Waiting for a kidney transplant

Posted by christydave @christydave, May 28, 2018

I was close to getting a transplant. Several weeks ago I had a biopsy on my pancreas. The results came back with elevated tumor markers. My concern now, no transplant. My transplant coodinater had no words of wisdom to share.
I'm really feeling hopeless at this point.
I have contacted my Nephrologist for her advice. I was also told by the Dr. that did the biopsy, that they would test more in a year. Not comfortable with that either.
I'm not sure if anyone else has had a similar experience or has advice?
Thank you so much

@jolinda

Becky,
I'm so glad you reached out. I struggled with this too. First of all being in kidney failure is exhausting, scary and sometimes lonely and overwhelming. I remember thinking, I can't ask someone for $20 let alone a kidney. I was also afraid that if people at my work found out I might get fired. Somedays when I was really down I wondered if I was worth saving. What helped me the most was letting others advocate on my behalf. I didn't feel comfortable asking for help myself but it turns out I had two friends who couldn't wait to get the word out. In fact I came to learn later that it was really hard for them to sit on the sidelines and watch me suffer so they felt very empowered and motivated by spreading the word for me. Getting updates from them really raised my spirits. Maybe your niece who clearly loves you so much can help advocate for you?
Jolinda

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You didn't come across as "breezy", just another perspective. Donors and their families are such a blessing to us all it's beyond words!!! It was such a hurdle for me to ask for anything, your food shelf comment was spot on, so tough to ask sometimes. Great info you shared, I can feel your positive energy coming through in the post.

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@beitel

I am not sure how to go about looking for a living donor. I have let friends and family know but really have not pursued it much. My niece is trying to get on the Kidney exchange program.

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@beitel,
Becky, In addition to the personal experience and information that members are sharing with you, I want to link you to the Transplant Pages. There are materials for transplant recipients as well as living donors in the Recipient Toolkit and the Living Donor Toolkit.
https://connect.mayoclinic.org/page/transplant/

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@mauraacro

@beitel tell everyone you know and have them pass along the info to the people they know. I didn't know the person I donated to but knew of her, so it was a directed donation even though she was a stranger to me. Social media has been a great resource. Sometimes it feels more comfortable to let people know through a post as it doesn't put anyone on the spot.
Find out as much as you can about how people can sign up to become a donor so if someone asks, you can immediately direct them to a link, phone # or website. It may reassure people to know that everyone they talk to and all of the donor info and tests are private, even from you.
Let people know they don't have to be young and in perfect shape. I'm 52 and am not at my "goal" anything. Also, they don't have to be a match, I didn't match the person I donated to but she didn't have any antibodies that would reject my kidney. A person can also be "your donor" through chain donation. As long as they follow through with donating a kidney (and you are transplant eligible), you are guaranteed one.
Good luck!

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Thank you @mauraacro. I was talking about this just this morning with my mom and my Nephrologist. They suggested to see about saying or doing something at Church since we are a big part of Church.

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@mauraacro, your advice is very sound. Recently, a young man in my kidney disease support group was whining about needing a kidney and what to do. He has been on dialysis for one year. In this area the wait for transplant is 8 to 10 years. He was pretty upset when I related the following ideas, as he preferred to complain than take action:
-make a bumper sticker for your car. You never know who might see it at a stoplight
-make a lapel button that goes on your shirt each time you walk out the door
-attend Donate Life events wearing a T-shirt to let people know you need a kidney
-talk about your need for a kidney to your faith community, your interest groups, your professional associations [He is a teacher]

I am a pro-active type of person, and looking for help to find a kidney takes a lot of effort!

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@beitel

I ended up in a coma a year ago, at that time they were anticipating a kidney and liver transplant. Currently my Liver is " healed" but my Kidneys still are not functioning. I am on Dialysis 3 days a week and currently on the Transplant list. This wait is driving me nuts. Very stressful and Dialysis is starting to really make me feel yucky.

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I did not have a living donor, but I want to add this to your conversation – Three Can’t Miss Posts if you’re Considering Living Organ Donation
https://connect.mayoclinic.org/newsfeed-post/three-cant-miss-posts-if-youre-considering-living-organ-donation/

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@beitel – Becky, I remember you telling me about your love for kayaking and the outdoors. And as i was sorting my recent outdoors vacation photos, I thought of you. So i want to drop in and visit.
How are you? Have you had any more outdoor adventures? Is there any updates on the search for a kidney donor?

I'm sending hugs and prayers to you and your loved ones.

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My GFR is down to 23 and l should be down to 20 in few months. My nephrologist refers to Banner as he is part of AHKD. I would like to consider Mayo Arizona as well. Suggestions? Once my referal is accepted and the testing process begins, how long until Surgey? I’m blessed that I have a number of family members as donors that are blood matches.

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@tomkrush

My GFR is down to 23 and l should be down to 20 in few months. My nephrologist refers to Banner as he is part of AHKD. I would like to consider Mayo Arizona as well. Suggestions? Once my referal is accepted and the testing process begins, how long until Surgey? I’m blessed that I have a number of family members as donors that are blood matches.

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Hi @tomkrush, welcome to Connect. You'll notice that I moved your message to an existing discussion about getting close to the time of getting a kidney transplant. I did this so you can meet others who are or were in a similar situation and can offer tips and advice. In addition to this discussion, I think you might find these helpful too:
– Waiting for an altruistic donor https://connect.mayoclinic.org/discussion/waiting-for-an-altruistic-donor/
– Pre kidney transplant https://connect.mayoclinic.org/discussion/pre-kidney-transplant/
– What's a reasonable distance for traveling for a kidney transplant? https://connect.mayoclinic.org/discussion/whats-a-reasonable-distance-for-traveling-for-a-kidney-transplant/

I'd also like to bring @nianyi @kayb @morty and @judyth. Like you Morty is also anticipating a kidney transplant soon at Mayo AZ. There are also several members who have discussed being listed at multiple centers. Fellow members, like @rosemarya and @jolinda, can help answer your questions about timing from referral, through testing to surgery. Tom you certainly are blessed that you have a number of family who could be potential donors. Here is a great blog post that outlines the play by play steps for donors, as well as a first-hand account from @mauraacro
– Countdown to Living Donor Surgery: Key Steps https://connect.mayoclinic.org/page/transplant/newsfeed/countdown-to-living-donor-surgery-key-steps/
– Kidney transplant – The Journey from the Donor's Side https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

Well, I just gave you a ton to read. Sorry about that. Keep posting your questions.

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@tomkrush

My GFR is down to 23 and l should be down to 20 in few months. My nephrologist refers to Banner as he is part of AHKD. I would like to consider Mayo Arizona as well. Suggestions? Once my referal is accepted and the testing process begins, how long until Surgey? I’m blessed that I have a number of family members as donors that are blood matches.

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@tomkrush, Hi, Tom. I got my kidney and liver from a deceased donor at Mayo Rochester. The level of care that I received was of exceptional quality and compassion, from the top ranking surgeon thru every rank of staff, and volunteer that I met during my time there.

I am happy that Colleen has already given you some excellent reading material. I want to share 2 short videos from the Transplant Pages. These 2 short videos tell about kidney transplant at Mayo. I think you will enjoy hearing it from these kidney transplant experts. https://connect.mayoclinic.org/page/transplant/tab/resource-35/

@cmael, Do you remember how long you had to wait until your surgery was scheduled?

@cleverusername, Can you share a little about your own transplant experience at Mayo Scottsdale?

@threerrr3, I am thinking of you a lot these days. I hope you have a few free minutes to squeeze one response into your schedule. What do you have to tell Tom about the process of preparing to receive a kidney from a living donor?

Tom, How far away from Mayo do you live? There is transplant housing available that I will share with you when you are ready for it.

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@rosemarya

@tomkrush, Hi, Tom. I got my kidney and liver from a deceased donor at Mayo Rochester. The level of care that I received was of exceptional quality and compassion, from the top ranking surgeon thru every rank of staff, and volunteer that I met during my time there.

I am happy that Colleen has already given you some excellent reading material. I want to share 2 short videos from the Transplant Pages. These 2 short videos tell about kidney transplant at Mayo. I think you will enjoy hearing it from these kidney transplant experts. https://connect.mayoclinic.org/page/transplant/tab/resource-35/

@cmael, Do you remember how long you had to wait until your surgery was scheduled?

@cleverusername, Can you share a little about your own transplant experience at Mayo Scottsdale?

@threerrr3, I am thinking of you a lot these days. I hope you have a few free minutes to squeeze one response into your schedule. What do you have to tell Tom about the process of preparing to receive a kidney from a living donor?

Tom, How far away from Mayo do you live? There is transplant housing available that I will share with you when you are ready for it.

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I was given a list of transplant centers in the summer of 2017 by my nephrologist and it was my choice whether to choose that or dialysis. Since I had daughters willing to be a donor, I chose transplantation. After checking with my ins and being told that I had two choices, I chose Mayo. In Sept I called Mayo and set up an evaluation appointment for Nov. After getting the go ahead and finding out my two daughters were both compatible, one of my daughters went through a 3 day evaluation in Jan and received the go ahead. It was then up to me to schedule when I wanted to do it. I wanted to wait until April because of the weather. Southern MN gets some nasty winter storms. I had my transplant April 6th, almost 11 months ago. I was so fortunate that it all went so smoothly. I did have some recovery issues, but it all worked out. I agree the doctors, nurses and staff are so knowledgeable, and caring. It is a wonderful place. I have my one yr checkup with a kidney biopsy scheduled for Apr 1-3. Except for being sick with a cold for the month of December and slipping on ice and tearing my hamstring recently, I’ve been doing really well. 🤞

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@tomkrush

My GFR is down to 23 and l should be down to 20 in few months. My nephrologist refers to Banner as he is part of AHKD. I would like to consider Mayo Arizona as well. Suggestions? Once my referal is accepted and the testing process begins, how long until Surgey? I’m blessed that I have a number of family members as donors that are blood matches.

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@tomkrush You are so fortunate you have living donors that are family members!

I’m waiting for an altruistic living donor.

My advise is to make an appointment now at The Mayo, Phoenix. You do not need to wait until your GFR is 20. I started at 24. I’m now at 18.

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@rosemarya

@tomkrush, Hi, Tom. I got my kidney and liver from a deceased donor at Mayo Rochester. The level of care that I received was of exceptional quality and compassion, from the top ranking surgeon thru every rank of staff, and volunteer that I met during my time there.

I am happy that Colleen has already given you some excellent reading material. I want to share 2 short videos from the Transplant Pages. These 2 short videos tell about kidney transplant at Mayo. I think you will enjoy hearing it from these kidney transplant experts. https://connect.mayoclinic.org/page/transplant/tab/resource-35/

@cmael, Do you remember how long you had to wait until your surgery was scheduled?

@cleverusername, Can you share a little about your own transplant experience at Mayo Scottsdale?

@threerrr3, I am thinking of you a lot these days. I hope you have a few free minutes to squeeze one response into your schedule. What do you have to tell Tom about the process of preparing to receive a kidney from a living donor?

Tom, How far away from Mayo do you live? There is transplant housing available that I will share with you when you are ready for it.

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Yes I leave for Mayo on Wednesday surgery is scheduled for Friday morning as my sister is my donor ..my sisters all signed up to get tested and they sent them out blood test that they took to there doctor and had blood drawn and sent back to mayo .. from there is they were compatible my older sister was the first to send it back and she was the first sent to mayo for testing .. a three days of test and we found out before we left she was a match . And then it was my turn .. or ours actually to choose a date to have it done .. so we are scheduled March 8 2019 the 21 year of liver transplant !! So two miracles in one day .. so soon I can tell you how everything went but if you have an other questions .. it’s a pretty easy process.. but first they have to fill out the questionnaire.. step one .. Good luck !!

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