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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 6, 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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@2011panc That is funny about drinking vs drinking water. I think most of us do not drink enough water so i would not be at all surprised to your doctor's reaction. I will always miss my wine with dinner and I kick myself because my husband and son would often on a birthday or Christmas give me a really nice wine, more costly than I would purchase, and of course I stored those away in our wine fridge. Then I was no longer able to drink! So now if something is special I say USE IT WHILE YOU CAN.
JK

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 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 This is another "double-like." Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 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 Let's hope it doesn't come to that! Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 6, 2017

@contentandwell Hope so - but remember there are a lot of emotional reasons for eating - not all of those can be addressed with logic. Give it your best try if you feel led to. Teresa

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JK | @contentandwell | Jul 6, 2017

@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235 at one point!
JK

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14 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 6, 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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@2011panc, Thank you for sharing this memorable experience! I think it is a marvelous example of how much we can delight in the 'simple' moments that occur - after (and sometimes during) our l-o-n-g and difficult journey. When I read your post I was standing in line at the grocery checkout. You put a smile on my face:-) In fact you might say that I let out a little laugh. You have exceeded your goal by sharing this, in my opinion.
It is good to hear your voice. I hope that you are feeling well.
Blessings to you, too.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 6, 2017
In reply to @hopeful33250 "@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa" + (show)
@hopeful33250

@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa

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@contentandwell, I'm sorry for the confusion. I was referring to products like Tylenol PM, Tylenol sinus. Tylenol flu etc.
Rosemary

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JK | @contentandwell | Jul 6, 2017
In reply to @hopeful33250 "@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa" + (show)
@hopeful33250

@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa

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@rosemarya Gotcha. I never even thought of those because I have never used them. I hate taking as many prescriptions as I do.
JK

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IWantToBelieve | @IWantToBelieve | Jul 7, 2017
In reply to @hopeful33250 "@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa" + (show)
@hopeful33250

@contentandwell That is interesting, JK. Have you asked your transplant team about that possibility? Teresa

Jump to this post

@contentandwell - speaking from someone whose kidneys are failing I am not to use any medication without doctor's approval, which is obvious since most meds are filtered through the kidney and virtually everything you read says you should not take it if you have kidney issues. My nephrologist at Mayo does not want me taking Tylenol or Motrin because of the "health" of my kidneys but my daughter's kidneys function fine now and she is allowed to take Tylenol and Motrin on a limited basis when absolutely needed. I don know that Motrin, or any NSAID (non-steroidal anti-inflammatory drug), is harder for your kidneys to process.

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IWantToBelieve | @IWantToBelieve | Jul 7, 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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@contentandwell - What is MAC/MAI?

@colleenyoung, @contentandwell, @rosemarya, @hopeful33250 - I feel a little guilty sharing this because I'm still pre -transplant but I had a very encouraging visit at the Mayo Clinic in Rochester yesterday. I only met with the study co-ordinator but she shared blood test results from last month. Dr. Torres did a more accurate test for my GFR and it improved! Last month my GFR was 22, in the local ER its was 19, and with the more accurate test it was 26! The higher the better. I see the transplant team when it hits 20 so I am motivated to get back to regular exercise and eating healthier (confession - I was at such a plateau I had started to give up and not try because at least I was staying stable with my weight). It's amazing what a few numbers will do to one's psyche. People typically lose 5ml a year so if that is the case I would be at a GFR of 21 in one year which gets me past my youngest daughter's graduation (my hope/prayer). But, because I'm in a study which is using Tolvaptan (a med doctors know works but are trying to get approved by the FDA) I have hope that I can get my youngest off to college before my life becomes consumed with the transplant process. I'm now feeling silly for being a part of this group but you are ALL teaching me so much. I feel like I will take more in now than when I'm the transplant patient. Already I feel like my health is creeping into my mother duties so I can only imagine what it will be like in a year or two.

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