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 group.

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc Thanks 2011panc. I will try some of the things out that you mention. I have been told that bananas are fine and berries in limited amounts. I too frequently had oatmeal for breakfast, and I added either blueberries or strawberries, plus some ground almonds or walnuts. Now I have read that you can eat cream of wheat. That info did not come from my hospital but from googling but I believe the source that had that info was a good one. I’m not sure which one it was now but I generally only pay attention to very reputable sources.

Do you regularly take an anti-diarrheal? At the point I am taking two immodium a day and it helps but I don’t know what would happen if I did eat some higher fiber foods, and I wonder how long I can taking the immodium without it being a problem. I think I may be able to reduce some immunosuppressants in September, at my one year anniversary, so I am hoping at that point if not before I will be able to discontinue the immodium.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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I am glad you found my information helpful. When I make oatmeal for myself I add cinnamon, raisins, salt and walnut pieces. If I feel the need, some days I add a touch of maple syrup. Real maple, not pancake syrup. I have not tried Cream of Wheat, but the Rochester hospital did have Cream of Rice on the menu and that does work for me. I use rice in place of many grain options because it works for me.
I took 10mg of anti-diarrheal daily for a while and was able to wean off except for occasionally. Now I am planning to start an every other day regimen, as I am again having problem. I am just home from Rochester following a complete GI workup. The only thing they found were abnormalities in my colon and anal muscles. That is disappointing to me, but we work with what we have, right? Or not, right? lol
Depending on your issues and physician’s advice, you might do a trial of a higher fiber and then another trial of reducing your Imodium to check out your tolerances.
I use any anti-diarrheal, often store brand, if they have the same ingredients as Imodium brand because they are often less expensive. For me now, every penny counts. When I say ingredients I mean both active and inactive. I shy away from unnecessary inactive ingredients because of possible negative effects. Another area you might want to check ingredients is your vitamins or any otc supplements you may use. There are so many additives in products now and I avoid them as much as possible.
You may as well make friends with Imodium, but hopefully you don’t have to remain as close as you are now. Maybe she can move a few blocks away. lol Best of luck to you. You remain in my prayers.

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc It sounds like you and I could nicely have breakfast together, except no salt in my oatmeal, I try hard to keep my sodium low. I had to smile at the real maple syrup mention. I too use only real maple syrup (heck, I live in NH, nothing less does it for us). We were at a very nice Inn in Maine that my son and daughter gave us an overnight at for our 40th anniversary. They came too and at breakfast they served fake maple syrup! My daughter was completely nonplussed that a a highly rated Inn would serve that and then she could not eat her pancakes.:-) She loves maple — maple sugar candy, maple cotton candy, and anything else maple, and puts the syrup in her coffee too. I tried it — it is good but I usually put no sweetener in my coffee.

I dropped the evening pill the other day and sure enough I had a bit of a problem the next day. We were away for the weekend with friends, the husband in that couple is a doctor and he said that baby spinach leaves are less fibrous than other greens so I had a salad with them. I don’t know if my problem was from that or from decreasing the immodium. I guess this will be trial and error for a while.
I wonder if I also have a problem with my anal muscles. What type of doctor did you go to for that?

I take no supplements, just the slew of things prescribed for me. I will check for generics of the immodium, immodium is not cheap. Good advice to watch for every ingredient in them. I never had to take any anti-diarrheal products before and very few softener/laxatives too. Hopefully immodium won’t have a permanent relationship, and hopefully I will once again be able to eat salads and things of that nature. How ironic that here I was trying to eat healthy — whole grains, high fiber, fruits, raw vegetables and now those things are denied to me.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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I understand. I was referred to gastroenterology for my gastric workup. Previously I had it done closer to home, but we have fewer specialties available to us now. If you have a gastroenterologist near your home, that is where I would go. FYI, I had an endoscopy, colonoscopy, anorectal manography and had to collect stool samples.
As for your trial, I suggest trying them independently and drop the morning pill rather than the evening one. Also, I have had more problems with spinach than other greens, which seems strange. I still do eat broccoli with no apparent problems, thankfully. Although I now eat vegetables cooked almost exclusively.

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc and @contentandwell , I have to say that I am happy that you two have met here on Connect. By sharing this helpful information with each other, I, as well as others, are able to gain new insights into how to live successfully with complications. Your proactive approach and your desire for reputable knowledge are admirable.
I get energized by reading these conversations!
And so I want to thank you for showing us how to live:-)
Rosemary

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya Awww, Thank you. I am glad to help wherever I can. Since becoming medically discharged from the work environment I struggle to feel useful and am so pleased whenever I can be of help to anyone anywhere.

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc I googled info about spinach and baby spinach and I believe our friend was incorrect. The info was a bit confusing but I think the gist of it was that spinach has more fiber than other greens and even more when it is cooked! I was told I could eat some of the other vegetables because cooking breaks down the fiber but apparently that is not true for spinach. I am going to do some more googling to try to get a complete appraisal of fiber in all of these greens.
Thanks for the other info, I do have a gastro, but he too is in Boston. I need to go to him soon for a yearly endoscopy. If they do find a problem with your anal muscles is there anything that they can do about that?
I definitely agree, I plan to try the adjustments independently, that’s the only way to definitely know which is helping/hurting.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya Thanks Rosemary. When it gets sort of personal like this I always wonder if it should be taken to a one-on-one discussion but I can see where others might possibly from the info also. Some of it can be embarrassing to air publicly though.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@contentandwell, I think that you have presented a very interesting thought. You are correct about Connect being a place to help others thru sharing our experiences. However, it is up to you (or any member) to decide if information becomes too personal or uncomfortable to share publicly.
Each one of us has a different background and comfort level. So, we trust your judgment to decide whether to send a message thru the private messaging. As an example, I have had some private messages that have evolved into public responses; and some public messages that have involved some private messages.

Thank you JK for the insights that you are providing here on Connect.
Rosemary

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@2011panc, Your compassion and your desire to help others goes beyond ‘useful’ as far as I’m concerned.
It is amazing how we have learned to adjust our lives and our focus after our transplants. I love reading about and talking to others who have shared similar life experiences. I am learning so many helpful ideas in addition to meeting virtual friends.
Thank you for being here. 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 @rosemarya! I’m sorry for the late response but I’m quite behind on desk work. Add that my laptop went to my college student who spilled coffee on hers and it made things worse. That means I have to head to the chilly basement to get my computer/desk work completed.

My other big excuse is that I’m exercising most days and that is time consuming! No wonder I have not done it to date. If I go to the YMCA then with transportation, exercise, and shower I have spent 2 hours of my morning – yikes! I have not lost weight but I know I have gotten stronger, feel better, and my cardio gets better each time I exercise. I got a steroid injection in my plantar fasciitis and that has really helped. I still need to stretch daily (I usually only do once instead of 3x) and need to wear the splint at night since I have stepped up my exercise routine.

I usually do a combination of the rowing machine and the elliptical trainer for one hour. I started at 30 minutes but was not losing weight and my Mayo Clinic app has taught me I need around an hour 5-6 times a week to lose 1-2 lbs per week. Now that the weather has gotten nice, and my hubby has jumped on the exercise wagon, we are road biking. 10 miles is the farthest we have gone but the trails are hilly so I get good interval training. I love being outdoors and I really like having my husband exercising with me.

I had a bit of a setback with an ER visit for heart palpitations. I still need to follow up with a cardiologists but it looks like it is the lovely change of life. Who knew 24-40% of women experience heart palpitations during perimenopause? I didn’t! Actually my husband wondered if my flushed moments and dizziness was related to perimenopause and that research taught me about the palpitations. That was scary (my husband was out of town) but I was give the green light to keep exercising so I got on my bike and increased my intensity and frequency.

I was having constant morning nausea that would pass after I had a bowel movement. It was wasting 1-2 hours every morning. I thought it was everything pushing on my kidneys but my Mayo doctor didn’t think so. For a last straw he had me take all my meds at bedtime (except the study meds) and it worked! He will be surprised because he said the meds I was taking should not cause nausea. Glad he is a good problem solver!

I go to the Mayo clinic for my research study visit on June 6 and I’m a little worried. My GFR at the ER was 20 and it was 19 with my local nephrologist. I’m hoping the Mayo results are better or it looks like it’s time for me to meet the transplant team. I really wanted to wait until I was able to host my youngest daughter’s graduation party (June 2018) and get her off to college but that might not work out.

On an exciting note, while getting my bloodworm locally for my local nephrologist the phlebotomist offered to be tested to be a kidney donor for me! All my other family members have the disease (PKD) or have already donated. My youngest daughter has PKD so when my oldest offered me her kidney I told her to save it for her sister. My husband is unable due to other health issues.

Oddly enough my blood pressure is insanely low (98/65) the last I took it. It used to be 105/72 range before I started exercising. Due to a study my daughter was in I take 5mg of enalapril but I’m going to ask to come off it because I’m getting dizzy when I’m exercising. Crazy that my kidneys are at the end of their life and my blood pressure is so good, which is why I was stunned when I learned how close I was to needing a transplant.

That is enough blabbering on my part. Thanks for listening! I have appreciated learning from all of you as I have read all the posts even if I forget to “like” comments and I haven’t participated much (this is the first online chat I have participated in). Let’s just say I’m enjoying as much sushi as possible as I’ve learned that will be off my menu post transplant.

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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, @lcamino . My name is Lisa, and I’m a new moderator on Connect. Good for you with your exercise routine–that’s terrific!

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