Share Your Thoughts

You need to be a member of to add comments!



        • It must be early on from surgery to be on such a high level of tacrolimus. A Tacrolimus level of 10 may elevate your creatinine and do more harm than good. It may be time to talk to your Tx nephrologist to understand why you are being kept on such a high FK level. It also may contribute to that uneasy feeling, as it does have psychoactive side effects.

          Having to wear a mask and bed rest may be more related to your pneumonia diagnosis. that is caused by a "super-bug," difficult to cure and debilitating.

  • Can someone explain what is the meaning of sensitized versus nonsenitized and how is this related to the PRA? The second question how does the PRA differ when caculated based on a a panel of pool versus the PRA calculated for a specific donor? You expect the numbers might not be the same. For instance is it possible that your PRA as measured against a pool could be positive while if measure against a specific door to be negative and thus based on the negative number you can make the transplant ? Can someone please explain these two questions and comment. Thanks.

    • This article from UNOS may shed some light on CPRA calculations regarding recipient suitability ratings. I hope this link helps.

      UNOS info

      About CPRA - OPTN
      The OPTN is operated under contract with the U.S. Dept. of Health and Human Services by the United Network for Organ Sharing (UNOS). This Web site pr…
  • This is my first post. I had a kidney transplant from my brother in August of 2016. I had a rejection episode a few weeks after and it resolved with Thymoglibulin and high dose steroids. I have done great ever since. My husband passed away 2 months after my transplant from Ocular  Melanoma. I had been through significant marital problems with emotional abuse for 2 years prior to my transplant. I found out my husband had been having unprotected sex with numerous men. Devastating to say the least. I found out about 6 months after the transplant that I had HPV with an increased risk of vulvarand cervical cancer. I have a son who is 15 at the time who I have been trying to raise. He will be attending college in the Fall, and I am very proud. I already had bipolar depression prior to the transplant, and the steroids did not help. I believe I have developed significant PTSD from everything and I am trying to work on it. I am desperately trying to get my disability benefits extended at least until my son goes to school. Prior to my transplant I was a registered nurse working med/surgery, home health and the ER. I am so scared to go back due to the increased risk of infection. I would love to know if anyone has any experience with this and any advice. The other question I have is why Medicare benefits end after 3 years post transplant. Is this true for everyone? Is there anything that can be done to extend them? What about disability benefits? I have had COBRA insurance through my husband’s work which will end 10/19/19. Between that and Medicare I will be without insurance in 2020. Does anyone have any advice? I am terrified. The transplant center at Emory is of no help whatsoever. They do all of this stuff with great detail before you get discharged after the transplant, but 2 years later, you are on your own and no one cares. I take Cell pet, low dose Prednisone and monthly Belatacept.

    • Hi Kim, 

      First, I'd like to say I o sorry for all that you've gone through(husband) I have worked my whole life, right up till I got really sick and had to start dialysis. My work insurance ended and I had to apply for SSDI. It was nightmare, needles to say! But, I learned quickly I had to basically be my own advocate! I as well dealt with depression/PTSD my whole life. If you already haven't looked into getting a lawyer who fights for dissability/health issues, or get some good advice. please look into it. I also applied for it much earlier, And hopefully when you get it, your money is retroactive from the day you apply for your disability. I'm not sure what State your from, but go online a Google what your looking for, also go to see the Mayor of where you live. I wish you all the best of health and Good LUCK!!!

    • From experience here in Fla,yes after 3 years, you should automatically recieve in the mail a new insurance card.That if,if,you are low income individual you get Humana Medicaid or maybe another provider Medicaid.As for a fact Humana Medicaid Is GREAT! Covers everything,.However,again everyone income is different.Life is a rollercoaster ride the key is to hold on tight til it stops,it will stop.God Bless and Take Care.

    • Wow, Kim, you have had a "full plate," for quite some time now! I hesitate to advise you on insurance matters as states are not uniform in the coverage that is required to be offered.  One note is that while the ACA is still the law of the land, existing conditions will be covered. In addition to researching insurance companies, you might want to see if you qualify for help through Bristol Meyers Squibb's patient assistance program or others like it to knock down the co-pay for their Belatacept medication. The National Kidney Foundation also offers patient assistance.

      BMS assistance

      NKF assistance

      BMS Access Support® | For Patients & Caregivers
      We provide information to help navigate healthcare coverage and understand the reimbursement process for your prescribed BMS medication.
  • Hello everyone, I have not added any comments recently since 2016/17, a few months after my transplant in Sep 2016. It’s over two years since my gift of a kidney was donated to me by some lovely and loving family.This New Year I intend to thank them and hope they accept my letter. Here in the UK we are given very little information about the donor or her/his family. We can write as much as we like to the anonymous donor family about our gratitude and hand it to our transplant coordinator who will inform the donor family about our letters but it is their progertive to access our. But I am hoping they will want to read my letter and accept my gratitude. I wonder what happens in other countries where cadaver kidneys are donated anonymously,

    • Here over the pond, things are about the same, with the donating family controlling any post-donation contact, though attitudes seem to be changing and such meetings increasing. Bear in mind, there may be no family or contact could be too painful to remember for some. All we can hope for is that their selfless act provides some measure of solace for their loss.

  • I am planning to go for a kidney transplant next month. I did few tests PRA, Auto Antibodies is negative T cell X match is negative and B cell X match is also negative. HLA A, HLA B, HLA DR and HLA DQB1 mismatch are as follows 2,2,1,1. I did not understand these numbers and want do they mean. My question should I go with the transplant given these results. I am total compatible with the donor except for theses mismatch figures. Can someone explain what these numbers means and how do they impact the transplant operation.



This reply was deleted.

Welcome to our Kidney Transplant Group.

605 Members
Join Us!