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.

In reply to @amynewheart "Hello" + (show)
@amynewheart

@amynewheart You are special, I'm sure. I'm glad to hear that your doctor has a sense of humor. He sounds like a real gem! 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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@lcamino -- Lynn, we are practically neighbors! 😉 We love Portsmouth, it's about an hour away. We sometimes go there for their many restaurants. We are trying to get in gear to sell our house and if/when we do our first choice of places to move to would be the seacoast/Portsmouth area but it's pretty pricey out there.
We have gone to Falmouth too, from our little lakeside cabin in Maine on Lake Thompson. Falmouth has a lot of nautical types of places so we have gone there to pick things up for small sailboat, and not far from Freeport and LLBean and many, many outlets. These days we don't even moor the sailboat at our place though.
If you ever do plan to get out this way I would love to meet up with you. I'm always happy to have an excuse to go to Portsmouth!
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 keep forgetting this although I'm signed up it is not of help to me yet because you can not access study labs in the portal so I'm used to calling the study co-ordinator like you call a doctor's nurse. I'm sure I'll make the transition when the time comes. I do have the Mayo app which I like because my appointments, even study appointments, are on that.

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@rosemarya

@amynewheart, Hello, and welcome to Mayo Connect. Am I correct in reading your name, that you are a heart transplant recipient? I am a liver/kidney recipient, and have recently celebrated my 8th anniversary.
We are here on Connect to share our experiences, and to learn from each other, and to support each other. We ask questions and we help to find answers. We do not judge anyone because we realize that we each have different concerns. There are many discussions in the transplant group, and I invite you to jump in anytime.
This particular "This and That" discussion, is kind of a free flowing conversation. So pour yourself a cup of tea, and join us. .
Are you a transplant recipient? Can you tell us a little bit about yourself?
Rosemary

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Hi @amynewheart. Welcome to what I find is a very supportive and informative group of people. I'm sorry to hear about your health issues but as you will learn, we all have significant health problems. If you don't want to answer my question that is PERFECTLY FINE, no pressure! I don't want to prod or have you revisit unpleasant memories. I'm wondering how doctors determined you had dilated cardiomyopathy. My first daughter had the same issue but we found out too late. I am encouraged that you were diagnosed and delighted that you received a heart transplant. I can't imagine how frightening, yet freeing, that process must have been. I too will pray that your body starts behaving itself and responding to the medications as the doctors would anticipate.

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In reply to @amynewheart "Hello" + (show)
@amynewheart

@amynewheart - When I receive a transplant I'm going to try to adopt your incredible attitude of the sacrifice of the donor. I'm not sure I would be thinking that way if I was in your shoes but it is admirable and probably healthy for you.

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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'll keep that in mind : - )

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In reply to @amynewheart "Hello" + (show)
@amynewheart

I had a very difficult year following my pancreas transplant. We found many undiagnosed issues that had been masked under the over-arching Diabetes I diagnosis. I did not have a rejection, but my Cellcept was extremely high at one point. We had to start for Mayo Rochester in bad weather when I was very ill. We made it half way before I started vomiting uncontrollably. I finished the trip knocked out in the back of an ambulance. The second year I was still quite ill but about 50% better than the first year. The biggest difference between us that I identify is that if my transplant fails I will just have to go back to treating Diabetes I. A heart transplant must be much more frightening for you to have rejection episodes. I have been praying for you and will continue to do so. Things got better for me and I pray they will improve for you also. Through it all I leaned on my faith and my readiness to die if that was God's intention for me. I'm still here, so obviously I have something left to do. I have met my initial lifetime goals (some more than once) and have to keep resetting them. Such a problem to have, right? lol I have no regrets based on my actions, so I find it difficult when people ask what I would do over. The first time someone asked me that I responded, "Nothing. I would not be where I am today if I went back and changed anything." Apparently a novel thought. You have a new normal in your life now. Just relax and learn how to live it. XOXO

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@hopeful33250

@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

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@hopeful33250 Teresa, the only help for me is showering as soon as possible when I get out of the pool. Yesterday was one of those days when I really had to force myself to go so it was late when I did. They close at 6:00 on Sundays so I didn't have time to shower. I planned to when I got home but stupidly did not. During the night I woke up really itchy.
After I shower at my club I go into the sauna and put some body cream on, that helps too I think.

I am scrupulously careful about never walking around there with bare feet and the nail tech I go to sanitizes the foot tub thoroughly between clients but darn it, I now have fungus on my big toe. I called to get an appointment with a podiatrist today and the soonest I could get was June 21. I have never had a fungus before, sort of gross.
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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@lcamino, I've lost track of where you live -- midwest?
JK

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@hopeful33250

@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

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@contentandwell, Grrrr - I'm glad that you caught it early and can get it checked out next week. Rosemary

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