My daughter was diagnosed with CHF & portal hypertension in 09, and has just been put on the transplant list - anyone with similar stories?

[joebron]

[picklemum]

Hi, I'm sorry to hear your daughter needs a transplant. My three year old daughter has CHF and portal hypertension but is being treated with meds and regular bandings. Does your daughter need a transplant because of poor liver function or the severity of the portal hypertension? I hope everything goes smoothly for your daughter,

Best wishes

Alexia

[joebron in reply to picklemum]

HI Alexia lovely to hear from you...my little girl is now 9 but was diagnosed in April 09 and was on a similar treatment programme...she was put on the transplant list in Feb this year mainly due to a drop in liver function, her portal hypertension, enlarged spleen and varicies on her cheeks were byproducts of this. But during all this time it's been business as usual for her school, ballet, brownies, cubs swimming, pony riding. That's why it was hard when they did put her on the list. Amazingly though we had a phone call 10.30am this Tuesday to say they had a match and she had her transplant Wednesday..back on the ward yesterday. Doing very well but still a long way to go. They said that it is better to do a transplant if there's a choice when they are well, as they are much stronger to get through the process. Just bonkers that 3days ago she was in school and now this. We did manage to have a dry run last Thursday as we had a call at 3.30 in the morning that they had a match but unfortunately they agreed at 7.50pm it was not viable to split so wey had to come home. It's been a bonkers week....fingers crossed. xxx

[sburnett in reply to joebron]

Can I ask how your daughter is doing now? I hope she is well and keeping you busy taking her to all her activities.

[picklemum]

What a week, I hope she recovers quickly, we're thinking of you all. People find it hard to understand what's wrong when they're running around normally, hopefully she'll be back to that in a few months. We're due to go to kings tomorrow for next ogd if a bed is available, as long as the marathon doesn't interfere with travel across London! Best wishes to you all Xx