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?

@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 think I’m going to try the myfitnesspal.com. I have been using my plate and although I’m eating less than it calls for and exercising I’m not losing weight. Very frustrating! I don’t know if my metabolism is slowing down due to the change of life or I’m adding so much muscle that the scale is not changing. My husband and I both think my shape is changing but I really want the numbers on the scale to go down too. You would think after eating the right amount of calories and biking four days in a row including 15 miles on Saturday and 5 miles on Sunday you would lose weight, not gain a pound!!! The only thing I’m holding on to is that I know my cardiovascular health has improved and that is important when preparing for surgery too.

I wonder if your pre-transplant med, lactulose, had a lot of lactose in it (just sounds like it from the name but I have no idea) and that is what upset your stomach. I have learned to ask the pharmacist about the hidden milk and lactose that is in many medications. At least you don’t need to take it now.

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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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@hopeful33250 the link in the daily digest just brought me to the top of the message string. The link within the individual responses brought me right to the specific message.

Hmm, Medigap? Is that the same as commercial supplementary Medicare coverages? I have plan F I think it is but I believe it only covers things that Medicare covers. They pay the remainder of what Medicare does not pay. I don’t think Medicare covers things like health clubs but I should check into that. We did have coverage at one point that did but that was prior to being on Medicare.

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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 – The thing I have heard from physical therapists is that the elliptical can bother some people’s hips because you are forced in a set stance and can’t adjust how close our feet are. Just something to keep in mind if you discover other aches and pains after trying it.

The rowing machine does look like a standard rowing machine. I don’t have a picture because I’ve not been to the YMCA since I’ve been biking. If you google “rowing machine workout” lots of pictures will pop up of different machines that all look relatively similar. They can get lost in a gym because they are so close to the floor that you might not notice them. I recommend asking an employee of the gym because they will definitely know and be able to show you the proper posture and how to set your feet and resistance. That is what I did and I found it very helpful.

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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, good luck with myfitnesspal. It seems rather cumbersome initially but once used to it, it’s a piece of cake (hmm, a piece of cake – sounds yummy). If you are eating commercial foods you can even somehow scan the UPC code to get it into the system but that is not something I use. My hepatologist was also using myfitnesspal and she went from slightly round to svelte. My husband didn’t even recognize her initially.
I am sure between that and your exercise you will see some pounds drop off. I lost a lot but now it yo-yos a bit. I don’t have as strong an incentive anymore. I need to be good now though, between a long weekend away on Memorial Day weekend and going to a baby shower yesterday I have eaten way too much and the scale shows it. Since I can no longer drink wine I do allow for my dark chocolate in the morning — good for your heart and cognitive abilities you know, so I consider it to be medicinal. 😉 Now my incentive is not get too fat to fit into the new clothes I bought after losing weight, plus my health of course. The clothes are a more tangible incentive though.

You question about lactulose was intriguing so I googled lactulose ingredients and here they are:
Lactulose is a synthetic disaccharide in solution form for oral or rectal administration. Each 15 mL of Lactulose Solution USP contains 10 g lactulose (and less than 1.6 g galactose, less than 1.2 g lactose, and 0.1 g or less of fructose). It also contains D&C Yellow No. 10, FD & C Yellow No. 6 and Purified Water.Jan 18, 2017

As you can see it has a tiny amount of lactose but I have never exhibited lactose intolerance so I doubt that caused it. Lactulose is just one of those awful meds that is so disgusting tasting it’s hard to stomach and of course it is working on your digestive system so I guess it’s probably not uncommon to get an upset stomach. As one person commented (elsewhere), when you get off lactulose you want to do “the happy dance”. Too true.
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 – interesting reading those ingredients. All those ingredients are high in FODMAPS (acronym for Fermentable Oligo-saccharides, Di-saccharides and Mono-saccharides and Polyols) which will send someone with Irritable bowel syndrome (IBS) to the bathroom in an instant. I’m not saying that is your issue but just my thoughts when I read the ingredients.

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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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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 😉
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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