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.

@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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I am enjoying this conversation because it seems that we are all dealing with many similar issues! Healthy diets, exercise, weight concerns....I am thankful that we can support each other by sharing.
I, too, was nauseas most of the time prior to transplant. In addition to that, my sense of taste had disappeared, so that if I felt like I could eat, it was an effort. After transplant my sense of taste returned. And with no more nausea my eating is something that I need to monitor closely everyday.
And blood pressure is a concern, too. Our medications do have a tendency to elevate our BPs so we really do struggle together!
Hugs to all of you.
Rosemary

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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To All,
I want to jump in here and add that I, have recently joined a new local 24/7 gym. For anyone not in need of any specialized physical therapy guided exercise this might be an option to look at. In my situation, an on site trainer was able to help me come up with an exercise plan to help meet my current fitness goals.
Also for anyone reading this, who is frightened by private gym membership fees, look into programs like the Silver Sneakers program for seniors.
Life is good!
Rosemary

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@lcamino Lynn, thankfully I am not taking it anymore, but going to the bathroom is actually the point of lactulose! You are supposed to titrate it to have three loose movements a day, pushing out the ammonia that has not been filtered by your sick liver so it will not go to your brain and cause Hepatic encephalopathy. That (HE) causes confusion and when really bad can cause a coma or even death.
You have no idea how happy it makes transplant recipients when they no longer have to take this. There were times when I was afraid to make plans or to leave the house when taking it.
Jane

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@lcamino, thanks Lynn. That's good to know because I have bursitis in both of my hips! It got a lot better after my transplant because that forced me to be inactive for a while but some days it is back. I will have to notice if the days when I use the elliptical seem to precede my bursitis.

I used to get cortisone shots regularly for the bursitis. I went to a few doctors that never managed to hit the right spot. Then I went to a doctor in Boston and he asked if they had used a longer needle, telling me that in patients with a little extra padding that was needed. I thought that was a very considerate way of saying that I was fat. He always did hit it right.
JK

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@rosemarya, I never lost my appetite before transplant, losing weight was a real struggle.
I didn't realize that medications after transplant raised blood pressure, I only knew that cirrhosis tends to lower it.
JK

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@contentandwell, I was constantly monitored for ammonia level, and we were instructed to be aware of the symptoms to look for. But I never needed any treatment. It sounds like I was really fortunate.
Rosemary

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@contentandwell, It is amazing to me that we both had liver failure, and yet our symptoms were so different. Once one of my doctors told me that if he had 2 people with the same liver disease that each could experience vastly different symptoms. And need different treatments prior to transplant. It boggles my mind.
As far as eating beforehand, I was plagued by nausea and my body was filling with fluids that made movement difficult. My local GI, who was so concerned that I eat, told me to try to drinking Ensure. When I cringed, he added , with a wink, "I hear it is better with a scoop of ice cream".
I only left the house for doctor visits, and always had my barf bag with me. That was in Nov, Dec, Jan. here at home...then I was flown to Mayo in Feb...my taste was gone now, but I was able to keep some foods down, after treatment ...my transplant was in April. And while in hospital, I was approved to eat ice cream because now I needed to gain weight. Ha! Today, I enjoy ice cream. And for me, it is my "beverage of choice" when we celebrate đŸ˜‰
Rosemary

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@contentandwell, I could be wrong. I have both liver and kidney transplant, so I might be confusing the kidney issues with the liver. In my case I am always advised to keep a close watch on my sodium intake, and to monitor my BPs. The kidney and hypertension departments work closely with that part of my follow-up care.
I think that hypertension is on of the potential side effects, though, with tacrolimus. I have learned to rely on my wonderful transplant team to keep me on the right path. That might be something to add to your list of questions for your annual visit.
Rosemary

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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Hi Rosemary: My club is 24/7 as well. Kind of neat to be able to exercise whenever you want. Teresa

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@contentandwell Medicare does not cover health clubs, but my "brand" of Medigap (through AARP-United Health Care) has an incentive program that offers 1/2 off membership to select work out facilities in my area. It includes the "Y" and several others. Teresa

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