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!!

@marvinjsturing

I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me that the transplant committee has approved placing my name on their transplant list, however I will be inactive at this time. We recently moved and i had to find a new oncologist. One of the first things he did was to order a PET scan. After the scan, he called and told me there were "shadows" in the area of my Whipple surgery. He recommended that I have another PET scan in 3 months. Nebraska Medicine said they wanted to see the results of that scan before they would make me active.

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@marvinjsturing Getting a spot on the list is a great step. Holding good thoughts on those shadows.
Ginger

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@marvinjsturing

I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me that the transplant committee has approved placing my name on their transplant list, however I will be inactive at this time. We recently moved and i had to find a new oncologist. One of the first things he did was to order a PET scan. After the scan, he called and told me there were "shadows" in the area of my Whipple surgery. He recommended that I have another PET scan in 3 months. Nebraska Medicine said they wanted to see the results of that scan before they would make me active.

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@marvinjsturing hopefully the shadows will prove to be nothing. I had a scan at one point that had a shadow which they thought was a clot. The head radiologist then examined it and decided it was just a blur! Phew. I hope the same for you.
JK

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@marvinjsturing

I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me that the transplant committee has approved placing my name on their transplant list, however I will be inactive at this time. We recently moved and i had to find a new oncologist. One of the first things he did was to order a PET scan. After the scan, he called and told me there were "shadows" in the area of my Whipple surgery. He recommended that I have another PET scan in 3 months. Nebraska Medicine said they wanted to see the results of that scan before they would make me active.

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Prayers that it is nothing and that you are activated soon.
Blessings,
JoDee

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@marvinjsturing

I received a call from my transplant coordinator at Nebraska Medicine this afternoon. She informed me that the transplant committee has approved placing my name on their transplant list, however I will be inactive at this time. We recently moved and i had to find a new oncologist. One of the first things he did was to order a PET scan. After the scan, he called and told me there were "shadows" in the area of my Whipple surgery. He recommended that I have another PET scan in 3 months. Nebraska Medicine said they wanted to see the results of that scan before they would make me active.

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Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

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@marvinjsturing

Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

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@marvinjsturing – I am disappointed that you are in this situation. Thanks to Mayo for scheduling you next week. Praying for you.

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@marvinjsturing

Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

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@marvinjsturing I am sorry to hear this, but at least you are getting a second opinion from Mayo. Let's hope and pray for the best. I understand how hard it is when nothing seems to be going in the right direction, but just stay strong and think positively that things will work out. I will continue to pray for you.
Carol

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@marvinjsturing

Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

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@marvinjsturing Oh, dang. I join @rosemarya and @retiredteacher in keeping our fingers and toes crossed for findings in your favor!
Ginger

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@marvinjsturing

Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

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@marvinjsturing that is so disappointing. I will also hope and pray that your results will be good so can be an active candidate again.
KK

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@marvinjsturing

Nebraska Medicine called to let me know that I am now on their kidney transplant list as inactive. They had one of their doctors review my PET scan. That doctor said there may be some evidence that my cancer has come back. I asked Mayo to review my results and they have scheduled me for a PET scan next week.

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Hello @marvinjsturing,

I can only imagine how worrisome this news would be, Marvin! I'm glad you could get into Mayo so soon. Praying for good news.

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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.

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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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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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