My story. I had CKD 3 then Kidney failure went on dialysis over 5 years then a friend donated his kidney and I received a transplant 2020.

[ESRDRLS]

I was asked for my story. I am afraid my entire story is too long for a website loI I have a tethered spinal cord from birth but was not caught til I was 25. Had two surgeries that did nerve damage. I caused a neurogenic bladder which refluxed into my kidneys for years and was not caught. Long story I got sick and it was going into kidney failure. My doctor managed to help me maintain Ckd 3 for 15 years. I wore and indwelling foley that kept some of reflux down. I went into kidney failure and started dialysis for over 5 years. I received a transplant from a friend in 2020. Perfect match. Since I have had to removed the foley because of possible infections to the kidney and I have to us straight cath up to 8 to 10 times a day to try and keep the reflux from damaging my kidney. I have spent more time in the hospital with urinary track infections and sepsis than I have in my life. I have been treated for chronic pain due to the nerve damage and other issue and have lost most of sensation in my lower back and left left and right foot. I developed a fib and had a slow heart rate to the point I had to have a pacemaker after my transplants I have had a lot of problems with taking the immunos and protect my kidney which putting me on strong iv antibiotics. And issues with healing are scary. ( hospitals for most uti is because I had to be monitored while they took me off my Immuno meds until they found out what to use the right meds to cure the bacteria. I am am major depressed and stressed. I have a husband of 37 years that has severe COPD and on oxygen. I have two step daughters and one son. I am on the esrd Medicare but you only keep it for 36 months after a transplant. I have been told I can apply for transplant Medicare and keep my Medicare. If I was 65 I would not have an issue. I called ssa and spoke with a specialist and she told me if get notice of Medicare ending I call the ssa specialist and the send in proof I had a transplant. The Medicare changes over to a transplant program. Does anyone else know about that. Anyways I am grateful for my kidney but it can be really hard. I am desp trying to prevent any problems.

[WYOAnne NKF Ambassador]

Talk with the social worker at your transplant center. She/he can provide you with the information regarding Medicare.