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 That really must have made you feel good, congratulations. When I was in the throes of cirrhosis I tried my best to maintain my appearance because I did not want anyone to look at me and feel sorry for me. People frequently mentioned how good I looked, even the medical people when I went for appointments. My PCP said if he didn't know I was sick he would think I was perfectly healthy. That was my goal and it did make me feel good. The last six weeks or so things did go downhill and I gained so much fluid weight that I couldn't leave the house -- no shoes fit!, so then no one really saw that I no longer was looking good.
JK

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@2011panc

We often do not really know how other people view us. Today I attended a baby shower and saw a woman I have not seen for probably 6 years. We were both visiting with everybody for a while before she caught me alone and asked who I was. She then admitted that she did not recognize me at first because I looked so much better and healthier. What a great feeling! I feel like I struggle everyday now and really work to keep my attitude up, but she saw a new and healthier person. I count that as a big Gold Star and Blue Ribbon Day! My calendar is marked! I pray for everyone of us to experience a similar event. it really made my day.

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@2011panc, You deserve one of those shiny sparkly gold stars! And the Big Blue Ribbon, too. I know how much effort you put into taking good care of you.
What a wonderful compliment, being told how much "better and healthier" you look now!
Thank you for sharing this experience:-)
Prayers for you, too.
Rosemary

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@contentandwell

@2011panc That really must have made you feel good, congratulations. When I was in the throes of cirrhosis I tried my best to maintain my appearance because I did not want anyone to look at me and feel sorry for me. People frequently mentioned how good I looked, even the medical people when I went for appointments. My PCP said if he didn't know I was sick he would think I was perfectly healthy. That was my goal and it did make me feel good. The last six weeks or so things did go downhill and I gained so much fluid weight that I couldn't leave the house -- no shoes fit!, so then no one really saw that I no longer was looking good.
JK

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@contentandwell I was so surprised because I realized that how I feel is not how I always appear. That was a very nice encounter for me.

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@glinda, I want to wish you a Happy Transplant Anniversary. I hope that you have a nice day:-)
Rosemary

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@2011panc, I want to send you a Happy Transplant Anniversary for your January anniversary. I hope you enjoy your special day:-)
Rosemary

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@rosemarya

@glinda, I want to wish you a Happy Transplant Anniversary. I hope that you have a nice day:-)
Rosemary

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Thanks rosemary I planned to have a quiet day and take a long walk as its going to be nice for a change here in eau claire wi. Above normal in the 40s again it's still hard to believe that I am 7 years post transplant and my kids get a kick out of me as us heart transplant patients don't call it anniversary we call it heart transplant birthday so I tell my kids every year my 2nd birthday is coming up in january and they tease me and say no but it always does have a great day rosemary and thanks again
Glinda

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@rosemarya

@2011panc, I want to send you a Happy Transplant Anniversary for your January anniversary. I hope you enjoy your special day:-)
Rosemary

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@ rosemarya, Thank you for your well wishes. I had a very good day except for my unrelenting back pain.
I finally had an appointment with the closest Pain Clinic today and got some injections that I was very hopeful would lead to at lease a few months of resolution. It was an unsuccessful and painful experience. Now I have to wait for the next step. We still have some options, so hope remains. Right now I am hurting and despondent.
Tomorrow I restart physical rehabilitation at home using my last regimen -- at least as much as I can do. Since part of today's regimen was to walk for 4 hours, we did some shopping and I found a guide to Toga as well as an illustrated Yoga handbook. So we are praying for strength for carry us through and endurance to become as physically fit as possible in case back surgery becomes a reality.

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@rosemarya

@2011panc, I want to send you a Happy Transplant Anniversary for your January anniversary. I hope you enjoy your special day:-)
Rosemary

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@2011panc, Best wishes for you as you start the next regimen of treatment. I really hope that you can get some relief.
Wow! 4 hours of walking - is that possible for you, or is that the goal? I have to assume that is throughout the day and any movement counts.
My girlfriend has back pain and we are going shopping this week. She can walk for a while, then needs a shopping cart to lean on. She used to be such an active gal. We used to walk together, but now we shop for our craft and sewing notions, and do lunch:-)
The fun goes on anyway!
I enjoy hearing from you. Keep us updated.
Rosemary

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@rosemarya

@2011panc, I want to send you a Happy Transplant Anniversary for your January anniversary. I hope you enjoy your special day:-)
Rosemary

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@rosemarya Amazing, right? Walking and standing are the most painful things I do, and they wanted me to walk the first 4 hours after leaving the office. So . . . we went shopping, my favorite pastime. We went to Target and I used a cart. I made it an hour before I had to find some place to sit. We ate a late lunch and then found a little strip mall to check out the shops. After about a half hour we ended up in Barnes & Noble, where chairs are available. I had to sit every half hour just to make it through. It was tough and I am certainly glad it is over. It was a test to see how the injections affected my pain. As I said, epic fail. I am disappointed, but will go back next week and see what else we can do. As smart as God made us, there must be something. I also like craft and sewing shops.
Just now I am preparing an introduction box for a student in Oklahoma to share our local customs and culture. I discovered that I have a wealth of information to share and a renewed pride in my State. It reminds me of how many people seem to think that we need to go somewhere else for vacations. I wonder how many vacationers really know their own area?
Best to all, thank you for sharing with me.

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@rosemarya

@2011panc, I want to send you a Happy Transplant Anniversary for your January anniversary. I hope you enjoy your special day:-)
Rosemary

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@2011panc, I am honestly surprised that they assigned you 4 hours of walking! I realize it was a test of the effectiveness of the injection for pain - but, I don't imagine that you are in physical condition right now for that kind of endurance. No offense intended.
My husband and I enjoy a good hike. And we do not/cannot go 4 hours of even easy trails that long. Personally, I find shopping to be very exhausting anyway, I still enjoy it, though-it's my girl time with my girlfriends.

You have raised a good point about knowing our own areas! There was a push for 'staycations' several years ago when the gas prices were rising. And people were sharing about their local features. That might be a good discussion topic for the "Just Want to Talk" Group. I can envision it to be an uplifting and informative conversation. And it would appeal to all members. I would like to ask you to think about starting such a discussion. I'm thinking in terms of the features of your area that make you feel good or How does it present blessings or positive living, etc. (Maybe I'm putting off paying my bills, by writing this;-) What are your thoughts?
Rosemary

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