Big Catch Up!
It’s been a very long time since I set this up and a lot has changed for me! I will give a quick synopsis to bring you up to date and then will try my very best to put small regular updates on here. Think this is the best way to make sure people don’t get left out as it’s really hard to keep in touch in hospital.
Unfortunately my hospital days seem to have begun. I didn’t have a very good summer, I was consistently Ill with colds and chest issues but nothing major the doctors could really treat or do much about. Then at the end of November, it was time for my six month check up at Harefield. I had a nasty cold in the two weeks leading up to the appointment and was only just well enough to go. It was a very big thing doing the travelling over which I managed but that night in the hotel had a terrible night and when I got to my appointment the next day, I really wasn’t feeling well. They agreed I wasn’t well and admitted me which thankfully was a very wise decision! I stayed in Harefield hospital for a week then managed to get an air ambulance flight back to jersey (in the snow!) and stayed in jersey hospital for another 3 weeks getting better and putting some weight on as I had gone down to 35kg. The minimal weight safe to operate on is 40kg so I was taken off the transplant list until this was achieved. It was also decided I now needed oxygen therapy 24/7 which is a shame as I have always held my levels well. Lung function at this point is down to 12% which is pretty dire!
I managed to get home 2 days before christmas and had a Lovely quiet few days with Phil and Disney and the family. The wednesday after Xmas I went back to hospital for a check up, my chest was all clear and my weight was a whopping 38.5 kg. Dr luksza was going to call Harefield right away to say how well I was doing 🙂
THEN, I started getting a little cough and by New Years Eve had missed a few nights sleep and was feeling really drained so I decided to call the hospital. I went to A&E via ambulance and to cut a long story story short ended up very poorly indeed in Intensive care by Sunday. I spent a week in ICU and have now been on a ward for just over 2 weeks I think (very easy to lose track of the days in here!) My weight plummeted after ICU but am slowly regaining.
They are still bafflled as to what I actually had, possibly the dreaded swine flu, we will never know, but it was viral and my body definitely didn’t like it. It has been a real shock to all of us and a big wake up call as to how urgent this transplant is.
The trouble is now that every time I get close to a decent weight or going home, I pick up another bug. This week has seen a gastro virus and a chest bug again which hopefully they have caught quickly with the antibiotics. It’s not been much fun to be honest.
Anyway the good news is I have amazing husband, family and friends who help me along all the time. Thank you so much for all your messages- please keep them coming, they always make me smile and I’m sorry I don’t reply much. This update has taken days to type!!
Think that’s enough for now and future updates should hopefully be short! Xx