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.

@cmael

My transplant date was 4/5/18 and I’m feeling very good and am very grateful. Before my transplant I had 13% function and thought I wasn’t sick enough to need a transplant. Of course, I can see how I’m feeling much better now. My concern is that I’ve lost so much hair. I’ve always had thick hair. Has anyone else dealt with this?

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Hi, @cmael ! It's Rosemary. You look amazing! We sat across from each other in the Rochester Mayo waiting room waiting for our labs to be drawn. Do you remember?
That is a beautiful outdoor setting that you and your husband are enjoying

After my transplant (liver/kidney) my hair also thinned. One of my doctors told me I could take Biotin 2.5 - 1X daily. It is over the counter. I think it was the dermatologist at my 4 month checkup and my team approved it for me. I also used a mild shampoo and conditioner.

You might contact your nurse coordinator if you don't have an appointment soon. Hugs.

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@cmael

My transplant date was 4/5/18 and I’m feeling very good and am very grateful. Before my transplant I had 13% function and thought I wasn’t sick enough to need a transplant. Of course, I can see how I’m feeling much better now. My concern is that I’ve lost so much hair. I’ve always had thick hair. Has anyone else dealt with this?

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@cmael very nice picture! I know the feeling well of not knowing if you want a transplant. I was ambivalent also until the end when I got really sick and gained so much weight from fluid retention.

Regarding the hair loss, I had a problem with that too and asked the NP on my transplant team. She said to try biotin, that helps with many people and it did with me. The only downside I have heard about it is that it can cause inaccurate results on the TSH test for thyroid so my endocrinologist told me to stop taking it a couple of days before that test He said it does not cause a thyroid problem, just test inaccuracy. So check this with your transplant team to see if they will approve it for you.
JK

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@cmael

My transplant date was 4/5/18 and I’m feeling very good and am very grateful. Before my transplant I had 13% function and thought I wasn’t sick enough to need a transplant. Of course, I can see how I’m feeling much better now. My concern is that I’ve lost so much hair. I’ve always had thick hair. Has anyone else dealt with this?

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@cmael, I lost a bunch of hair after my transplant, too! I think by the end of the first year post, it was back to normal. Quite a shock when you’re used to having it thinned out a bit because you have so much hair! I celebrated 7 years yesterday and coincidentally I had a hair cut scheduled with a new hairdresser. She remarked how thick and full my hair was! I’m pretty sure yours will come back too.

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@rosemarya

Hi, @cmael ! It's Rosemary. You look amazing! We sat across from each other in the Rochester Mayo waiting room waiting for our labs to be drawn. Do you remember?
That is a beautiful outdoor setting that you and your husband are enjoying

After my transplant (liver/kidney) my hair also thinned. One of my doctors told me I could take Biotin 2.5 - 1X daily. It is over the counter. I think it was the dermatologist at my 4 month checkup and my team approved it for me. I also used a mild shampoo and conditioner.

You might contact your nurse coordinator if you don't have an appointment soon. Hugs.

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Hi Rosemary, yes I remember meeting you at Rochester Mayo. It was so nice to talk, even though I was called for labs too soon. The picture was taken a yr ago when we were in Finland, visiting my brother. Re: my hair, I have bought Biotin, but need to ask if it’s ok to take it. After looking up Prograf and hair loss, it wasn’t clear if it would be permanent or not. It’s nice to hear some feedback.
Other than hair loss and arthritis, I’m doing very well and am very thankful. My husband has dementia and I’m hoping the stress won’t affect my health. So far it’s pretty manageable.

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@mollyv

@cmael, I lost a bunch of hair after my transplant, too! I think by the end of the first year post, it was back to normal. Quite a shock when you’re used to having it thinned out a bit because you have so much hair! I celebrated 7 years yesterday and coincidentally I had a hair cut scheduled with a new hairdresser. She remarked how thick and full my hair was! I’m pretty sure yours will come back too.

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mollyv
Glad to hear that you are doing well:-)
Congratulations on your 7 year anniversary. Did you do anything to celebrate or to remember the event?

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@cmael

Hi Rosemary, yes I remember meeting you at Rochester Mayo. It was so nice to talk, even though I was called for labs too soon. The picture was taken a yr ago when we were in Finland, visiting my brother. Re: my hair, I have bought Biotin, but need to ask if it’s ok to take it. After looking up Prograf and hair loss, it wasn’t clear if it would be permanent or not. It’s nice to hear some feedback.
Other than hair loss and arthritis, I’m doing very well and am very thankful. My husband has dementia and I’m hoping the stress won’t affect my health. So far it’s pretty manageable.

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I am always on the look-out for the green transplant satchels that organ recipients carry with them. We kind of stand out in the crowded waiting room for our morning labs. I find that there are some patients who are also on an appointment schedule similar to mine, and often cross paths throughout the day.

You are not alone in your situation with your husband's condition. There is a Caregivers Discussion Group on Connect for you when you want to meet others. https://connect.mayoclinic.org/group/caregivers/

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@cmael

Hi Rosemary, yes I remember meeting you at Rochester Mayo. It was so nice to talk, even though I was called for labs too soon. The picture was taken a yr ago when we were in Finland, visiting my brother. Re: my hair, I have bought Biotin, but need to ask if it’s ok to take it. After looking up Prograf and hair loss, it wasn’t clear if it would be permanent or not. It’s nice to hear some feedback.
Other than hair loss and arthritis, I’m doing very well and am very thankful. My husband has dementia and I’m hoping the stress won’t affect my health. So far it’s pretty manageable.

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I want to add this to my original reply about hair loss.
In addition to my hair thinning and falling out, my main concern after transplant was my fingernails. They were growing oddly, they were discolored, and they were in the process of regrowing new ones to replace the old ones and there was a raggedy ugly ridge where they met. When the fingernails were regrown completely, I stopped taking the biotin.

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@rosemarya

I want to add this to my original reply about hair loss.
In addition to my hair thinning and falling out, my main concern after transplant was my fingernails. They were growing oddly, they were discolored, and they were in the process of regrowing new ones to replace the old ones and there was a raggedy ugly ridge where they met. When the fingernails were regrown completely, I stopped taking the biotin.

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@rosemarya My bottle of biotin says "hair, skin, and nails" on it so I guess it helps with all three. I keep it on the kitchen table because it says to take it with food and when I remember to I do. My hair is pretty normal now but my nails are always weak.
JK

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@cmael @rosemarya @contentandwell we've noticed that my husband's hair has thinned since his surgery but he has said more than once that his nails seem stronger. I'll have to see if he wants to try biotin and maybe ask about it when we go for his check-up in a couple weeks.
JoDee

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