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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say 'Hi'. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

Interested in more discussions like this? Go to the Transplants Support Group.

lexiopo | @lexiopo | Jul 12, 2017
In reply to @lexiopo "Hi everyone...i am just starting on the journey of becoming a living liver donor for my..." + (show)
@lexiopo

Hi everyone...i am just starting on the journey of becoming a living liver donor for my husband. He is from MN and I am from Florida. We have been living in Florida since early 2015 when my hiusband so graciously agreed to move to Florida to care for my Dad who was at the end stage of his battle with cancer. After Dad passed in March 2015 there was no question we would stay here to look after my Mom who was beginning to show signs of dementia. Two years and 3 months later my husband is battling for his own life and I am hoping i can be his living liver donor. The first place i contacted was the Mayo in good old MN. Of course our insurance has changed and so has a lot of things but family support both in Miami and in MN has increased. Any words of support would be greatly appreciated! Thank you to evrryone who jas gone down this scary process before us. Bless all of you.

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Thanks so much Lynn. I have not talked to anyone yet, but I am just now catching up on emails and messages.  I really appreciate your advice.  God bless you and I pray you get your kidney!

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lexiopo | @lexiopo | Jul 12, 2017
In reply to @lexiopo "Hi everyone...i am just starting on the journey of becoming a living liver donor for my..." + (show)
@lexiopo

Hi everyone...i am just starting on the journey of becoming a living liver donor for my husband. He is from MN and I am from Florida. We have been living in Florida since early 2015 when my hiusband so graciously agreed to move to Florida to care for my Dad who was at the end stage of his battle with cancer. After Dad passed in March 2015 there was no question we would stay here to look after my Mom who was beginning to show signs of dementia. Two years and 3 months later my husband is battling for his own life and I am hoping i can be his living liver donor. The first place i contacted was the Mayo in good old MN. Of course our insurance has changed and so has a lot of things but family support both in Miami and in MN has increased. Any words of support would be greatly appreciated! Thank you to evrryone who jas gone down this scary process before us. Bless all of you.

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Rosemary thank you so much for your kind words.  Your reply brought me to tears. I feel so overwhelmed at times it is nice to have someone to talk to.  I would be honored to walk with you!  God Bless.

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lexiopo | @lexiopo | Jul 12, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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Hi Rosemary, my husband is in cirrhosis caused by alcohol.  On June 2nd I had to call 911 because he vomited massive amounts of blood, beginning our 3 week stay in ICU. It was the 1st and only incident he had indicating there was an immediate medical problem.  And it will be his last as he almost died 3 times while in hospital. He survived 3 endoscopies, the Blakemore balloon, 2 TIPS procedures, and 2 paransentisis procedures.      I know some people feel that because his actions put him in his predicament that oh well, too bad. Yes, his abuse of alcohol put him here, but i don&apos;t believe in judging anyone.  We have all done things in our lives, that if we had the chance, we would probably not do again. The results of our life choices are just different for everyone. I hope I have not offended anyone.  He is not on any transplant list yet.       We just saw gastroenterologist on Monday, 1st appointment since being discharged.  My husband has to wait at least 6 months before being put on a transplant list.  So he can show that be has completely stopped drinking. He knows he can never take one more sip of alcohol, as he would not survive another bleeding episode.       So I am hoping to become his living donor at the Mayo, because I am not sure he can survive the minimum six month wait.  As of yet no one has responded from the Mayo unless I have missed something.  I have no messages on cell and do not see anything in my email.  I filled out the online donor application and it said someone would contact me in 2-3 days.  I have not stopped either, but  I will reach out to someone today to see what is going on.     Thank you so much for your replies.  It helps so much to know that there are people who really understand how hard this is, both for my husband and for me.     God Bless!

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JK | @contentandwell | Jul 12, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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@lexiopo Hi, no offense at all here. You are right, we all make choices that sometimes come back to haunt. I was overweight and my cirrhosis was presumably from NASH, but of course if so that was my own fault to not adhere to a healthier diet and stay in shape. Alcoholic addiction and food addiction are of course similar, and like an alcoholic I am doing the best I can to not "fall off the wagon". I have read that is actually more difficult with food than with alcohol because you have to eat whereas drinking is not a necessity.
Is your husband getting off of alcohol? I hope so and I hope as soon as that six months is up he will be at the top of list of transplant candidates.
More and more transplant centers are doing living donors now. Compare Transplant Centers published a list on Facebook this week showing which centers did the most living donor transplants. Are you on Facebook? If so look them up.
What is your transplant center? It would be interesting to see where if falls on that list. Maybe your center doe very few so they do not have a protocol in place yet.
Jane

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lexiopo | @lexiopo | Jul 12, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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Hi Jane,  thank you for your reply and kind, comforting words.  I am trying to have the Mayo in Rochester be our transplant center but am awaiting direction from them as to how to go about this.
Our doctor here in Miami gave us a referral to the University of Miami Transplant Center if the Mayo Living Donor does not work out.
I will look on FB at that list. I would imagine the Mayo is at the top!
Thanks again Jane!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 12, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

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@lexiopo, Here is the link to Mayo's Living Donor information to get you start4ed.
http://mayocl.in/2tf9l9N
Rosemary

REPLY
JK | @contentandwell | Jul 12, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

Jump to this post

@lexiopo I found it interesting to see which centers were doing the most. I do believe the Mayo in Minnesota was near or at the top and was surprised to see that my center, Mass General, only had one living transplant. The other hospitals in MA that do them both did more than MGH. I must say though, I positively loved MGH and I feel so cared for by them. When anything is wrong they are contacting me and we are working things out, such as my current creatinine level. They are modifying my medications with forethought regarding my knee replacement in October. Apparently the new med is not as friendly to healing as the other one. There are pros and cons to all of them.

If you are on Facebook make sure you connect with Compare Transplant Centers. They post information frequently about statistics etc.
JK

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 12, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

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@contentandwell, I absolutely agree with Rosemary. Your participation on Connect is volunteering and paying it forward in a significant way. Your contributions do not go unnoticed by members and the moderating team alike.
THANK YOU

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 12, 2017
In reply to @herbswife "My husband has just been diagnosed with liver disease in the last month, I am desperately..." + (show)
@herbswife

My husband has just been diagnosed with liver disease in the last month, I am desperately trying to avoid a transplant through health and unfortunately the medication we have to take due to all of the symptoms and effects. Can someone please help me understand the day to day struggles like uncontrollable nausea. At this point he can't even take all the medications correctly because he hasn't been able to eat for almost a week. Nausea meds seem to maybe help a little but not enough to get the nutrition that is necessary.

Jump to this post

Hi @lexiopo,
I'm sorry that you have not heard from the transplant department yet. You can contact our living donor teams via phone to be sure they received your form and find out your next steps. Here is the link with the contact information: http://www.mayoclinic.org/departments-centers/transplant-center/contact-us/occ-20209784. Please choose the Mayo Clinic site (Minnesota, Arizona, or Florida) you wish to donate to.

If you have further questions, don't hesitate to send an email to Kristin in our Minnesota office at transplant-rst@mayo.edu.

REPLY
JK | @contentandwell | Jul 12, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications..." + (show)
@contentandwell

@rosemarya @hopeful33250 I don't think I did ask them, I just called and asked about medications I could and not take if it was a fungus. They told me that but did not mention any possibility of it being weakened nails from the medications. I want to ask them about using lamosil also, so I will call or ask on the portal about those two things.
This is never an issue I would have thought I would be discussing on this forum but I probably brought it up wondering if anyone else had a problem from the typical immunosuppressants. Thanks for the feedback to all. I guess I will ask but then if they are not sure I will continue with the treatment. I have already paid for it up front.
The bigger issue now is despite my drinking massive amounts of water my creatinine continues to go up. On Monday it was up to 1.78. I am sure I will be getting a call from MGH tomorrow. They cannot possibly want me to drink even more water -- I am close to 100 oz a day now! I find the days I go to the pool the easiest to get all of that water in. I do one of my 3.5 cup water bottles while in the water, refill it and do a second and then drink more in the evening to finish off the large requirement -- glug...glug...glug.
JK

Jump to this post

@rosemarya @colleenyoung Well, I got the expected call from the transplant department at MGH today regarding my creatinine. They are going to cut my tacrolimus prescription in half -- currently taking 3, twice a day, to taking three once a day and taking sirolimus also. They want me to go for another blood test on Friday and start the new prescription on Saturday. I guess they will alter it again before my surgery. I hope this doesn't wreak havoc with our vacation plans with our son. I would be crushed. How often does a young (well, not so young anymore, he's 36) man ask his parents to go on vacation with him? That's just the way he is.
I really feel good that they keep such track of me, as I am sure they do with all transplant patients, but they make you feel like you are the only one important. My surgeon is like that too when I see him.
JK

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