1. < Transplants
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.

JK | @contentandwell | Jul 21, 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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@rosemarya It sounds great Rosemary. I am way too old to not be a grandmother! My kids both seem to be late bloomers. My daughter just turned 35 (egads, how did she get to be that old?) and my son will be 37 in August. We will get to see each for one more day. She will be here on Sunday on their way home from a long weekend in Montreal -- she has to pick up her little dog, and he and his girlfriend will be returning to Boston on Monday to catch their flight back to LAX so we will go to Boston to have a meal with them.
JK

REPLY
JK | @contentandwell | Jul 21, 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 I just re-read your post about making sure that the regular hospital staff should be reminded of my needs. That really is imperative when it comes to medications. I know when I have been in the hospital before that they did not adhere to the schedule I had, and that they at times did not give me my levothyroxine a half hour before my meal.

If anyone else here takes synthroid also, I have read that you should not drink coffee within an hour of taking your synthroid - https://www.verywell.com/coffee-and-thyroid-medication-3233255. I did not find this on the official synthroid site though. It is on other sites along with the one for which I have included the link. I have no idea if this is true but I figure better safe than sorry so I take mine in the morning before getting up (I always wake to go to the bathroom) or if I don't wake and take it closer to breakfast I take my shower to use some time or find something distracting to do. I also take my omeprazole at that time and the imodium that has become necessary.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 21, 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

@contentandwell, Yes, Life is good! I know what you are saying about remembering and being grateful. Thanks for sharing. We are having our sons, daughter-in-law and 4 yr old granddaughter here for picnic Sunday:-) Rosemary

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 21, 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

@contentandwell Finding a "cautious" and "patient oriented doctor" is quite a find! Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 21, 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

Hello @contentandwell. It is good to hear from you, as always. I am so happy that your weekend went well! Teresa

REPLY
JK | @contentandwell | Jul 20, 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 Thanks for the transplant page link.
Also, since MGH and Brigham and Women's are "partner hospitals" they do work together, which is why at MGH they were happy when they heard where I was getting the knee done. My medical records from MGH are available to my doctor at Brigham.
My orthopedic doctor there is very aware of my transplant. I spoke to him when I was waiting transplant because the doctor at MGH with whom I was dealing at that point said if the doctor would do it then I could go ahead. He would not, he called me himself and very nicely told me the why and all. So far I really like him and he seems to very patient oriented. Other people I know who have used him have really liked him also and been very happy with the results. He is extremely cautious.
JK

REPLY
JK | @contentandwell | Jul 20, 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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@lexiopo I hope this alerts you that you have a message. It is not coming up with your name and I have checked and believe I have your name spelled correctly.
Your husband is very fortunate to have you willing to be his donor. Are you and he the same blood type? My husband and I are but he assumed he would not be considered due to age and having had prostrate cancer.
Mayo is amazing. If I had gone much longer waiting for a liver at Mass General I would have started the process to get listed at Mayo but my transplant happened sooner than they anticipated for some happy reason. Happy for me but obviously not so for the donor's family.
JK

REPLY
JK | @contentandwell | Jul 20, 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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@davebarnes I posted this before but apparently spelled your name incorrectly and Lynne (@lcamino) suggested I re-send to you. I hope you find someway that this will be paid for.

I take it you are not on Medicare yet, you do look too young for that of course. With Medicare the immunosuppressants are paid for through Medicare B, we rarely have to pay anything for the drugs.
So did Mayo give you a plan to bring you forward?
JK

REPLY
JK | @contentandwell | Jul 20, 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 It sounds as if even your local hospital, despite not doing transplants themselves, were very much on the ball. Unfortunately I did not find that at mine. I do know that after my diagnosis my PCP did some research to know more about cirrhosis, but as I said that was after diagnosis. The only thing that is an excuse for his not diagnosing me was that my ALT and AST were not elevated by much but they were still not when the hospitalist ordered an ammonia test.
I think it is very typical to not notice symptoms. As I have mentioned, my hepatologist in Boston said I probably had cirrhosis for about 10 years before any symptoms presented themselves, although my platelet count did start going down at what would have been right around the time when cirrhosis started. At first it was just slightly out of range but it continued to go down with every 6 month checkup.

I was away in Maine until today and our son and daughter were up there with us, with her fiance and his girlfriend. So many times when I looked at what I was doing -- cooking, cleaning, and everything else my mind went to last summer when I go to a point where I could barely do anything due to debilitating fatigue and then horrible ascites. I just felt so grateful to be enjoying life with my kids.
Life is good.
JK

REPLY
davidgenebarnes | @davidgenebarnes | Jul 17, 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

No, I am not on Medicare B as I am 52. No, Mayo didn't give me a plan. I just need to prove that I can pay for it. Thanks for the comment

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