This and That and Talk - My Transplant

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.

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/

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?

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.

@rosemarya

@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.

@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

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.

I had a heart/liver transplant on July 4, 2017. I lost almost all of my hair. Like you, I have always had plenty of hair so it was quite a shock. My hair started slowly making a comeback about 4-5 months post transplant. Now I am a little over a year out and I have a full head of hair again and ironically it's darker (my friends suspect I am dying my hair). My poor brother has been bald headed for years and I have joked with him in the past (not now) that I would trade my hair for his heart!!! Anyway, your hair will come back and maybe even better. Good luck, be patient and hang in there.

@cmael Congrats on your transplant! I have not had mine yet but the people I follow on Instagram have had the issue with losing hair (some have even lost their hair or cut it to donate). I couldn't tell you all the remedies they have suggested except biotin (ask your nephrologist first if you take this as a supplement). I do know that it is temporary. I don't know if that is because meds change and decrease over time or the body adjusts but those who have discussed it have all had transplants within the past year. It looks great in the photo!