months with my false call and then the real call, have been an emotional roller coaster, and yesterday I just had that awful feeling of 'it's just not fair!'. Thankfully I have moved on from my wallowing and self pity, and with the good news this morning feel more ready to get on top of this rejection and back to my crazy new life. As always, it's onwards and upwards!
Thursday, May 29, 2008
Rejection
Well as you can guess from the title my bronchoscopy wasn't quite as positive as I had hoped for. Despite oxygen saturations of 100% and my lung function going up to 2.14 litres (75%) the lung biopsies have shown evidence of acute rejection. There are 4 stages of rejection, with 1 being mild and needing no or little treatment and 4 being very severe. I am between stage 2 and 3, which means it's at a moderate level and requires treatment - which is 3 days of IV steroids (for my medic friends that's methylprednisolone 440mg/day) After the 3 days my oral steroids will be back up (to 60mg) and then be gradually reduced by 10mg/week until I am back down to 10mg daily. The consultant was very surprised that I hadn't been feeling unwell and that my lung function was up. I have been a little tired and breathless walking the dog but I had put that down to being unfit and overdoing things. After all I have no idea what normal is and all I knew what that I felt better than I did before the transplant. One positive thing about this is the fact I should feel even better once it has been treated, and my lung function may well go up further. Acute rejection is extremely common in the first year, and especially the first few months, so this is not unusual. It is also very responsive to the steroid treatment so hopefully it will be under control asap.
The only other worrying thing from today was that the biopsy also showed some evidence of humoral rejection, which is a different type of acute rejection involving antibodies (proteins my body has made to attack the new lungs). Apparently this is very uncommon in lung transplants and the treatment would be different to steroids. At this stage however it is only a MAYBE as there are other tests they still need to carry out to confirm or refute this. The consultant feels that in light of how good I am clinically, its entirely possible that further tests will eliminate this. I did ask a lot of questions but the doctor felt there was little point going into all the ins and outs until we know for certain whether I have this. Needless to say I am quite worried about this and although I know I need to wait on the test results, my mind is racing ahead and imagining all sorts of possibilities.
So, I'm back to isolation at the moment as I am being seriously immunosuppressed with the steroids. This does at least mean I have my own room again, as last night I was on bay with 3 other ladies. One was a young girl who couldn't stop vomiting and needed me to press her buzzer for her, there was an old lady who belched all night and wandered to the bathroom with her bum hanging out the back of her gown, and another post-op middle aged lady who appeared to be sipping vodka from her water glass (i kid you not). I put my head phones on and pretended to be very engrossed in my pay to view TV ;-) I suppose it helped pass the time..
Mum is staying down here, as Andrew has to go to work. I felt terrible leaving wee Seb again, and when he saw me packing my suitcase his wee tail went down and he moped about all night. He then tried to bar my exit the next morning by sitting in front of the door and refusing to move. Andrew said he was moping about all day, checking the front door regularly to see if I was back. I think he is ok now though so hopefully he wont be too huffy when I finally get home!
I will update if I hear any more news about the rejection, but I can't imagine I will hear anything soon. Fingers crossed its nothing to worry about and I get home soon and back to enjoying my new life.
Well as you can guess from the title my bronchoscopy wasn't quite as positive as I had hoped for. Despite oxygen saturations of 100% and my lung function going up to 2.14 litres (75%) the lung biopsies have shown evidence of acute rejection. There are 4 stages of rejection, with 1 being mild and needing no or little treatment and 4 being very severe. I am between stage 2 and 3, which means it's at a moderate level and requires treatment - which is 3 days of IV steroids (for my medic friends that's methylprednisolone 440mg/day) After the 3 days my oral steroids will be back up (to 60mg) and then be gradually reduced by 10mg/week until I am back down to 10mg daily. The consultant was very surprised that I hadn't been feeling unwell and that my lung function was up. I have been a little tired and breathless walking the dog but I had put that down to being unfit and overdoing things. After all I have no idea what normal is and all I knew what that I felt better than I did before the transplant. One positive thing about this is the fact I should feel even better once it has been treated, and my lung function may well go up further. Acute rejection is extremely common in the first year, and especially the first few months, so this is not unusual. It is also very responsive to the steroid treatment so hopefully it will be under control asap.
The only other worrying thing from today was that the biopsy also showed some evidence of humoral rejection, which is a different type of acute rejection involving antibodies (proteins my body has made to attack the new lungs). Apparently this is very uncommon in lung transplants and the treatment would be different to steroids. At this stage however it is only a MAYBE as there are other tests they still need to carry out to confirm or refute this. The consultant feels that in light of how good I am clinically, its entirely possible that further tests will eliminate this. I did ask a lot of questions but the doctor felt there was little point going into all the ins and outs until we know for certain whether I have this. Needless to say I am quite worried about this and although I know I need to wait on the test results, my mind is racing ahead and imagining all sorts of possibilities.
So, I'm back to isolation at the moment as I am being seriously immunosuppressed with the steroids. This does at least mean I have my own room again, as last night I was on bay with 3 other ladies. One was a young girl who couldn't stop vomiting and needed me to press her buzzer for her, there was an old lady who belched all night and wandered to the bathroom with her bum hanging out the back of her gown, and another post-op middle aged lady who appeared to be sipping vodka from her water glass (i kid you not). I put my head phones on and pretended to be very engrossed in my pay to view TV ;-) I suppose it helped pass the time..
Mum is staying down here, as Andrew has to go to work. I felt terrible leaving wee Seb again, and when he saw me packing my suitcase his wee tail went down and he moped about all night. He then tried to bar my exit the next morning by sitting in front of the door and refusing to move. Andrew said he was moping about all day, checking the front door regularly to see if I was back. I think he is ok now though so hopefully he wont be too huffy when I finally get home!
I will update if I hear any more news about the rejection, but I can't imagine I will hear anything soon. Fingers crossed its nothing to worry about and I get home soon and back to enjoying my new life.
Sunday, May 25, 2008
Sunshine and Gardening
I've had a good weekend - keeping myself busy and enjoying the sunshine (with my factor 50 on!) Yesterday we were up early and at Dobbie's garden centre first thing, as I still have to avoid busy shops. I know it sounds like all I ever do is visit garden centres, but we are just catching up on all the garden plans which were previously put on hold (plus I had a 2o% off voucher which was further incentive ;-)) We got the final lot of plants for the rockery and also a variety of herbs so we can pretend to be budding chefs. It's so great just being able to wander round a shop and not feel out of breath - I still find it hard to believe! Also the fact I can get up and out the door that early. I know I keep saying this, but not having physio to do and not waking up with a splitting headache, feeling unwell, has made such a huge difference to my life already.
Andrew has spent the whole weekend trying to dig the rockery and put weed fabric down. This is something we wish we had done last year when we first built the rockery, but you live and learn. I have of course supervised all the work. I did contribute today by cleaning all the patio furniture in preparation for Andrew painting it (its metal and has gone all rusty). I did offer to paint it as well but Andrew pointed out that the paint is highly volatile and is probably not very good for my wee lungs. Good point. So instead I decided I would feed all the plants, which involved mixing plant food in 5 litres of water. I am not allowed to do any heavy lifting for 3 months due to the wound, but somehow it didn't occur to me that lifting a watering can with 5 litres of water constituted heavy lifting. I may or may not have repeated this four times. Funnily enough it wasn't long after this that my wound started to throb. I ended up having to take a cocktail of every painkiller I had, plus a heat pack to try and ease the pain. It may be the single most stupid thing I have ever done. I just have a tendency to get carried away - mostly because I have been so restricted in the past couple of years that the feeling of being able to do physical tasks is absolutely wonderful. Thankfully the pain seems to have eased now, so hopefully I haven't done anything that will impact on the healing process and as from now I am banned from lifting anything heavier than a cup of coffee.
I have continued to walk Seb every day and he is loving it. I am now managing to do the same route as I did 2 years ago, but the main thing holding me back is still my general fitness. I do still become breathless on any hills but I'm sure this will improve with time and for the moment I just need to pace myself. Seb is still trying to get used to the fact I am moving around the house more. He is used to me just sitting on the sofa while he naps in his basket, but now that I am more active he has been quite unsettled. He insists on following me around all the time and I'm not sure if he is worried that I will leave him again or whether he is just hopeful that I might take him another walk!
On the medical side of things, my blood sugars have been much better the last couple of days (which might be why I have more energy). I spoke with the diabetic nurse, who said I was doing the right thing and just to keep gradually titrating up the insulin. She said it was ok to take my 3 sugars in coffee but to take some insulin with this. Although this means a couple of more injections a day, it is worth it for good sugar control .... and I really couldn't give up my coffee ;-)
I don't know if I will be blogging for a few days as I am off to Newcastle on Tuesday. I will hopefully be back on Thursday night after the clinic, unless I have any rejection in which case I need to stay for 3 days of IV steroids. Hopefully not though! I am still going to do my transplant questions post, although only one person has actually asked me a question. You are obviously all very knowledgeable or all too shy ;-) If you wanted to ask something but are put off commenting publicly, then you can use the guest book privately. Otherwise I am just going to make up my own questions which could prove interesting to say the least...
I've had a good weekend - keeping myself busy and enjoying the sunshine (with my factor 50 on!) Yesterday we were up early and at Dobbie's garden centre first thing, as I still have to avoid busy shops. I know it sounds like all I ever do is visit garden centres, but we are just catching up on all the garden plans which were previously put on hold (plus I had a 2o% off voucher which was further incentive ;-)) We got the final lot of plants for the rockery and also a variety of herbs so we can pretend to be budding chefs. It's so great just being able to wander round a shop and not feel out of breath - I still find it hard to believe! Also the fact I can get up and out the door that early. I know I keep saying this, but not having physio to do and not waking up with a splitting headache, feeling unwell, has made such a huge difference to my life already.
My azalea - in memory of my donor
Andrew has spent the whole weekend trying to dig the rockery and put weed fabric down. This is something we wish we had done last year when we first built the rockery, but you live and learn. I have of course supervised all the work. I did contribute today by cleaning all the patio furniture in preparation for Andrew painting it (its metal and has gone all rusty). I did offer to paint it as well but Andrew pointed out that the paint is highly volatile and is probably not very good for my wee lungs. Good point. So instead I decided I would feed all the plants, which involved mixing plant food in 5 litres of water. I am not allowed to do any heavy lifting for 3 months due to the wound, but somehow it didn't occur to me that lifting a watering can with 5 litres of water constituted heavy lifting. I may or may not have repeated this four times. Funnily enough it wasn't long after this that my wound started to throb. I ended up having to take a cocktail of every painkiller I had, plus a heat pack to try and ease the pain. It may be the single most stupid thing I have ever done. I just have a tendency to get carried away - mostly because I have been so restricted in the past couple of years that the feeling of being able to do physical tasks is absolutely wonderful. Thankfully the pain seems to have eased now, so hopefully I haven't done anything that will impact on the healing process and as from now I am banned from lifting anything heavier than a cup of coffee.
I have continued to walk Seb every day and he is loving it. I am now managing to do the same route as I did 2 years ago, but the main thing holding me back is still my general fitness. I do still become breathless on any hills but I'm sure this will improve with time and for the moment I just need to pace myself. Seb is still trying to get used to the fact I am moving around the house more. He is used to me just sitting on the sofa while he naps in his basket, but now that I am more active he has been quite unsettled. He insists on following me around all the time and I'm not sure if he is worried that I will leave him again or whether he is just hopeful that I might take him another walk!
Seb trying to find a shaded spot in the garden
On the medical side of things, my blood sugars have been much better the last couple of days (which might be why I have more energy). I spoke with the diabetic nurse, who said I was doing the right thing and just to keep gradually titrating up the insulin. She said it was ok to take my 3 sugars in coffee but to take some insulin with this. Although this means a couple of more injections a day, it is worth it for good sugar control .... and I really couldn't give up my coffee ;-)
I don't know if I will be blogging for a few days as I am off to Newcastle on Tuesday. I will hopefully be back on Thursday night after the clinic, unless I have any rejection in which case I need to stay for 3 days of IV steroids. Hopefully not though! I am still going to do my transplant questions post, although only one person has actually asked me a question. You are obviously all very knowledgeable or all too shy ;-) If you wanted to ask something but are put off commenting publicly, then you can use the guest book privately. Otherwise I am just going to make up my own questions which could prove interesting to say the least...
Thursday, May 22, 2008
Hello, this is Seb. Mummy says I can have 10minutes on the computer, but then its my bedtime. I wanted to write my own message to Daisy and Minnie. I have to agree with you both about the horse poo. It is the best thing since sliced bread. In fact I even prefer it to pigs ears. Not only do I like to roll in it, but its also rather yummy. Papa D nearly had a fit when he saw me munching on it, and he tried to grab it from my mouth. I mean, calm down, its not like I was eating dog poo!
I must say its great being back with my mummy. I don't quite know what's come over her but she keeps taking me out for walks. I think maybe she has been taking drugs of some kind or she has had a stroke. Something must be affecting her brain. Not that I am complaining of course because I do love going on my walkies. She does seem to get annoyed when I stop to sniff things and she tries to pull me on. I just dig my heels in and throw her a look. I mean, is a dog now allowed a wee sniff? She also gets annoyed when I stop to pee on everyone's wheely bin but personally I don't know what the big deal is.
I am really enjoying having my own garden again. When I came home I went outside to tell everyone I was home but then my mummy told me 'that's enough!' and made me come inside again. She is such a spoil sport. To get her back I have started to scratch the back door pretending I want in, and when she comes to open it I just sit on the step and stare in the opposite direction. it drives her mad! She says silly things like 'i will count to 3!' and then she shuts the door again. I just wait until she sits down and then I scratch the door again - it seems to really wind her up but I think its so funny. I tried doing it to Granny T but she just told me to 'get in!' and I was too scared to do otherwise. She is quite strict.
I will have to go now because mummy says my ten minutes are up now and she wants to check her emails. I think maybe I need an email address. In fact I think I need my own blog then I can really start telling you some stories ....
I must say its great being back with my mummy. I don't quite know what's come over her but she keeps taking me out for walks. I think maybe she has been taking drugs of some kind or she has had a stroke. Something must be affecting her brain. Not that I am complaining of course because I do love going on my walkies. She does seem to get annoyed when I stop to sniff things and she tries to pull me on. I just dig my heels in and throw her a look. I mean, is a dog now allowed a wee sniff? She also gets annoyed when I stop to pee on everyone's wheely bin but personally I don't know what the big deal is.
I am really enjoying having my own garden again. When I came home I went outside to tell everyone I was home but then my mummy told me 'that's enough!' and made me come inside again. She is such a spoil sport. To get her back I have started to scratch the back door pretending I want in, and when she comes to open it I just sit on the step and stare in the opposite direction. it drives her mad! She says silly things like 'i will count to 3!' and then she shuts the door again. I just wait until she sits down and then I scratch the door again - it seems to really wind her up but I think its so funny. I tried doing it to Granny T but she just told me to 'get in!' and I was too scared to do otherwise. She is quite strict.
I will have to go now because mummy says my ten minutes are up now and she wants to check her emails. I think maybe I need an email address. In fact I think I need my own blog then I can really start telling you some stories ....
Sugars, scones and pink nails!
I had a bit of a tired day yesterday and found myself struggling when I took Seb for a short walk. Impatient as ever I was really quite upset about this and felt like I wasn't moving forwards at all. I did however later discover that my blood sugars were really quite high, which probably explains why I felt so tired. It may have been something to do with the scone and jam and coffee with 3 sugars that I had earlier in the day ;-) It's hard trying to get the balance between controlling my blood sugars and gaining weight. When you have CF related diabetes you are told to continue with a normal diet and adjust the insulin accordingly because it is so important to keep you weight up. I'm not entirely sure if that rule still applies now I am post transplant, but I do still need to put weight on, so for the time being scones are still on the menu. The CF nurse has taken a note of all the blood sugars I have recorded and is going to show them to the diabetic nurse for further advice. I probably just need to start taking some insulin with snacks as well as meals, which shouldn't be too much hassle.
I also got some feedback on the peg tube situation. The CF consultants both agreed that I could remove the peg tube, however they also ran it past the outpatient clinic at Newcastle (who are now responsible for my care) and they were not keen for it to be removed. They felt it was far to early at this stage and should I have an episode of rejection or infection I may need the peg tube. They were also concerned that at the moment I am still underweight and need to put on at least 4kg to be at my target weight. I was really upset about this as it really is causing me a lot of discomfort. It become really painful when I am walking and is also waking me up several times during the night. It is in fact much more painful than my wound, which just seems counter productive to me. Newcastle did say that they cannot stop me removing the tube, but I feel if I do that I will look reckless and non compliant, and I don't want that to be their first impression of me. My plan at the moment is to suffer it until next week and discuss it with Newcastle team when I am down for my bronchoscopy. I am willing to use an NG tube if necessary for overnight feeds so hopefully I can convince them that it's safe enough to remove the peg. Fingers crossed.
Today I was less tired and managed a bit more. In fact I took Seb out twice! Just for short walks, but hopefully building up my stamina slowly but surely. He couldn't really believe his luck when I shouted walkies for the second time -he almost looked at me with utter disbelief. It's all very novel for him at the moment and he gets a bit overexcited about me taking him out. I'm sure this will wear off soon. My legs are also aching from climbing my stairs, which just shows how unfit I actually am. I don't think I had appreciated how much I had deteriorated during the 2 years on the transplant list. I still can't do as much as I could when first listed, so that tells me that the biggest things holding me back is the fact I am seriously out of condition. This is something that will improve gradually over the coming months and I will just have to work hard and stay focused. Already the stairs are starting to get a bit easier and I'm sure it will be no time at all before I can run up them. Maybe!
This afternoon my friend came over and we had a good catch up, which mostly consisted of me talking a lot. I'm just making up for lost time. I think she noticed a big difference in me, even with simple things like how I used to lean forward on the kitchen worktop while making coffee because I was so out of breath, but now I can just wander about the kitchen effortlessly. It's interesting to hear these things, as sometimes it can be so subtle that I don't notice the differences myself. Speaking of differences, something else I noticed is how pink my nails are! My nails, especially my toenails for some reason, were usually a dusky blue but now they are nice and pink and healthy looking. Simple, yet so significant.
I am thinking about doing a post explaining more about transplant and what this means for me. People have been asking questions such as 'do these lungs have CF?' 'will I still get chest infections?' 'can you get a second transplant?' I will try and answer some of these questions, so if you have any others (no matter how daft you think it might be) please leave a comment and I will do my best to answer them. This idea came from someone else's blog, but I thought it was a good idea so I am stealing it;-)
I had a bit of a tired day yesterday and found myself struggling when I took Seb for a short walk. Impatient as ever I was really quite upset about this and felt like I wasn't moving forwards at all. I did however later discover that my blood sugars were really quite high, which probably explains why I felt so tired. It may have been something to do with the scone and jam and coffee with 3 sugars that I had earlier in the day ;-) It's hard trying to get the balance between controlling my blood sugars and gaining weight. When you have CF related diabetes you are told to continue with a normal diet and adjust the insulin accordingly because it is so important to keep you weight up. I'm not entirely sure if that rule still applies now I am post transplant, but I do still need to put weight on, so for the time being scones are still on the menu. The CF nurse has taken a note of all the blood sugars I have recorded and is going to show them to the diabetic nurse for further advice. I probably just need to start taking some insulin with snacks as well as meals, which shouldn't be too much hassle.
I also got some feedback on the peg tube situation. The CF consultants both agreed that I could remove the peg tube, however they also ran it past the outpatient clinic at Newcastle (who are now responsible for my care) and they were not keen for it to be removed. They felt it was far to early at this stage and should I have an episode of rejection or infection I may need the peg tube. They were also concerned that at the moment I am still underweight and need to put on at least 4kg to be at my target weight. I was really upset about this as it really is causing me a lot of discomfort. It become really painful when I am walking and is also waking me up several times during the night. It is in fact much more painful than my wound, which just seems counter productive to me. Newcastle did say that they cannot stop me removing the tube, but I feel if I do that I will look reckless and non compliant, and I don't want that to be their first impression of me. My plan at the moment is to suffer it until next week and discuss it with Newcastle team when I am down for my bronchoscopy. I am willing to use an NG tube if necessary for overnight feeds so hopefully I can convince them that it's safe enough to remove the peg. Fingers crossed.
Today I was less tired and managed a bit more. In fact I took Seb out twice! Just for short walks, but hopefully building up my stamina slowly but surely. He couldn't really believe his luck when I shouted walkies for the second time -he almost looked at me with utter disbelief. It's all very novel for him at the moment and he gets a bit overexcited about me taking him out. I'm sure this will wear off soon. My legs are also aching from climbing my stairs, which just shows how unfit I actually am. I don't think I had appreciated how much I had deteriorated during the 2 years on the transplant list. I still can't do as much as I could when first listed, so that tells me that the biggest things holding me back is the fact I am seriously out of condition. This is something that will improve gradually over the coming months and I will just have to work hard and stay focused. Already the stairs are starting to get a bit easier and I'm sure it will be no time at all before I can run up them. Maybe!
This afternoon my friend came over and we had a good catch up, which mostly consisted of me talking a lot. I'm just making up for lost time. I think she noticed a big difference in me, even with simple things like how I used to lean forward on the kitchen worktop while making coffee because I was so out of breath, but now I can just wander about the kitchen effortlessly. It's interesting to hear these things, as sometimes it can be so subtle that I don't notice the differences myself. Speaking of differences, something else I noticed is how pink my nails are! My nails, especially my toenails for some reason, were usually a dusky blue but now they are nice and pink and healthy looking. Simple, yet so significant.
I am thinking about doing a post explaining more about transplant and what this means for me. People have been asking questions such as 'do these lungs have CF?' 'will I still get chest infections?' 'can you get a second transplant?' I will try and answer some of these questions, so if you have any others (no matter how daft you think it might be) please leave a comment and I will do my best to answer them. This idea came from someone else's blog, but I thought it was a good idea so I am stealing it;-)
Wednesday, May 21, 2008
New Beginnings
Tuesday morning was spent making hundreds of phone calls trying to arrange uplift of all my equipment and try and arrange bloods tests and prescriptions. The chemist picked up all my portable cylinders but the oxygen concentrator company need permission from my doctor before they will arrange uplift! The CF nurse came and collected all my IV medication and old nebuliser (I have to use a new one in case bacteria are lurking in the old one). The wheelchair is getting uplifted in a couple of weeks and then I'm only left with the stair lift and bath board. I won't do anything hasty about the stair lift as any episodes of acute rejection or infection could leave me very breathless so it might be needed. I also don't really want to give the bath board back because it's great for shaving your legs, and Andrew likes it to put his shampoo and shower gel on ;-) It's a great feeling to gradually get rid of all these reminders of my life before - hopefully they will all be gone in the next few weeks and I can really have a fresh start.
In the afternoon mum and I took Seb to the local country park. He loved it! So many smells and new things for him to investigate. We just did a short walk round the pond, but it was great to get out in the fresh air and enjoy some nature. When we returned Seb collapsed in a heap and went straight to sleep - must have been hard work doing all that sniffing. He is being very sooky at the moment and on his absolute best behaviour. I wonder if he thinks we sent him away for being naughty! I'll try and enjoy the good behaviour while it lasts..
Yesterday I had to get bloods checked in the morning so the GP came out to do this. It was great being able to get up, showered and dressed and still be ready first thing. Not having physio to do is making a huge difference to my mornings, as is the fact I just have a wee bit more energy so can get myself organised that bit faster.
In the afternoon I dragged mum to the garden centre again. I wanted to buy a flower or tree to plant in memory of my donor. I was looking for something that would flower around the time of her anniversary. I eventually decided on a beautiful evergreen azalea which had bright cerise flowers in the spring. I got a lovely big granite pot for it, so I can take the plant with me should I ever move house. I also bought some other bits and pieces and poor mum had to push this huge trolley around while I sauntered around shouting instructions. Shame I can't lift anything heavy ;-) I saw a bird table I wanted (been looking for ages) but there was no way it would fit in the car, so when Andrew got back from work I insisted on going back to purchase the table, as he can fold the seats down in his car. I may also have purchased a bird bath (the old one blew over and shattered). Andrew continues to be worried about my spending since the transplant. To be fair I had kept birthday money for the bird table, although I hadn't budgeted for the bird bath. You have to live a little though..
The main problem I am having at the moment is with my Peg tube. For those who have followed my blog since the beginning may well remember me talking about this before. The peg tube is small tube that goes directly into my stomach and was used for overnight feeds to give me extra calories. I have had problems intermittently with this tube, where I get severe pain in the surrounding muscle. It is brought on with walking, so I think it has flared up because I am now more mobile. The pain is so bad that it stops me walking any further and is also waking me up several times during the night, despite the fact I am still on strong painkillers for my wound. I have asked the CF team if I can have it removed and they will discuss it today. The main issue with having it removed at this stage is the fact I need to put some weight on and have not proved that I can do this with eating alone. I did however suggest that I could use a nasogastric tube if I needed to feed a couple of nights a week for extra calories. I feel so frustrated that I should be exercising but am actually being limited by this. It seems counter productive to me. Anyway, I will let you all know what the outcome is!
p.s Seb says woof woof to Daisy and he agrees that horse poo is rather lovely ;-)
Tuesday morning was spent making hundreds of phone calls trying to arrange uplift of all my equipment and try and arrange bloods tests and prescriptions. The chemist picked up all my portable cylinders but the oxygen concentrator company need permission from my doctor before they will arrange uplift! The CF nurse came and collected all my IV medication and old nebuliser (I have to use a new one in case bacteria are lurking in the old one). The wheelchair is getting uplifted in a couple of weeks and then I'm only left with the stair lift and bath board. I won't do anything hasty about the stair lift as any episodes of acute rejection or infection could leave me very breathless so it might be needed. I also don't really want to give the bath board back because it's great for shaving your legs, and Andrew likes it to put his shampoo and shower gel on ;-) It's a great feeling to gradually get rid of all these reminders of my life before - hopefully they will all be gone in the next few weeks and I can really have a fresh start.
In the afternoon mum and I took Seb to the local country park. He loved it! So many smells and new things for him to investigate. We just did a short walk round the pond, but it was great to get out in the fresh air and enjoy some nature. When we returned Seb collapsed in a heap and went straight to sleep - must have been hard work doing all that sniffing. He is being very sooky at the moment and on his absolute best behaviour. I wonder if he thinks we sent him away for being naughty! I'll try and enjoy the good behaviour while it lasts..
Yesterday I had to get bloods checked in the morning so the GP came out to do this. It was great being able to get up, showered and dressed and still be ready first thing. Not having physio to do is making a huge difference to my mornings, as is the fact I just have a wee bit more energy so can get myself organised that bit faster.
In the afternoon I dragged mum to the garden centre again. I wanted to buy a flower or tree to plant in memory of my donor. I was looking for something that would flower around the time of her anniversary. I eventually decided on a beautiful evergreen azalea which had bright cerise flowers in the spring. I got a lovely big granite pot for it, so I can take the plant with me should I ever move house. I also bought some other bits and pieces and poor mum had to push this huge trolley around while I sauntered around shouting instructions. Shame I can't lift anything heavy ;-) I saw a bird table I wanted (been looking for ages) but there was no way it would fit in the car, so when Andrew got back from work I insisted on going back to purchase the table, as he can fold the seats down in his car. I may also have purchased a bird bath (the old one blew over and shattered). Andrew continues to be worried about my spending since the transplant. To be fair I had kept birthday money for the bird table, although I hadn't budgeted for the bird bath. You have to live a little though..
The main problem I am having at the moment is with my Peg tube. For those who have followed my blog since the beginning may well remember me talking about this before. The peg tube is small tube that goes directly into my stomach and was used for overnight feeds to give me extra calories. I have had problems intermittently with this tube, where I get severe pain in the surrounding muscle. It is brought on with walking, so I think it has flared up because I am now more mobile. The pain is so bad that it stops me walking any further and is also waking me up several times during the night, despite the fact I am still on strong painkillers for my wound. I have asked the CF team if I can have it removed and they will discuss it today. The main issue with having it removed at this stage is the fact I need to put some weight on and have not proved that I can do this with eating alone. I did however suggest that I could use a nasogastric tube if I needed to feed a couple of nights a week for extra calories. I feel so frustrated that I should be exercising but am actually being limited by this. It seems counter productive to me. Anyway, I will let you all know what the outcome is!
p.s Seb says woof woof to Daisy and he agrees that horse poo is rather lovely ;-)
Monday, May 19, 2008
The Grand Reunion
Well, yesterday was the big day - when wee Seb came back home! He knew where he was right away and was desperate to get in the front door. When I opened the door I was treated to a few excited tail wags (a rarity from Seb) before he sprinted through to the kitchen and stood at the bark door. He then spent the next half hour outside barking at loud volumes and kicking up grass, just so everyone was quite clear that he was back in town. He was a little unsettled at first because he wasn't sure whether he was leaving with Anne and John or staying with us. He did bark when they left just in case they had accidentally forgotten him, but he soon settled down and was straight back into his usual routine.
After lunch I went upstairs and he followed me to the stairs and dropped his tail in a dejected manner, thinking I might be going out. He then saw me getting my boots on and began sighing loudly with despair. I then asked if he wanted to come with me - he cocked his head to the side with a quizzical look and then literally flung himself at me in excitement. He wouldn't let Andrew put his lead on.. it had to be me. We all went for a short walk and I took the route I used to do pre-transplant, which is a 10 minute walk, although make that 15 minutes to include Seb sniffing every tree we passed. I actually found it a lot harder than I expected and needed to stop a fair few times. I was a bit disappointed but Andrew pointed out that I still have the fitness of someone with 20% lung function, so it wasn't going to be that easy right away. I think I'm too hard on myself. Hopefully the more I do it, the easier it's going to get. Seb was pleased enough with his wee walk so that's the most important thing.
I was a bit bored in the afternoon because I have all this new found energy but am quite limited with what I can do at the moment. I offered to help Andrew paint the hut, but he thought lifting a paintbrush up and down would probably constitute putting pressure on the wound. Sensible man. I did hang the washing out though, and it's probably been well over a year since I did that!
I then caught up with a few things and made a list of all the people I have to phone to get all my equipment removed, so that will be todays task. The sooner I get rid of the oxygen etc, the better.
Since Andrew was out painting the hut I decided I would try and make dinner (not sure when I last did this). I was getting on really well until I lifted the pot to drain the rice, and I felt a searing pain through my sternum (breastbone). I sometimes forget that they did actually cut that bone and I think it is now held together with some wires (takes 4-6months to fully heal). I was told not to lift anything heavy but I didn't think the pot was that heavy. Needless to day I was very sore for the rest of the night and needed to take my stronger painkillers to try and settle it down. Very silly girl. It seems to be ok this morning though, so hopefully no harm done.
The other thing I did was order a medi-alert bracelet so that in a medical emergency the doctors would know that I have had a transplant. Newcastle advised me to do this because there are certain drugs, including some antibiotics, that can be fatal when mixed with my anti-rejection drugs. I am going to make a card for my wallet too, but thought I should have something to wear when I out walking Seb on my own. I managed to get one that is just a canvas strap with small metal disc, so it doesn't look too bad in the picture, although I will reserve judgement until it arrives.
I probably won't update my blog daily daily from now on, so if I don't post then don't worry, I'm probably just too busy enjoying my new lungs :-)
Saturday, May 17, 2008
First Day home...
I had a great nights sleep back in my own bed and felt much better this morning for it. I still can't believe how much better I feel in the mornings compared to before the transplant (although I'm still quite partial to a wee long lie). I was up fairly early this morning as I have to take my first dose of anti-rejection drugs at 8am and I couldn't get back to sleep afterwards. I had a lazy morning fixing my eyebrows(!), washing and straightening my hair (everyone in Newcastle thinks I have mad curly hair) and generally beautifying myself. I finished all that and realised it was still only mid morning. Usually by mid morning I would just be starting my physio, having just about gathered enough energy to do so. This would take an hour, twice a day and more if I had a chest infection. That's two whole hours extra I have every day now (or two whole hours extra in bed!) IV antibiotics (which I was on regularly) would take up another half hour three times a day, so that's even more free time. I'm sure soon enough I will wonder how on earth I fitted it all in.
I then spent quite a while trying to sort out my medications into various dosette boxes. Although I no longer have 'CF lungs' I still have all the other aspects of CF (the GI problems, diabetes, osteoporosis, reflux etc) so I still have all my usual medications to take, plus I have acquired quite a few new ones since the transplant (immunosuppressants, anti-virals, antibiotics, magnesium supplements, various painkillers). I will hopefully be able to stop some of these tablets as time goes on but for the moment it feels like I am constantly popping pills. I also have to continue with my nebulised antibiotics twice a day to try and prevent infection in my new lungs - I will still carry some of my old bugs in my upper airway and sinuses which can then infect the new lungs, although I won't have the same problems with sticky mucus as I had before. I have however been able to stop all my inhalers and other nebulisers, so at least that's a bonus.
This afternoon I was itching to leave the house, so we decided to take a drive to the garden centre. We didn't want to go to the local one as it is always very busy and I have to avoid crowded places for three months. So instead we drove to the middle of nowhere to find a garden centre which wasn't too busy. Unfortunately they didn't sell bird tables, which was what I was looking for, but I did manage to spend quite a lot of money on new plants for the rockery. I am also not supposed to touch soil (I can garden with gloves though) so I just wandered around like Lady Muck pointing to various things and telling Andrew to put them in the trolley. He says it's worrying how much money I can spend when I am well....but he hasn't seen anything yet. I have yet to go clothes shopping.
It was absolutely great being able to wander around the garden centre without getting breathless. I can't remember the last time I was able to do that. I was rather overexcited by this and have probably overdone it a little, but I think it's all good exercise and will help me build up my stamina. Andrews mum and dad have also bought me Wii Fit to help me exercise while having fun. For those who don't know, it's basically a game for the Nintendo Wii, where you stand on this step and you can do various exercises, like yoga, hula hooping, running, ski-ing, muscle workouts etc. I am taking it easy just now though, so I don't put any pressure on the wound, but it looks like it will be great fun. Andrew seems to be enjoying it anyway and managed to keep 5 hula hoops going for 225 turns. I had no idea he was so flexible.. but you learn something new everyday.
I'm just going to take it easy tonight and look forward to, hopefully, another good day tomorrow. Wee Seb is coming home so I am really looking forward to seeing him and getting a furry hug. I'm suspect I am going to get the cold shoulder treatment, but I'm sure he will quickly come round when he realises I can take him walks again. It sounds like he has been having a great time at his Granny's, lying up on sofa in the conservatory all day and going to the pet shop once a week to spend his pocket money. I kid you not. It will be back to reality for him, but I'm sure he will be glad to get into his own garden and will probably spend most of the afternoon barking - just so everyone knows he is back in town.
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