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.

@amynewheart

I was diagnosed at the age of 26. Fortuanately for me I worked on a cardiac floor at the hospital. One night when we were slow we hooked ourselves up to the monitors and while walking i was found to have a heart rate in the 170s. I had previously had several episodes of dizziness but always found an excuse for it. From there my primarycare doctor order my echo and found my decreaed ejection fraction and so my journey began
Amy

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@amynewheart - I totally agree although it is not always easy to accept God's plans when they don't jive with our own. I'm dealing with this as I wait to see who is going to donate me kidney (hopefully from a living donor).

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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 - Sorry it has taken me so long to reply. Life is out of control right now. Finally manage to arrange five days away with the family. My husband just said forget it but he did not get a vacation last year so I was determined to do something even if it was simple.

Have you heard back from the lab if you have a fungus? I sure hope it is from shoes too short, or damaged somehow. Seems that would be the best scenario.

I soak in a combination of 50% water and 50% bleach for 10 minutes. I did it daily for about three weeks then went to every other day and slowly weaned off when I saw that the fungus stopped spreading down my toenail towards my cuticle. The liquid (med or bleach mixture) is why I think it helps because the fungus is under the nail and it is hard to get to the source which is why I keep cutting my nail as short as possible so I can reach the fungus under the nail instead of waiting for the nail to grow out.

Hope to hear a good report. Glad you like the doctor!

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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 - Has your transplant team given you any opinion about whether the transplant medications impact nails?

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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 - I too am tired of seeing doctors and I haven't even started the transplant process yet! Hang in there and best of luck on the 28th!

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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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@lcamino, well I called today to find out, I would have cancelled Wednesday if negative but they said it was positive. I have decided to go ahead with the laser. Supposedly they can cure it in 3 - 4 treatments with that. That will be out of pocket, ($799) but I worry so much about infection spreading which I have read is possible so with my drugs it could happen easily. As my husband always says, "it's only money". As if... I do think in my circumstances though it is best to get it taken care of as quickly as possible.
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 - I agree with your decision. Some things just are not worth risking. My dad always used to say, regarding money, "Well I'm not taking it with me." Of course being wise with purchases is necessary but spending this money is being wise.

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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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@lcamino Lynn, your family has sure had many more health problems than most. I truly sympathize with you for what you have gone through.
As a parent I know how difficult it is to have deal with any issues with our children. Thankfully my two have pretty healthy, pretty typical. On an aside, when they were young I always stressed to my son how important it was to get enough sleep so his G.I. Joes could be strong to fight things off. I really think the fact that they did not get the typical number of contagious diseases had a lot to do with me insisting that they get adequate sleep. Thankfully neither had chronic conditions unless you consider my daughter's hearing disability to be that.
When she was three I noticed that when I spoke to her she would look at me intently and say "What?". I brought that up to her pediatrician who was supposed to be the best in Manchester. He felt that since he could tell that she was highly intelligent that her mind was operating on a different level. A mother knows and I took her for hearing tests and sure enough she did have a hearing loss so at 4 she started wearing hearing aids.
My son has never had any serious health problems, he really does have a strong constitution so he too has avoided the contagious diseases like the flu and colds.
I will be hoping and praying that you get the transplant soon.
Jane

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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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@lcamino Lynn, I would love to have those days back - or maybe not. My son was notorious in college but he settled down afterwards thankfully. Now I could not wish for a better son or daughter.
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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@lcamino Interesting question, Lynn, but now that it has been diagnosed as fungus I presume the two are not related except for the fact that I have a compromised immune system.
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 - I have a Masters in Social Work and specialized working with the deaf so I am aware that hearing loss at an early age can be a major issue with language development. I'm assuming your daughter has caught up and doing fine? Good for you for following your instincts!

I appreciate your prayers but I don't want the transplant soon. My kidneys are plugging along and still doing enough so I'm hoping I don't need one until my youngest daughter has graduated from high school (May 2018) and I can have a big graduation party for her. I do need prayers that a kidney is provided by some kind, selfless soul.

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