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.

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 ;-)

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 :-)

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).

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!

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.

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?!

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:

• 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

Common worries and misconceptions:

• "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

For the answers to other common questions click here

To sign the register click here

Whatever you decide, remember to discuss your wishes with your family.

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...

I have been trying to work out why I hadn't blogged since Tuesday. I'm sure I must have been busy doing something, but I'm not quite sure what. Time really is just flying in at the moment...in only 2 weeks I will be at my 12 week mark - of significance because it marks the end of the most high risk period, so hopefully my quarantine will then be over and fingers crossed I will also get permission to drive again! Rejection is still common in the first year post transplant but the risk starts to fall after the first 3 months, so it seems like quite a monumental milestone to reach (in my head anyway).

So, what have I been up to?! Last week my friend Nic drove us up to Dundee to see our friend (and old flatmate) Anna. It was a lovely day and we basically sat about chatting and stuffing our faces with lovely homemade food (which put my efforts to shame really!) The last time we made the trip I wasn't very well and was so worried about the stairs going up to the flat, which I had to take very slowly and with great effort. This time I could have ran up them if I wanted to! I think my friends were also surprised at how much food I ate - its all this cooking I have been doing - I think I have definately stretched my wee stomach and it now expects to be fed a great deal more ;-) It was a lovely day all round and we also made some exciting plans about a potential holiday next year to include all our old flatmates, most of whom now live in London. I think its a great idea and am really hoping we can work something out. We are hoping to maybe hire a villa or the likes later next year, by which time I will hopefully be deemed fit to fly and be able to get travel insurance. All very exciting :-)

I also caught up with a good friend on thurs and again there was much chatting. drinking coffee and eating of home baking. I really could get used to this! Mum was through on friday and I tested out my fish cake recipe on her at lunch time - nothing like the pre-transplant days when she had to either a) bring her own lunch b) look around in my fridge to find only cheese, if she was lucky or c) take me out for lunch, although usually wasn't fit for this. Tomorrow she will be getting a new soup concoction. I haven't invented it yet - depends what I find in the fridge tomorrow morning ;-)

The weekend has been fairly quiet as it has hardly stopped raining, so not been the weather for getting out and about. It's not even that warm, so it's not been much fun walking Seb. I am being good and going out come rain or shine though, as I suppose I can't really be a fair weather dog walker. Seb doesn't really mind the rain that much and tends to get a bit invigorated by it at times, making him really hyper when he gets back - running around spraying water all over the house. He did have a nice bath yesterday though, but only because I tripped over him and sprayed him with my sugary latte. Fortunately I was on my way to the microwave to heat it so he wasn't scalded (before anyone reports be to the RSPCA) but it did make his coat all sticky and tufty, which wasn't a great look. He was very good about the bath, although not so good about the brushing afterwards. He absolutely hates getting his tail brushed and I have to bribe him with treats to even get near it but we somehow get there in the end.



Today we went to the shops first thing this morning before they got busy. I had some book vouchers to spend so we went to Waterstones and got a few books to be getting on with. I somehow also managed to 'pop' in to look at some sale items in the passing and got myself a couple of tops (in the sale of course). I'm not sure how I got away with that one ;-) The rest of the day has been quiet with boring tasks such as rearranging the kitchen cupboards to accommodate all my baking ingredients. The latest thing I have tried is treacle scones, and they were rather nice if I do say so myself. I am thinking of trying a healthier version of my flapjacks using bran flakes. I think the golden syrup and sugar and marg may somehow counteract the goodness of the bran though. At least it's a vague attempt at being healthy though..

Oh totally random, but I am trying to sell my wedding dress at the moment. You can tell I am very sentimental! I did try to sell it after my wedding but I think because its so small there aren't many buyers out there. So if anyone knows someone looking for a size 8 wedding dress then let me know!

Well I am off to relax now. .... honest :-)

On the up again!

I've been feeling much less tired since my last post so hopefully it was just a passing phase, probably related to the reduction in steroid dose - it does take your body a few days to adjust to this and would explain a lot of my symptoms. I am now back to my maintenance dose of 10mg and this shouldn't be adjusted any time soon (unless I had rejection again) so fingers crossed I can keep the energy levels up! I was really worried by how tired I was feeling - it just took me right back to some of the feelings I had pre-transplant and that is somewhere I don't want to be again. I know these new lungs can't last forever but I am enjoying this new found freedom so much that any reminder of how I felt before is upsetting, and actually quite frightening. I know I have to accept the ups and downs of this journey but the ups are so wonderful that even a little down seems like a huge step backwards. However I only have to think of how life was before this transplant to realise that I have come such a long way and although it may be a bumpy ride it is worth it just for what I have experienced in this short time. If I were to be given the choice again I would take this transplant even if it were only to last me for the time I have had already.. because the difference in the quality of my life is immeasurable.

Since I have my energy back the cooking and baking has continued. I tried a new baking recipe of banana and walnut loaf today...yum! I also realised today that in the last 2 weeks I have made 6 different types of soup!! So far I have tried Cream of courgette, pea and mint, roast tomato, butternut squash, chicken and today I invented my own sweet potato and leek concoction. I have never had sweet potato in my life but decided I would buy some and "do something with them". I am so surprised at myself and this new domesticated person I have become and I do wonder how long it will last! I think its a good use of my time though and makes me feel as if I am doing something constructive instead of being tied to day time TV and sitting on the sofa. I have still hardly watched TV since I got home and it's amazing how much more time you have. I am able to relax more though and have been doing a fair bit of reading instead and obviously still spending time on my laptop. The 'c' key fell off earlier (andrew says I was hammering the keyboard) and although now reattached isn't working properly, so if I miss any random 'c's' you will know why.

The greenhouse is now up and we have some little tomato plants and pepper plants so hopefully they will grow even though it's quite late in the season now. It has been raining for days now so the slate chips are not any further forward. I can't believe its July and I am walking Seb with big boots and a waterproof jacket on! I was really hoping for a lovely summer so I could spend my recovery time relaxing in the garden and enjoying some sunshine. No such luck. Maybe we will have a late summer - I have three weddings in September so some nice weather then would be great. I am rather excited about all my weddings as I will be able to really enjoy myself and since my wound should be healed by then I can dance away to my hearts content :-)

I have to mention a funny (in a non-PC way) incident that happened yesterday. I was sitting in the GP surgery - just getting him to check out a sore toe (don't ask) and some pleuritic chest pain I had (was nothing to worry about). Anyway, this elderly couple were sitting together and were clearly both quite deaf so were speaking to each other rather loudly. A young girl, who was quite overweight, came in with her gran, and then they proceeded to sit on opposite sides of the room. The old man turned to his wife and shouted "she's obviously not talking to her granny". The girl looked embarrassed but said nothing. A few minutes later both the girl and her gran went in to see the doctor and the old woman turned to her husband and said loudly "now that's what you call obese!" I didn't know where to look! Clearly they thought they were talking quietly (at least I hope they did) - luckily I don't think the girl heard anything but the rest of the waiting room certainly did!

On the medical front everything is looking good at the moment. My blood sugars have been a lot better on the lower dose of steroids, although I still need a lot more insulin than I did pre-transplant - this isn't a big issue though. My weight is stable and creeping up slowly. The peg tube hole hasn't quite healed yet and it likes to make whistling noises from time to time. It would be better if it could at least play a wee tune but instead makes random noises which I seriously hope won't happen in public because I'm sure to get some funny looks! It is also leaking a bit but I have had major problems with bloating/indigestion since my transplant (may be related to medication or some interference with the nerves) which is probably keeping the peg tube tract open. I am hoping this will settle with time though and heal over and stop making inappropriate noises. The chest is great and I think the wee cough I had is getting better, so that is reassuring. All in all, I am in good shape!

I will leave you with a photo of the baby blackbird I saw this morning getting fed by the adult - it's not a great photo but I love blackbirds so you are getting it anyway. Also a photo of my wee robin..just because.