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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 8, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

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

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@lcamino I agree with Rosemary. I very seldom exercise every day. I usually take one day off - I think it is a good plan when you have a chronic illness. (It takes me a day to recover) Keep at though. Slow but steady will work if you are consistent with the schedule that you set for yourself. Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 8, 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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@lcamino Once again, I'm learning from your posts. I have a hard time exercising outside, especially in the summer, but you give good advice about knowing when you are hydrated. Here at Mayo Connect we thrive on TMI 🙂 Teresa

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 8, 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

Help me Teresa, What is TMI?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 8, 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

TMI stands for "too much information."

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 9, 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

@lcamino Your post was interesting - I didn't get the impression you were feeling sorry for yourself, but rather you were making observations about some of the difficulties you experience and being rather analytical. I see that as a good use of this discussion group. Teresa

REPLY
lexiopo | @lexiopo | Jul 9, 2017

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.

REPLY
5 replies
2011panc | @2011panc | Jul 9, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

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

Jump to this post

@lcamino, I know you are concerned about your health overall and your weight in particular. You could have been writing my story. I would like to share what works for me. First, stop dieting! Start making healthy food choices such as fruit for snacks. Second, learn proper portion sizes and stick to them. Most people eat far too much for each portion. Third, eat a well-balanced diet. Remember protein, grains, vegetables, fruit and dairy. Fourth, stop eating 3 meals a day. I eat small amounts when I am hungry, unless I am not hungry and have not eaten for 6 hours (then I force myself). And last, read ingredient labels. I try not to eat anything I cannot pronounce.

My typical breakfast is a banana and coffee. Early lunch is usually two rice cakes and hard cheese (or tuna). Afternoon lunch is usually a vegetable or more fruit. Dinner is meat of some sort (baked or grilled), vegetables and rice. Bedtime snack is fruit, popcorn, cheese and rice cake or vegetable (like cucumber). Once you figure out how much you need in a day, you can make a list. When you have eaten everything on the list you are done. That's why I only eat a little at a time and eat often. I don't like feeling hungry. Avoiding flour, sugar, root vegetables and extra fats keeps me feeling better and cuts many calories. I just checked my BMI (body mass index easily found online) and have moved from the middle of the obese range to near the overweight/normal line. It has taken me a long time (7 years), but there is no yo-yoing.

No one can do this for you and my way might not work for you. But you need to start somewhere and modify until you get to your final destination. Bless you and good luck!

REPLY
IWantToBelieve | @IWantToBelieve | Jul 9, 2017
In reply to @contentandwell "@hopeful33250 Teresa, I know this too well, how do you think I got to @ 235..." + (show)
@contentandwell

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

Jump to this post

@rosemarya - Your "permission" made me smile. I finally did strength training the day I wrote that post and biked 10 miles on Saturday. I usually plan to take Sundays off from exercise but I find when I don't exercise 6 days a week I start to lose the progress I have made regarding weight loss. I know I have to make better decisions with my eating (my strawberry shortcake was really good tonight) and not be so hard on myself (common problem in my family), but I feel a lot of pressure to lose weight before the transplant. I am confident that my heart is healthier than a year ago and that is a good thing. My bike is getting tuned up so I won't have it until Friday so I will have to use my exercise videos this week.

I think I might underestimate how my "health" impacts my energy level. Sometimes I blame my low energy level on waking up so much at night to go to the bathroom (meds and all that water) and other times I blame being out of shape and over weight for having low energy so I really don't know how my PKD plays into it all. Since my kidneys work well enough that I don't need dialysis I just assume that I can't use that as an excuse for needing an afternoon nap.

REPLY
IWantToBelieve | @IWantToBelieve | Jul 9, 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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@rosemarya - Thanks for your encouraging words! Yes, the day I had the lobster roll and bought the earrings was the day I got my improved lab results. I felt like I still had a chance at losing some more weight before I need the transplant and that was empowering.

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IWantToBelieve | @IWantToBelieve | Jul 9, 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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@herbswife - I'm so sorry to hear about your husband's recent diagnosis. I'm hoping others who have been through liver transplants (@rosemarya, @contentandwell) can give you some insight. Is your husband's doctor/nurse able to give you some coping suggestions - especially so he can get all his meds down? I do know there are some good anti -nausea meds available but I don't know if they are appropriate if you have liver disease. I would encourage you to ask your husband's doctor/nurse about that option as well.

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