Friday, December 19, 2008

Baffled by the science

William is doing really well. He is back on full feed (volume at least, we still need to add more calorie concentration) and the plan for the next few days is to swap the IV fluid given to replace his stoma losses with sterile water into his gastrostomy. He is being weaned off all the IV antibiotics. The critical dugs that are being given IV are his steroids, anti-rejection medication and an anti-viral drug he is on because his donor had been exposed to a common virus (such as the one causing glandular fever) that he has not been exposed to and has no natural immunity. These will be switched to oral when the team are confident that they will be absorbed OK. The anti-viral drug represents one of the many advances in transplants that William is benefitting from. That is improved surveilance. William was tested for exposure to common viruses during his assessment. The donor is also tested and any viruses they had been exposed to that the recipient hasn't are treated after transplant to prevent them being transmitted. This kind of surveilance remains critical for the rest of William's life as future exposure to viruses, such as glandular fever can be very dangerous for someone who is immunosupressed. Catching them early enables them to be treated more effectively. Advances in the ability to test for exposure to viruses have been a huge boost in post-transplant survival.

William's liver is still behaving mysteriously. I confessed my googling to the team and it turns out that donor-versus-host disease is something that is on their minds, although they think it highly unlikely. He has had a blood test to explore the possibility. This is another amazing test. The amount of donor lymphocytes (one od the white blood cells involved in the immune system) that are mixed in the recipient blood are measured as a precentage. William's result was normal, with 1% of his lymphocytes coming from his donor. This makes donor-versus-host disease even more unlikely but doesn't rule it out completely. Only a liver biopsy can do that and he will have one on Mondy if his liver hasn't settled. This will be more to rule things out so we can all move on less concerned as William is so well in himself and has no other symptoms of anything too worrying. These kinds of uncertainties are stressful though and are sufficient to remind us all of the importance of remembering just what a huge thing a transplant is to the rest of the body and how you can never assume you are in the clear. You never know what is around the corner. William's body will be forever be balanced beween sufficient anti-rejection medication and steroids to prevent his body rejecting his new bowel and the donor immune system that it contains from attacking him and the dangers of infection caused as these drugs supress the rest of his immune system in the same way. We will all have to learn to keep a healthy balance that enables us to relax and enjoy our new life together whilst maintaining the vigilance that is our part in the partnership between transplant recipients, their surgical and medical team and the advances in medical science. The more I learn about it all the more baffled yet fascinated I am.


Anonymous said...

I am glad things are going pretty smoothly for William. I hope his Liver decides to behave himself soon.

Hope you have a calm weekend.

Emma x

Jac said...

You say you are baffled but I am so impressed about how much medical jargon you take on board! I'm supposed to be a doctor (and post transplant) and a lot of that was new learning to me ;-)

Fingers crossed the liver starts behaving soon..

Jac xx

Joopsy said...

Great to see Wills is still on the up Sarah. You are still in our prayers.

The Dunk family in Letchworth.

daisymama said...

Re The swallowing probs - have you tried chupa chups lollies - he has control over them and gets used to having something in his mouth. I used them for Daisy before she was nil by mouth - could be worth a try. Thinking of you all - Daisy also keeping us on our toes here. Steph xxx