Hello everyone, how are you all?
Once again, sorry for the lack of blogging- my excuses are a mixture of being busy living and also being ill in hospital again…. But more of that later!
Today it is 9 months since I was given the most amazing gift ever- a perfect set of new lungs and the chance of a future- something that was becoming less and less likely with every second this time last year.
This week is quite a big week for me- 9 months is a great milestone post transplant- most of the way through the all-important first year. This week also not only brings my birthday too but my 30th birthday no less- this time last year I found my approaching birthday really quite difficult, although I had a lovely day being spoilt by my family, I honestly believed it would be my last birthday and I had given up hope of actually reaching my 30’s. After a whole year on the active transplant list- we had all secretly set my last birthday as the date that things would probably be better by, and when the date came and went with only more illness to report- we all felt quite deflated by it. I also knew my body was not going to hold out much longer by this point.
So, what a difference a year makes! I am just so happy and excited to be here this year, celebrating my birthday with my family and friends and just amazed how alive and well I am, and basically living a normal life. Wow.
As always there is a special person that is no longer here, 9 months ago today another family went through something very different and not a day goes by that I don’t think of them.
So in the last month, I have been rather busy! I came back to Jersey and settled back in, had a week off with Phil over his birthday which was lovely. We actually spent some time together (after another 2 and a half weeks apart) and we did some touristy bits around the island and enjoyed the lovely sunshine. I have also started on the mammoth task of sorting out the house and all our belongings etc and did a car boot sale with Andy and Kim and I made £82 profit after paying for the site so was really pleased with that, it was hard work though and I was shattered afterwards!
Sadly Jersey has said goodbye (hopefully temporarily!) to Kim and Andy as they have now moved to Brighton, I am hoping to get to visit them very soon as I am already missing them loads ☹
We have attended a couple of friends’ lovely weddings:
Health-wise there have been a few ups and downs during the last month. Since my last blog I have remained on high dose steroids and anti-rejection drugs which hopefully are working their magic internally but are taking its toll on my little body and some of the side effects are annoying. I’m not complaining because compared to what I lived with before these little things aren’t even worth mentioning but I find the appearance changes the hardest things to accept. I don’t feel that I look good- my face is very rounded and swollen and my tummy is hugely bloated- I’m not used to looking or feeling like this and it can be quite strange. I’m also so hot all the time and getting flushes and can be quite shaky. Hopefully these effects will lessen when the steroid doses are reduced (which will hopefully be in the next couple of weeks). I would also like to start sleeping again please as I seem to have a brain on over-drive at the moment- my job lists are driving Phil mad- especially when I start adding to them in the middle of the night when he is trying to sleep!
The 9th August was Harefield clinic check up, Phil and I already had an overnight boat trip paid for that we cancelled last time when I was ill so we used that and took the car to the UK. We did a round trip and went to visit Aunty Sue and her gorgeous new puppy- so cute! After I had emptied Sue’s house of all the lovely food I could get my hands on, we drove up to Jane and Jims and spent the next few days there which again was so nice. The weather was beautiful so we made the most of the lovely pool and garden and got thoroughly spoilt really. We did a few shopping trips- to Primark and Tescos for cheap supplies (I miss them in Jersey!) and had such a great day out at Chessington with my cousins. That was somewhere I really wanted to go all together post transplant- it always used to be our treat to have a day out there when we were younger and went to stay with Jane. It’s funny because I hadn’t been there for probably at least 15 years yet I remember some rides being exactly the same!
Clinic on the 9th went well, everything was absolutely fine except my tacro levels (anti-rejection drugs) were too high. They are usually stable in the therapeutic range at about 9 /10 but for some unknown reason my levels were 24. Harefield stopped my drugs for 24 hours and then restarted them on a lower dose and I was told to send repeat bloods in a few days. They also told me I might experience some gastric problems due to the levels. Anyway, by that evening ‘some gastric problems’ proved to the understatement of the century and to cut a long story short, 3 days later I ended up in the local A&E quite unwell and severely dehydrated. You may think that sounds very silly of me however it really wasn’t my fault- I had been drinking 4 /5 litres of fluid a day and it still wasn’t enough! I didn’t eat for the best part of a week and lost half a stone. So we missed our boat back to Jersey but got another one 3 days later. It was all a bit of a rush but I got better just in time to travel back and fingers crossed have been fine since. My tacro levels are still high but now about 14 so closer to normal but I’m still sending bloods off every few days to monitor it. This has been another learning curve for me- realizing how finely tuned and balanced my body is and how the smallest changes can have big effects. It was also my first experience of being in another hospital and managing the relationship between myself, doctors and Harefield. I was very firm and definite with the local Doctors as I do feel that I know certain aspects of my body better than them and its not easy to stand up to people treating you and keeping them on your side but they were absolutely brilliant- they listened to me and took on board everything I said and really worked with me.
So overall, I have learned that I still have not learned to pace myself properly!! I must learn to rest more and sometimes say no to packing too many things in to a day. It’s hard though as I always feel fine when I arrange things and so many people are always asking me to do things which I love and just want to say yes to everything! There is a balance though and I am still working on it ☺
I am really excited about this weekend, I am going to some friends’ wedding- Lee-Anne and Dylan on Saturday and then I have my birthday on Sunday. I have breakfast at my old favourite- The Gunsite Café and then a special Christening to go to, quick hair sort out and a glam up session and then Phil has organized me a surprise night out on Sunday- not sure on what we are doing but I cant wait to find out now- all I know is I had to buy a new dress for it! ☺
Finally, I just want to share some great transplant news- two of my friends finally got their long-awaited transplants- Kimberley Kneil at Harefield who is already home and doing fantastically well and I am so happy that Bill from Glasgow has had his operation- after 13 false calls!! He really deserved number 14 to be the one and please keep both of these lovely people in your thoughts- they are in the early stages of a very hard journey- but one that is worth every second ☺
I would also like you to keep in your prayers everyone waiting for their calls and in fact anyone suffering with any illness. I have a few friends I would particularly like you to remember- I hope they don’t mind me naming them- but Kerry, Josie and my lovely friend Maysa are all inspirations to me and suffering for various reasons at the moment.
One last mention- Emma my lovely Jersey Transplant friend has celebrated her 6 year transplant anniversary this week. Congratulations Emma- its all down to your determination and hard work ☺
Think that’s all for now, I will blog again after my birthday and next clinic appointment on 3rd September to keep you all up to date.
Hope everyone has a lovely bank holiday weekend xxx