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 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.

Jump to this post

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

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.

Jump to this post

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.

Jump to this post

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.

REPLY
@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.

Jump to this post

@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

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

@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

REPLY
@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.

Jump to this post

Hi @marvinjsturing, When will you meet with the radiologist?

REPLY
@colleenyoung

Hi @marvinjsturing, When will you meet with the radiologist?

Jump to this post

@colleenyoung I meet with my oncologist next week Tuesday. Hopefully meet with radiologist right after that.

REPLY
@marvinjsturing

@colleenyoung I meet with my oncologist next week Tuesday. Hopefully meet with radiologist right after that.

Jump to this post

@marvinjsturing The wait to see a doctor when you have such a condition can be so frustrating. I hope your appointments go well and you have a good plan of action to defeat this. It's a scary time for you, I am sure. I am very tuned in since as I mentioned a close friend is going through treatment for pancreatic cancer also.
JK

REPLY
@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.

Jump to this post

@marvinjsturing I am disappointed that the cancer has returned, and I know you didn't expect that. However, it is wonderful that you are getting help fast and can start treatment to defeat the cancer again and get back on track for your transplant. I have been out of commission so I am sorry to be late responding. I have been thinking of you, and I will continue to pray that when all is said and done that you will walk out feeling terrific.
Carol

REPLY

@retiredteacher Thanks for your prayers. I have not given up all hope of a transplant, but I first have to beat this pancreatic cancer (again). And then I have to be cancer free for 5 years before I will be eligible for a transplant. Omaha took me off their list. Mayo didn't take me off the list, just made me inactive because I am too sick for transplant. I meet with my oncologist tomorrow morning to determine a plan of treatment.

REPLY
@marvinjsturing

@retiredteacher Thanks for your prayers. I have not given up all hope of a transplant, but I first have to beat this pancreatic cancer (again). And then I have to be cancer free for 5 years before I will be eligible for a transplant. Omaha took me off their list. Mayo didn't take me off the list, just made me inactive because I am too sick for transplant. I meet with my oncologist tomorrow morning to determine a plan of treatment.

Jump to this post

@marvinjsturing Are you being treated at Mayo? From what I have read they have an excellent center for pancreatic cancer.
JK

REPLY
@marvinjsturing

@retiredteacher Thanks for your prayers. I have not given up all hope of a transplant, but I first have to beat this pancreatic cancer (again). And then I have to be cancer free for 5 years before I will be eligible for a transplant. Omaha took me off their list. Mayo didn't take me off the list, just made me inactive because I am too sick for transplant. I meet with my oncologist tomorrow morning to determine a plan of treatment.

Jump to this post

@marvinjsturing One positive in your journey is that you have been through pancreatic cancer before so you know what to expect. Hopefully, this time will be easier. Then another five years sounds like too long, but getting your pancreas well is the first step again. Sometimes we wonder why things happen the way they do. I read a book entitled, Why Bad Things Happen to Good People. It is a comforting read, if you feel like thinking through that. It was given to me when I was going through a hard time in my life, and I found some consolation. You know that people are thinking of you every day and asking for help and comfort for you. Positive thoughts and prayers go nightly from me. If asking and praying can make things happen, then it will happen in your favor. It's just going to take a little more time. Growing up, I prayed daily for a bad situation in my life to be better. My mother told me and I have heard pastors and religious people say that the Good Lord doesn't get in a hurry, so we have to have patience. Stay in touch; I'll lift you up from my home, and I know others will too.
Carol

REPLY
@contentandwell

@marvinjsturing Are you being treated at Mayo? From what I have read they have an excellent center for pancreatic cancer.
JK

Jump to this post

@contentandwell Six years ago, I had my diagnosis and Whipple surgery done at Mayo in Rochester. My chemo was done at my local hospital. Every 6 months I went to Mayo for my PET scans. Last December, I had a PET scan done locally. It was inconclusive, so I went to Mayo for a second opinion. They did confirm that my cancer had come back. I will have my radiation treatments done locally but I will insist that my 6 month checkups will be done at Mayo.

REPLY
@retiredteacher

@marvinjsturing One positive in your journey is that you have been through pancreatic cancer before so you know what to expect. Hopefully, this time will be easier. Then another five years sounds like too long, but getting your pancreas well is the first step again. Sometimes we wonder why things happen the way they do. I read a book entitled, Why Bad Things Happen to Good People. It is a comforting read, if you feel like thinking through that. It was given to me when I was going through a hard time in my life, and I found some consolation. You know that people are thinking of you every day and asking for help and comfort for you. Positive thoughts and prayers go nightly from me. If asking and praying can make things happen, then it will happen in your favor. It's just going to take a little more time. Growing up, I prayed daily for a bad situation in my life to be better. My mother told me and I have heard pastors and religious people say that the Good Lord doesn't get in a hurry, so we have to have patience. Stay in touch; I'll lift you up from my home, and I know others will too.
Carol

Jump to this post

We just got home from an appointment with my oncologist. After reviewing my reports from Mayo, he concurred with their recommended treatment plan – radiation without any chemo (chemo may do further damage my kidneys). My greatest fear was that it would take a couple of weeks to get in to see the radiologist. But God answered our prayers. Tomorrow, after meeting with the nurse and the doctor, I will have a radiation planning session. I have another radiation planning session on Thursday. I am not sure exactly when radiation will start or how long it will last. It will be 5 days a week. Mayo talked about 3 – 5 weeks. My oncologist this morning talked about 6 weeks. I'm sure I will learn more of the details when I talk to my doctor tomorrow.

REPLY
Please login or register to post a reply.