Recert

[Calmserenity]

How often do you need a full work up to remain on kidney transplant list if you have been already approved? I understand it may vary by hospital but looking for an average.

[Bassetmommer]

my Medical Center requires annual work up. Heart, eyes, mammogram, dental, and blood work. Colonoscopy and gyno every three years, And then a physical evaluation with the surgeon and social work annually.

[Eyak1971]

Annually. Sometimes one hospital will accept testing from another.

[Beachgirl32]

yes I have to go for testing once a year like I just did an echo they found a problem so I’m inactive right now but when you are inactive you still incur the time

[CKD2-4]

my hospital requires annual with surgeon and nephrologist. My Social worker keeps track of the testing and reminds when a gynecologist visit, urologist or gastroenterologist visit is due. I keep up on my vaccinations and routine Dr visits are due.

[ShyeLoverDoctor]

I was only on one transplant center list for a year and 9 months pre-emptive time.. I made sure to keep up with mammogram, etc. They didn’t call me in for anything after a year and I don’t recall them doing any extra blood work. However they are UCLA and I have a UCLA doctor I was seeing so that may have helped. Ongoing blood testing was done in the UCLA system. But no EKG, stress test.

As you may know, any time you are listed at another center, your wait time always starts from first day of dialysis. I was added to the list at the Mayo Clinic in Phoenix, AZ on April 28 and received a kidney on June 11, less than two months later. You do not have to live in AZ to be listed there. They told me I would wait 2-3 years.

Pre-emptive time in case anyone wasn’t aware, is time you were listed for transplant but not yet on dialysis. You can transfer that bonus time to any center, but you can only have it at one center at a time. I kept my 9 months’ pre-emptive time at UCLA since the wait list was about 4 years, I got my kidney at Mayo after 11 months and 3 weeks on dialysis.

Keep your go-bags packed, you never know when you will get The Call. I didn’t have a go-bag packed but my caregiver did. It was July, hot here in Los Angeles, and over 100 in Phoenix. For some reason all I packed was jeans that day. Duh. My sister had to go and buy me dresses to wear. My caregiver on the other hand, had his go-bag packed which was funny. They called me at 7:30 am and asked if I could be there by 2 pm. The kidney was flown in at 5 pm and I was operated on at 5:30 pm. I had dialysis the first week after transplant, then the kidney started working. I am 54 and had a younger donor. I am very, very lucky and I know it. I think of my donor almost every day. I wrote the family but never heard back which is common.

[Herkidney in reply to ShyeLoverDoctor]

congratulations on your transplant!!

[ShyeLoverDoctor in reply to Herkidney]

Thank you. It hasn’t been easy but I feel so lucky.

[Herkidney]

My transplant center required an annual evaluation. I received my living donor transplant right around the year mark from when I was placed on the list, so there was no need for a re-evaluation at that time. Best of luck to you!

[bluekidney]

Like you mentioned it depends on the transplant center and your overall health as well. I was pretty healthy when I was listed. My transplant team only requested a release from my urologist as my kidney disease stemmed from kidney stones. No other follow up testing besides the first evaluation testing they performed themselves. I received a blood kit two weeks later from them before starting dialysis so I got it drawn at my nephrologist office but I got a call from my transplant coordinator asking me not to send blood samples until they requested them which would be closer to my transplant date which they said would be 8 years later. My dialysis center would tell me to follow up with the center to make sure I was still active because everybody else would need to send blood draws at least once a quarter. I never did need to send blood samples nor go to annual testing. I did make sure to call them at least once a year though. On my fourth year they said my time for transplant was drawing closer so I did my first annual evaluation December 2020 and received my transplant 7 months later. I was on the transplant list exactly 5 years to the day.

[Blessed06]

Mine was annually. I was on dialysis so monthly labs were done. Compliance with dialysis and annual assessments was required to stay active on list. Good luck