Any transplant parents out there?

[southernbound]

Hi I'm just wondering if any parents of kids who have had/need organ transplants are out there and would like to chat.

My son was born with a condition called biliary atresia and is almost guaranteed to need a liver transplant before he graduates high school. He has been doing well up until yesterday when they found his spleen is enlarged at a routine dr appt. Now we're awaiting results but the suspicion is portal hypertention which would mean he'd go on the transplant list immediatly.

He had been doing so well up until we found out about this and so this just kind of through us into a tailspin and I'm panicking a bit. Any advice/ consolation would be very appreciated.

 

[purplerat]

Hi, my son will is now 5 and had a kidney transplant from his dad at 2 1/2 years old. He was born with polycystic kidneys and both were massive (20 cm and 750 g each) he was very poorly as a baby and has been tube fed for the last few years. This last year he's made amazing progress and is eating, drinking , is energetic and goes to school normally. The transplant journey has been a long one and we always knew he'd need one but at first we thought he'd be a teenager. In the end his time came much sooner and I am glad in a way that he went through it all when he is too young and can't remember . In a strange way I didn't see the transplant as such a big deal as everyone else, to me it was just the next step in his treatment iykwim? Looking back though I can see how poorly he was and just how much he's been through. He may one day need a liver too as he has an associated condition (which can also lead to portal hypertension )( and he also has an enlarged spleen too) but currently that's a long way off. Any questions you have Id be happy to help answer. Where is your son treated? X

 

[southernbound]

Hi!! I'm so happy to hear about how well your son is doing. That does my heart good He had his Kasai procedure (tying his small intestine into his liver) at Dalls Childrens Medical here in Texas (that's east Texas and we live in West Texas so we lived in a Ronald Mcdonald house there) when he was 11 days old, but we have a childrens hospital here in our city that does his tests and routine treatment. He'll have to go to Houston TX when his transplant comes up though.

How is life after the transplant? Are the medications too awful? How does he do at school with the immunosupressants? I'm not overly worried about the transplant itself, we have a wonderful doctor here that has done an obscene number of liver transplants and I have faith in him, I'm more worried about life afterwards.

Do you all have to do the routine byopsies to check for rejection? How has all that gone?

 

[purplerat]

Hi!! I'm so happy to hear about how well your son is doing. That does my heart good He had his Kasai procedure (tying his small intestine into his liver) at Dalls Childrens Medical here in Texas (that's east Texas and we live in West Texas so we lived in a Ronald Mcdonald house there) when he was 11 days old, but we have a childrens hospital here in our city that does his tests and routine treatment. He'll have to go to Houston TX when his transplant comes up though.

How is life after the transplant? Are the medications too awful? How does he do at school with the immunosupressants? I'm not overly worried about the transplant itself, we have a wonderful doctor here that has done an obscene number of liver transplants and I have faith in him, I'm more worried about life afterwards.

Do you all have to do the routine byopsies to check for rejection? How has all that gone?

Hi!

Life after transplant has been up and down for us. To start with it was great, my son was eating more by the day, gaining weight and growing and getting energy and no longer being sick. He was initially seen every other day in clinic, then twice a week and then once a week and it stayed like that for a few months. They threatened a biopsy 3 times as his numbers were increasing and they sensed rejection but each time they prepared for biopsy his numbers came down. In March after Tx so 6 months later he did have a biopsy as his numbers rose again and did not come down. It revealed accute rejection luckily this was fixed with 3 days of IV steroids in hospital and a change in immunosuppression. After that things went down hill. Will was our on a drug called MMF to prevent rejection but it made him so ill over the 4 months he was on it. He stopped eating and was so lathargic and being sick/ diareah daily and it was like pre tx. We were seeing clinic every 2 weeks at this point . Each time they added more meds as he was so unwell . He ended up on more meds than pre tx . Finally that september nearly a year after tx they changed the mmf back to his old med- azothiaprine and since then things have got better and better. Over the last year and a bit he has got so much energy, eats so much , no more sickness, and most of the medications have stopped. He's just on 4 a day now (some are twice or 3 times a day). This is an immunosuppressive, steroids, anti reflux and something for his blood sugar (not to do with transplant)

His school are very onboard, and before he went we gave them a plan and they inform us if anyone was very ill so we can keep him away. They give medication at school and it's been easier to manage than we thought.

All the meds he's on now are working greatly. It just took a while to get that balance. Life post tx has been more of a roller coaster than I thought it would be but now 2 1/2 years on looking at him it's been worth it all x

 

[southernbound]

Thanks for all that info! !! That makes me feel so much better im so glad your boy is doing well.

 

[purplerat]

Glad to help I hope your son doesn't need his transplant immediately and you can enjoy some time before all the worry and stress of it takes over. If you ever want to chat about it all feel free to PM me xx

 

[arodriguez168]

Hi I know this post is a little old but I thought I would share anyways.
My husband had biliary atresia as a baby and also needed a kasai then a liver transplant. They told his mother he would need another liver by the time he was about 15 and that he would likely never have kids because of all his medications. He got his second liver transplant when he was 19 because he wasn't taking his meds religiously but now he's doing amazingly and we just had our first child! For awhile we were unprotected because of what his doctors said but it was definitely possible! Aside from not being able to drink and having to take meds he's living a completely normal life

 

[southernbound]

Thank you so much Arod You really made my day and perfect timing. So as an update at the time the original post was written the splenomegaly was caused by a virus so he was able to keep his liver. Up to now he's been doing amazing. The only caveat to this is he's had 5 pretty serious internal bleeds in 9 months and they've never been able to find the source. The doctors have gone as far as exploratory surgery and flying him to other hospitals on the other side of the state for second opinions and testing and no one can even make a good guess as to where its coming from. They stop on their own all at once and no signs of a recent bleed can be observed anywhere in him. It's bizarre. The hepatologist in Houston feels strongly that the bleeds are coming from tiny vessels in his liver and would like to start moving towards a transplant immediately but after a lot of thought and second and third opinions we've rejected this route. With the exception of the bleeds which are rare and easily controlled his life is fabulous. Growth and development are perfectly on par, he's physically comfortable etc so we just can't in good faith let them transplant him until either it would improve quality of life or they can prove that's where the bleeds are originating. The compromise has been that he will be listed and kept at the bottom of the list and his placement will be assessed at every followup appointment until something changes (he needs one or they find the bleed). So for now just in a holding pattern