Living Donor Process

Posted by ek101085 @ek101085, Apr 11, 2019

Hello,

I was wondering if anyone is able to shed some light on the process of being a living donor. I had just completed the questionnaire a week ago today for my sister, the day she found out she had been approved for a transplant at the Mayo. We have not heard anything other than her receiving a letter confirming she was approved for transplant The email said I would be contacted within 5 days.. I'm assuming I'm just worrying and being impatient since it has only been a week. Just seeing if there was anyone out that that is able to provide some reassurance in the process. There wasn't anything I answered in the health questionnaire that I would thing would not me allow to be tested..at least I had thought so. Amy info would be greatly appreciated.

Thanks!!

I spent 3 days at Mayo this week and got good news and bad news. The good news: my kidney function was the highest it has been in the last 5 years. My GFR was up to 20. The bad news is that after 6 years of being cancer free, tests done this week indicate that my pancreatic cancer has returned. That ends any hope for a kidney transplant for at least 5 years. Waiting to hear the results of the biopsy so we can figure out how to attack this.

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@marvinjsturing

I spent 3 days at Mayo this week and got good news and bad news. The good news: my kidney function was the highest it has been in the last 5 years. My GFR was up to 20. The bad news is that after 6 years of being cancer free, tests done this week indicate that my pancreatic cancer has returned. That ends any hope for a kidney transplant for at least 5 years. Waiting to hear the results of the biopsy so we can figure out how to attack this.

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@marvinjsturing Oh, Marvin, how disappointing this news must be to hear, about the possible return of pancreatic cancer. What do you think the options are for treatment? How can we support you at this point?
Ginger

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@gingerw

@marvinjsturing Oh, Marvin, how disappointing this news must be to hear, about the possible return of pancreatic cancer. What do you think the options are for treatment? How can we support you at this point?
Ginger

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@gingerw I met with a surgeon on Thursday. He said the arteries to the spleen, stomach and liver are in the tumor so they cannot do surgery. In cases like that, they would do radiation and an oral chemo. Because of my kidney problems I cannot do the chemo. That leaves radiation without chemo. This is all so recent, I have not had much time to think. I may have to see what's available for clinical trials.

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@marvinjsturing

@gingerw I met with a surgeon on Thursday. He said the arteries to the spleen, stomach and liver are in the tumor so they cannot do surgery. In cases like that, they would do radiation and an oral chemo. Because of my kidney problems I cannot do the chemo. That leaves radiation without chemo. This is all so recent, I have not had much time to think. I may have to see what's available for clinical trials.

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@marvinjsturing So much to wrap your head around. Can you go to Mayo?
http://mayocl.in/1mtmR63
You are in my thoughts today….
Ginger

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@gingerw

@marvinjsturing So much to wrap your head around. Can you go to Mayo?
http://mayocl.in/1mtmR63
You are in my thoughts today….
Ginger

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@gingerw My testing was done at Mayo. The surgeon I met with was Dr. Nagorney. He said he started at Mayo the same day that Dr. Farnell (who did my Whipple 6 years ago) started. He told me that Dr. Farnell was much smarter because he was already retired. My oncology nurse told me that Dr. Nagorney helped "train" Dr. Truty. I was told that a whole team of doctors reviewed my records and test results. At first I was told that I would be meeting with Dr. Truty but he was busy elsewhere. They are waiting for the biopsy report to come in before they finalize the treatment plan.

REPLY
@marvinjsturing

@gingerw My testing was done at Mayo. The surgeon I met with was Dr. Nagorney. He said he started at Mayo the same day that Dr. Farnell (who did my Whipple 6 years ago) started. He told me that Dr. Farnell was much smarter because he was already retired. My oncology nurse told me that Dr. Nagorney helped "train" Dr. Truty. I was told that a whole team of doctors reviewed my records and test results. At first I was told that I would be meeting with Dr. Truty but he was busy elsewhere. They are waiting for the biopsy report to come in before they finalize the treatment plan.

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Wow, @marvinjsturing you really do have the best of the best working with you on your team. The waiting is tough, but they’ll need all the info from all tests to get the full picture and make qualified recommendations. The other super important ingredient is YOU and your preferences and choices. Please let them know that you’re interested in clinical trials if you haven’t already. I might suggest you also tell them about you, not just the medical stuff, but your hopes and goals with this news so you develop a treatment plan that aligns with a revised live plan. Does that make sense?

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@marvinjsturing

I spent 3 days at Mayo this week and got good news and bad news. The good news: my kidney function was the highest it has been in the last 5 years. My GFR was up to 20. The bad news is that after 6 years of being cancer free, tests done this week indicate that my pancreatic cancer has returned. That ends any hope for a kidney transplant for at least 5 years. Waiting to hear the results of the biopsy so we can figure out how to attack this.

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I am so sorry, Marvin. I'll be praying for healing and guidance for the doctors. I can't imagine your frustration right now.
Blessing,
JoDee

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@marvinjsturing

@gingerw My testing was done at Mayo. The surgeon I met with was Dr. Nagorney. He said he started at Mayo the same day that Dr. Farnell (who did my Whipple 6 years ago) started. He told me that Dr. Farnell was much smarter because he was already retired. My oncology nurse told me that Dr. Nagorney helped "train" Dr. Truty. I was told that a whole team of doctors reviewed my records and test results. At first I was told that I would be meeting with Dr. Truty but he was busy elsewhere. They are waiting for the biopsy report to come in before they finalize the treatment plan.

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I love Mayo's team effort. You know you will get the best care. Many, many prayers.

REPLY
@marvinjsturing

@gingerw I met with a surgeon on Thursday. He said the arteries to the spleen, stomach and liver are in the tumor so they cannot do surgery. In cases like that, they would do radiation and an oral chemo. Because of my kidney problems I cannot do the chemo. That leaves radiation without chemo. This is all so recent, I have not had much time to think. I may have to see what's available for clinical trials.

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Hugs and peace to you, @marvinjsturing. When your mind settles down a bit, and you have time to think – I hope you can try to focus on knowing that you are in the best of care at Mayo.

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@marvinjsturing

I spent 3 days at Mayo this week and got good news and bad news. The good news: my kidney function was the highest it has been in the last 5 years. My GFR was up to 20. The bad news is that after 6 years of being cancer free, tests done this week indicate that my pancreatic cancer has returned. That ends any hope for a kidney transplant for at least 5 years. Waiting to hear the results of the biopsy so we can figure out how to attack this.

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@marvinjsturing I am so sorry for the bad news. We have a close friend who is dealing with pancreatic cancer now also. It's a tough road.
The team efforts at the major hospitals really help to give the patient confidence. That was what I loved about Mass General too. When you know that multiple doctors are involved you know you are not getting the opinion of just one doctor. I have read that Mayo is at the forefront in pancreatic cancer treatments so you are in good hands there. What I read last year was about some new ways of dealing with it. Since then I read that U Co is doing the same thing.

Thoughts and prayers are with you, Marvin. Keep us informed. I know being on a forum such as this really can make you feel like you know the other people and that leads to caring about them.
JK

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@marvinjsturing

I spent 3 days at Mayo this week and got good news and bad news. The good news: my kidney function was the highest it has been in the last 5 years. My GFR was up to 20. The bad news is that after 6 years of being cancer free, tests done this week indicate that my pancreatic cancer has returned. That ends any hope for a kidney transplant for at least 5 years. Waiting to hear the results of the biopsy so we can figure out how to attack this.

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Mayo called with the results of my biopsy. Pancreatic cancer has come back. Need to meet with a radiologist to set up a treatment plan.

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@marvinjsturing

Mayo called with the results of my biopsy. Pancreatic cancer has come back. Need to meet with a radiologist to set up a treatment plan.

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@marvinjsturing Oh, how upsetting. I am so heartbroken to hear this, after all your patient waiting for that 5 year mark. How can we support you?
Ginger

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