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mrslnel
@mrslnel

Posts: 6
Joined: Apr 18, 2017

Question about changing Transplant Clinics.

Posted by @mrslnel, Apr 18, 2017

Looking for some help and advice on changing from one transplant center to another.I have been through testing and was considered to be a an recipient candidate. I am on the kidney transplant waiting list. I am not feeling supported at my current transplant clinic. I am interested in changing to another transplant center. Mayo in particular. I always wanted to be with Mayo, but my provider referred me to this other clinic. My health insurance will cover the the change to Mayo. The problem, do I need to start the whole process over and be re-evaluated or will Mayo just accept transferred medial records and then meet with me? Will this affect my status on the waiting list? What happens to anyone who may be in the process of being tested for me? I have tried to ask my transplant coordinator, but she just tells me that she only talks to me when there is a donor and she makes the call. She knows nothing about potential donors or anything else. I do not know who to turn to for answers. I love CONNECT as my clinic has nothing like this to support patients. Uncertain what to do next. Any suggestions, answers or help would be greatly appreciated.

REPLY

Hi, @mrslnel, and welcome to Mayo Connect. I am a liver/kidney transplant recipient and I want to provide you with two links that might be helpful. As a volunteer, I am not qualified to answer your questions. However, I will provide you with some helpful information.

Here is the webinar from early April. It featured Mayo Clinic transplant experts David Douglas, M.D., chair of the Transplant Center at Mayo Clinic’s campus in Phoenix, Ariz., and Beverly Hansen, M.S.W., L.M.S.W., providing their best tips for navigating the journey to transplantation. If my memory is working correctly, I believe that some of these very same issues were mentioned during the discussion or in the question and answer segment.
https://connect.mayoclinic.org/discussion/transplant-101-preparing-for-your-journey/
http://mayocl.in/2bbdA01

Here is the link to Mayo Transplant Department. You will find detailed information about Mayo’s Transplant Center as well as contact information so that you can talk to them directly.
http://mayocl.in/2oT4lcg

I am also going to invite @kequick and @keggebraaten for their input.

@mrslnel, I hope that you receive the information that will lead you to your successful transplant. Come back here with any question or to chat.
anytime you want.
Rosemary

Thank you for the resources. I am unable to find the webinar from early April on the link you sent. Do you have a direct link? I am sure they will be very helpful once I am able to find them. I will be back. So many decisions to make.

@mrslnel, thank you for your questions. The resources @rosemarya sent are a great place to start for more information about how to choose a transplant center and preparing for your transplant journey. If you are looking to transfer your care to Mayo Clinic, you definitely don’t need to start over. Our doctors will review your medical history and let you know if there are any tests you will need to repeat when you come to visit us. Patients are required to travel to the transplant center to meet the transplant team before they are listed at that center, so you will need to come to Mayo if you choose to be listed here. Your current status on the list will not be affected. If you are currently listed, and the plan is to list you at Mayo Clinic, your listing can be transferred to us quite easily. As for your donors, the doctors would need to see what types of testing and evaluation they have had already, and we would let them know if they need to do anything further at Mayo Clinic. We have a donor team who can support them in their testing and donation to you.

We are here to support you in any way we can. Your first step would be to contact our kidney team at whichever Mayo location you wish. You can find that information here: http://www.mayoclinic.org/departments-centers/kidney-transplant/contact-us/occ-20209485. The teams would gather your information and can also schedule that evaluation appointment when you are ready to do so. I am also available via email or Connect if you have any further questions for us. My email is transplant-rst@mayo.edu.

Best of luck to you in your transplant journey. We hope to see you back on Connect too!
– Kristin

@mrslnel

Thank you for the resources. I am unable to find the webinar from early April on the link you sent. Do you have a direct link? I am sure they will be very helpful once I am able to find them. I will be back. So many decisions to make.

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@mrslnel, You should be able to get to the recorded webinar by clicking on this link. Then click on the screen to view. I was recorded live, and you will also see some of the questions on the right side of the screen.

https://connect.mayoclinic.org/discussion/transplant-101-preparing-for-your-journey/

Please let me know if this works.
Rosemary

I had a pancreas transplant nearly 12 years ago at another center. It was great but the support and follow up over the past 11 years gradually declined. Now I need a kidney transplant. I was evaluated and accepted for transplant at both the previous center and at Mayo. Insurance covered both and told me I had the right to choose. Mayo reviewed and accepted some of the tests and records from the previous center but they also found some other things that weren’t even considered by the previous center. After both evaluations were complete I felt that Mayo was more thorough, trustworthy and supportive than the other center. The pretransplant coordinator at Mayo gave me information and helped me transfer my waiting time (UNOS) to Mayo and gave me contact names, numbers and online links for me to pass on to potential living donors. I’m doing everything I know of to spread the word about my need for a kidney donor, to keep busy & healthy while I wait. I’m so looking forward to my kidney transplant with the help of Mayo.

Thank you. Good to know. Just feeling unsupported in the cities and that I may get more support in Rochester. Apparently, I have several people who have inquired about donating and do qualify. I would hate to lose a living donor in the process of changing clinics. My insurance covers both, but my current clinic is no longer considered an COE. I was grandfathered in because I was still being evaluated when the change occurred. Not quite sure what to do.

@mrslnel

Thank you. Good to know. Just feeling unsupported in the cities and that I may get more support in Rochester. Apparently, I have several people who have inquired about donating and do qualify. I would hate to lose a living donor in the process of changing clinics. My insurance covers both, but my current clinic is no longer considered an COE. I was grandfathered in because I was still being evaluated when the change occurred. Not quite sure what to do.

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mrsnlel you mention feeling unsupported in the cities (MN Twin Cities?) and that you may get more support in Rochester. I have a feeling that your current clinic and my previous transplant center are one in the same. When I started my kidney transplant journey I started with the previous center because that is what I knew and was familiar with (but wasn’t really satisfied). I got the idea to go to Mayo and after checking with my insurance regarding coverage I found out that both facilities were covered but that my previous transplant center had lost their designation as a center of excellence (COE ?). I went to Mayo in Rochester, had my evaluation and thankfully was approved and accepted. I have complete confidence in their evaluation, especially compared to my previous transplant center. I forgot to mention that my father-in-law had a kidney transplant and my daughter was his living kidney donor. It was 14 years ago at the same “cities” transplant center that I have been at. If I knew then what I know now I might have steered the project toward Mayo in Rochester. You said that you have several people inquiring about donating for you that qualify. That is fantastic. I have had 3 that I know of in the past year. I referred them to Mayo. Sadly, they were ruled out but with the trust I have in Mayo I’m sure it must be for the best. I recommend you at least meet the Mayo team before you make a decision on what to do. Think of it as a second opinion. I’m glad I did that and chose Mayo.

@mrslnel

Thank you. Good to know. Just feeling unsupported in the cities and that I may get more support in Rochester. Apparently, I have several people who have inquired about donating and do qualify. I would hate to lose a living donor in the process of changing clinics. My insurance covers both, but my current clinic is no longer considered an COE. I was grandfathered in because I was still being evaluated when the change occurred. Not quite sure what to do.

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I think you are right. Only 1 of the 3 in Mpls is not a COE. My husband was told there have been several tested, but we do not have any names or information. That is where I feel the risk of losing them comes in. I feel unsupported because once I was listed it seems that I really do not have a transplant coordinator. I talked to her once and she basically told me that she will not be in contact with me again until she has a donor for me. I was told to start looking for a living donor. No help or suggestions on how to do that. I have done a lot of research so that my husband and I could work together to get a campaign going. The only reason my husband was called was because he did not qualify as a donor. Head is spinning. I meet with my nephrologist next week and I will talk to him about making a change. Please private message me. I would love to talk to you privately about this if you are interested.

@mrslnel

Thank you. Good to know. Just feeling unsupported in the cities and that I may get more support in Rochester. Apparently, I have several people who have inquired about donating and do qualify. I would hate to lose a living donor in the process of changing clinics. My insurance covers both, but my current clinic is no longer considered an COE. I was grandfathered in because I was still being evaluated when the change occurred. Not quite sure what to do.

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Hi @mrslnel, you’ll notice I removed your email from your message on the piblic forum. We encourage members to use the private messaging function to share personal information. We want to avoid your getting unwanted spam. I agree that some things are better shared privately. However i also want to point out the benefits of using the public forum for information sharing.
All the best
Colleen

Thank you for your concern. Being new to this page I am not aware of using the private messaging. The email given was the one I use specifically to connect privately in regards to my search for a kidney. It is already on business cards, banners, my facebook page and many other social media areas. At this time SPAM is the least of my worries. Please let me know how to use private messaging.

@mrslnel

Thank you for your concern. Being new to this page I am not aware of using the private messaging. The email given was the one I use specifically to connect privately in regards to my search for a kidney. It is already on business cards, banners, my facebook page and many other social media areas. At this time SPAM is the least of my worries. Please let me know how to use private messaging.

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Here’s how to send a private message:
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

Thank you!!!

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