Hi all, hope everyone is well!
Tomorrow I am 11 weeks post transplant and still doing well 🙂
Clinic last week was good, saw the head consultant Dr Carby and he was really pleased with my progress… his comment to me was “wow you look great…. don’t think I’ve ever seen you vertical before!”. Although tiredness at this stage is very normal, he thought some of my pills might not be helping this so he took away my beta blockers as my heart rate and blood pressure are now nice and normal and he also took away my amiltriptiline pills which I was on pre-transplant to help me sleep. I had been under the impression that they didn’t work but I was wrong as I then didn’t sleep much all week! I took the pill again starting on sunday night and have been sleeping again. The doctor advised this monday to do a week of 10mg and then a week of 5 mg and wean it down. Although it is only a small dose, it will have quite an effect on a body of my size. My anti- rejection levels were slightly high which can damage the kidneys so they reduced my evening dose (although rather annoying because it becomes 4x 1mg tablets instead of 1x 5mg!) Another problem I am having is itchy skin- my feet and back drive me mad at night- no amount of scratching relieves it… this is likely down to the medication and should hopefully settle in time. There are so many side effects to these medicines that are simple little problems (especially compared to what I lived with before tx) but they add up to be really annoying together! I can’t complain though whilst these lungs are behaving so nicely 🙂
Sorry I didn’t blog last week, with not sleeping I really wasn’t feeling too great all week and I also had a bit of a cold. Nothing to worry about as didn’t affect my chest thankfully but I was having horrid headaches, eye pain and sickness and the computer really didn’t help any of those things. I’ve noticed that when I am tired my chest becomes really heavy and uncomfortable, especially in the evenings, this is just my chest muscles getting tired- they are still getting used to being used!
My sister Kim was over at the weekend which was so lovely. We chatted away well into the night and then slept all morning (I briefly woke up to take pills obviously!) We also went for my first proper shopping trip (clothes and shoes) although I didn’t buy anything so Phil couldn’t get cross! We discussed all things girly and wedding related and had a really great weekend, with some lovely meals cooked by Uncle Jim 🙂
Yesterdays clinic went really well again, everything is looking good and all tests are good. Bloods all normal, weight up, lung function still increasing and x ray looks lovely and clear. Doctors still very pleased. I no longer have any dressings as my trachy wound has finally closed. It’s looking really good actually- you can hardly see it. I also saw my wonderful surgeon who was happy to see me looking well and we finally learnt how he got these lungs in!! I also saw Ann, one of the transplant co-ordinators who I’ve seen since my first visit to Harefield and again she couldn’t believe the difference in me. I got to meet some transplant friends as well- Mark W who has been really supportive online throughout my journey and also Graham from Jersey who had some good advice for when I’m back on the rock! It’s really nice to make new friends at clinic although I am quite shy to start the conversations!
I am feeling much better this week and have been shopping again today, a big Sainsburys trip and also bought a handbag with some vouchers I had…. its been ages since I had a new bag. It took a long time though as I couldn’t decide which colour to get- Im out of practice at shopping!!
Got quite a lot of time on my own this week so will be doing lots more jobs for myself so will also be balancing that with lots of rest and obviously some walking. I am going out for dinner, just round the corner, with my lovely friend Leanne on thursday. (For those of you who don’t know, we used to share a flat in Jersey a few years ago and I miss her lots since she moved to the UK but luckily lives quite close to my Aunt’s house.) Im a bit nervous about going out in the evening as I get so tired but its so close to home and it will be another milestone.
I feel ready to try driving now but I need to sort out with the insurance and DVS what I need to do to be legal! I was hoping to try mums car this week but need to get the paperwork sorted first. I just really want to be driving when I’m back in Jersey and not stuck at home. Im finally starting to walk a bit more normally, it’s less of a waddle now and can go a bit faster, although I get more wobbly as I get tired.
Phil is coming over this weekend and I hope the weather doesn’t get in the way… will be gutted if he can’t get here so fingers crossed.
I think that’s about all my news for now.
Love Kerry xx