I of course am not in your position but I could get on my soapbox with this example of total idiocy/lunacy that is now gripping the medical profession in this country today , dating back to before the production of the making of “cheaper vaccines” began. It’s called “control” and “money”. I was blessed to have a competent surgeon who just removed my gallbladder a couple of days ago. Ten years from now there may be surgeons ripping out organs with some tongs, a scalpel and a high school ged.
Also not all doctors “specialists” have the same mindset. Right now at least. Unfortunately you got a dud. And what is the difference between using a kidney from a very recently deceased person? Isn’t all that red tape cut out for the sake of time? And A LIFE SAVED?
I feel for you. You can make a big stink about it in the most annoying way possible so that you could possibly raise some eyebrows/awareness about your situation that someone will help you and or you can look to God to make a way for you and your wife but it will be His Way, whatever the outcome.
Rejected for having kidneys that aren’t chronically dehydrated? Bovine manure indeed!
Unfortunately it REALLY seems like the point of medicine now is for a diagnosable label and medication instead of actual help. I’m going through this right now (also, weirdly enough with a false diabetes flag). Because of some medicine I was perscribed I think I have a severe B12 deficiency, but because I’m thirsty all the time and my fasting glucose was 104 (a little high but not too bad, and low B12 literally CAUSES high blood glucose), they said I probably had diabetes, bye bye! But the kicker is they won’t give me the paperwork required to get the bloodtests for a 3 month glucose check or B12, so I have no idea why the “diagnosis and dump” occurred.
@t_h_wyman Considering how frustrating my situation is and I’m just barely sick, I can’t imagine how emotionally taxing this setback is, when it seems like the setback is totally fabricated! My best wishes to you and your wife for strength during this time.
The goal of the donor evaluation team is to make sure that a donor is physically and mentally healthy enough to donate an organ. I absolutely and wholeheartedly support that goal
That said, in this specific case I believe that that system failed horribly because, rather than performing a proper differential diagnosis, a single data point was conflated and pursued to the exclusion of any other possibilities while ignoring any possible contradicting evidence
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There is actually a very large difference between living and deceased kidneys. Kidneys from a deceased donor tend to last, on average, 5-10 years versus live donor kidneys which tend to last, on average, 15-20 years. Add in that living donation has a better chance of a near-perfect or perfect match
You also have a bit of an advantage with living kidneys because you can sort of schedule when/where you get the kidney. With a deceased kidney, you have exactly two hours from when you get the call to be in the hospital. Might mean we get called at 2am, might mean my wife gets that call when I am unreachable in containment and I do not find out for a few hours…
Ok but it still frustrates me for you guys. I just realized that my Pastor’s wife has received 2 kidneys within the last 2 years, the first being from a deceased donor, which did not make it’s home well inside her body. The second kidney came from a living donor, anonymous, and has adjusted itself well in her body. However I don’t know anything about the number of living years statistics but I suppose it makes sense.
The fact that my Pastor’s wife received 2 kidneys in 2 years is a miracle itself imho. What you and your wife are going through is beyond insane though and I won’t change my opinion on that!
After a month and change of fighting with them, I received word that I have finally been reactivated as a donor and am now officially cleared for the Paired-Exchange/Voucher Donation Program. My paperwork and files are being handed over to that team and I will be assigned a new coordinator who should, in theory, be contacting me within then next seven business days to discuss how things will progress from here
Not going to lie, actually had a moment where I broke down at my desk after I got the email because this fight has been weighing really heavy on me
I am so glad to hear that they finally reconsidered their asinine choice. I hope this means faster progress for you and your wife towards finding a match/getting that transplant. Keeping you in my thoughts that everything goes smoothly from here on out!
Oh man this is amazing news!!! So freaking happy you were able to get back on the list. Always be your own advacate!
Prayers for everything to move quickly and smoothly from here on out. And as you know i am here if you have any questions
Oh, my goodness. This is so great to hear! I hate that you’ve had to go through this absurd delay. It’s been bovine excrement, indeed. Big, big piles. So many people I know are having such difficult challenges with the American medical industry - emphasis on the “industry.” I do realize that most people in the field are truly caring, giving people.
I am so happy for you both. I hope that you feel this through the screen Travis. There is a lot of love and prayers for you, your wife, and your whole family. So many more prayers for you both.
Dude what!!! As if you’d never have noticed DI by now?! And how dare they make that diagnosis in particular without the extensive, very specific testing needed!
Because of the family-friendly nature of this site, I cannot express how irate I was about all of this. But you can believe there were many MANY expletives used by me for the better part of a month
After a week of phone tag, at 8a today, my paired-exchange coordinator and I were finally able to talk. After the 15 minute call, she sent me a bit of paperwork. At 10a (because I had a half hour meeting and then had to print, fill out and then scan the form) I submitted the paperwork and my one blackout date (I really want to try and make the return of NE CarpetFest this year LOL)
And now… We just have to wait and see how long it takes to pair me with someone else and get scheduled
Who has two thumbs and a tentative surgery window of 14Aug through 4Sept?
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This ugly waste of skin
