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christydave
@christydave

Posts: 2
Joined: May 09, 2018

Waiting for a kidney transplant

Posted by @christydave, Mon, May 28 6:09pm

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

Liked by cehunt57

REPLY

@christydave, Wow, this must be a confusing situation for you. I am puzzled as to why you were given no additional information! If you are a transplant patient, you should be having routine check-ups every 3 months. I do not believe that it is the transplant coordinator that you need to communicate with, but a doctor – the transplant nephrologist. He/she is the only one who is qualified to give you answers about what is involved here.

Here is what happened to me regarding my liver. Lab tests came back with elevated tumor markings, the tests were repeated with same result. So I was scheduled for a procedure to get tissue for a biopsy. Unfortunately, the doctor could not get samples due to the internal blockages. He only told us that he could not get samples and was very disappointed, along with me and my husband. It was my liver transplant doctor who gave me the results and explained the consequences and the potential outcomes. I had to be deactivated from the active transplant list until the biopsy could be obtained and a definite diagnosis was made. My transplant doctor made arrangements for me to be tested at Mayo in Rochester.

My advice is to talk to the transplant doctor. Take someone with you who can be your extra set of ears and to support you if needed. Remember you can also get a second opinion for this.
Keep in touch. Has your Nephrologist contacted you yet? What did you learn?
Rosemary

@christydave, I want to followup and to introduce you to some of our members who are experienced in pancreas issues. I think they will be able to share their thoughts. Have you been able to see your nephrologist, yet? How can we help you?

@cehunt57, @2011panc & @donnan, I want to introduce you to christydave. Do you have any thoughts or experience that might be helpful?

Rosemary

I am almost 2 years post pancreas transplant. Please ask as many questions that you have

@christydave @rosemarya Thank you for referring me Rosemary. Christy, your post only raises questions for me. I received my pancreas transplant at Mayo in Rochester, MN, in 2011. What I can put together is that you need a kidney transplant but not why. e.g., what caused your kidney to fail? Mine are failing due to long-term unmanageable diabetes and transplant med related to a pancreas transplant. I suspect that the pancreas biopsy was attempted because of some lab results and as a part of the workup to clear you for the kidney transplant. The pancreas and kidney are closely related to each other and many times transplanted together or the kidney first and then the pancreas.

I do not know where you were being worked up for a transplant, but will proceed as if you were using Mayo Clinic.

Knowing you have tumor markers on your pancreas must be frightening and I am sure the medical community wants to assure that 1) they are not cancerous and 2) that you do not need both a kidney and pancreas, which would be easier on you than doing one and then the other. Additionally, Mayo is on high alert for cancer and doing a great amount of research and treatment of cancers. They would check very carefully and having cancer might affect how they proceed with your transplant and treatment.

I can assure you that Mayo will treat you for all of your conditions, whatever they may be, at the same time. However, there may come a time when you must choose between two risks and determine for yourself which direction you wish to take. For example, I have excess skin I would like to have removed following weight loss because it is impossible to keep the skin under the skin flap dry. I have to choose whether to risk the skin surgery versus daily measures to maintain skin health under the flap. While the daily measures are tiresome and the extra skin unattractive, I am not ready to risk damaging my new pancreas or additional damage to my kidneys.

It was the biopsy physician that said they would followup in a year. To me that means that there are markers, but nothing to actively treat. Similar to a mole that has been removed, it may be benign (meaning no abnormalities), precancerous (cells that may become cancer but are not yet), or cancerous (which may have been completely contained in the mole or require additional testing). As Rosemary suggested, I would contact your transplant physician for a better understanding of your current situation. If you have not been notified about the possibility or fact of removal from the kidney transplant list, you are still on track for a transplant.

Another consideration, are you on dialysis? If so, please contact the physician following your dialysis with your questions.

I understand your fear and anxiety at the moment and wish you well. Please keep us informed of your status.

@2011panc LOL It never ceases to amaze me how one thought leads to another. It is my norm to not even know I have a question until some thought turns the light on in my head.

@rosemarya

@christydave, I want to followup and to introduce you to some of our members who are experienced in pancreas issues. I think they will be able to share their thoughts. Have you been able to see your nephrologist, yet? How can we help you?

@cehunt57, @2011panc & @donnan, I want to introduce you to christydave. Do you have any thoughts or experience that might be helpful?

Rosemary

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@rosemarya thank you for the introduction to @christydave. I also have questions like those of @2011panc. I understand that you are anticipating a kidney transplant but I don’t know the circumstances behind the need or how far along you are in the pretransplant process. Now there are concerns about your pancreas that led to a biopsy. It sounds like you need some explanation about the biopsy findings and prognosis plus information about how that effects your kidney situation and future transplant. I don’t know where your medical team is or what all it consists of (nephrology, endocrinology, oncology etc?) but you need to find out what the priority is for your treatment. Sometimes when you are listed for transplant something comes up such as a need for additional testing or a condition that needs to be treated first before transplant can proceed. When that happens your listing may be changed from active to inactive which means you are still waiting for transplant and accruing time but they are not actively looking for a donor match for you. Your coordinator &/or the lead physician of your medical team should be able to explain these things and sort out these aspects. If you have asked and are not getting any answers you may need to schedule an appointment with the provider that is most familiar with your history and go in with a list of your questions and concerns.

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.

@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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@beitel so thankful your liver is ok. Prayers for you regarding your kidney situation. Are you looking for a living donor? It could be a useful thing to do while you endure the wait.

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.

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

@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!

@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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@jolinda Thank you for reminding me about it being hard to ask for things. I don't know why it didn't occur to me because I may feel the same way. I can't imagine how hard that would be.
Finding a few people to advocate is a great idea. @beitel, The more people that know about organ donation, the better. Even if it's not something someone can do right now for you, they may hear about it from one of your friends or family members and decide to donate to someone at a later date.
I realize that's easy for me to say, I don't need a kidney. The example that comes to mind is it's easier for me to tell people about the food pantry in our neighborhood, who it serves and how to keep it stocked than to say I don't always have money at the end of the month to feed my family and if you could grab a few extra cans of soup for me when you shop, that would be great. I can easily do things for the greater good but I know it's very difficult to ask for help. I'm sorry I sounded so breezy about, "just tell everyone"

@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.

@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/

@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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