Health News 12 Patients Swap Kidneys at 3 Hospitals(Feb. 19) - Doctors at three hospitals announced they have successfully completed the first six-way, 12-patient kidney transplant involving multiple centers — a feat that could dramatically increase the number of kidney transplants done each year.“We have performed a six-way domino procedure at our hospital before. But this is the first time we have done something this ambitious on such a grand scale involving two other hospitals,” said Dr. Robert Montgomery, chief transplant surgeon at The Johns Hopkins Hospital in Baltimore.
“This will serve as a blueprint for national match in which kidneys will be transported around the country resulting in an estimated 1,500 additional transplants each year,” he said.
The Feb. 14 procedure involved six donors, six organ recipients, and surgical teams at John Hopkins, Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City. In all, nearly 100 medical professionals took part.
The procedure, known as kidney-paired donation or “domino swap,” takes a group of incompatible donor-recipient pairs and matches them with other pairs in need of a kidney that will match. By exchanging kidneys among the pairs, each recipient gets a suitable kidney.
All six donors, one man and five women, and six organ recipients, four men and two women, were in good condition, doctors said. As part of the complicated trade-off, Johns Hopkins flew one kidney to Integris Baptist, Integris Baptist flew one kidney to Barnes-Jewish and Barnes-Jewish flew one kidney to Johns Hopkins.(Source: http://news.aol.com/health/article/kidney-domino-swap/351857)
So, today was clinic. Don't panic- apparently all's quiet on the kidney front. But, Daddy asked the Nephrologist for a referal for a 2nd opinion before we do the Mitrofanoff catheter in April. Neprho said that he'll schedual a meeting with him, the Urologist and our family so that we can feel comfortable before we move forward. He also said that he didn't think that the Mitro would interfere with Little Pom's dialysis. I am terrified. This is a HUGE decision and LP has to be ready to catheterize himself consistantly every two hours or else there could be complications. LP is not a fan of doing ANYTHING every two hours. So, basically, I'm dealing with:- Fear of permanantly altering my childs anatomy.- Fear that once we do, we/he won't be able to be as rigorous as we need to be.- Fear that once we do, LP will still end up on hemo somehow.- Fear of the unknown.- Fear...in general, you know?But the simple fact is: no mitro, no transplant. I feel backed into a corner, undereducated, underprepared, unsupported. And I don't know what to do about any of these feelings. My research has turned up very little. Our urology team doesn't have time for us and tends to be rather brusque with us when they do. And there is no "kids with caths" support group, or play group, or e-list or anything. I think I would feel sooooo much better if only we could meet another family with a kid LP's age who has a mitro and is thriving. I think I'd feel better if I knew that this wouldn't have to be a forever kinda thing. In the meantime, we have to buy two of these for Little Pom: http://www.epill.com/pediatric.html10-Second Pity Party Coming Up:It's HARD being a parent!
Well, we've had a busy couple of days! On Thursday, Little Pom had urology clinic. This is also known as our quarterly 15 minutes with the urologist. We got some news that last fall would've made me very happy- they want to move forward with his Mitrofanoff. Three months of bladder training using the supra-pubic and there's been no progress, so, we move onward. Honestly, I was really shocked at how hard this hit me. After all, in November I'd been angry that they were making us wait before we did it. I felt as if they were unnecessarily delaying LP's progress towards transplant eligibilty. Now, after three months of hoping that maybe this whole procedure could be avoided, it was back...and I was shocked. I guess I hadn't realized just how hopeful I'd been until they yanked the rug out from under me. To be fair, this is a good thing (I guess). After all, by mitigating Hinmans Syndrome, we move forward towards a kidney transplant. But, as I've discussed before, the Mitrofanoff is a really *big* surgery. Not in terms of the actual surgery- the urologist wants to do it using the super-duper-bestest-most-technologically-advanced lathroscopic robot available. Which is pretty cool. But still....we're re-arranging organs here! We're doing something that will result in my baby peeing through his belly button for the rest of his life. This is B.I.G. big. We do not enter into this lightly. This is one of those times when the full weight of parenthood settles on your shoulders and you wish there was someone bigger, more qualified, more competent than you are to make the hard decisions for you. But there's not.One of our biggest concerns is the fact that once they do the Mitro, there's a chance it could interfere with Little Pom's PD (peritoneal dialysis) and he could end up on hemodialysis. This is bad. Not only is it harder on his body (involving multiple needle pokes and faster, less frequent cleaning) but it would pull him out of school for 4 hours, 3 days a week. I'd basically have to quit my job and manage his care full time. He would have to receive homebound services...something I've been trying to get for him (to no avail) for months now. Everything would be harder, scarier and more trying than they already are. I don't want that. And, if for some reason Daddy doesn't work out as a donor, this would become the status quo for months, if not years. So, we're going to ask if it's possible to put off getting the Mitro until we've got a confirmed tissue match. He's doing well on the PD and we don't feel a need to rush into anything. It's just a matter of whether or not the transplant coordinator and his care team (Nephrology and Urology) will let us delay it. It's quite possible that the transplant people won't more forward until he has the Mitro in place. In which case, it becomes a crap shoot- get the mitro and hope to goodness that it doesn't interefere with the PD. Needless to say, this has been a tiny bit stressful for us. We ended up needing to go to the super-duper-ultra-cool-robot hospital for pre-surgical stuff on Friday. That was good, because it meant that I had to take a day off of work and frankly, I was such a scared, stressed zombie (such a pretty picture, huh?) that I would've been useless anyway. Ugh.So, comment time: what would YOU do if you were in our situation? I really need some feedback. I've found some e-lists and support groups for parents of kids with kidney disease, but I'm just so overwhelmed. In order to encourage your feedback, I will pre-reward you with pics of Little Pom:Here he is after taking 3rd place in his first ever Cub Scouts Pinewood Derby:
And here he is showing that even after a 0-16 season, he'll always been the Lions #1 fan:
