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Rosemary, Volunteer Mentor (@rosemarya)

This and That and Talk - My Transplant

Transplants | Last Active: 15 hours ago | Replies (1615)

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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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Replies to "Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell..."

I hope the yoga plan can be worked out for you.
CK, Thank you for sharing your journey with us. By listening to you describe the barriers that are put in front of you due to your blindness, I am learning much about this condition. You are responsible for teaching me about things that I never even considered before.
I am admire your attitude and your determination. You do not allow yourself to be identified by your blindness. Here, where I live, there is a large deaf community. I also admire my friends who are deaf. They do not consider their deafness a disabling condition, and it is not.
Rosemary

Thank you Rosemary. I try to be a positive person and not let my struggles get me down. I am really enjoying the posts from all of you. Thanks so much for the encouraging words.
CK

@chattykathy, I hope you can work out rides to at least a few yoga classes. If not, I encourage you to see if the yoga instructor will come to your home and show you a few movements to get started. Once you have learned a few moves you should be able to do your movements at home at almost any time. Anything you can do in yoga should also help your balance issues. I understand about the back yard. I watch other people walking around, but when I try to go there I catch all kinds of lumps, humps and holes.

@chattykathy
Sorry it’s been a long time for me to respond to your post above but I can’t ignore your comment that gyms will not allow you to join due to your blindness. Based on the ADA this does not sound legal. In fact, they should be making the gym accessible to you due to your disability. If you really want to exercise at a gym you should be able to push this issue. I understand if you do not want to do so but some simple research online might confirm my hunch that gyms can not reject you for membership due to your blindness based on the ADA.

Hello; I have been out of town for a few days enjoying the holiday with my sister. I took this morning to catch up on the conversations here. I know about some of the ADA requirements for accessibility. I live in a very small town with only 2-3 gyms. I am considering asking my PCP about PT for balance issues. I have not heard back from the yoga thing. I will call again and ask about home instruction for a few moves and will see how that goes. I will see nephrologist next week and listen to his suggestions also. I am weaning myself off sugar (as little intake).

Have you been seeing dermatology for skin followups since transplant? Lets not forget to keep our skin checks per transplant team.

I hope all of you have a blessed day, CK

@chattykathy Dermatologist? I had a check up during all those exams and tests prior to being listed as a candidate but I don’t believe anyone has said I should be seeing one now>
Why does your transplant center suggest seeing dermatologist after transplant?
JK

@chattykathy, I have had annual dermatology exams since my transplant and expect they will continue as long as I take immunosuppressants.

@contentandwell, I believe my transplant center wants annual dermatology checkups because the immunosuppressants weaken my physical system and open me up to an increased risk of skin cancer. I have also been advised to refrain from spending time in the sun or sunbathing and to cover well whenever I go outside.

Transplant recipients are at greater risk for developing skin cancer.
Prevention and early detection are important.

I am scheduled for dermatology check-up each year during my annual evaluation.
Rosemary

@rosemarya I guess this is something I will be hearing about then. Another doctor visit, just what I want. Next week I have to see a pulmonary doctor to hear the results of an ECHO I had on Monday. When last done I was bordering on pulmonary hypertension. I also have to see my medical oncologist following the MRI I had yesterday; they are following that because of the malignant lesions I had. Malignant lesions sounds so much less frightening than cancer.
JK

Because we are likely to get skin cancer because of all the meds we take .?!

@chattykathy, I miss hearing your voice in these conversations. I do hope that you are doing well. Do you have any update about your nutrition and exercise possibilities?
I have been inspired to do some serious looking into my portion control, too. I’ll share a ‘trick’ that is working for me! I have been filling half of my plate with salad before I set it on the table – the result is that I have less empty plate to fill with the goodies that I prepare for my husband.
Rosemary

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