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.

@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 hear you loud and clear. I have some wonderful medical professionals, but I would like my life to be more than keeping up with appointments! I hope that your appointment on the 28th goes well. Keep us informed. Teresa

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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 Hi Teresa, I will see the same podiatrist on the 28th to get the results of the testing. I was thinking this morning, why is is that doctors want you to come in to hear results if the results are fine and there is nothing more to do? They all do it.
As I said, he said it could be fungal, so if it is obviously I do need to see him to decide a plan of action, but if not? I hate to spend the money on lasix but if it means getting rid of it more quickly then I will probably take that route. Being an infection it is possible for it to spread, even internally, from what I have read online.
I have had some great doctors and some who are not so great, but overall I am so tired of seeing doctors.
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 Hi JK, I was just thinking about your appointment and wondering how the fungus is doing. What kind of doctor will you see next about it? Teresa

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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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@rosemarya Thanks Rosemary, I really think it is possible that it could be something to do with transplant medications since they can effect your hair, plus the podiatrist did not think it looked typical of fungus. As I mentioned the nail on the little toe lifted but it never looked odd or anything. He said that one was definitely not fungal.
I am anxious for my appointment to find out what he has to say. That nail really has gotten ugly looking though since it lifted from the bottom and got dark in that area from whatever creeping in. After he clipped a bit off he put a bandaid on which I will do now when going out so it will be covered.
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, This did not occur to me before, but just now reading this post, it came to me. My finger nails actually regrew after transplant. The old nail was kind of discolored/darker, and there was a rough joining line where the new one grew in. It seem like it was within my 1st year. I recall fingernails doing it, but not toe nails. Rosemary

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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, how heartbreaking it must have been to lose your daughter. I am so happy for you that your other children are not having any of the same problems, and they are almost grown-up now, right?
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 I went to the podiatrist today. He was very nice, I liked him. The toe in question is lifting from the base so he was able to easily snip a couple of pieces off the nail which will be sent to a lab to see if it is fungus. He said probably but it does not have the typical traits. He thinks it's possible that I may have damaged it somehow. I wonder too about it being connected to the hair loss that many post transplant people have - if your hair can be effected by the pharmaceuticals then couldn't your nails also be effected? They recommend biotin for that. Your nails and hair have similarities and my hair is thinning slightly so I have started taking biotin. The other toe where the nail totally lifted he said was definitely not from a fungus, it's perfectly healthy.
I asked him about treatments and if he could just remove the nail and he said that doesn't totally solve the problem because the fungus is not in the nail, it's in skin under it.
I go in 12 days and then will find out what it is and if it is a fungal infection how we will go forward.
It was a long day, I left the house at around 8:15 to get to the water class, had errands to do along with the appointment, and didn't get home until after 5:00. I was totally bushed by then.
I have been trying to figure out what possibly could have caused it and he did say it could be shoes that were tried on by a person with a fungus. I also asked him about the alcohol soaking and he didn't think that would be much help since the fungus is deep under the nail and the alcohol wouldn't get to it but I am going to give it a try anyway. It can't hurt. How long do you soak for?
JK

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@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, Thank you. I have always wondered about how having prior medical experience would affect someone going thru transplant. I am sure it is quite different for each person, though.
When I first learned that I would need a transplant, I think that I was too frightened and overwhelmed to even know what to ask. I have a vey dear friend who is a nurse, and she along with the health ministry group at my church kept a close eye on me. She told me that when I was ready, she would go over my liver transplant book with me and answer m questions. That was wonderful because she had worked on a transplant floor for a while and was so helpful and she calmed a lot of my fears. And she provided me with some practical advice. Later, I needed to be transferred away from home transplant facility to Mayo, and there the team was very thorough in taking the time to answer any concerns that I had.
Hugs,
Rosemary

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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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@amynewheart, they changed it for the same reason, although it has not
stopped my GI symptoms.  Again I have discovered an additional
failure of my physical body.  I have autonomic neuropathy what is
disrupting my GI processes.

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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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@2011panc They did the same for me. Mine was changed due o the fact I was having horrible GI symptoms. Did they give a reason as to why they changed yours

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