Today it is 6 weeks since my life saving transplant and time for the first update from yours truly! I wanted my first post to be a bit more in depth but it’s taking me a while to think about everything I want to say so this will be an update on latest news then at some point in the hopefully not too distant future I will be writing about the ‘transplant tale’ from my point of view and my thoughts on it all etc!
Today started with a visit from Mr Simon, my surgeon, he just popped in to see how I was doing which was nice. He seems very pleased with me and was more interested in what bovril was (I have a pot on my table which I put on my toast in the morning!) can’t believe he has never seen it before!
So the updates…. Im still finding everything very tiring so bear with me if it’s a bit disjointed!
No longer have the acid reflux I used to have, I seem to be able to eat everything I want to which is just great given I lived off jacket potatoes for the last 4 months before transplant! I am still having major tummy troubles which is very uncomfortable and gone on a long time now. I’m told this is a combination of drugs, body being so weak and being tube fed only for a few weeks. My tummy is just taking a long time to settle but will do eventually (just hope it’s soon).
I’m also suffering from bad nausea and headaches and I have managed to catch a cold this week. It’s not on my chest so hopefully will stay that way. These are all little problems but add together and just make you feel a bit miserable! The only other problems I have are itchy feet which drive me mad at night (medication is to blame) and numb legs which are still very weak and stupidly thin! Again this will resolve over time.
Now for all the good news and achievements:
Walking is coming on well, am now using a stick only- unless I’m very tired or wobbly then I use the frame but that slows me down!
Weight is going up slowly but increases everyday at the moment. My body is burning a huge amount of calories at the moment. I’m loving being back on the coca cola but sadly I seem to not like chocolate or Capri suns much anymore. The meds can change your taste buds. I’m not having any extra feeding or supplements and it’s just lovely to have my face back and no horrid tubes.
I’m wearing proper pyjamas and washing etc myself which is very nice and I don’t get breathless doing it! I need to get some proper clothes brought in and start being normal again, going to be weird after 2 years of wearing pjs! I’m also walking to and using a proper loo which is just great (it’s all the small everyday things you appreciate!). Iv just had a proper shower and hairwash like a Normal person which was just lovely. Can’t wait for a nice bath at home now.
I have been on the exercise bike to build up my leg muscles and I’m now starting on the stairs, this is the final thing to master before I can go home.
Dr Carby just been in to see me and said he has never seen me look so well. He is really pleased with my progress and was amazed it’s only 6 weeks since my op, he said iv done incredibly well especially given my state before transplant. We are set for home on 18th Jan (2 weeks today) , I just need the physios to be happy with my mobility, which isn’t quite there yet. If I conquer the stairs quickly then I can go before 18th. The Physio is coming back this afternoon to try some steps. Going to try really hard….
My trachy hole is healing but not enough at the moment so waiting for that but it won’t stop me going home now.
It shouldn’t be too long before I can come back to Jersey but it all depends if I get infection or rejection episodes. The first year is often tricky and you should expect a few problems but most of them completely treatable. For now Aunty Jane is kindly letting me come back to her house til I’m ready to travel and it’s exciting as I’m going to have an upstairs bedroom! My poor cousin has had to spend Xmas clearing his room out so thank you James 🙂
Had my last stitches out yesterday. Aunty Sue was here to keep me company and had the privilege of being the only person so far to see my scars. They are just amazing, two tiny neat lines wbich have already healed and faded. Goodness knows how he got the new lungs in! The huge benefit of having the surgery this way is they don’t break your sternum which all other surgeons do. This must save a considerable amount of pain because I really have hardly had any from my chest the whole time. I stopped any pain killers about 2 weeks ago, just taking normal paracetamol for my headaches this week.
Doctors have also started to reduce my medication and I am self medicating. You get given a ‘blue book’ which is your bible. Every day you write all ur medication out and times to take and also record your temp, weight and lung function. If any of these change by a certain amount you have to call Harefield and they will see you. There is so much to learn!
I had my first lung function tests with my new lungs yesterday and am really happy with the results. I was hoping for 40% as my starting point but the nurse warned me it might not be. My old lungs were 12% 6 months ago and yesterday’s scores were fvc 49% and fev 55%. and this will continue to improve as I get stronger and use the lungs more. It’s all just so amazingly clever. The team of doctors and nurses here are just brilliant.
So now I am having a Ct scan this week which will be used as a baseline for the new lungs. All my bloods and meds are stabilised and I’m getting my own spirometer so I can do my own lung function. Apart from that it’s just eat, put on weight and get stronger with physio.
All in all, great news and I’m really happy with it all. It’s just so amazing not to even think about whether you can breathe. I just can’t believe it’s all happened and I’m well now.
I know it’s been said a million times but I can’t post and not thank everyone for all your lovely messages, support and prayers. Not to mention cards and presents. They have all helped me so much. This has been an incredibly hard journey but I’m really starting to feel the benefit now and for the first time in my life my body is behaving and doing what I ask it to (well with the exception of my tummy!)
I also want to ask you to keep my donor and their family in your thoughts. Their kindness is the reason I am here today and I will always be so grateful for that.
I am sorry I can’t reply to everyone individually, I have literally had thousands of messages! You are all so kind and I can’t wait to be able to catch up with you all when I’m back.
Gosh this is a long post, only meant it to be short! That’s another thing, I can’t stop talking! It’s just so easy compared to what I’m used to. I think I’m the only one enjoying this bit though!!
Lots of love Kerry xxx