Hello, I am updating this from Walton 🙂
I was discharged from Harefield yesterday and will be spending Christmas here with Phil and the Piersons and Devereux family 🙂
The final verdict from Harefield was RSV ( a respiratory virus). They gave my lungs a good clean out during the bronch and I had a week of anti-viral nebs which are really strong & horrid but thankfully did their job and on Saturday I had my second negative swab result which is what was required to get me home for Christmas. Im also on some strong antibiotics but the Doctors said that the lungs are not in bad shape and the virus was more in my tubes than the actual lungs so that was reassuring. The best thing is there were absolutely no signs of rejection so I managed not to have any increased anti-rejection doses or steroids so Im hopefully not going to blow up like a balloon again (well, apart from Christmas food!!).
I am hoping to get back to Jersey on 27th and I will be followed up in Harefield at the end of the first week in January. Phil already has the all day boat booked back that day with a cabin so I can join him and not be surrounded by germs etc which is very important at the moment- I need to be really careful until I am fully recovered.
Its so nice to be out of hospital- it has been a long week and I am feeling pretty tired and weak- I need to build myself back up again. I have lost over half a stone in weight, which to be honest I wanted to anyway- not sure whether it was from illness or hospital food!!
My toe has healed really well, they took the stitches out for me on Saturday and so far so good 🙂
The doctors and whole team at Harefield have been so brilliant and really pulled out all the stops to get me well and home for Christmas so a massive thank you to them.
I have got some things to update you all on but I will wait until I am back home for that so all I really want to say is thank you everyone for all your support and well wishes and I hope everyone had a fab christmas 🙂
Lastly, please spare a thought for all those families this Christmas who have lost loved ones and those who are really poorly this Christmas. I also have a few friends desperately waiting for their new lungs and I would so love to see that happen for them very soon.
Lots of love xxx
Sorry I have neglected the blog recently despite having so much to update you on! I’m afraid that this post is only going to be a quick post to let you all know I’m a bit poorly at the moment and back in Harefield.
I have been struggling for a couple of weeks on and off with coughs and colds then I started to get worse so I came over to Harefield to be checked by the Doctors here. Things didn’t seem too bad so they sent me home with antibiotics. I stayed the weekend then came home last Tuesday, had my operation on my ingrowing Toe nail on Wednesday and by Thursday was really quite worried about my chest again, my lung function had dropped significantly and I had quite a lot of chest pain. I flew back over to Harefield on Friday and was admitted.
They thought I had RSV (a common childhood respiratory virus, just not as simple in immunosuppressed lung transplant patients!) I had it exactly this time last year, so I know the treatment for it is horrid nebs 6 hours a day. Since Friday I have now tested negative for this virus but have to stay on nebs until I have 2 negative results. I’m hoping the next swab will be today.
Yesterday I had a bronchoscopy. I felt pretty rough all day after the anaesthetic so slept a lot. I will see the doctor today but from what I understand there wasn’t an awful lot to see down there. They did give me a Hoover out as there were some secretions and they took a biopsy. The results will take a few days.
I had hoped that after the bronch my SATs would improve but unfortunately they haven’t but I am in less pain than I was.
All very annoying because we aren’t really sure what we are treating at the moment. I’m gutted to be in here and missing the run-up to Xmas which I was really looking forward to this year. I am however being really well looked after, the Doctors here are being brilliant and doing everything they can to get me out for Christmas. I definitely won’t be in Jersey for Christmas but Aunty Jane and Uncle Jim have kindly invited Phil and I to join them.
I’m being barrier nursed so I’m not allowed out of my room 😦 everyone who comes in here has to wear masks and aprons etc so the nurses all stay away as much as possible. I’m going mad looking at 4 Walls! I do get an ensuite bathroom though ( there are only 2 rooms with this so I’m lucky!).
Jane & Jim visited on Saturday and Dad popped by on Monday seeing as he was in the uk. Il see Phil on Sunday morning which I’m looking forward to.
Will update you when I know what’s going on.
Hope everyone is enjoying getting ready for Christmas xxx