I had a lovely few days back in the UK staying with Jane and Jim again, I flew over by myself which was all very easy and Uncle Jim kindly picked me up which makes a huge difference ☺ My cousin James, Clare and Sean came and stayed for the night and we had a lovely evening playing games etc.
Clinic went really well on Monday 3rd September. It started very early- I had a very keen driver pick me up at 7.15 am (I have to be at clinic for 10am!) we arrived by 8.30am, I had all my tests super quick and I was finished by 9.30am with a very long day to wait to see the doctor!
I had my ipad and kindle so had enough to occupy myself and it was lovely weather so I sat outside for a bit. I also discovered that the canteen (The ‘Hungry Hare’) sell amazing croissants- I cant believe I haven’t discovered that before lol.
I also was very pleased to meet lovely Kimberley Kneil, she had her transplant only 6 weeks ago and is looking absolutely amazing… I certainly didn’t look anything like as well as she did after that short time. I also had nice chats with some other patients there. I love being able to meet people in clinic who I have been following or chatting to on the internet, or even just new faces, we all have so much in common that most people can never quite understand the extent of and I feel these friendships are really important to me.
I was just sitting in the outpatients part about 11.30 when one of the nurses came out and started to round up patients to see the doctor early (usually they start at 2pm) but they were a few doctors short that day so decided to get on with it!
Surprise I was FIRST! And I got to see the main man Dr Carby which I was really pleased about. Obviously he would always be your first choice of Dr to see but I’ve only managed to get him twice since transplant!
He was really pleased with me, all my bloods are back to normal and all major organs functioning fine. No infection markers raised or anything and x ray all clear. My lung function tests were slightly down but he wasn’t too concerned especially given the shoulder pain I have been having which affects my ability to blow hard enough for the spirometry sometimes. We discussed memory foam pillows to help this- not a particularly medical solution!
Dr Carby stopped some more medications- my ‘happy pills’ which I was taking for anxiety issues pre transplant (watch out Phil this week lol) and the best news of all- he stopped my last nebulizer ☺ so happy with that- I had been told I would probably stay on that, which only takes a short amount of time each day but it feels a real chore, especially when you feel you don’t need it and should be free of lung things like that now! I have very happily just packed away my nebulizer and setriliser equipment etc. Im sure there will be times when I need to go back on it- but not every day at least.
We discussed my last hospital admission and he was furious that the doctors at Harefield hadn’t admitted me, despite me calling 3 times for help. He said he wants me in Harefield rather than a local hospital every time I am even slightly concerned- especially important for me, given my distance from the hospital and flight timetables etc. Thankfully no harm was done this time but he stressed the importance of the experts treating us transplant patients- even for simple ailments as you never quite know what else may be going on. He says that their pro-active approach is what gives them the best survival rates- this is definitely something I want to be making the most of- so important lesson learnt for the future!
So all in all a great little trip, I’m back in the first week of October for my first annual review (a month early). I will have a CT scan to check rejection status and I also need to have an impedence test. (24 hour tube down my nose to check for acid reflux in the lungs- this is hideous but really important to keep lungs healthy and bacteria free). I will then come back the next day for normal clinic. Dr Carby then said all being well- he wont see me again until the new year and will move my appointments to 3 monthly ☺
So now I’m back at home, had a mixed week of being busy getting jobs done and also resting as was tired when I arrived home. I had Tom, James and Mum round for dinner and put my new found culinary ‘skills’ to the test. It wasn’t too bad actually (apart from the peppercorn pot lid coming off into my stroganoff so we had to eat round the peppercorns lol). My treacle tart, inspired by my new favourite tv program The Great British Bake Off, tasted nice ☺
September was always going to be when ‘normal life’ resumed. Phil is back to work and I’m getting into my own routine, 3 gym sessions are booked for next week- 2 cardio and 1 pilates class which I’m dreading but keen to get on with. I really want to start shifting some of this excess weight from the steroids and hopefully improve my lung function a bit further- I have been a bit lazy the last month or so as life has been so hectic.
Both my lovely god- children, Liam and Raffi are starting nursery this / next week so fingers crossed they enjoy it…. I will be thinking of them (and their mummies!)
Think that’s all for now…. Love Kerry xx