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  • Hello I had my transplant 10 months ago and I am in bed rest since then ... I want to know can we do jobs ... it is important to wear masks now ... wearing mask in jobs may not be allowed so I am getting a bit hesitant .... literally having phobia of getting unwell again ... recently creatinine went up from 1 to 1.4 in 15 days and was diagnosed with kiebsielia pneumonia 

    • It is important to remember that your immune system is suppressed, not eliminated. Through good routines (timely medication dosing and blood work, frequent handwashing, avoiding sources of illness/infection and other tips you will learn here and from your Tx team,) you should be able to live a mostly normal life. You should report to your Tx team whenever you feel different (fever, soreness in the throat, sudden weight gain/loss, changes in urine output, color or odor.) Often blood work will reveal issues before you feel anything. 

      The increasing time you live without a health issue will make that uneasy feeling fade. The need to wear a mask will lessen as your dosages of immune suppression meds are reduced. We cannot live in a sterile bubble, the goal is to live a life.

  • 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.

    • 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.

    Thanks

     

  • Hi, I am Nuthan .  Just joined this group  I had kidney transplant on 15 Oct 2017 completed 14 months Iam doing well upto now no problem and my creatine was 0.9 

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