Thursday, September 27, 2007

Long overdue proper update

Peter is at transplant clinic today. He will be having another biopsy to check on rejection. He really doesnt like this procedure, and itr tends to keep him at the hospital all day. His mum has taken him as otherwise I would have to get a sitter for the children and it disrupts thenm badly. So whilst Serena is glued to High School Musical 2, I am going to attempt to update properly this morning.

Peter has been home about a week and 5days now. We spent the first week making daily trips to Harefield still as he needed blood work done to check his tacrolimus levels, and his dressings done on the VAC pump. One week ago, he finally became wire free for the first time in over 2years. The VAC was removed as his hole from the LVAD in his side were healed enough. I embaressingly didnt notice straight away when he walked in the house with no VAC, it was a strange moment when i realised there were no wires commected to him. On friday last week, his wounds were checked and they have been ok-ed. So he also had his first shower in over two years at the weekend.

Life is slowly getting more and more normal. Peter is still tired at times, and occasionally falls asleep mid afternoon, but its getting less and less as the days wear on. The girls are loving him being home, and things are more relaxed round here.

I have had people ask if he will have to take this cocktail of drugs for the rest of his life. yes he will. Rejection of the new heart can happen at any time. anti-rejection drugs will always be part of his life. Peters donor also had something called CMV, which, for most people is pretty harmless. However for a transplant patient it can be quite nasty. He is on a drug called valganciclovir which apparenly quite expensive.

(serena acting up so will add more later)


Sarah said...

Prayers for the Biopsy to go smoothly! Peter has come a long way.

The Life of a Paed Heart Transplant Recipient said...

Hope that everything is ok with the biopsy and that Peter isn't too sore afterwards. Do they go in through his neck to get the sample?

Hope that you aren't having problems getting the valganciclovir from your GP because of the cost.

Glad that life is slowly returning to normal.

It's really good to hear from you Sarah. I check everyday to see if you've updated.

Loads of love

Bev xx