It's now 9 weeks post transplant and I think I have felt every emotion possible.
Out of these 9 weeks I have spent more time in hospital than out and I just feel so frustrated.
I went to normal clinic to see the consultant and wasn't feeling fantastic but nothing to worry about. After speaking to the doctor and having bloods taken I made my way back to the waiting area where Chris was waiting for me. On the way I felt very sick and lightheaded and the next thing I knew someone was dragging me into a chair. I remember trying to struggle as they wanted me to sit up but I knew I needed to lie down. My blood pressure dropped too low and I passed out. I woke several minutes later in a chair surrounded by doctors and nurses. Obviously from this they decided they would get me a bed on a ward to keep an eye on me - an easier task than you would think. I had to wait in a room till around 5pm before a bed became available. My BP was unstable and some of my electrolytes were too low so they were going to try some medication to help.
I ended up having so many cannulas in that they started to struggle to get access and I ended up having a central line in my neck. This worked well but after a week it needed to come out for risk of infection. They tried to insert another central line but after three attempts no such luck and they went for a groin line instead. This was much more painful than previous groin lines and still 2 months later my leg hurts. For a while I was on three drips, potassium, phosphate and Magnesium. I hate the Magnesium it makes me feel so ill.
After 3 weeks I was finally allowed home. I started driving which felt brilliant and so much easier as I could go to appointments without Chris having to do the trek with me. On my first appointment to Birmingham on my own I started to feel ill on the way and by the time I got there I felt terrible. I told the doctor and because I had a raging temp they decided to keep me in - not so good news for Chris as he had to catch a train to get to me as I had the car!.
This resulted in another week on the ward sorting out electrolytes again and getting me stable.
Once home they had decided it was now time to hand me over to Stoke, I can't explain how good it felt only to be 14 miles away from the hospital under one consultant and not seeing several and getting different opinions.
Since back at stoke I have been going twice a week, once for bloods and the other for clinic and bloods. I have had my first dose of Eculizumab at Stoke which went really well and efficiently.
Anyway will keep you posted over the next few weeks