Mayo Clinic Connect
Has anyone heard of an artificial kidney being made?
Liked by sparker15
Also check out miromatrix.com/kidney – basically test tube kidneys (but not really).
Liked by kamama94
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@2gallonhabit, Welcome to Connect. I am a liver and kidney transplant recipient and I was anxious to check out the information that you have included. Thank you for this information. I just visited the "ABOUT" section, and I would encourage anyone with even a teeny curiosity to take a peak at it and to view the video.
2gallonhabit, How did you discover this information? Are you a kidney patient? How can we support you?
Liked by Ginger, Volunteer Mentor
Hi Rosemary. I'm Stage 4 PKD and do a lot of research. I have both a blog and a Twitter account pretty much dedicated to all things pkd, ckd and tolvaptan/jynarque. Would you know if may has any in person support groups? I live fairly close to the Rochester clinic.
@2gallonhabit, I found a Transplant support group – (I do not know if it is open to anyone, or for patients only. I have included the phone contact information.) The solid organ transplant support group is an open group for pre- and post-transplant patients and their caregivers that meets every week.
4 to 5 p.m.
Mayo Clinic Hospital, Saint Marys Campus
Mary Brigh Building, Conference Room 4-510
Contact: Danielle K. Peabody, L.I.C.S.W., M.S.W., at 507-284-6658
I have located the following discussions in the Transplant Group. I invite you to meet others who have experience with PKD.
-PKD kidneys removed at time of transplant
-Liver Cysts with PKD
@2gallonhabit, Do you expect to be moving toward a kidney transplant?
Liked by Colleen Young, Connect Director
@kathleenla, @gregsr, @kamama94, @sissieann, @marvinjsturing, @rans,
How are you doing?
Some of you mentioned your involvement with the Kidney Project. What is happening to date? How is it going so far?
Here is a link that @2gallonhabit has recently shared from a biotechnology company engaged in the development of fully biological human organs with the goal of solving the chronic shortage of transplantable organs. I think you will find it interesting.
I am amazed by the possibilities for the future. Any thoughts?
@rosemarya, feeling quite well and energetic though I have no idea what my next labs will say.
Bioengineering kidney tissue or an entire kidney will be in the near future, though probably not near enough for some of us. I'm still looking at eventual dialysis but am trying to postpone it as long as possible with proper diet, rest, appropriate fluids.
Neph wants me to have an AV graft sooner rather than later, 2nd opinion neph disagrees, so far nobody has decided anything. Or if they have they forgot to tell me.
Getting info from my neph is like pulling teeth. Sometimes I wait a couple of weeks for a less-than-satisfactory partial answer. Since I cannot travel and have few insurance options, my current neph is basically the only one I can access. It's a bummer but I'm coping.
Currently working on diabetic and kidney friendly Native American ingredients recipe collection and having lots of fun. "Cooking Cherokee" literally is in my DNA, I just have eliminated all meat from my diet and from the recipes. Other than that, they're authentic.
How are YOU?
Liked by Colleen Young, Connect Director, JK, alumni mentor, marvinjsturing
I've talked to my nephrologist about the mechanical kidney being developed in California. She described it as a miniaturized dialysis machine that is implanted in your body. This new one from Miromatrix really fascinates me – a transplant with no need for anti-rejection drugs! Not sure if any of this will be ready for me. I was just approved this week by Mayo to be placed on the active list at UNOS. Waiting now for my insurance company to approve it. My sister is going to Mayo next month to see if she can donate.
Liked by Rosemary, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, JK, alumni mentor, kamama94
@marvinjsturing, wishing you luck, blessings and wellness! Keep us posted.
Liked by Rosemary, Volunteer Mentor, Kanaaz Pereira, Connect Moderator, marvinjsturing
@marvinjsturing A mechanical kidney! Wow, that sounds like a great step forward. As one who is on immunosuppressants after my liver transplant, I know how great it would be to not have to be.
I hope your sister will be approved and that you can move forward. If you have a living donor do you still have to wait to reach a certain level of lack of function?
For those of you who are familiar with living donors for livers, is there a certain MELD that has to be reached before you can get that transplant? I presume insurance will not pay for it until you do reach a level of malfunction.
Liked by Rosemary, Volunteer Mentor
Here's a site about the mechanical kidney: https://pharm.ucsf.edu/kidney
Liked by trishanna
@contentandwell JK, kidney function is measured by GFR. You have to have a GFR of 20 or below to qualify for a transplant. In the last 4 years, my GFR has ranged from 10 to 17. When I had my initial evaluation I asked Mayo about the insurance I had and was told that they typically cover the transplant so I'm hoping things go through quickly.
Liked by Rosemary, Volunteer Mentor, JK, alumni mentor
@marvinjsturing please keep us updated on your progress. It’s such an exciting and also sort of scary time when you are finally about to get a transplant. By the time got the call my husband and I were excited but amazingly calm. I had reached a point where it was not really scary because I was pretty miserable, and my husband had not told me, but he and my sister thought they were going to lose me. I never thought of it like that, I just wondered how I was going to deal with my misery until my transplant time came. I really hope your donor works out for you.
Liked by Rosemary, Volunteer Mentor, marvinjsturing
@kamama94, Thank you for asking me how I am. I had my annual checkup for my 10th year post liver/kidney transplant in early May.. My organs are from a deceased donor. I had a simultaneous transplant – 1 deceased donor, 1 surgery. I am excited to share that they are both doing extremely well. My doctors told me to keep doing what I am doing to take care of my organs. And that includes routine labs and taking my antirejection medications.
I hope that you have good lab results coming up. You deserve it because of your dedication to your diet. Your self determination is admirable and an inspiration. I enjoy reading your posts.
Liked by trishanna, JK, alumni mentor, kamama94
How nice of you.
@contentandwell @retiredteacher @rosemarya @kamama94 @gaylea1 @colleenyoung @hopeful33250 @gingerw @cehunt57 I don't remember who all is following my story. Latest update: both Mayo and my insurance company have approved my kidney transplant and I am now on the UNOS list as an active candidate. My sister was trying to get approved to be a donor. She was scheduled for her test in mid June but had to reschedule because she was sick. When her sickness did not go away, she finally went to the doctor again. She had a collapsed lung and an enlarged spleen. Still waiting for test results, but doctors think she has some form of lymphoma. Should know by Wednesday. There are a lot of prayers being said for my sister right now.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, JK, alumni mentor
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