Hi everyone, hope you are all well!
Tomorrow I am 13 weeks post transplant and on Thursday it is 3 months exactly since transplant- another really good milestone. It means I am free to get out and about a bit more and meet people, although still need to be super careful not to pick up any germs. This is something that will continue forever so its learning to get a balance between living my new life and making the most of it but also not taking any unnecessary risks which will end in a hospital stay!
Last week’s clinic was fairly uneventful to be honest, I was really pleased with my lung function as it was up to 69%. Everything else looked good and nothing to report. It was an extremely long day, it was half term so the traffic was brilliant, clinic was pretty empty so thought it would be nice and short however it turned out there was only 1 doctor seeing patients (instead of the usual 3 or 4) so it took forever and of course I was one of the last… luckily because I was finished tests so early, Mum and I had decided to go shopping in Uxbridge for a few hours over lunchtime, otherwise it would have been an extremely long wait to see the doctor. I was exhausted by the end of the day!
On Tuesday I saw Aunty Alison (my Dad’s sister) which was lovely, I am looking forward to seeing some of my cousins next time too hopefully.
On wednesday I went back to St Peter’s the local hospital and met everyone at the respiratory care team who had helped me so much before transplant. They were all so lovely and happy to see me- it was so nice to walk into their office and show them how well I am. I also left Mabel (my extremely attractive walking aid) with them and donated my old nebulisers to them as I am not allowed to use the same ones post transplant but they were both only a few months old so didn’t want them just to be binned!
This week it was Uncle Jim’s turn to be away and I had a lovely weekend with Aunty Jane. My good friend Jo came round for a thai takeaway and a girly sleepover on friday night which was great. Jane and I had quite a few nice outings and little walks over the weekend and lots of nice meals 🙂
I have now put on a stone in weight since leaving hospital and while this is excellent, its not really going where I want it to! I have a big tummy and a fat face with no cheekbones and then have stayed stupidly thin everywhere else! I am also being warned by lots of people to cut down on the food as I will very quickly get too fat… at the moment this seems like an impossible outcome but it is something I need to be careful of, as I am eating a ridiculous amount… (I call it eating for healing!).
Clinic this week was fine but not the best. Everything looked good apart from my lung function was down slightly by 2%. Not a big deal but its the first time it hasn’t gone up so that was a bit disappointing. It also means that I have to go back to clinic next week which I was hoping not to. It was another fairly long wait to be seen by the doctor, both Mum and I fell fast asleep in the waiting room which was a bit embarrassing- the lady sitting opposite us was laughing at us! We are doing quite well at investigating the local pubs in Harefield for lunch- I am comparing steak sandwiches in all of them!
The hospital still don’t have a home spirometry kit to give me which is very annoying, as it means they wont let me go longer without seeing them at Harefield until I can monitor my own lung function daily. They are having issues with their supplier and cant do much about it but it is getting a bit of a pain travelling to the hospital every week and it means I start every week getting really tired. Anyway cant be helped and at least I am in a much healthier state now to do the journey!
I have a quiet week this week, mainly on my own at home. I am thinking about making a cake today and I am also waiting for the oxygen people to come and pick up my old concentrator and equipment today as I no longer need any of it! Its lovely to be waving goodbye to all of that 🙂
This weekend Phil is coming over with his Dad and they are going to watch rugby at Twickenham. Then I am so excited as I am going back to Jersey with Phil next tuesday for a few days. It has been 8 months since I have been in Jersey and my house and I am really looking forward to it and also seeing my little Disney 🙂 I wont be back for long so unfortunately I wont be able to see many people but hopefully it wont be too long before I am back for a bit longer. Although the boat is so expensive- it has cost us almost £600 just to get me back for a few days… ridiculous! I cant wait until I can fly again. I have a bit of a cold this week which is annoying as I need it go before next week so lots of rest and fingers crossed!.
Finally, some really exciting news- Phil and I have another little nephew this week- Oliver Barry Clarke. We cant wait to meet him and see Becky and Chris and big brothers Owen and Liam. Big congratulations to them 🙂
Think that’s about all for now, I will post again after my trip to Jersey!
Love Kerry xxx