As you know, we have chosen UCLA as our primary heart transplant facility. You also may know that we are working to lower Owen's antibody levels because they are highly sensitized. In patients with highly sensitized PRA's (panel reactive antibodies), it significantly lowers their donor pool. With a smaller donor pool, it decreases their chances of getting a heart.
UNOS (united network for organ sharing) is the national database that all donors/recipients go through. UNOS seperates organ donation into regions. We are currently in region 5 which means Owen can get a heart from a donor in that region.
We are fortunate enough to have wonderful medical insurance and they will pay for Owen to be listed at two different transplant facilities in two seperate regions. This is a huge blessing because it opens up his donor pool, which is already limited due to his sensitized antibodies.
Here's where we need a little advice... or recommendations. Since Owen is listed in LA and will probably be admitted to that facility (at some point)... we need to choose another transplant facility in a different region... but close enough to get Owen to a heart if it becomes available. Our options appear to be... Seattle Childrens (Region 6), Denver Children's,(Region 8) or Texas Children's (Region 4).I have met heart families from all three of these hospitals and I'd love to hear some insight about each one.By listing Owen in multiple regions, it will increase his chances of finding his "perfect" heart!
6 comments:
Well of course I'd be pulling for Denver because I want Owen to come stay on my unit. But I don't honestly know much about the other hospitals. We have some awesome surgeons that I have complete confidence in. One antecdote about Dr. Mitchell, one of the surgeons, the day of Alan's transplant spent ALL day in surgery with him - like 8am to 7 pm, then finally just left that night (BTW his wife was waiting to go into labor any second)only to be called right back when Alan got worse and coded. Then he stayed with him all night, sitting in the room watching the monitors and giving transfusions by hand. He kept the ECMO team right outside the room all night so they could put him on it right away only if he really needed it, which he did at 7 am. Anyways, these docs don't mess around - they will absolutely do everything they possibly can and don't give up.
All the coordinators are great with the kids and always easy to get ahold of.
We also have an amazing new facility (not that thats the top factor to consider) There's plenty of space for the parents to stay in the room both in the CICU (though I wouldn't recomend it post-op night if its too intense) and in the CPCU (my stepdown unit)
Both units have great nurses that I love working with and invest themselves personally into their patients.
OK.. sorry to get all crazy on you but I'm a big fan of Denver Children's. haha.. and Rob my husband just said that if you guys come here - we'll take you out to dinner :)
I used to work for a bio-medical company that produced some Echo technology. We compiled quite a file on each of these hospitals. We knew all of their stats, success rates, funding, etc. From that perspective Texac Children's blew everyone else away when it came to Cardiology.
I also spent a lot of time there and found it full of very friendly, very caring people.
For what it's worth...
Kristine
Here is my input... I follow way too many heart blogs. One is for baby Mia who recently got a heart at Seattle Children's. When she got her heart she had been waiting FIVE months and there are SEVEN other babies waiting for hearts there as of last month. The mom, Mimi, even mentioned a couple of babies becoming angels waiting for their hearts before Mia got one. It sounds to me like there would be a longer waiting list there. Mia's family blog is: www.mcdonaldfam.blogspot.com and www.helpbabymia.blogspot.com
As for Denver, Noah got his heart transplant there and his mommy Crystal has wonderful things to say about her experience there. They are also members of IHH. I understand that Denver does a ton of transplants. Noah's blog is: www.noahsadventure.com
Another heart mom, Wendy, that I communicate with lives in Texas and her son had his Arterial Switch operation there. I do not know about heart transplants, but she might be able to get you more information. Her son Luke (TGA just like my son)is almost two. There blog is: www.babyluke.wordpress.com (click on our journey-blog at the top to read their story).
I hope that helps. Good luck with your decision!
Hugs & Prayers,
Christina from IHH
Momma to Jacob (tga)
www.jacobsheart.blogspot.com
Our home care nurse has been a pediatric nurse for 25 years. We personally don't like Primary's (no offense to those who do) and our nurse absolutely thinks the world of Denver Children's. She told us to look into either UCLA or Denver... I completely trust her. She knows her stuff.
There's my two cents. :)
Of course I'm voting for Seattle...another heart friend is receiving his angel heart tonight! (Maddie's first roommate, he doesn't have a carepage or blog) That is 4 this year (that I know of)!!! I know that they had 15 transplants last year...hope this info. helps :) Would love to meet you guys too someday!
Love,
Katie
I can't give you advice on that but I am incredibly happy to hear that you are able to be in two different pools. That's great news for Owen!!!
Keeping him in my prayers!
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