My coordinator called me this afternoon to break the news. My RBC or something was a little high so the doctors as the transplant centre said "no". I had seen a haematologist Monday and he wasn't too worried. Said he didn't see anything treatable or that would prevent surgery. Boy was he wrong and me too for believing him. Won't trust another Dr every again. They hold a promise of a new life in front of you like a carrot on a stick. Ge t you all excited of what could be, make you jump through flaming hoops to get tests and appointments on their schedule. Then they snatch it away......along with your hopes for a better life....
Well back to death row now with my fellow inmates......
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nh1966
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IDK. At this point it don't matter. The opportunity and the organ are both gone along with what might have been. Even if they figure out what's wrong w/me and fix it what's it matter. I may never get another chance at a kidney.
This has got to be hard for you but let us move forward and get this resolved. I have had to change my doctor before many times, just so that I could see all the options. Stay positive and confident that the problem will be found/ TREATED and YOU WILL BE READY!
The shift from my first to second nephrologist resulted in improved blood pressure (from running very low with sudden drops 4-5 tines daily and eGFR of 9 to higher blood pressure with no sudden drops daily and eGFR improved to 15).
I’ve just seen my third, and new, nephrologist. This change occurred because my second nephrologist only prescribeS in-center HD dialysis. I want to use PD Dialysis. My second nephrologist prescribeS nothing but in center HD; that’s all he does so all his patients have no choice, they have to do in center HD.
My new nephrologist is definitely on board with my trying PD dialysis. In addition, he is also actively treating some electrolyte imbalances that had begun while I was seeing my second nephrologist but had gone untreated (i.e., elevated chloride level, low carbon dioxide level, and elevated PTH level). I’m pleased that my new nephrologist is actively treating what he’s seeing in my lab results. Frankly, I already feel better and I’ve only been on this new treatment plan for 10 days.
Also, unlike the second nephrologist, my third and current nephrologist is referring me in for transplant eligibility testing. (My first nephrologist had wanted to do that as well, actually.) I have no idea if I’ll qualify for a transplant but I do think that I should consider all viable treatment options. I understand that I may well learn that I don’t qualify and there is no way to rectify the situation. If so, that will undoubtedly be disappointing—but I’ll at least know whether that’s an option for me or not. I’ll absorb the results, no matter what they are, and move on with this journey.
Clearly, CKD is not easy. The road to effective treatment is challenging. But two things are critical:
1. Attitude is everything; we have to maintain hope for the best possible outcome while preparing for any inevitability.
2. We must advocate for ourselves; it’s our life. The medical community is there to help but ultimately all decisions to be made are our decisions.
I agree with everyone's response on moving forward, but its completely unrealistic to do so without addressing the seriousness of what happened. It seems to me that that hematologist costed you the one chance you had at a kidney, and I would file a complaint. You shouldn't loose your spot on the list if you've been compliant this whole time. It wasn't your fault that your reading was unsatisfactory. You need to get some advice from a patient advocate. Contact NKF and find out what your options are in addressing this, while STILL moving forward. I'm sorry this happened, I cant imagine what this must feel like, other than what you described. It's psychologically damaging for your life to flash before your eyes like that. Speaking of which, while you move forward you DEFINITELY should seek a counselor. You will need help regaining control of your thoughts. My thoughts are with you during your recovery from this.
also, the transplant team may have dropped the ball as well, because they had no business scheduling the surgery without making sure that your bloodwork checked all the boxes. To me, it seems they jumped the gun without doing all of their proper homework first, and now your left feeling like your life is ruined. You definitely should contact NKF and see what can be done about this. Somebody was negligent somewhere and they need to be held accountable.
If I complain I may never get a kidney. They have you over the barrel and they know it. You do what they want, when they want it, how they want. They think their Gods
Is there a way you can make an anonymous complaint? (Although your case may be so unique they would know who made the comment.)
Do you have several transplant centers within range of where you live? Perhaps working with another center??
I’m supposed to be going through eligibility testing soon but my new nephrologist hasn’t yet referred me. I meet with his nurse practitioner in three weeks so will be seeking clarification on a timeline from her in that appointment. I honestly don’t know that I’ll qualify, but it will be good to get through the testing.
Anyway, should I qualify I’ll be seeking a deceased donor Kidney. Would you have that option as well? And, if so, certainly a different transplant center may be optimal.
I’m not sure any of my suggestions will be of any help. However, I am hoping you’ve got a few other options.
I can't work with another transplant centre cause my insurance only works with them. I found out Friday that I'm still on the list even after this "incident". So I'm in line for a deceased donor too. There's a lot of testing (mostly blood, I think it's 8 or 9 of those little tubes.) a chest x-ray, CT scan, ekg and a colonoscopy. Good luck on your testing.
Don't give up!! Don't get hopeless. Get your problem fixed and grab the next kidney!!! Try a different doctor that you will be more comfortable with and trust. I will add you to my prayers.
I can't try different Dr.'s or HD treatment centers. My insurance works with only one transplant hospital (supposedly a very good hospital based on the data) and one dialysis company. My dialysis clinic has 1 Dr and I PA. I don't really care for the Dr., but the PA is a great guy. But he's "just a PA" and has to get the Dr.'s approval for almost everything. If I want a new Dr. I would have to drive 25 miles farther to the closest HD center. I already miss enough work as it is because of treatments.
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Lost a jewel from my Crown
Spousal support during dialysis 
