I am getting more and more frustrated trying to get accepted by Mayo in Phoenix. My nephrologist referred me there 5 Months ago and I still have not received a call to get things going. I have been on dialysis 3.5 years and am listed at a hospital in Denver, CO. However the list for a kidney in CO is up to 7 years so I am trying to also get listed at Mayo.
I read online that Mayo gives preferential care to patients with private insurance. I am on Medicare with a Supplement. Does anyone have experience with this? I have received a few form letters but no call to set up the first steps. I call monthly to follow up and still no call back. I am healthy and a great transplant candidate. I am 63 years old. Could this be this issue? Any feedback is welcome!
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BeachLove
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My wife recently got referred to Mayo, Phoenix. It was quick. Our experience have been nothing but pleasant so far. We are in California and have insurance through her employer. But she was forced to have Medicare plan A because of this disability. So, she has both now. However, I do not think type of insurance should matter. My wife is in her 40s and she is healthy too except her kidneys. She has been on dialysis for almost 3 years now.
It may be worth asking them if any paperwork or information is missing from your referral. They were very helpful in our case.
I think your thoughts may be correct. Age and money are considered in transplantation but are not usually discussed by centers to avoid negative feedback. I had medicare and private insurance when I originally listed with one center and when I changed jobs my insurance changed but I still had medicare. I was dropped from the list until I could still verify my new insurance would confirm payment for a transplant. Previously I been denied listing at another center due to age but they never really said it out loud. They did as you experienced just ignored my requests. I did eventually receive a transplant from a local center but even that surgeon was negative about my transplant original listing. But I had been on the list for 5 years. The terrible irony of all this is that thousands of donor kidneys are waisted each year due to a antiquated dispersement system. If they would only update their system many more lives would be saved each and fewer people would be denied. Spending less time on worrying about favorable stats and more time saving lives should be their incentive.
Thank you and I so agree!! 17 people die daily waiting. It is a huge public education issue and government incentives need to be offered more for living donors.
Keep calling and ask what the hold up is!!! I had to wait 3 months for my first evaluation appointment. Who are you calling exactly? You need to call their transplant department, 480-342-1010. Are you calling the main hospital? Or the nephrology department?
Your insurance has to approve before you can get a first appointment. Please speak to the social worker at your dialysis center right away do not waste another day. The social worker at your dialysis center (or if you’re doing home hemo there must be someone supervising your case) need to help you. That is their job! You can also speak to whoever handles your insurance at the dialysis place. Or call Medicare. I don’t know. But do not passively wait. You have to make this happen.
DO not call monthly. This is life and death, patients with kidney failure, as a whole, live longer and healthier lives than patients on dialysis. Of course, there are some exceptions. Seriously, I would make you sure you are calling the transplant office.
I’m going to do you a favor and message my transplant coordinator and ask her and will re-post.
Get the app and sign up for their health portal. ALL appointments, contacts with the nurse, etc, will appear there.
I started the evaluation process in December of 2022. Added to their list on April 28th, 2023. I received a deceased donor kidney on June 11, 2023. Every center you get listed at, wait time starts on first day of dialysis. I was only on dialysis 11 months and 3 weeks.
Everything you said was great but.... wait time does not depend on dialysis. My time was started before I was on dialysis and there are some people who never get on dialysis. It all depends on the center. My time started when I was approved for transplant.
Yes you are correct - IF you were added to the list before dialysis, that time is called pre-emptive time. It adds to your wait time. You are able to transfer it anywhere, but can only have it at one center at a time.
Believe me, I wanted a pre-emptive transplant, from my sister, 1 in 4 chance of perfect match. She quit testing before finishing, felt the transplant center only wanted kidney and didn’t care about her. Her urologist recommended against it. Turns out she had a medical issue I was unaware of. Still I wish she had finished the testing and heard what transplant doctors had to say about her condition.
My point was, your wait time does not start at when you were listed at that center specifically, for those who did not know, you don’t “start over”.
Many people do not realize you are eligible for the list once GFR drops below 20. I was listed before start of dialysis too. I had 9 months’ preemptive time. My nephrologist told me, Oh, no, it’s far too soon to be listed, even though my GFR was 16. Thankfully, I didn’t listen to him, I listened to a nurse who said get listed now and start racking up wait time.
Many people did not get listed until after they started dialysis. The point is, your time does not begin at when you were listed at that center specifically.
Some centers do ABO Incompatable transplants. I’m blood type B, which 12% of population has, so usually a long wait time, 8 years at my first center. However people with blood type B can accept certain type A kidneys (don’t ask me to explain). The wait for that at my original center was 4 years.
With an ABO incompatible transplant, there is a higher risk of complications and death. I didn’t care, I wanted off dialysis, so I agreed. That’s one reason I got a kidney fast.
I had no antibodies toward anyone else, since I had never been pregnant, never had a blood transfusion, or previous transplant. I only matched 2 of the 7 antigens of the donor.
You can be on the list and turn down any kidney they offer, and not lose your place on the list. However that doesn’t guarantee you’ll get another offer immediately, You may end up waiting years, it all depends on when a match comes up for you.
Not all kidneys are the same. Each has a score called the KDPI, kidney donor profile index. This applies to the average length of time the kidney is expected to last. Lower is better. Many younger people will wait for a score of 30% to 40%. I took one with 50%. You can agree to take a higher KDPI score. The doctors advised against it, since I’m “young” (age 53 when listed). However if I was 65, 70, you might want a higher KDPI even though it may only last a 3- 5 years. The KDPI score is influenced by many things - age of the donor, if they engaged in riskier behavior, etc.
You can accept a kidney that has hepatitis C. It’s curable, they give medicine immediately. and it’s cured in one month. It will cut your wait time drastically. Kidneys that are HepC positive are usually from younger donors who have very healthy kidneys. Fewer HepC kidneys come along nowadays since it is curable.
Thank you for your support and sense of urgency! I have been calling the correct number. I finally found out yesterday that my Medicare was approved 7/18. They show in their system that someone called me to set up the phone health interview on 8/1. However I checked my phone and there was no missed call and no message from them. My referral went in early March.
As urgent as it is to us, the process of getting a transplant moves slowly. When I applied at Mayo, it was a 3 month wait to get an in-person evaluation. When I applied at Florida, it was a 5 month wait.
Mayo sometimes has cancellations if you’re available to go last minute.
You can request an urgent exception for dialysis to get your treatments done elsewhere. Usually it takes at least a month of paperwork to get treatment at a different center, Mayo refers to US Renal Care and they will set up your dialysis there for you if you are being evaluated there.
Yes, once in while they would tell me, “We tried to reach you but were unable” when my phone never rang. Set yourself up with an account in their patient portal right away. Appointments will appear there. No one is going to call you for those, once you get started. You must check the portal.
Thank you! Portal set up and Finally after 5 months I had my medical intake over the phone. Again, I had to call them! They said they have 1900 patients in que now? They said they will schedule all the testing and let me know when that is next week so fingers crossed!
I understand your frustration! I was a Mayo Phx patient (i.e., seeing a Mayo nephrologist for several years) before my kidneys got down to 20%. He referred me for a transplant in February 2021 and my first appt. in the plethora of transplant appts. was late December 2021. I was 66 in July 2022 when the surgery took place. I had private insurance but I don’t think insurance is an issue. I do know that Mayo does not accept Medicare Advantage plans but regular Medicare is not a problem. Keep checking in but don’t get discouraged. It takes time (something I didn’t expect either, especially as an established May patient). Good luck!
I belive the poster was talking about why she didn’t get on the list. Once you are on the list, wait time depends on blood type, how sick you are, other things.
You can move up and down on the list depending on who gets added. Children are first in line and also people under 40 sometimes are given preference.
How do I know this? Because I talked to my transplant coordinator. I called her every few months. She said “You’re always on my mind.” No, this is did get me a kidney faster. This was at my first center. She said once, a kidney came up last weekend but you were between 35 and 50 on the list that day.
She explained the process in great detail for me.
The kidney gets shopped around to various transplant centers in that area.
Your transplant center, of course, knows where you live, and will make offers based on how long it will take you to get there. Rarely do you get a call that says “Get here right now, you only have two hours.” They usually know long before they get the kidney that it is coming.
You typically have 4 to 6 hours or even 8. I was called at 7:30 AM and told I needed to be there by 2 PM. The kidney was flown in at 5 PM and they operated at 5:30 PM. Even if you go, you may be leaving without a kidney. They call back up people in case the first person doesn’t make it. Also, the surgeon has to look it over and be sure they’re happy with how it looks.
I believe most if not all (not 100% sure) centers require you be vaccinated against Covid-19 before they will put you on their list . Stay up to date on your boosters, people. They have been taking kidneys from covid-19 positive donors for years. I accepted a covid-19 positive kidney after some consideration. I’ve never had covid-19.
I think your information regarding process is accurate, but the Poster questioned if her insurance (Medicare) and age(63) were against her and preventing her from getting on list or receiving transplant.. I don't believe it is
You're right, in our experience. My husband has Medicare and a United Supplement. Although we can't speak for Mayo Phoenix, both of our centers seemed relieved, actually, that he had had those coverages. Medicare is known to be reliable. And my hubby received his transplant at age 71. Something else seems to be in play with the original poster and Mayo Phoenix.
Each transplant center is different- even Mayo. Several years ago I went to Mayo Jacksonville to be screened as a possible kidney donor for my son. We live in the Pa.- NJ area. I was turned down by Mayo Jacksonville. I got a second opinion from Mayo Rochester and they accepted me. I donated my kidney at Mayo Rochester and my son received a kidney transplant there too over 2 years ago and we have no problems, You need to go to Mayo Rochester for another opinion!
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