Share Your Thoughts

You need to be a member of to add comments!




    Pass this to Everyone..

    Adenovirus & Chuck E Cheese, With History of Poor Sanitization & Cleaning. Oct 7th of 2018 the Nightmare Began.Pembroke Pines Chuck E Chesse.


  • 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 

    • As for myself a 4 year kidney miracle, per my surgeon a young doctor cool and laid back,with great vision Dr.Michael J.Goldstein.Jackson Memorial Hospital 11/25/2014,.."You don't need to wear mask,however you MUST wash your hands as many times as possible" and yes avoid sick individuals.".It worked for me til I went to Chuck E Cheese and Kids.Ok Good Luck.P.S. Creatinine will fluctuate,.DRINK 2-3 LITERS WATER HYDRATION IS KEY TO LOW CREATININE.

    • 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.

      • I am on prograf 2 mg two times with tac level around 10 ..... I don’t know I have yet not been able to get out of the fear .... I am inside a room most of the time ... Developed social anxiety as well 

        • 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.

    • 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.

This reply was deleted.

Welcome to our Kidney Transplant Group.

593 Members
Join Us!