Sinuses....and cars!
Apologies for delay in updating but I've had a really busy week! I had the ENT on Wednesday and it was quite an interesting appointment. After some discussion and looking into my sinuses with an endoscope his verdict was "you have a very sick nose". I had gathered that much. He thinks I have something called "Empty nose syndrome" which has only been recognised fairly recently in the literature. It is effectively the result of far too much surgery on the sinuses (I have had around 10 operations over the years, the first being when I was only 7). Basically in an effort to improve drainage from the sinuses they have removed so much of the mucosa (lining of sinuses) that there is now not enough to keep my sinuses and nose healthy. The lining normally produce mucus to keep sinuses moist and lubricated, but instead mines is very dry and they cannot drain effectively. There is no treatment for this, other than sinus washouts to keep things moist, which I do daily anyway. He did suggest another device for doing the sinus wash outs, which is basically a squeezy plastic bottle so I have ordered one of these to try. He also suggested putting vaseline inside my nose, which should evaporate and help moisten the nose. However, he did also feel that although this syndrome can cause some pain, it is not usually the main feature - and pain is most definately my main symptom. He instead suspects that I have stenosis (narrowing) of the drainage pathway from frontal sinus, due to scarring. He is arranging an MRI scan to investigate this further and then I will go back and we can discuss the options. I think if there is narrowing then further surgery may help, but they would have to be very careful not to make matters worse. I'm not quite sure what to make of the consultation - I was glad to get some answers and felt he really knew what he was talking about, but at the same time I am terrified that there will be nothing else they can do! I cannot tolerate this pain for much longer - I am taking high doses of tramadol and codeine and still cannot get much relief. It's actually really dragging me down and it didn't surprise me to read that over 50% of people with empty nose syndrome also develop depression. Chronic pain is so frustrating, especially when I otherwise feel so well. My current plan is to pop down and see the GP while I am waiting on the MRI and see if they have any other suggestions for better pain control. There are other drugs that can be used and I think it might be worth investigating this. Hopefully following the MRI however, there will be something the ENT can offer. Fingers crossed!
The rest of my week was very busy because I was looking at cars ....so I am now the proud owner of a wee fiat grande punto in psychedelic azure :-) I didn't really want a new car but my old car was leased through the motability scheme and the lease ended this month. The normal procedure would be to order a new car, however because of the transplant all my benefits are under review so I wasn't able to do this. It was pretty bad timing really but these things happen and I had to say goodbye to my beautiful black megane coupe :-( I do really like the punto but the power difference is very noticable - its a 1.2 and the megane was a 1.6. Driving it home from the garage I kept thinking I had left the handbrake on haha! It's in great condition though (2 years old) and its 5 door which makes it easier for me to get Seb in and out. I think it will be ideal for tootling back and forth to work and I got a good deal.....I went to the garage without Andrew so I don't think the salesman was expecting me to haggle so much. He said he was very impressed with my persistance and boldness....and he really didn't see it coming ;-)
I also had fracture clinic yesterday morning, which went well. On xray the fracture is healing well and they are happy not to see me again unless I continue to have problems. I would say its more or less back to normal now - just occasional aching but nothing too bad. He did say I am at high risk of further fractures of a similar type but just to go back through A+E if I suspect its happened again. There is nothing really to be done prevention wise other than be careful when walking. Let's just hope it doesn't happen again!
So, it's been a busy few days and I am feeling quite tired. I am off to see Andrews mum, dad and gran tonight for some supper, and then tomorrow we are going through to my uncle's garden fete, which he holds in his parish every year. I will no doubt purchase lots of things I don't need, which I will then donate back to the fete next year...
Saturday, August 30, 2008
Tuesday, August 26, 2008
Wood Pigeons and Ear Candles
We went out for an anniversary dinner on Friday, since I was in Newcastle on the actual day. We went to a very posh restaurant (we like to be good to ourselves) and it was a lovely meal. The menu was a bit strange for my liking though - for example - "Perthshire wood pigeon". Now the main problem I have with this dish is the fact I have a wood pigeon in the garden called Percy. He likes to come daily for a bath and Seb loves to chase him. It's a love hate relationship. Anyway, based on this fact alone I could never eat wood pigeon. But to make matters worse they told me the pigeon was from Perthshire. Now I have a mental image of the pigeon growing up on the streets of Perthsire, perhaps having a family there and raising baby pigeons of his own. Now I definately couldn't order that dish! I had steak. I like to play safe.
I met some work friends on Saturday for lunch and it was lovely to catch up and have a good gossip. It's so nice being able to make plans like that and know that I will be well enough to go along and enjoy myself :-) The rest of the weekend was fairly quiet - we went to mum and dads on Sunday for dinner and yesterday we took Seb up to the country park. My foot has been much better and I have been taking Seb short walks for the past week, so thought it was time to try out something a little further afield. I got on ok, and Seb loved it, having not been for several weeks. The foot has been fine today so there doesn't seem to be any repercussions from my exertions. Hopefully this means the high heeled shoes will be ok for all my wedding ;-)
Tomorrow I have my ENT appointment, so hopefully they will have something to suggest. In the meantime I am trying out Hopi ear candling next week. Andrews mum had heard that it was very good for sinus problems so I am going to give it a go. Anything is worth a try and it can't do me any harm. Unless they burn my ears of course...
We went out for an anniversary dinner on Friday, since I was in Newcastle on the actual day. We went to a very posh restaurant (we like to be good to ourselves) and it was a lovely meal. The menu was a bit strange for my liking though - for example - "Perthshire wood pigeon". Now the main problem I have with this dish is the fact I have a wood pigeon in the garden called Percy. He likes to come daily for a bath and Seb loves to chase him. It's a love hate relationship. Anyway, based on this fact alone I could never eat wood pigeon. But to make matters worse they told me the pigeon was from Perthshire. Now I have a mental image of the pigeon growing up on the streets of Perthsire, perhaps having a family there and raising baby pigeons of his own. Now I definately couldn't order that dish! I had steak. I like to play safe.
I met some work friends on Saturday for lunch and it was lovely to catch up and have a good gossip. It's so nice being able to make plans like that and know that I will be well enough to go along and enjoy myself :-) The rest of the weekend was fairly quiet - we went to mum and dads on Sunday for dinner and yesterday we took Seb up to the country park. My foot has been much better and I have been taking Seb short walks for the past week, so thought it was time to try out something a little further afield. I got on ok, and Seb loved it, having not been for several weeks. The foot has been fine today so there doesn't seem to be any repercussions from my exertions. Hopefully this means the high heeled shoes will be ok for all my wedding ;-)
Tomorrow I have my ENT appointment, so hopefully they will have something to suggest. In the meantime I am trying out Hopi ear candling next week. Andrews mum had heard that it was very good for sinus problems so I am going to give it a go. Anything is worth a try and it can't do me any harm. Unless they burn my ears of course...
Friday, August 22, 2008
Big Shiny Gold Star for me!
My appointment at Newcastle went really well yesterday. We turned up at 7.15 am to find a queue of people waiting already, so I think I ended up being last to get all the tests done! But then I was one of the first to see the doctor so we actually escaped by 11am - a record so far.
I first had bloods taken - it took 3 painful attempts and me sitting with my hands in a bowl of hot water for 10minutes, but we got there in the end. My practice nurse must be really good at blood taking as she always gets it first time :-) I will get the blood results later today but I am not expecting any surprises. I then had lung function and x-ray. Now this is the good bit.....I blew 90% on my lung function!!!!!! I have never had a result like that in my entire life. I have always been described as 'moderately to severely' affected lung wise when I was growing up, so although I can't remember the numbers I know that my lungs have never functioned at 90%. As an example, I do know they were 45% when I was about 15/16 (and I went hill walking on that!) Anyway, needless to say I was rather smiley with that result.
Then we saw the doctor, who seemed to be really pleased with me. He showed me the graph of my lung function since transplant and it shows a lovely steady upward trend at each visit. Obviously it has to plateau soon but to have reached 90% by 4 months post transplant is pretty good going. He asked if I was taking lots of exercise and I said I was - to the point I fractured my foot - but he just seemed to be amused by that! Not so funny really ;-) The foot it much better but is still twinging a bit, so I am just being careful with it at the moment. All my other test results looked good -oxygen saturations 99%, blood pressure spot on, last blood tests all normal, weight steady and pulse has come down a bit. It was sitting at 12o all the time, but is now 105 which is much better. So, he basically said he couldn't ask for me to be any better at this stage!
I did mention the fact the acid reflux is still bothering me but he didn't have the results of the study yet, so we will discuss that when he has more information. I also have been getting terrible sinus pain again - its just constant and I am popping painkillers all the time, but with little effect. I used to take ibuprofen with good results but am not allowed to take that any more, so its making things difficult. I am still doing the daily sinus wash outs but they don't appear to be making much difference. Anyway, I have an appointment with ENT next week so am hoping they have some useful suggestions. I asked the doc yesterday if surgery would be feasible. He said my lungs are fine to cope with surgery but the problem lies more with the fact I am immunosuppressed and sinus surgery will release bacteria into the blood stream, which is not ideal. The ENT would need to discuss any options with newcastle and hopefully they can agree on something - I can be given prophylactic antibiotics pre surgery to help, so it has not been ruled out. I just really need to do something -its seriously dragging me down. I am wondering about looking into alternative therapies such as cranial osteopathy (to try and help sinuses drain) -if anyone has any experience of this, or any other bright ideas please let me know!
Other issue at the moment is this leaking peg tube site, which is getting worse as opposed to better. It can be fine for hours and then suddenly decide to leak badly, soaking through several dressings and creating an embarrassing situation. I asked about getting it stitched but apparently the surgeon doesn't like doing this because it rarely stops the leaking and has to be done via endoscope, so isn't entirely uninvasive. At this point I don't care if it only has a 10% chance of success - something needs to be done! I can't just have this leaking hole forever. I have been investigating it myself and I understand there are other surgical options, so I think my best bet is to ask to speak to the surgeon himself. The nurse is on holiday just now but I will phone next week and take it from there. I am not willing just to let this go on.
Although these other things are annoying, hopefully they can be sorted out soon enough. As far as the transplant team are concerned I am doing great.....so we will just go with that assessment for now :-) I also don't need to go back for another 7 weeks now - record gap! - and at that point they will do my 6 month bronchoscopy, which is another huge mile stone.
I did enquire about Louise when I was down at newcastle, but obviously they can't really tell me anything as its all confidential. I asked if it would be appropriate to hand in a card to ITU and they said that was fine, so all I can assume is that she is doing ok at this point in time. ITU said they would give her the card right away so I can also assume she is actually awake now. All sounds promising! Keep up the good thoughts :-)
My appointment at Newcastle went really well yesterday. We turned up at 7.15 am to find a queue of people waiting already, so I think I ended up being last to get all the tests done! But then I was one of the first to see the doctor so we actually escaped by 11am - a record so far.
I first had bloods taken - it took 3 painful attempts and me sitting with my hands in a bowl of hot water for 10minutes, but we got there in the end. My practice nurse must be really good at blood taking as she always gets it first time :-) I will get the blood results later today but I am not expecting any surprises. I then had lung function and x-ray. Now this is the good bit.....I blew 90% on my lung function!!!!!! I have never had a result like that in my entire life. I have always been described as 'moderately to severely' affected lung wise when I was growing up, so although I can't remember the numbers I know that my lungs have never functioned at 90%. As an example, I do know they were 45% when I was about 15/16 (and I went hill walking on that!) Anyway, needless to say I was rather smiley with that result.
Then we saw the doctor, who seemed to be really pleased with me. He showed me the graph of my lung function since transplant and it shows a lovely steady upward trend at each visit. Obviously it has to plateau soon but to have reached 90% by 4 months post transplant is pretty good going. He asked if I was taking lots of exercise and I said I was - to the point I fractured my foot - but he just seemed to be amused by that! Not so funny really ;-) The foot it much better but is still twinging a bit, so I am just being careful with it at the moment. All my other test results looked good -oxygen saturations 99%, blood pressure spot on, last blood tests all normal, weight steady and pulse has come down a bit. It was sitting at 12o all the time, but is now 105 which is much better. So, he basically said he couldn't ask for me to be any better at this stage!
I did mention the fact the acid reflux is still bothering me but he didn't have the results of the study yet, so we will discuss that when he has more information. I also have been getting terrible sinus pain again - its just constant and I am popping painkillers all the time, but with little effect. I used to take ibuprofen with good results but am not allowed to take that any more, so its making things difficult. I am still doing the daily sinus wash outs but they don't appear to be making much difference. Anyway, I have an appointment with ENT next week so am hoping they have some useful suggestions. I asked the doc yesterday if surgery would be feasible. He said my lungs are fine to cope with surgery but the problem lies more with the fact I am immunosuppressed and sinus surgery will release bacteria into the blood stream, which is not ideal. The ENT would need to discuss any options with newcastle and hopefully they can agree on something - I can be given prophylactic antibiotics pre surgery to help, so it has not been ruled out. I just really need to do something -its seriously dragging me down. I am wondering about looking into alternative therapies such as cranial osteopathy (to try and help sinuses drain) -if anyone has any experience of this, or any other bright ideas please let me know!
Other issue at the moment is this leaking peg tube site, which is getting worse as opposed to better. It can be fine for hours and then suddenly decide to leak badly, soaking through several dressings and creating an embarrassing situation. I asked about getting it stitched but apparently the surgeon doesn't like doing this because it rarely stops the leaking and has to be done via endoscope, so isn't entirely uninvasive. At this point I don't care if it only has a 10% chance of success - something needs to be done! I can't just have this leaking hole forever. I have been investigating it myself and I understand there are other surgical options, so I think my best bet is to ask to speak to the surgeon himself. The nurse is on holiday just now but I will phone next week and take it from there. I am not willing just to let this go on.
Although these other things are annoying, hopefully they can be sorted out soon enough. As far as the transplant team are concerned I am doing great.....so we will just go with that assessment for now :-) I also don't need to go back for another 7 weeks now - record gap! - and at that point they will do my 6 month bronchoscopy, which is another huge mile stone.
I did enquire about Louise when I was down at newcastle, but obviously they can't really tell me anything as its all confidential. I asked if it would be appropriate to hand in a card to ITU and they said that was fine, so all I can assume is that she is doing ok at this point in time. ITU said they would give her the card right away so I can also assume she is actually awake now. All sounds promising! Keep up the good thoughts :-)
Wednesday, August 20, 2008
Happy Anniversary to Us!
Today is my 4th wedding anniversary. The last few years have been difficult, coping with the loss of Frances Ann, with my declining health, being on the transplant list and finally the major events of this year when the transplant finally came. What a roller coaster our married life has been! But without Andrew I'm not sure how I would have coped and at least I can say we have jumped these hurdles together and maybe that has made us even stronger. In fact, I know it has.
Maybe now we are due some luck and a smoother journey for a while. Here's to a great year ahead, with fun, laughter and love :-) Happy Anniversary to us!
Tuesday, August 19, 2008
Back to reality
Well after my five minutes of fame on Friday, it's back to reality. It's even back to reality with the hair, which I have been wrestling with all week. The hair dresser made styling it look pretty simple but unfortunately this is not so! The main issue is the fact my hair is actually very curly (believe it or not) so I have to learn to tame it more with the hair dryer. I have in fact even ordered a new hair dryer - one of those salon style ideas with lots of speed and heat settings (my current one has one setting only haha). It arrived this morning - there were 21 (!) colours to choose from and I thought I had ordered purple, but I had in fact ordered a horrible beige colour. Probably the worst one out of all 21. Ah well, as long as it works. Will try it tomorrow...
I've had a quiet time of it lately, mostly trying to rest the foot. It seemed a lot better yesterday so I took Seb for a short walk without the crutches and there did not appear to be any repercussions. I know I should probably rest it more, but I was literally going stir crazy being stuck in the house (as was Seb) and I would even say that it was beginning to affect my mood and I felt quite down. It was just like being back to pre transplant when I couldn't get out and about and was just stuck in the house all day feeling a bit sorry for myself. Anyway I felt a lot better after getting out in the fresh air for a short while so I think it was the most sensible thing to do - for my sanity more than anything. I went out again today and the foot seems to be ok so hopefully that means it is well on the mend now. It's probably a bit too soon to be driving again (he said to wait until I had been walking on it comfortably for a 'while') - but hopefully soon!
I went into my work last week to catch up with people and try and formulate a plan for going back to work. Newcastle had advised me 6 months to a year before I go back to work. I was originally planning on the 6 month mark and was hoping to go back in early November, but have instead decided that January is more realistic. This gives me time to get through my 6 month bronchoscopy, continue the rehabilitation and also to have a chance to enjoy my first Christmas and New Year post transplant :-) So hopefully I will be going back in early January - initially just a few half days a week and take it from there. These part time posts are funded separately, and there is very limited funding available, however I have been on the list since my transplant so should be ok in this respect. I will be going back to the same job I was doing in Old Age Psychiatry within the same community team (which is fantastic because I love the team and they all know about my transplant, so no need to explain anything). I don't know what my longer term plans will be though. I think possibly looking at staff grade jobs - these are non training posts, which basically means you are not under an obligation to sit the exams, although I probably will anyway, and there is no on call - but on the downside you are not then climbing the ladder to consultancy (although this might change in the future). I suppose it depends how much that title means to you! However as a staff grade I would still manage my own case load and make my own decisions, so I think this would be a good way forward for me. I feel that I didn't go through this transplant and be given a second chance at life, to then spend it in a training post doing overnight and weekend on call and being put under pressure to sit post graduate exams within a certain time frame. I love my job and I am ambitious, but I also have a different perspective on things now. I want to live my life as well!
I am back down in Newcastle tomorrow for clinic on Thursday. It's just a routine clinic with chest xray and lung function. I don't think there will be anything to worry about so hopefully will be straight back up the road on Thursday afternoon/evening. I will post with an update.
Also just to mention that a friend of mine, Louise, who has been waiting on her transplant for the past year, has finally had the call! I don't have any more news other than she is getting the surgery just now in Newcastle - so keep her in your prayers please.
p.s I think I have emailed the daily record article to everyone who asked - if I have missed someone please let me know, or if anyone else wants a copy just leave me your email in the comments or guestbook :-)
Well after my five minutes of fame on Friday, it's back to reality. It's even back to reality with the hair, which I have been wrestling with all week. The hair dresser made styling it look pretty simple but unfortunately this is not so! The main issue is the fact my hair is actually very curly (believe it or not) so I have to learn to tame it more with the hair dryer. I have in fact even ordered a new hair dryer - one of those salon style ideas with lots of speed and heat settings (my current one has one setting only haha). It arrived this morning - there were 21 (!) colours to choose from and I thought I had ordered purple, but I had in fact ordered a horrible beige colour. Probably the worst one out of all 21. Ah well, as long as it works. Will try it tomorrow...
I've had a quiet time of it lately, mostly trying to rest the foot. It seemed a lot better yesterday so I took Seb for a short walk without the crutches and there did not appear to be any repercussions. I know I should probably rest it more, but I was literally going stir crazy being stuck in the house (as was Seb) and I would even say that it was beginning to affect my mood and I felt quite down. It was just like being back to pre transplant when I couldn't get out and about and was just stuck in the house all day feeling a bit sorry for myself. Anyway I felt a lot better after getting out in the fresh air for a short while so I think it was the most sensible thing to do - for my sanity more than anything. I went out again today and the foot seems to be ok so hopefully that means it is well on the mend now. It's probably a bit too soon to be driving again (he said to wait until I had been walking on it comfortably for a 'while') - but hopefully soon!
I went into my work last week to catch up with people and try and formulate a plan for going back to work. Newcastle had advised me 6 months to a year before I go back to work. I was originally planning on the 6 month mark and was hoping to go back in early November, but have instead decided that January is more realistic. This gives me time to get through my 6 month bronchoscopy, continue the rehabilitation and also to have a chance to enjoy my first Christmas and New Year post transplant :-) So hopefully I will be going back in early January - initially just a few half days a week and take it from there. These part time posts are funded separately, and there is very limited funding available, however I have been on the list since my transplant so should be ok in this respect. I will be going back to the same job I was doing in Old Age Psychiatry within the same community team (which is fantastic because I love the team and they all know about my transplant, so no need to explain anything). I don't know what my longer term plans will be though. I think possibly looking at staff grade jobs - these are non training posts, which basically means you are not under an obligation to sit the exams, although I probably will anyway, and there is no on call - but on the downside you are not then climbing the ladder to consultancy (although this might change in the future). I suppose it depends how much that title means to you! However as a staff grade I would still manage my own case load and make my own decisions, so I think this would be a good way forward for me. I feel that I didn't go through this transplant and be given a second chance at life, to then spend it in a training post doing overnight and weekend on call and being put under pressure to sit post graduate exams within a certain time frame. I love my job and I am ambitious, but I also have a different perspective on things now. I want to live my life as well!
I am back down in Newcastle tomorrow for clinic on Thursday. It's just a routine clinic with chest xray and lung function. I don't think there will be anything to worry about so hopefully will be straight back up the road on Thursday afternoon/evening. I will post with an update.
Also just to mention that a friend of mine, Louise, who has been waiting on her transplant for the past year, has finally had the call! I don't have any more news other than she is getting the surgery just now in Newcastle - so keep her in your prayers please.
p.s I think I have emailed the daily record article to everyone who asked - if I have missed someone please let me know, or if anyone else wants a copy just leave me your email in the comments or guestbook :-)
Friday, August 15, 2008
Five minutes of Fame
Click here for the article online (scroll down page after its loaded)
You can only see the photo's in the paper - if anyone is desperate to see them and can't get the paper, then leave me your email in comments or guestbook and I will try and scan the article.
I'm really pleased with the article overall - the diary part is what I wrote myself, and bar a little editing to make the word count and the adding of some headings, they haven't changed anything. I'm also pleased with the photo (thank goodness), although I have to admit my hair no longer looks so neat and tidy. I tried to dry it myself yesterday and it's sticking up all over the place! More effort and practice required I think ;-)
Click here for the article online (scroll down page after its loaded)
You can only see the photo's in the paper - if anyone is desperate to see them and can't get the paper, then leave me your email in comments or guestbook and I will try and scan the article.
I'm really pleased with the article overall - the diary part is what I wrote myself, and bar a little editing to make the word count and the adding of some headings, they haven't changed anything. I'm also pleased with the photo (thank goodness), although I have to admit my hair no longer looks so neat and tidy. I tried to dry it myself yesterday and it's sticking up all over the place! More effort and practice required I think ;-)
Thursday, August 14, 2008
Wednesday, August 13, 2008
Pampering
So I headed off to Debenhams on Monday morning and met my personal shopper, Therese, who was to help me choose a new outfit for the daily record photo shoot. She had already selected some items to try and get an idea of what I liked and disliked - she said I was easy to work with because I was very definite about what I liked, haha. I had already spotted some trousers in the Principles part of Debenhams a couple of weeks ago but unfortunately I could only choose from Debenhams own ranges so those weren't allowed. Needless to say I bought them anyway ;-) I wanted a casual outfit so that it would be something I could wear again, as I am not much of a fancy dresser. We eventually decided on some jeans, a grey t shirt top with a grey pin stripe fitted blazer on top. I also got little grey tweedy ballet shoes, a matching grey bag and a necklace and bracelet! I was really pleased with the final outfit and I thought it was more interesting with the blazer but was still something I would be able to wear again. As it was now lunch time the personal shopper arranged for us to get a free lunch in Debenhams, so that was a lovely
way to finish the morning.
Yesterday morning we had to be at Taylor Ferguson's (top Glasgow salon) for 8.45am so it was an early start for us (mum came with me). I was delighted when I arrived and realised it was Taylor Ferguson himself that would be cutting my hair -nothing but the best! I think he was probably a little disappointed with my lack of adventure, as I clutched my hair and said 'not too short!' We decided on some layers, as it was all pretty flat before, and a side fringe that I can keep back into hair or bring forward. Colour wise we went a shade darker with some tiny blonde high lights on top. I think he wanted to do something a bit wilder and he said that I shouldn't be going darker in the summer - what summer?! However he also said it was my hair so my choice and I stuck to my guns and was really pleased with the final look. I think it's probably the best cut I've had, so now I need to save up to go back in future :-) The junior stylist came to blow dry it afterwards and she said "I think we will go big volume with bits flicking out all round" and I said "...errr...no, can you just dry it straight?!" She said that I had to tell Taylor Ferguson that I had asked for it like that! He came over afterwards to finish it off and he put this strange powder through it which immediately made it go really big. He kept lifting it up to show me how to "joosh" it up (meaning, make it big). After he left I flattened it all down again but unfortunately he came back to check on me before we left and saw what I had done. I think he despaired. He told the journalist that I had to 'joosh' it for the photos and that I knew how to do this. Needless to say I didn't joosh anything..
After the hair I also got my makeup done in the salon. She didn't ask me what I liked or anything - just got on with it. She appeared to use about four different eyeliners and I was rather alarmed with the end result. In fact when I opened my eyes and looked in the mirror I had a look of great surprise, so much so that she asked if I was ok. I paused before quietly saying 'do you not think the eye liner is a bit much?" I think she was quite annoyed actually and retorted that if I didn't have it like that it would look as if I had no make up on in the photo. So, i just went with it. I think it's because I am not used to wearing much make up so it was just so different - I got more used to it as the day went on, so hopefully it will look ok in the photograph.
After the hair and make up the journalist picked us up and we went over to the Daily Record studio. We had to wait quite a while as another shoot was taking place and they were running late. It wasn't too bad though and we has some lunch while we waited and then I had to get changed into my new outfit. The photographer didn't take too long with my photos as he was aware that my foot was sore so standing without the crutches for too long was a bit awkward. I had some shots taken standing up and then a few sitting on the floor. Then he asked mum to get into the photo. She was mortified and said "but I haven't had my makeup done!" but then she didn't hesitate too long before getting into shot. He took a couple of really cheesy photos of mum and me with faces together. Oh dear. I'm not sure which one they will choose but hopefully I won't be too embarrassed by the final choice.
The journalist thinks the article will be in the paper towards the end of the week but will hopefully let me know the day before. You will probably be able to see the article online but I think you will only get the photos in the paper itself. I don't have any pics of the new hair so you will just need to wait and see!
p.s speaking of the daily record, if you still haven't voted for wee Seb in the petchamp competition, then please do! I think it closes at the end of this month.
click here to vote for Seb...you need to register first and then you can vote in each category :-)
So I headed off to Debenhams on Monday morning and met my personal shopper, Therese, who was to help me choose a new outfit for the daily record photo shoot. She had already selected some items to try and get an idea of what I liked and disliked - she said I was easy to work with because I was very definite about what I liked, haha. I had already spotted some trousers in the Principles part of Debenhams a couple of weeks ago but unfortunately I could only choose from Debenhams own ranges so those weren't allowed. Needless to say I bought them anyway ;-) I wanted a casual outfit so that it would be something I could wear again, as I am not much of a fancy dresser. We eventually decided on some jeans, a grey t shirt top with a grey pin stripe fitted blazer on top. I also got little grey tweedy ballet shoes, a matching grey bag and a necklace and bracelet! I was really pleased with the final outfit and I thought it was more interesting with the blazer but was still something I would be able to wear again. As it was now lunch time the personal shopper arranged for us to get a free lunch in Debenhams, so that was a lovely
way to finish the morning.
Yesterday morning we had to be at Taylor Ferguson's (top Glasgow salon) for 8.45am so it was an early start for us (mum came with me). I was delighted when I arrived and realised it was Taylor Ferguson himself that would be cutting my hair -nothing but the best! I think he was probably a little disappointed with my lack of adventure, as I clutched my hair and said 'not too short!' We decided on some layers, as it was all pretty flat before, and a side fringe that I can keep back into hair or bring forward. Colour wise we went a shade darker with some tiny blonde high lights on top. I think he wanted to do something a bit wilder and he said that I shouldn't be going darker in the summer - what summer?! However he also said it was my hair so my choice and I stuck to my guns and was really pleased with the final look. I think it's probably the best cut I've had, so now I need to save up to go back in future :-) The junior stylist came to blow dry it afterwards and she said "I think we will go big volume with bits flicking out all round" and I said "...errr...no, can you just dry it straight?!" She said that I had to tell Taylor Ferguson that I had asked for it like that! He came over afterwards to finish it off and he put this strange powder through it which immediately made it go really big. He kept lifting it up to show me how to "joosh" it up (meaning, make it big). After he left I flattened it all down again but unfortunately he came back to check on me before we left and saw what I had done. I think he despaired. He told the journalist that I had to 'joosh' it for the photos and that I knew how to do this. Needless to say I didn't joosh anything..
After the hair I also got my makeup done in the salon. She didn't ask me what I liked or anything - just got on with it. She appeared to use about four different eyeliners and I was rather alarmed with the end result. In fact when I opened my eyes and looked in the mirror I had a look of great surprise, so much so that she asked if I was ok. I paused before quietly saying 'do you not think the eye liner is a bit much?" I think she was quite annoyed actually and retorted that if I didn't have it like that it would look as if I had no make up on in the photo. So, i just went with it. I think it's because I am not used to wearing much make up so it was just so different - I got more used to it as the day went on, so hopefully it will look ok in the photograph.
After the hair and make up the journalist picked us up and we went over to the Daily Record studio. We had to wait quite a while as another shoot was taking place and they were running late. It wasn't too bad though and we has some lunch while we waited and then I had to get changed into my new outfit. The photographer didn't take too long with my photos as he was aware that my foot was sore so standing without the crutches for too long was a bit awkward. I had some shots taken standing up and then a few sitting on the floor. Then he asked mum to get into the photo. She was mortified and said "but I haven't had my makeup done!" but then she didn't hesitate too long before getting into shot. He took a couple of really cheesy photos of mum and me with faces together. Oh dear. I'm not sure which one they will choose but hopefully I won't be too embarrassed by the final choice.
The journalist thinks the article will be in the paper towards the end of the week but will hopefully let me know the day before. You will probably be able to see the article online but I think you will only get the photos in the paper itself. I don't have any pics of the new hair so you will just need to wait and see!
p.s speaking of the daily record, if you still haven't voted for wee Seb in the petchamp competition, then please do! I think it closes at the end of this month.
click here to vote for Seb...you need to register first and then you can vote in each category :-)
Tuesday, August 12, 2008
Sunday, August 10, 2008
Back home..
I enjoyed the rest of my wee break in Ireland and although the weather turned against us, we still managed to get out and about and have a lovely time. On thursday we visited the Giants Causeway - I think they show this on all the TV adverts encouraging people to visit Ireland, but I must say it looks very different in the proper Irish weather.
It was a little wet..
...and a little windy!
Fortunately there was a wee bus that takes you down to the shore, as there is no way I could walk down there on crutches. Rather amusingly myself and Andrew got the bus for half price because mum had said to the driver "just us and the two young ones". He obviously assumed she meant two children - I know I only look about 15 but I think Andrew is pushing it getting on for a half fare, haha! On the way back up there were only three seats left on the bus so poor Dad was left to walk back up in the pouring rain. It's quite a hike up the hill and we all felt sorry for him as we browsed around the gift shop while waiting ;-)
In the afternoon we went into Derry for some shopping. We went to one of the big centres so we could get a wheelchair for me, as technically I'm not supposed to be walking about on this foot. I have tried to be good but it's quite hard when you are away on holiday. We managed to make a few purchases each (the men spent more than us!) although I was a bit huffy in my wheelchair. It took my right back to the frustration of pre-transplant and I hated the feeling - like I had just taken 10 steps backwards and was suddenly relying on everyone else again. I must say though, that despite the broken foot, I am still more mobile than I was before the transplant. At least I am not breathless and I am not tired and unwell, so it was still much easier to get about.
On Friday we went to Letterkenny for a look about and just did a bit more touring around Donegal. We also went to the cinema to see the new batman film "The Dark Knight" which was quite good. We did also go to the pub one night as they had live music. It hadn't started when we arrived and we thought we were clever taking a seat quite far from the speaker so it woudn't be too loud. Big mistake - we couldn't hear hee-haw! Although to be honest the pub was so noisy that I don't think the people standing right next to the band could hear much either. After enjoying a couple of pints of guiness we headed home, although I nearly forgot my crutches - funny how the guiness is a cure for so many ailments ;-)
So, all in all a great holiday was had by all. It's back to reality now though and already the foot is getting on my nerves because I can't just come and go as I please. Wee Seb is back home and has been giving me 'the stare' all day, hoping that I will take him a walk. I wish I could explain to him why I can't take him out...and I'm not sure how long it will be before I can. Very frustrating! On the upside though, I have my trip to choose a new outfit courtesy of the Daily Record tomorrow and then getting my new hair-do on Tuesday. I'm not sure how adventurous I will be but probably not very. Mum is coming to stay for a couple of nights as I can't drive to any of these places so she is having to be my chauffeur and dog walker again. Just when she thought she had her life back! Never mind, it hopefully wont be for too long. I think the article will be in wednesday or thursday paper but if I hear differently I will update the blog.
Leaving you with some more pics of Ireland...this time without the rain
Baby swallows in a nest!
Wednesday, August 06, 2008
Blogging from Ireland
It's me! From Ireland!
We set off early on Monday morning to catch the ferry from Troon to Larne - needless to say we were the last car on the ferry but we made it, so that's the important thing. We are staying in a small town called Buncrana which is a couple of hours drive from Larne, so it was late afternoon before we finally arrived. After the obligatory Irish 'cup o tea' we went for a wee drive around the local area, which is really beautiful, and then went out for dinner.
Yesterday we set off fairly early and spent the morning at the 'Famine village' which tells the story of life in Ireland over the past 200 years. It was really interesting and of course there was another 'cup o tea' at the end of the tour. It really is a shame that I don't actually drink tea! In the afternoon we drove up to Malin Head, which is the most northerly point in Ireland. We got out the car at the top of the hill, nearly got blown away and pretty much got straight back in! We then just did a bit of touring around in the car as I am pretty limited with walking at the moment.
Today I insisted on everyone going to a pet show in a nearby town called Clonmany. They have a festival at this time every year so the town was very busy. I enjoyed watching all the dogs in the show, although I think everyone else was pretty bored. I didn't however make them stay for the cats and rabbits ;-) It's a shame wee Seb wasn't with us as I am sure he would have loved meeting all the other dogs. I've heard he is having a great time at Anne and John's and they have sent us a photo of him lounging up on the sofa (which he is most certainly not allowed to do at home!) Amazing what he gets away with at his grannys :-)
My foot hasn't been too painful as long as I keep the weight off it although I am still hobbling about on crutches. I am getting pretty good at them now and can move quite fast - only problem is that my right hand is now hurting from leaning on the crutches and it's putting quite a lot of pressure through my breast bone (which is still healing from the surgery). I did want to do some upper body strengthening exercises though and I am certainly getting to do that so I won't complain too much! I did also have a bit of a minor panic before we left because I started to feel quite sick over the weekend and when I phoned Newcastle to ask about taking anti-sickness tablets they insisted I get some urgent bloods in case something else was wrong. I couldn't bear the thought of going to A+E for a second time that weekend so after a phone call to my CF ward they very kindly agreed to check my bloods on Sunday night. The main worry was that my magnesium levels were low again but they were fine. My kidney function was off slightly but this could be something as simple as not drinking enough, so I am taking lots of fluids and this can get rechecked once I am home. The other thing that could make me feel sick is the antirejection levels being too high - these bloods are processed by Newcastle though so I won't get the results until tomorrow or Friday. I have been feeling less sick as the week has gone on though, so hopefully it was just nothing at all!
Well, I will leave you with some pictures of my trip so far...
Glashedy Rock
View from Malin Head
Mum having a carry on (she may have been singing 'the hills are alive')
Sunday, August 03, 2008
Fracture Clinic
I had to attend the fracture clinic this morning, although there isn't really much more news to report! The doctor said he could see the fracture on x-ray (3rd metatarsal for anyone interested) but it wasn't displaced, so I don't need a cast on. Thank goodness! They took the bandages off from yesterday and replaced this with some double rolled tubigrip - so I can get my trainer on now, where as yesterday I had to put Andrew's giant sandle on, which did make me look rather ridiculous. I have to go back in three weeks time if it is still painful and they will re-xray it. Hopefully I will be well on the road to recovery by then.
I have been told the pain will probably start to ease after 10-14 days although it will remain uncomfortable after that. I can start to walk on it when it becomes painless to do so, but until then it's to be rested as much as possible and I have to use the crutches for getting about. I'm not allowed to drive until I have been able to walk on it painlessly for some time, so not sure how long that will take. I am more concerned with being able to get into high heeled shoes for all my weddings in September. I really must be able to wear those red ones by the end of September though!
I asked about prevention of further fracture but he said there was very little I could do, other than 'trying not to fall over and not jumping up and down'. Helpful advice ;-) He did also say that it's quite possible the other metatarsals could also fracture because of the change in weight distribution on them. Let's just hope that doesn't happen. His only other advice was to make sure I wore decent thick soled trainers/shoes - I wear my walking trainers most of the time anyway so not much more I can do there. I will make sure I wear decent trainers when driving as well though, in case that has anything to do with it.
Anyway that's all my foot news for today, so now I'm off to finish packing. Ireland here I come..
I had to attend the fracture clinic this morning, although there isn't really much more news to report! The doctor said he could see the fracture on x-ray (3rd metatarsal for anyone interested) but it wasn't displaced, so I don't need a cast on. Thank goodness! They took the bandages off from yesterday and replaced this with some double rolled tubigrip - so I can get my trainer on now, where as yesterday I had to put Andrew's giant sandle on, which did make me look rather ridiculous. I have to go back in three weeks time if it is still painful and they will re-xray it. Hopefully I will be well on the road to recovery by then.
I have been told the pain will probably start to ease after 10-14 days although it will remain uncomfortable after that. I can start to walk on it when it becomes painless to do so, but until then it's to be rested as much as possible and I have to use the crutches for getting about. I'm not allowed to drive until I have been able to walk on it painlessly for some time, so not sure how long that will take. I am more concerned with being able to get into high heeled shoes for all my weddings in September. I really must be able to wear those red ones by the end of September though!
I asked about prevention of further fracture but he said there was very little I could do, other than 'trying not to fall over and not jumping up and down'. Helpful advice ;-) He did also say that it's quite possible the other metatarsals could also fracture because of the change in weight distribution on them. Let's just hope that doesn't happen. His only other advice was to make sure I wore decent thick soled trainers/shoes - I wear my walking trainers most of the time anyway so not much more I can do there. I will make sure I wear decent trainers when driving as well though, in case that has anything to do with it.
Anyway that's all my foot news for today, so now I'm off to finish packing. Ireland here I come..
Saturday, August 02, 2008
Broken Foot!
Well I have just spent the morning at A+E and the bad news is that I have fractured my foot, so I now have a big padded bandage up to my knee and a pair of crutches! The pain came on suddenly yesterday and by this morning I could hardly put any weight on the foot. It's a stress fracture, probably caused by all the activity my poor bones are not accustomed to, in combination with the fact I have osteoporosis so the bones are already thin. I am already on medication for my bones, so not sure what else I can do. Probably some exercises to build the leg muscles so that they can protect the bones more effectively. I have to attend fracture clinic tomorrow morning so will get a better idea of how long it take to heal, and hopefully wont end up with a cast on! I can't believe this has happened when I am going to Ireland on Monday -I was imagining nice long walks on the beach and lots of sight seeing. I think perhaps I should take a good book instead ;-) I also wont be able to drive again, having just got this freedom back last week - not sure how long this will be for, but hopefully not too long as it really feels like a backward step. I do have to see the funny side of things though and you have to admit, it really is quite ironic that after going through major surgery and getting new lungs, I now can't walk because of a sore foot. We also had a good laugh in A+E when, sitting waiting on the doctor, Andrew said 'we could just put one of those on each and see if anyone says anything' while pointing to a pile of large plastic neck collars. I took an absolute fit of the giggles as the visual image of this popped into my head and by the time the doctor arrived I had tears rolling down my cheeks. Luckily I think he assumed it was just the pain ;-)
Other news is that I am going to be in the Daily Record - probably the week after next, but I will keep you posted. Some of you will remember that I was in the record last year, when they printed a copy of the speech I gave at Scottish Parliament, as part of the Live Life then Give Life campaign, where I talked about life on the transplant list. Well, they contacted me after my transplant to see if I would do a follow up article. I was initially very hesitant as I get really anxious about these things, however we have reached a compromise whereby I have written most of the article myself (a good 1600 words) - it's a sort of diary of my time on list until my transplant and hopefully will give people a good insight into the whole experience. As a treat they have organised for me to get my hair done at Taylor Ferguson's, a top Glasgow salon, and also for me to choose a new outfit from Debenhams!! This is all happening the week I come back from Ireland so it will be a busy but exiting week :-)
I also had a major faux pas this week (actually so far this hasn't been a great week!) I had the great news from my transplant doctor that I would be allowed to fly down to London for one of my September weddings, which is in Suffolk. He said I would be ok with a short haul flight. Anyway, I got myself all organised and booked the flights and arranged hire car at the airport. It was only when I was telling someone about the wedding and they asked the date, that I realised with that awful sinking feeling that I had in fact booked the flights for the wrong dates! I had booked them for the dates of one of my other September weddings. Arghhh...what a doughball! It cost me £80 to transfer the flights but at least it's sorted now. I could have potentially turned up that weekend with no flights. Feeling really stupid about the whole thing, I was saying to Andrew how it really wasn't like me. He did agree that I was usually a lot more on the ball than that but did suggest I had a slight problem with 'numbers on the internet'. He then cited the first example of the time I tried to order 3 onions from tesco online but did infact order 3kg. They actually brought 3kg as well - bags and bags of onions. I was giving them away for weeks! Then there was the time I sold a painting on ebay and only after the completion of the sale realised I had advertised it as 2 metres long when it was in fact 20cm. Not much difference there then! Fortunately the buyer hadn't realised the size and was probably just relieved she wasn't about to take delivery of a painting bigger than a human being. None of these are as bad as the time my mum managed to order 3 golf trolleys online, having thought the order has not gone through initially. Maybe the problem is hereditary...
Anyway, I won't be blogging for a wee while as I'm not back from Ireland until next Saturday. Until then if you haven't already voted for Seb (see post below) then do it now! How can this wee face not deserve 5 stars??!
Well I have just spent the morning at A+E and the bad news is that I have fractured my foot, so I now have a big padded bandage up to my knee and a pair of crutches! The pain came on suddenly yesterday and by this morning I could hardly put any weight on the foot. It's a stress fracture, probably caused by all the activity my poor bones are not accustomed to, in combination with the fact I have osteoporosis so the bones are already thin. I am already on medication for my bones, so not sure what else I can do. Probably some exercises to build the leg muscles so that they can protect the bones more effectively. I have to attend fracture clinic tomorrow morning so will get a better idea of how long it take to heal, and hopefully wont end up with a cast on! I can't believe this has happened when I am going to Ireland on Monday -I was imagining nice long walks on the beach and lots of sight seeing. I think perhaps I should take a good book instead ;-) I also wont be able to drive again, having just got this freedom back last week - not sure how long this will be for, but hopefully not too long as it really feels like a backward step. I do have to see the funny side of things though and you have to admit, it really is quite ironic that after going through major surgery and getting new lungs, I now can't walk because of a sore foot. We also had a good laugh in A+E when, sitting waiting on the doctor, Andrew said 'we could just put one of those on each and see if anyone says anything' while pointing to a pile of large plastic neck collars. I took an absolute fit of the giggles as the visual image of this popped into my head and by the time the doctor arrived I had tears rolling down my cheeks. Luckily I think he assumed it was just the pain ;-)
Other news is that I am going to be in the Daily Record - probably the week after next, but I will keep you posted. Some of you will remember that I was in the record last year, when they printed a copy of the speech I gave at Scottish Parliament, as part of the Live Life then Give Life campaign, where I talked about life on the transplant list. Well, they contacted me after my transplant to see if I would do a follow up article. I was initially very hesitant as I get really anxious about these things, however we have reached a compromise whereby I have written most of the article myself (a good 1600 words) - it's a sort of diary of my time on list until my transplant and hopefully will give people a good insight into the whole experience. As a treat they have organised for me to get my hair done at Taylor Ferguson's, a top Glasgow salon, and also for me to choose a new outfit from Debenhams!! This is all happening the week I come back from Ireland so it will be a busy but exiting week :-)
I also had a major faux pas this week (actually so far this hasn't been a great week!) I had the great news from my transplant doctor that I would be allowed to fly down to London for one of my September weddings, which is in Suffolk. He said I would be ok with a short haul flight. Anyway, I got myself all organised and booked the flights and arranged hire car at the airport. It was only when I was telling someone about the wedding and they asked the date, that I realised with that awful sinking feeling that I had in fact booked the flights for the wrong dates! I had booked them for the dates of one of my other September weddings. Arghhh...what a doughball! It cost me £80 to transfer the flights but at least it's sorted now. I could have potentially turned up that weekend with no flights. Feeling really stupid about the whole thing, I was saying to Andrew how it really wasn't like me. He did agree that I was usually a lot more on the ball than that but did suggest I had a slight problem with 'numbers on the internet'. He then cited the first example of the time I tried to order 3 onions from tesco online but did infact order 3kg. They actually brought 3kg as well - bags and bags of onions. I was giving them away for weeks! Then there was the time I sold a painting on ebay and only after the completion of the sale realised I had advertised it as 2 metres long when it was in fact 20cm. Not much difference there then! Fortunately the buyer hadn't realised the size and was probably just relieved she wasn't about to take delivery of a painting bigger than a human being. None of these are as bad as the time my mum managed to order 3 golf trolleys online, having thought the order has not gone through initially. Maybe the problem is hereditary...
Anyway, I won't be blogging for a wee while as I'm not back from Ireland until next Saturday. Until then if you haven't already voted for Seb (see post below) then do it now! How can this wee face not deserve 5 stars??!
Wednesday, July 30, 2008
Vote for Wee Seb!
I entered Seb in the Daily Record 'Petchamp' competition :-) They have a category for best pet video so I submitted the 'Seb doing CPR' clip. Click HERE and vote for wee Seb!!
I am of course also entering him in the best looking dog category, although the first person to rate him only gave him 2 stars. Poor wee boy!! Click HERE to vote for the photo.
I think you need to register to vote...but go on, you know you want to!
Incidentally this has nothing to do with the other Daily Record thing I was talking about in my last blog. And no, I don't have shares ;-)
Amendment:
I think some people are having problems voting. You have to first register with the website - click on 'sign up free' on the top right (beside pic of dog with goggles). Once registered you click on the 'rate' button under the video clip/photo and choose the number of stars. He deserves 5 stars I think! Be sure and click the number of stars though or it will just rate him as 1 star by default.
I entered Seb in the Daily Record 'Petchamp' competition :-) They have a category for best pet video so I submitted the 'Seb doing CPR' clip. Click HERE and vote for wee Seb!!
I am of course also entering him in the best looking dog category, although the first person to rate him only gave him 2 stars. Poor wee boy!! Click HERE to vote for the photo.
I think you need to register to vote...but go on, you know you want to!
Incidentally this has nothing to do with the other Daily Record thing I was talking about in my last blog. And no, I don't have shares ;-)
Amendment:
I think some people are having problems voting. You have to first register with the website - click on 'sign up free' on the top right (beside pic of dog with goggles). Once registered you click on the 'rate' button under the video clip/photo and choose the number of stars. He deserves 5 stars I think! Be sure and click the number of stars though or it will just rate him as 1 star by default.
Sunday, July 27, 2008
Chilled
I've been feeling much more relaxed since I got the all clear as I can now stop worrying every time I feel tired or every time I cough. I think as a result of this I have been able to do more physically because I am not as afraid of pushing myself too far. I have taken Seb on quite a few longish walks and I feel my fitness is slowly starting to improve. My legs still ache and its tiring, but its getting easier and Andrew thinks I am also walking much faster which I hadn't realised.
It is also great being able to drive again! The first day after I got back I was able to go to the supermarket myself - boring I know but very liberating when you have needed to rely on someone else all the time! It was perhaps a stretch too far though as I had quite a lot of bone pain the next day. I don't think it was so much the driving as the lifting heavy shopping bags and pushing the trolley. I was only going for 'a few wee things' but you know how these things tend to snowball and before you know it you have enough food to feed an army.
I also was able to drive to the country park myself and take Seb for a nice walk instead of our usual jaunt around the nearby streets. Much more interesting for us both. I did have an unfortunate incident with another dog though when I inadvertently hit it on the head with my water bottle. I say my water bottle, its actually Seb's - he is unable to walk for more than 20minutes without needing a drink. He isn't really built for hiking or any remotely strenous exercise. Anyway I stopped to talk to some people and their dog was eyeing up the water bottle, so I tried to offer it a drink (it was panting and looked very thirsty!) As I fumbled with Seb's lead and tried to open the bottle at the same time I accidentally swung it towards the dog and unfortunately dunted it square on the head. I'm not sure if the owners noticed but funnily enough the dog didn't want a drink of water after that.
Andrew has been making good progress in the garden and has now finished the vegetable beds. We only have carrots, which we started growing in the greenhouse, and some random chinese cabbage (thats all the garden centre had left!) Hopefully next year we will have lots of interesting things growing. Seb has decided the raised beds are his new look out and has spent much of the day climbing in and out of them. He likes the height advantage it gives him when he is barking. He was also sleeping in one of them earlier - I'm not sure what that was all about but I am just hoping he doesn't dig up the vegetables.
Today we also went a wee trip to Loch Lomond since the weather was fantastic. We took a picnic of sorts - sandwiches and crisps, nothing very exciting - but it was nice to spend a few hours outside and enjoy the fact I can actually walk about. I have been to Lomond shores several times in the past but usually don't make it much beyond the car park so I wasn't actually sure if there was much else to see! We found a few walks to take Seb on so he was quite happy, but I think there will be much nicer routes further north and beyond Lomond shores, which is more a tourist attraction than anything. It was fantastic enjoying the good weather though and I hope we get a bit more of it before the summer is out.
Oh, and I have some interesting news about a possible Daily Record article. But I'll keep it secret for now ;-)
I've been feeling much more relaxed since I got the all clear as I can now stop worrying every time I feel tired or every time I cough. I think as a result of this I have been able to do more physically because I am not as afraid of pushing myself too far. I have taken Seb on quite a few longish walks and I feel my fitness is slowly starting to improve. My legs still ache and its tiring, but its getting easier and Andrew thinks I am also walking much faster which I hadn't realised.
It is also great being able to drive again! The first day after I got back I was able to go to the supermarket myself - boring I know but very liberating when you have needed to rely on someone else all the time! It was perhaps a stretch too far though as I had quite a lot of bone pain the next day. I don't think it was so much the driving as the lifting heavy shopping bags and pushing the trolley. I was only going for 'a few wee things' but you know how these things tend to snowball and before you know it you have enough food to feed an army.
I also was able to drive to the country park myself and take Seb for a nice walk instead of our usual jaunt around the nearby streets. Much more interesting for us both. I did have an unfortunate incident with another dog though when I inadvertently hit it on the head with my water bottle. I say my water bottle, its actually Seb's - he is unable to walk for more than 20minutes without needing a drink. He isn't really built for hiking or any remotely strenous exercise. Anyway I stopped to talk to some people and their dog was eyeing up the water bottle, so I tried to offer it a drink (it was panting and looked very thirsty!) As I fumbled with Seb's lead and tried to open the bottle at the same time I accidentally swung it towards the dog and unfortunately dunted it square on the head. I'm not sure if the owners noticed but funnily enough the dog didn't want a drink of water after that.
Andrew has been making good progress in the garden and has now finished the vegetable beds. We only have carrots, which we started growing in the greenhouse, and some random chinese cabbage (thats all the garden centre had left!) Hopefully next year we will have lots of interesting things growing. Seb has decided the raised beds are his new look out and has spent much of the day climbing in and out of them. He likes the height advantage it gives him when he is barking. He was also sleeping in one of them earlier - I'm not sure what that was all about but I am just hoping he doesn't dig up the vegetables.
Today we also went a wee trip to Loch Lomond since the weather was fantastic. We took a picnic of sorts - sandwiches and crisps, nothing very exciting - but it was nice to spend a few hours outside and enjoy the fact I can actually walk about. I have been to Lomond shores several times in the past but usually don't make it much beyond the car park so I wasn't actually sure if there was much else to see! We found a few walks to take Seb on so he was quite happy, but I think there will be much nicer routes further north and beyond Lomond shores, which is more a tourist attraction than anything. It was fantastic enjoying the good weather though and I hope we get a bit more of it before the summer is out.
Oh, and I have some interesting news about a possible Daily Record article. But I'll keep it secret for now ;-)
Tuesday, July 22, 2008
Quarantine is over!
To get straight to the point, it was all good results and I got the all clear today from the bronchoscopy today :-)
We travelled down on Sunday night and were up early for clinic at 7.30am yesterday. I had bloods taken, weight (up a couple of kilos), oxygen sats (99%), chest x-ray and lung function. The lady in lung function told me the results were exactly the same as last time, but the consultant today said they were up at FEV1 of 2.42 L (which I calculate to be roughly 82-83% ish). It was 79% at clinic four weeks ago. After all the tests I had my bronchoscopy - due to the drugs given I don't remember much about it although I have that feeling that I might have been a bit 'difficult'! Looking at my drug chart afterwards (as you do) I see I was given enough sedation to floor a small horse (13mg midazolam for medic friends). Needless to say I slept for the next hour but apart from a bit of a sore throat was totally fine when I woke up. I was of course immediately bored and seeing it was a sunny day decided to chance my luck and ask to go outside. Once the nurse was happy I had eaten and drank something, she said that would be ok. Pushing my luck further I asked if I could go over to mums friends for a couple of hours - she paused for thought and then agreed. At the point mum suggested I just have dinner at Pat's and come back later that night the nurse finally put her foot down and said I had to be back for 5.45pm to get my dinner haha! Well, if you don't ask...
It was great to escape for a couple of hours and I was able to sit out in the sunshine ...and to have my much needed cup of coffee since I really can't drink hospital stuff. We headed back for dinner - a tuna sandwich, so I shouldn't have bothered! Mum was able to stay until visiting finished at 8pm but then had to leave because I was on a 6 bedded bay, so no room for bending the visiting rules. Although feeling anxious about the bronchoscopy results I did manage to sleep and thankfully my room buddies were all very quiet this time.
First thing this morning I had to go over to another hospital to get the nasogastric tube placed for this reflux study. It's a bit uncomfortable because my throat is sore, but not too bad. He said that I did show reflux on the first test I had so it will be interesting to see if this has changed. I have had more symptoms so suspect I will still show reflux on this test, but what the implications of this are I am not sure - I am already on maximum drug therapy but I doubt it's bad enough to warrant surgery. I get the test done again at my 6 month bronchoscopy and then he will write a report for the transplant team, so I will discuss it with them at that time.
After getting the NG tube in, we headed down to clinic at 10am. An then waited. And waited. And waited...until I was finally taken at 12pm. I was the last patient to be seen and had totally convinced myself that this was because it was bad news and he had to allow extra time or something. Talk about being a drama queen. I was placing bets with mum about whether I had rejection - I was nearly convinced that I did and was bracing myself for another inpatient stay. However, I have never been so glad to be wrong! The biopsy did show stage one rejection, but this is common and does NOT require treatment. I have to stay on the same dose of steroids (10mg) but he actually reduced one of my anti-rejection drugs (I suspect the blood level must have come back on the high side). I took this as an indication that he wasn't at all concerned - and he certainly didn't seem to be. He felt that I was doing really well and was pleased that both my weight and lung function were up.
He also crossed off a few drugs from my long list (magnesium, anti virals and mouthwash, which was to prevent any gum infection from immunosuppression). I was pleased about the magnesium as I was 12 tabs a day and had to crush them and dilute with water as they taste like a piece of chalk. He also considered stopping my nebulised antibiotics but in light of my sinus problems it's safer to stay on these to try and prevent reinfection of lungs. Also some fantastic news is that I am allowed to drive again..no stopping me now :-) Since it was the big chief Professor I did ask about the fast heart rate again...he thought about it for a while before announcing "The answer is I don't know why its fast, there is no obvious reason but we aren't going to do anything about it anyway." Fair enough. To be honest I'm happy enough with that, as long as there is no reason to worry or anything that should be done.
Overall, I have never been so relieved and I was a very smiley Jac. I think I had also been worrying about the humeral rejection that was mentioned (then discounted) the last time - I just wondered if that was going to rear its head again. Thankfully not. So the plan now is another checkup in 4 weeks, and the next bronchoscopy in another 3 months to mark the 6 month stage.
Needless to say some celebration was required and what better way than to visit the shops!! We went with Pat to an outlet which sells branded wear at discounted prices. Somehow another pair of shoes managed to find their way to the checkout (although to be fair I had been given some money to buy a treat, so Andrew need not lose any sleep). Everyone must think all I ever do is shop....it's honestly not true. Not sure if anyone will believe me though.
Tomorrow morning I get the NG tube back out and then we can head back home. I'm so glad I am going home with good news this time :-)
To get straight to the point, it was all good results and I got the all clear today from the bronchoscopy today :-)
We travelled down on Sunday night and were up early for clinic at 7.30am yesterday. I had bloods taken, weight (up a couple of kilos), oxygen sats (99%), chest x-ray and lung function. The lady in lung function told me the results were exactly the same as last time, but the consultant today said they were up at FEV1 of 2.42 L (which I calculate to be roughly 82-83% ish). It was 79% at clinic four weeks ago. After all the tests I had my bronchoscopy - due to the drugs given I don't remember much about it although I have that feeling that I might have been a bit 'difficult'! Looking at my drug chart afterwards (as you do) I see I was given enough sedation to floor a small horse (13mg midazolam for medic friends). Needless to say I slept for the next hour but apart from a bit of a sore throat was totally fine when I woke up. I was of course immediately bored and seeing it was a sunny day decided to chance my luck and ask to go outside. Once the nurse was happy I had eaten and drank something, she said that would be ok. Pushing my luck further I asked if I could go over to mums friends for a couple of hours - she paused for thought and then agreed. At the point mum suggested I just have dinner at Pat's and come back later that night the nurse finally put her foot down and said I had to be back for 5.45pm to get my dinner haha! Well, if you don't ask...
It was great to escape for a couple of hours and I was able to sit out in the sunshine ...and to have my much needed cup of coffee since I really can't drink hospital stuff. We headed back for dinner - a tuna sandwich, so I shouldn't have bothered! Mum was able to stay until visiting finished at 8pm but then had to leave because I was on a 6 bedded bay, so no room for bending the visiting rules. Although feeling anxious about the bronchoscopy results I did manage to sleep and thankfully my room buddies were all very quiet this time.
First thing this morning I had to go over to another hospital to get the nasogastric tube placed for this reflux study. It's a bit uncomfortable because my throat is sore, but not too bad. He said that I did show reflux on the first test I had so it will be interesting to see if this has changed. I have had more symptoms so suspect I will still show reflux on this test, but what the implications of this are I am not sure - I am already on maximum drug therapy but I doubt it's bad enough to warrant surgery. I get the test done again at my 6 month bronchoscopy and then he will write a report for the transplant team, so I will discuss it with them at that time.
After getting the NG tube in, we headed down to clinic at 10am. An then waited. And waited. And waited...until I was finally taken at 12pm. I was the last patient to be seen and had totally convinced myself that this was because it was bad news and he had to allow extra time or something. Talk about being a drama queen. I was placing bets with mum about whether I had rejection - I was nearly convinced that I did and was bracing myself for another inpatient stay. However, I have never been so glad to be wrong! The biopsy did show stage one rejection, but this is common and does NOT require treatment. I have to stay on the same dose of steroids (10mg) but he actually reduced one of my anti-rejection drugs (I suspect the blood level must have come back on the high side). I took this as an indication that he wasn't at all concerned - and he certainly didn't seem to be. He felt that I was doing really well and was pleased that both my weight and lung function were up.
He also crossed off a few drugs from my long list (magnesium, anti virals and mouthwash, which was to prevent any gum infection from immunosuppression). I was pleased about the magnesium as I was 12 tabs a day and had to crush them and dilute with water as they taste like a piece of chalk. He also considered stopping my nebulised antibiotics but in light of my sinus problems it's safer to stay on these to try and prevent reinfection of lungs. Also some fantastic news is that I am allowed to drive again..no stopping me now :-) Since it was the big chief Professor I did ask about the fast heart rate again...he thought about it for a while before announcing "The answer is I don't know why its fast, there is no obvious reason but we aren't going to do anything about it anyway." Fair enough. To be honest I'm happy enough with that, as long as there is no reason to worry or anything that should be done.
Overall, I have never been so relieved and I was a very smiley Jac. I think I had also been worrying about the humeral rejection that was mentioned (then discounted) the last time - I just wondered if that was going to rear its head again. Thankfully not. So the plan now is another checkup in 4 weeks, and the next bronchoscopy in another 3 months to mark the 6 month stage.
Needless to say some celebration was required and what better way than to visit the shops!! We went with Pat to an outlet which sells branded wear at discounted prices. Somehow another pair of shoes managed to find their way to the checkout (although to be fair I had been given some money to buy a treat, so Andrew need not lose any sleep). Everyone must think all I ever do is shop....it's honestly not true. Not sure if anyone will believe me though.
Tomorrow morning I get the NG tube back out and then we can head back home. I'm so glad I am going home with good news this time :-)
Saturday, July 19, 2008
Quick Update
Just thought I would do a wee update before I head to Newcastle tomorrow - the bronchoscopy is on Monday but I will not get the results until Tuesday so wont be updating before then. I must admit I do feel a bit anxious as I really don't know what the biopsies will show, but fingers crossed it's all ok and I get back up the road on Wednesday as planned!
I have had a nice weekend so far. We had Andrews mum, dad and gran over yesterday for dinner (hello Anne and John!) and had a lovely evening. I think I probably last cooked for them about three years ago, so it was very novel all round :-) Today we took Seb a long walk around the loch and as always he had a great time. There was one point where the water was very shallow and we went down to take some photos - Seb ran into the water for the first time in his life! He was rather exhilirated and began running round in circles at high speed before running back into the water. Another dog then came along and was diving into the water to retrieve sticks - I think Seb would have followed suit if he hadn't been on a lead. I don't even know if he can swim! He is never allowed off lead anyway as he would just run off without a care for where we were and he certainly wouldn't come back when called (he is trained to do this but has selective hearing depending on what he is doing/chasing/planning).
My good news for the week is that I am going on a wee holiday to Ireland at the beginning of August :-) My dad goes golfing in Donegal every year and the lady that runs the B+B he stays at has kindly invited us over for a wee visit (hello Winnie)! It will be mum, dad, Andrew and myself. We are taking the car over on the ferry so can do a bit of sight seeing, although I have warned Dad that we are not going on an ancestral tour. I give Dad about 24 hours there before he starts speaking with an Irish accent -I kid you not. It will be great to get away and will be my first holiday in quite a while, and certainly my first holiday being 'well' for years! Let's hope for some sunshine as well, that would just be perfect.
Well, I am going to leave you with a great wee video clip. Seb became extremely concerned when he realised his 'moose' was not breathing. He quickly started CRP but sadly it was just too late for Mr Moose. ER is one of my favourite programmes but I had no idea Seb was taking in quite so much medical knowledge. I can perhaps hire him out as a paramedic dog or something -he could crawl into small spaces, car wreckages etc and start life support. I'm sure I could teach him to use a defibrillator....
make sure your speakers are on!
n.b for those interested, this is actually a cat behaviour called 'kneading' and relates back to when the kittens were trying to get milk from the mother. They do say Tibetan spaniels are very cat like but as always Seb likes to take things too far!
Just thought I would do a wee update before I head to Newcastle tomorrow - the bronchoscopy is on Monday but I will not get the results until Tuesday so wont be updating before then. I must admit I do feel a bit anxious as I really don't know what the biopsies will show, but fingers crossed it's all ok and I get back up the road on Wednesday as planned!
I have had a nice weekend so far. We had Andrews mum, dad and gran over yesterday for dinner (hello Anne and John!) and had a lovely evening. I think I probably last cooked for them about three years ago, so it was very novel all round :-) Today we took Seb a long walk around the loch and as always he had a great time. There was one point where the water was very shallow and we went down to take some photos - Seb ran into the water for the first time in his life! He was rather exhilirated and began running round in circles at high speed before running back into the water. Another dog then came along and was diving into the water to retrieve sticks - I think Seb would have followed suit if he hadn't been on a lead. I don't even know if he can swim! He is never allowed off lead anyway as he would just run off without a care for where we were and he certainly wouldn't come back when called (he is trained to do this but has selective hearing depending on what he is doing/chasing/planning).
We stopped for a coffee...note how Seb also has to sit on the bench!
My good news for the week is that I am going on a wee holiday to Ireland at the beginning of August :-) My dad goes golfing in Donegal every year and the lady that runs the B+B he stays at has kindly invited us over for a wee visit (hello Winnie)! It will be mum, dad, Andrew and myself. We are taking the car over on the ferry so can do a bit of sight seeing, although I have warned Dad that we are not going on an ancestral tour. I give Dad about 24 hours there before he starts speaking with an Irish accent -I kid you not. It will be great to get away and will be my first holiday in quite a while, and certainly my first holiday being 'well' for years! Let's hope for some sunshine as well, that would just be perfect.
Well, I am going to leave you with a great wee video clip. Seb became extremely concerned when he realised his 'moose' was not breathing. He quickly started CRP but sadly it was just too late for Mr Moose. ER is one of my favourite programmes but I had no idea Seb was taking in quite so much medical knowledge. I can perhaps hire him out as a paramedic dog or something -he could crawl into small spaces, car wreckages etc and start life support. I'm sure I could teach him to use a defibrillator....
make sure your speakers are on!
n.b for those interested, this is actually a cat behaviour called 'kneading' and relates back to when the kittens were trying to get milk from the mother. They do say Tibetan spaniels are very cat like but as always Seb likes to take things too far!
Wednesday, July 16, 2008
It's been much more of the same in the life of Jac - taking Seb to the park, going to the shops(!), cooking, baking and playing in the greenhouse (or tending the plants as its more commonly known). There seems to be a developing theme...
We are trying out some new walks with Seb - we wouldn't want him to get bored now would we?! There was a nice route by the river which we tried last weekend, although Seb did give us a fright when he jumped up onto the stone bridge wall so he could peer down at the water. We had to grab him back down before he fell over. He has done stupidly similar things in the past, like the time he climbed out of mums living room window onto the narrow ledge, which is about 8 ft from the ground. Silly dog, clearly has no fear of heights.
The other embarrassing thing he has been doing lately is staring at people when we are out walking. The worst of it being that he tends to stare even more intently if he thinks they are walking funny (very non PC), are dressed in an unusual manner or for other reasons known only to himself. Just last week we passed a woman reverse parking her car and Seb stopped to stare. I don't know if he thought he knew the woman or if he was interested in how well she could park, but either way he would not move on. He just stood and stared. I tried to drag him on, and although eventually he started walking forwards he continued to look back over his shoulder as he moved. Finally the woman finished parking and got out her car - at which point Seb lost all interest and trotted on. Not before the woman shouted over to me "Oh my goodness, that is one nosey dog you've got!!" I was mortified, but could do nothing but agree with her.
I also went shopping to get shoes for my new wedding outfit. I have promised Andrew that I am now finished shopping (for this week at least). Here are my shoes - they were calling my name...
Baking wise I am experimenting beyond the comfort zone, and attempted macaroon bars at the weekend. Not that these are hard to make, but oh, they are so messy! The whole kitchen was covered in icing sugar, it looked like a winter snow scene. Seb was covered, although he didn't seem to mind. As usual, I wasn't wearing an apron so I was covered. Every visible surface was covered.. Then I ran out of icing sugar (since most of it was everywhere other than the mixing bowl) so poor Andrew had to go to Tesco at 9pm to get me more. Clearly the creative process could not wait until morning. I think mum will agree when I say it did taste very much like the real thing though...shame i won't be making it again in a hurry ;-) I think I might just go back to the flapjacks.
Healthwise, everything is ok. I feel like I have been more tired and struggling a little when walking Seb, however it could just be me reading into things too much because I am aware the next bronchoscopy is looming and I am being a little paranoid about the results. The other annoying thing is my peg tube, which instead of healing over nicely is actually beginning to leak even more (as well as continuing to whistle at inopportune moments). It's driving me nuts! I'm hoping to catch up with my CF team soon so that I can discuss it with them...along with my bloated stomach, which is also getting on my nerves. I used to have lots of GI problems related to my CF when I was young, but not really that much in recent years. Or maybe it just didn't seem as bad because my lungs were so poor! Either way, I need to have a chat with them once I am back from Newcastle. Other area I'm keeping an eye on is the blood sugars which have become a bit erratic again. I have started getting hypos (low blood sugars) and the more worrying thing is that I don't appear to have any warning signs until they are very low. Due to this I cut back the insulin, but in response I am now getting high readings again. I can't win! I had some blood taken yesterday which checks the average sugar reading over a 3 month period so I will be interested to get the results of that - I suspect it might not be too bad though as I have been trying really hard to keep them in check. Otherwise everything else is good - eating well, still gaining weight (hopefully some of it muscle!) and although a little tired I am still taking Seb out twice a day and generally keeping myself as active as possible. I am determined to make the most of every day!
I will leave you with some photos of Seb and his new toy "Chris-moose". I think it's love.
Look what I can do!
You want me to get any closer to the camera?!
We are trying out some new walks with Seb - we wouldn't want him to get bored now would we?! There was a nice route by the river which we tried last weekend, although Seb did give us a fright when he jumped up onto the stone bridge wall so he could peer down at the water. We had to grab him back down before he fell over. He has done stupidly similar things in the past, like the time he climbed out of mums living room window onto the narrow ledge, which is about 8 ft from the ground. Silly dog, clearly has no fear of heights.
Walk by the river
The other embarrassing thing he has been doing lately is staring at people when we are out walking. The worst of it being that he tends to stare even more intently if he thinks they are walking funny (very non PC), are dressed in an unusual manner or for other reasons known only to himself. Just last week we passed a woman reverse parking her car and Seb stopped to stare. I don't know if he thought he knew the woman or if he was interested in how well she could park, but either way he would not move on. He just stood and stared. I tried to drag him on, and although eventually he started walking forwards he continued to look back over his shoulder as he moved. Finally the woman finished parking and got out her car - at which point Seb lost all interest and trotted on. Not before the woman shouted over to me "Oh my goodness, that is one nosey dog you've got!!" I was mortified, but could do nothing but agree with her.
I also went shopping to get shoes for my new wedding outfit. I have promised Andrew that I am now finished shopping (for this week at least). Here are my shoes - they were calling my name...
Baking wise I am experimenting beyond the comfort zone, and attempted macaroon bars at the weekend. Not that these are hard to make, but oh, they are so messy! The whole kitchen was covered in icing sugar, it looked like a winter snow scene. Seb was covered, although he didn't seem to mind. As usual, I wasn't wearing an apron so I was covered. Every visible surface was covered.. Then I ran out of icing sugar (since most of it was everywhere other than the mixing bowl) so poor Andrew had to go to Tesco at 9pm to get me more. Clearly the creative process could not wait until morning. I think mum will agree when I say it did taste very much like the real thing though...shame i won't be making it again in a hurry ;-) I think I might just go back to the flapjacks.
Healthwise, everything is ok. I feel like I have been more tired and struggling a little when walking Seb, however it could just be me reading into things too much because I am aware the next bronchoscopy is looming and I am being a little paranoid about the results. The other annoying thing is my peg tube, which instead of healing over nicely is actually beginning to leak even more (as well as continuing to whistle at inopportune moments). It's driving me nuts! I'm hoping to catch up with my CF team soon so that I can discuss it with them...along with my bloated stomach, which is also getting on my nerves. I used to have lots of GI problems related to my CF when I was young, but not really that much in recent years. Or maybe it just didn't seem as bad because my lungs were so poor! Either way, I need to have a chat with them once I am back from Newcastle. Other area I'm keeping an eye on is the blood sugars which have become a bit erratic again. I have started getting hypos (low blood sugars) and the more worrying thing is that I don't appear to have any warning signs until they are very low. Due to this I cut back the insulin, but in response I am now getting high readings again. I can't win! I had some blood taken yesterday which checks the average sugar reading over a 3 month period so I will be interested to get the results of that - I suspect it might not be too bad though as I have been trying really hard to keep them in check. Otherwise everything else is good - eating well, still gaining weight (hopefully some of it muscle!) and although a little tired I am still taking Seb out twice a day and generally keeping myself as active as possible. I am determined to make the most of every day!
I will leave you with some photos of Seb and his new toy "Chris-moose". I think it's love.
Look what I've got!
Look what I can do!
You want me to get any closer to the camera?!
Sunday, July 13, 2008
National Transplant Week
Today marks the end of national transplant week, so I thought I would leave you with some statistics and a link to sign the register. I understand the concerns some people have about signing the donor register, but if you haven't already done so please take the time to think about it further. The reality is that without the amazing generosity of my donor I might not still be here.
Basic Facts:
To sign the register click here
Whatever you decide, remember to discuss your wishes with your family.
Today marks the end of national transplant week, so I thought I would leave you with some statistics and a link to sign the register. I understand the concerns some people have about signing the donor register, but if you haven't already done so please take the time to think about it further. The reality is that without the amazing generosity of my donor I might not still be here.
Basic Facts:
- You are more likely to need a transplant than to become a donor
- Although 90% of the population support organ donation, only 22% of the population are on the register
- Over 7000 people are currently waiting for a transplant but less than 3000 transplants are carried out each year
- Last year over 400 people died whilst waiting for a transplant
- While 90% of people would be prepared to donate their organs in the event of their own death, 40% of relatives don't agree to donation when asked. One of the main reasons for refusal given by the families is that they didn't know whether the person would have agreed to donation
- "They won't try as hard to save me if I am a potential donor" - the doctors duty of care is always to their patient and they will make every effort to save you. They will not even be aware that you are on the register - organ donation is only considered after death, at which point a different team of experts are called in.
- "How do they know I am really dead?"- Organs are only removed for transplantation after a person has died. Death is confirmed by a doctor or doctors who are entirely independent of the transplant team. Death is confirmed in exactly the same way for people who donate organs as for those who do not. For patients who are ventilated, the ventilator keeps the body supplied with oxygen and this means the heart will continue to beat and circulate blood. This preserves the organs so they can be donated for transplant. However, when the ventilator is turned off the heart will stop beating within a few minutes.
- "I can't donate because I have a medical condition" - Having a medical condition does not necessarily prevent a person from becoming a donor. The decision is made by a healthcare professional, taking into account your medical history.
- "I am too old to donate" - In the case of cornea and some other tissue, age does not matter. For other organs it is the person's physical condition, not age, which is the deciding factor. Organs and tissue from people in their 70s and 80s are transplanted successfully.
- "I don't want to donate all my organs" - You can specify which organs you would wish to donate. Simply tick the appropriate boxes on the NHS Organ Donor Register form
- "The organs removed might be used for research" - Organs and tissue that cannot be used for transplant will only be used for medical or scientific research purposes if specific permission has been obtained from your family
To sign the register click here
Whatever you decide, remember to discuss your wishes with your family.
Thursday, July 10, 2008
Plateauing...
The week got off to a good start with my oxygen concentrator finally being uplifted on Monday! I did phone them as soon as I was discharged but they have been waiting for my consultant to fill in the necessary forms. I was so glad to see the back of it, and its one less reminder of the pre transplant days. The man who came to uplift it was strangely excited by the fact I had had a transplant, which was nice. I have very little equipment left now. I do still have my feed pump, but I think I will phone soon to arrange uplift as my weight is definitely on the up, and my appetite is great (although I am eating all the wrong things!). In fact I phoned my CF team today to see if I can stop the medication I was put on to induce weight gain, as I don't feel I need it now. Also because the medication is more likely to make me gain weight as fat instead of muscle, which is not ideal. I am feeling a bit fed up with the fatness of my face, which is largely steroid induced but probably is partly the extra weight. My self conciousness was not helped when a neighbour kindly pointed out today that I had put on weight, as she simultaneously pointed to her face, clearly indicating that my face was getting fat. I know she meant it in a 'you look healthier' kind of way, but its hard for me to be that objective. I know there is not a damn thing I can do about it though, so I really need to get over myself. I also am despairing that the rest of the weight is going round my stomach which is expanding at an alarming rate. I'm sure I can however do something about that and really need to chat with my physio about an exercise programme, once I (hopefully) get the all clear from Newcastle at my next visit :-)
I am almost looking forward to the next Newcastle visit (a week on Monday) because I feel I can't really move forwards until I have reached that milestone. I desperately need reassurance that the rejection has been dealt with and has not returned, and I wont get that until I see the bronchoscopy results. Although I am still feeling well and there are lots of positive things (weight going up, appetite good, not really breathless etc) there are also little niggling doubts (having night sweats, although these have been present since transplant, generally more tired than i was a few weeks ago, but probably steroid related and still got an irritating cough at times, but again could be explained by sinus problems). It's hard for me to be 100% positive all the time though and I will feel so much better if I can get a clean bill of health at my next visit. Even if I did have more rejection, I would at least know what I was dealing with so am prepared to deal with whatever lies ahead. I think the other difficulty is that I have reached a plateau physically (and to some extent mentally) and don't feel I am moving forwards with my fitness or stamina. I am still taking Seb out twice a day but it doesn't seem to be getting any easier! My legs still ache and I really don't like hills ;-) My muscles would have been in a really bad way though, so I know I can't expect miracles. It is just so frustrating though as I probably can't do much more than, say, 5 years ago....but my lung function is so much better than it was then. I'm just desperate to feel 'normal' and be able to do everything someone of my age should do. Mentally, I am still upbeat and enjoying life....but yes, the novelty of what I am able to do at the moment is wearing off, and I need new challenges! Yet, at the same time I think about going back to work and know I am not yet ready....physically I don't think I am quite there yet, and mentally my head is still somewhere else entirely. I guess it's a lot for my mind to process (especially with the false alarm added in for good measure) and I am still getting my head around the whole transplant and post transplant process. It's a journey I just have to take one day at a time, and I have to try hard not to get ahead of myself. You will have realised by now that patience is not one of my virtues...
On a lighter note, Seb escaped today. For the long term blog readers, you will know he is quite the Houdini but it has been a while since he managed to break free. I was just sitting on my laptop when I heard a voice shouting 'Jacqueline, are you there?' and I found my neighbour standing at my open front door with Seb standing beside her. I immediately went to lift Seb, who realising what was happening made a run for it. Luckily I caught him by the tail end as he tried to run down the drive way. He was not impressed! In fact he proceeded to sulk for the entire afternoon and most of the evening. Apparently my neighbour had just being going out to her car when Seb trotted up her driveway with not a care in the world, looking quite pleased with himself. I mustn't have shut the front door properly and it had been blown open by the wind and clearly Seb saw an opportunity that could not be missed. It was really lucky that the neighbour was outside as goodness knows where he would have gone - we have had phone calls from various locations in the past when he has escaped as he takes himself on little adventures around town. Hopefully this will be the last time he manages to do a runner but I wouldn't count on it.
Otherwise I have had a fairly quiet week. We did have one shopping excursion where I managed to get an outfit for one of my September weddings - surely I am not expected to wear the same one to all three??!! Clearly I now need matching shoes. This is not my fault. On a positive note, I do already have a matching handbag, so its not all spend, spend, spend ;-)
The garden is still progressing and the plants in the greenhouse are still alive, which is always a bonus. My dad and uncle brought through railway sleepers today, which we are going to use to build vegetable beds. Think of all the soups I can make when I am growing my own veg! My latest soup was carrot, parsnip, apple and ginger. It wasn't mums ' favourite' but everyone else liked it, so I would say it was a success. I am also branching out on the baking front since my mum brought me my gran's old recipe book! It has hand written recipes with measurements such as 'a dod of butter' (to non Scottish readers, that means a small amount, unless its 'a big dod'). Other helpful comments include "bake in a hot oven" and "bake until ready" both of which have limited usefulness when you don't really know what you are doing ;-) I think I gave my dad and uncle a trip down memory lane when they came today and I had a fruit tart (raisins, sultanas etc in pastry pie) and 'coconut jam tarts' both of which recipes my gran used to make. I think its good to carry on traditions though, and its a great shame if such recipes like that become only memories.
I will leave you with some pictures of my garden, greenhouse and rockery...
The week got off to a good start with my oxygen concentrator finally being uplifted on Monday! I did phone them as soon as I was discharged but they have been waiting for my consultant to fill in the necessary forms. I was so glad to see the back of it, and its one less reminder of the pre transplant days. The man who came to uplift it was strangely excited by the fact I had had a transplant, which was nice. I have very little equipment left now. I do still have my feed pump, but I think I will phone soon to arrange uplift as my weight is definitely on the up, and my appetite is great (although I am eating all the wrong things!). In fact I phoned my CF team today to see if I can stop the medication I was put on to induce weight gain, as I don't feel I need it now. Also because the medication is more likely to make me gain weight as fat instead of muscle, which is not ideal. I am feeling a bit fed up with the fatness of my face, which is largely steroid induced but probably is partly the extra weight. My self conciousness was not helped when a neighbour kindly pointed out today that I had put on weight, as she simultaneously pointed to her face, clearly indicating that my face was getting fat. I know she meant it in a 'you look healthier' kind of way, but its hard for me to be that objective. I know there is not a damn thing I can do about it though, so I really need to get over myself. I also am despairing that the rest of the weight is going round my stomach which is expanding at an alarming rate. I'm sure I can however do something about that and really need to chat with my physio about an exercise programme, once I (hopefully) get the all clear from Newcastle at my next visit :-)
I am almost looking forward to the next Newcastle visit (a week on Monday) because I feel I can't really move forwards until I have reached that milestone. I desperately need reassurance that the rejection has been dealt with and has not returned, and I wont get that until I see the bronchoscopy results. Although I am still feeling well and there are lots of positive things (weight going up, appetite good, not really breathless etc) there are also little niggling doubts (having night sweats, although these have been present since transplant, generally more tired than i was a few weeks ago, but probably steroid related and still got an irritating cough at times, but again could be explained by sinus problems). It's hard for me to be 100% positive all the time though and I will feel so much better if I can get a clean bill of health at my next visit. Even if I did have more rejection, I would at least know what I was dealing with so am prepared to deal with whatever lies ahead. I think the other difficulty is that I have reached a plateau physically (and to some extent mentally) and don't feel I am moving forwards with my fitness or stamina. I am still taking Seb out twice a day but it doesn't seem to be getting any easier! My legs still ache and I really don't like hills ;-) My muscles would have been in a really bad way though, so I know I can't expect miracles. It is just so frustrating though as I probably can't do much more than, say, 5 years ago....but my lung function is so much better than it was then. I'm just desperate to feel 'normal' and be able to do everything someone of my age should do. Mentally, I am still upbeat and enjoying life....but yes, the novelty of what I am able to do at the moment is wearing off, and I need new challenges! Yet, at the same time I think about going back to work and know I am not yet ready....physically I don't think I am quite there yet, and mentally my head is still somewhere else entirely. I guess it's a lot for my mind to process (especially with the false alarm added in for good measure) and I am still getting my head around the whole transplant and post transplant process. It's a journey I just have to take one day at a time, and I have to try hard not to get ahead of myself. You will have realised by now that patience is not one of my virtues...
On a lighter note, Seb escaped today. For the long term blog readers, you will know he is quite the Houdini but it has been a while since he managed to break free. I was just sitting on my laptop when I heard a voice shouting 'Jacqueline, are you there?' and I found my neighbour standing at my open front door with Seb standing beside her. I immediately went to lift Seb, who realising what was happening made a run for it. Luckily I caught him by the tail end as he tried to run down the drive way. He was not impressed! In fact he proceeded to sulk for the entire afternoon and most of the evening. Apparently my neighbour had just being going out to her car when Seb trotted up her driveway with not a care in the world, looking quite pleased with himself. I mustn't have shut the front door properly and it had been blown open by the wind and clearly Seb saw an opportunity that could not be missed. It was really lucky that the neighbour was outside as goodness knows where he would have gone - we have had phone calls from various locations in the past when he has escaped as he takes himself on little adventures around town. Hopefully this will be the last time he manages to do a runner but I wouldn't count on it.
Otherwise I have had a fairly quiet week. We did have one shopping excursion where I managed to get an outfit for one of my September weddings - surely I am not expected to wear the same one to all three??!! Clearly I now need matching shoes. This is not my fault. On a positive note, I do already have a matching handbag, so its not all spend, spend, spend ;-)
The garden is still progressing and the plants in the greenhouse are still alive, which is always a bonus. My dad and uncle brought through railway sleepers today, which we are going to use to build vegetable beds. Think of all the soups I can make when I am growing my own veg! My latest soup was carrot, parsnip, apple and ginger. It wasn't mums ' favourite' but everyone else liked it, so I would say it was a success. I am also branching out on the baking front since my mum brought me my gran's old recipe book! It has hand written recipes with measurements such as 'a dod of butter' (to non Scottish readers, that means a small amount, unless its 'a big dod'). Other helpful comments include "bake in a hot oven" and "bake until ready" both of which have limited usefulness when you don't really know what you are doing ;-) I think I gave my dad and uncle a trip down memory lane when they came today and I had a fruit tart (raisins, sultanas etc in pastry pie) and 'coconut jam tarts' both of which recipes my gran used to make. I think its good to carry on traditions though, and its a great shame if such recipes like that become only memories.
I will leave you with some pictures of my garden, greenhouse and rockery...
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