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Monday, January 16, 2012

Transplants and politics and Mito?

Over the weekend on one of my Mito Groups I participate in, someone shared the story of child being denied a kidney transplant by the transplant team because of cognitive delays. I don't know the whole story but here is a link to a site that goes into the situation at CHOP in more detail;


This story really got me thinking. As you know Abby has some kidney issues- suspected secondary FSGS. The lesion found on kidney biopsy and clinical data is what leaned her Nephrologist to this diagnosis. It would be secondary because it is suspected to be caused by the Mito. Not terribly uncommon to find kidney disease in Mito patients, but secondary FSGS due to Mito is pretty rare. Though only a few handfuls are documented in the literature, there are more patients then that and they are finding more all the time as awareness of Mito is spreading in the medical communities. For this diagnosis, there is no treatment except to try to manage her Depletion Syndrome- not what we wanted to hear.

Of course we have thought about another trip cross country to confirm the diagnosis, and we still might-but I trust her nephrologist. She is not the type of Dr. to diagnosis something like this lightly. I may be biased, but she is one of the best in Houston as far as willingness to look at Mito as part of the big picture.

I have often wondered when and if her kidneys are going to fail- there is simply no way of predicting when or if that will happen. The few other patient families I have chatted with are split- half are failing quickly, the other half seem to have mild to no progression.

So what happens if her kidneys fail? Could her poor worn out body even handle the rigors of dialysis? If she needed a transplant, would she be approved? Would any of us be able to donate a kidney to her? Would she qualify for a donor kidney? And if she did get a transplant how would her sensitive and frail body handle the shock and treatment? Frankly, we have put off having her wisdom teeth being removed as we are terrified it could cause another jump in symptoms and fatigue.. What happens if before she needs the kidney she were to get much sicker, who decides? Would she be denied and on her paperwork we find a statement that says, "DENIED due to Mito"????

Not sure why, but her issues with her kidneys have finally triggered panic in us. Maybe it was just the generation we grew up in where kidney disease was nearly the death sentence that cancer was.. now they have so many more effective treatments- and I am really ticked that with all the treatments that none of them are for our Abby. Somehow over the last couple months we have calmed down. She checks her proteins now and then and they have been terribly high for the most part. But last month despite the proteins her kidney function looked really good. I think we will ignore the sticks and stick to the blood work.

At moments I can step away from the emotion and look purely at statistical outcomes. If the likelihood indicates that doing a kidney transplant will not improve the quality of life or longevity or the patient is not healthy enough to handle the rigors of surgery and treatment, with the constant shortage of organ donors, I logically understand they must triage based on need/success rate.

However, if it is baby(my girls will always be my babies,even at 30!)who's file is laid in front of a committee who are reviewing her medical,emotional, mental status to make the final decision- they better decide in favor of a chance, of a sliver of hope.


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