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.

IWantToBelieve | @IWantToBelieve | Jul 14, 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'm back to sifting through emails because I'm stuck in my office containing my dogs while my tile gets washed and grout resealed/colored. It will look like new!

Is your knee replacement for the other knee or are you getting a revision? It is almost more important to have faith in your doctor than the implant they are using because if you are not confident in their skills your recovery will not be as successful.

Your daughter is beautiful and looks very happy. If mine ever get married I'm not guessing it will be very traditional either. Good for you for celebrating with them and not pushing your wishes on them!

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 13, 2017
In reply to @contentandwell "@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really..." + (show)
@contentandwell

@rosemarya @hopeful33250 @lcamino Thanks to all of you for all of your encouraging words. This really is a nice haven to share the good and the bad. Thankfully it seems like most of us are doing pretty well now - Lynn you are like I was, going strong with a transplant in the future. When I have time to read the posts on MAC/MAI I feel so bad for the people suffering from that, it sounds horrible.
I really do feel so fortunate to be where I am at. I went to a wake today for the last aunt from my mother's generation. Of course I saw many relatives and every one thought I looked great, which compared to how I looked before I guess I do. I never realized it at the time that although I never had a yellow cast to my skin I did look pretty pale and colorless. Of course a lot of their comments were brought on too by the fact that I have lost much weight too.
JK

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Good donuts!! And after getting results - good labs!!

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Kristen Quick, Marketing Specialist | @kequick | Jul 13, 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 @lexiopo. In addition to the resources @rosemary @contentandwell and @colleenyoung recommended, I wanted to also suggest the Scientific Registry of Transplant Recipients (SRTR). SRTR maintains outcomes data on every transplant center in the U.S. We shared some tips and tricks for navigating their site on our blog a few months back – check it out: https://connect.mayoclinic.org/newsfeed-post/five-things-to-know-about-the-scientific-registry-of-transplant-recipients/. Also, if you do end up wanting to find care closer to where you live, Mayo Clinic’s campus in Jacksonville, FL has one of the largest liver transplant programs with some of the best outcomes in the country. Best of luck on your journey!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 13, 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 I'm glad that you can look back on it and see how everything unfolded. Hindsight is great - Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 13, 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 You "pay it forward" in a remarkable way! I'm so glad that you participate in Mayo Connect! Teresa

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 13, 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, Take comfort that the labs and dosage changes are 'routine' 🙂
I completely agree with the need to express gratitude. A smile and a thank-you can change someone's day.
I appreciate you, too.
Rosemary

REPLY
JK | @contentandwell | Jul 13, 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 Rosemary, they really do manage to work things out. I usually do my labs, currently weekly, on Mondays but because we will be in Maine next week I am doing them Friday and Friday - we plan to come home on Thursday, both son and daughter have to leave then. I have to leave for a totally different appointment - podiatrist.
While writing this I got a call from my transplant team. Tomorrow I go for labs and then as of Saturday I start a different regimen for my meds, decreasing Tac and adding Sirolimus. I told the nurse who called, and who has been positively great, how much I appreciate them. She seemed very pleased to have heard that. While I was managing the front office in a nice four-star inn here I learned that people need to express appreciation more. Most of the time when we heard from people it was with a complaint so it was always really nice when someone dropped a note saying how much they appreciated our service.
The vacation I was concerned about is our vacation in October. We are leaving here on Sunday, September 30, and getting back on Wednesday, October 11, so that will be a fairly long time away. Prior to the last med change they had decreased my labs to monthly so hopefully by then I will be back on a monthly schedule.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 13, 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, It is a routine practice to have labs additional labs anytime there is a medication change or a dosage change. And, unfortunately, the timing can be inconvenient. Your surgeon is taking good care of you! I think that if you tell him about your travel plans, that the two of you can come up with a workable solution that is agreeable for both of you.
My immuno meds have been at the same dose for a long time. I'm guessing 4 or 5 years. I take them twice a day instead of once.
Enjoy vacation! Give son a hug.
Rosemary

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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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.

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