rejection of homograft

[abbanabba]

HI RI mom, sorry to hear your little boy's valve deteriorated so quickly. Unfortunately it's one of those things that sometimes just happens... I was warned when I first found out I would need a new pulmonary valve that there was a small chance it would only last a year or two (even though for most adults it's usually 10-15 years) which was one of the reasons they were delaying the surgery for as long as they did. Sadly they seem to have a much shorter lifespan for children, but I don't know if there's much difference between the homografts and the xenografts as far as longevity is concerned.

It may be the next valve they put in lasts much longer. Like cars off a production line, some of them go on and on and on and others seem to break down as soon as you drive them out of the yard. Why? Who knows..? It may be that your son was just very unlucky with that particular valve and the next one could last much longer. It certainly wouldn't hurt to ask about the porcine and bovine valves to see if they're are an option or not.

Meanwhile, I went in being told I would receive a porcine valve, only to find out 3 weeks later I ended up with a bovine. So far it seems to be doing well, but it's early days and I guess my situation is quite different to your son's.

Hope you can reach a decision that works for you both.


A : )

 

[Curtsmum]

Hi, sorry i can't be of any help to you. Just wanted to say welcome, lots of great people here who can help with your questions. Best of luck with it all, hope it all works out. All the best, tc.

 

[DanielCohen]

If you are still "shopping" for surgeons, I'd suggest Dr. Ben Peeler at UVA or the surgeon we are going to be using on May 20th, Dr. Thomas Spray at CHOP. If you are not geographically bound, Dr. Joseph Forbess at UT Southwestern Medical Center discussed my daughter's PVR for hours on the phone. We almost went to TX, but then we found CHOP and Dr. Spray. Hope these names might help.

 

[RI Mom]

Thanks Daniel for the names. Best wishes to you on the 20th!! I have contacted Dr. Spray who has my child's records and will hopefully be getting back to me soon. My son's surgeon would like to use the Hancock II bioprosthetic as a replacement. I'm very curious to see what Dr. Spray thinks of that. I do not want another homograft at all. I am still torn on whether or not to travel for surgery. There are some significant pros to staying where I am but concerns as well. I know those concerns will be constant no matter where I go. Since my son is 6, he loves to have his friends visit him in the hospital and it really helps in his emotional recovery (mine too). Then there's the fact that the team has already been in his little body and know what to expect. My child is one of their "heart kids" not a stranger and sometimes I feel that it makes a difference. They know us, we know them, we know what to expect, etc......... Such a hard decision!!

Again best wishes on the 20th!! Please send an update when you can.

 

[MissMelis]

Hi Theresa

Just wanted to say welcome. I'm sorry you and your son have had such a bad time...sometimes it's just bad luck.
I am glad you are reaching out for other opinions, I hope you can find something that you will be comfortable with.

Keep us posted and take care!
Melissa