Today has been a day of mixed emotions…..
- Blood levels are declining fast suggesting the leukaemia is getting worse 😦
- Getting released from hotel PCH! 🙂
- Discovering how unlikely it is I will get the funding for my transplant from the NHS……. 😦
The Fast Decline 😦
It seems the leukaemia might now be starting to take its toll on my body. I got a print out of my blood levels over the last few weeks and it shows just how dependent on blood products I now am. I am having 2 units of red blood cells every 4/5 days (previously this would have been every 2-3 weeks). Also after having platelets yesterday my levels barely incremented, suggesting I’m either rejecting the platelets or I’m just not producing anything of my own! All a little bit scary. Hopefully it will start to settle down as my body gets over the infection…….
Going home and back at the gym 🙂
I got the sign off to go home this afternoon. After the laborious discharge process I was set free around 4pm with all my oral antibiotics. Of course the first thing I did was go home, get in gym kit and head to spinning!! Just a half hour to class to ease me back in 😉
Great to be home…. but always a bit weird after 2 weeks of being in the hospital room! You do get used to having all the nurses around, having your lunch made for you, etc!!
Will the NHS pay?????
I finally got to talk with my consultant Kavitha this afternoon, who seemed much less chirpy than normal.
My application for a second transplant is going to the panel next week. This is when the commissioner will decide if I can get the funding for my transplant. When talking about it before with all the consultants it seemed like the application process was just a formality. I knew there was a chance it could be rejected, but today Kavitha seemed even more negative about things. Apparently the NHS have got a rule in place that no second transplants are agreed to, and they aren’t even doing it on a case by case basis. So I’m not even sure I will stand a chance of getting it.
I should know by the end of next week what the decision is and then that will decide the next step in my treatment, with plan B not being anywhere near as good as plan A. If it is rejected we will of course appeal, and I will need your guys support!! We will need to hammer social media to see if we can get the department of health to agree to fund me.
Fingers crossed it won’t come to this….. but I hope I can count on all of you to help if the time comes!
Here is the report detailing how stem cell transplants are funded….. fingers crossed I’m one of the exceptions http://www.england.nhs.uk/wp-content/uploads/2013/04/b04-p-a.pdf