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?

@rosemarya

@rosemarya I am a "friend" of the Mayo pages, and I agree, their postings are very good. I always like the postings on Compare Transplant Centers. It is of course more meaningful for people waiting for transplants but I like to keep informed.
JK

@rosemarya and @contentandwell

You transplants folks are such a good team. I'm just envious of how well you work together!

@wendydvb

@gingerw I am on Prograf, Cellcept, Prednisone and BP meds. Still adjusting the anti-rejection meds and steroid at 5mg daily. Hope to bring them all down. I guess i just feel a little frustrated that I didn't just bounce right back after surgery. I'm not good at sitting still. I was however very ill before, so need to be patient. Will speak to dr's at follow up. Get some PT to get moving freely again. Glad your husband is doing well.

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Wendydvb, I can understand your frustration that you didn't just bounce right up after your surgery. Try to remember that we are each unique in how our bodies respond to meds and healing. Don't let the pace of your recovery get you down. You are doing great:-)
Hugs

@wendydvb

@gingerw I am on Prograf, Cellcept, Prednisone and BP meds. Still adjusting the anti-rejection meds and steroid at 5mg daily. Hope to bring them all down. I guess i just feel a little frustrated that I didn't just bounce right back after surgery. I'm not good at sitting still. I was however very ill before, so need to be patient. Will speak to dr's at follow up. Get some PT to get moving freely again. Glad your husband is doing well.

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@wendydvb I also did not "bounce right back" after surgery and was quite ill before my transplant. I had a pancreas transplant and one of the workers at the hospital to me that if someone was skipping down the sidewalk with a smile on their face happily announcing that they had a panc transplant . . . they were lying. She said that pancreas transplants are hard; harder than liver or kidney transplants. My first year was very tough. I was re-hospitalized 9 times and discovered many underlying conditions that had been previously untreated. The second year was still difficult with multiple hospitalizations and continuing adjustments to manage my multiple conditions. It has taken over 7 years, continuing medical care, a back surgery and months of physical therapy for me to be as good as I am now; which I rate as fair. Last spring I was only able to walk 300 steps at a time, now I am now able to walk several blocks. My balance is not perfect but significantly better and although my stamina is still poor I have been able to take several solo trips of significant distance (3 to 8 hours) in the last month. I restarted driving about 3 years ago, making trips to the grocery and local clinic only on "good" days. I am on the same meds as you, except for I have no BP med. I don't know how far out from your surgery you are, but I share my experience to show that recovery is possible – – – and a great deal of work! Carry on and blessings to you.

@taarthi

Hello – I am scheduled to have my kidney transplant surgery in December. My husband will be donating his kidney to me. I have a toddler who will be 2.5 years old at the time of my surgery. I understand that my immunity will be at the lowest for the first 3 months after my surgery and after few months, they will adjust the medicines to a "maintenance mode" where my immunity will still be suppressed but not as low as it was during the first 3 months. I worry about my risks of infection especially from my toddler during the winter time. My daughter goes to daycare but we have decided to keep her home starting December through March in hopes that she would then not bring him as many infections home as she would if she went to daycare. But I am sure she will still fall sick given that it is going to winter. I don't know how I am going to prevent infections from her this winter. I do plan to wash my hands often, wear a mask and be anal about avoiding germs but I cannot always stay away from my daughter 🙁 I feel so confused, guilty and emotional about this as I also think about how much my daughter is going to miss being with me this winter. My worst nightmare is me getting a bad infection and losing my kidney this winter. Can someone please share your experience and give me advise on how best I can handle this winter? Thanks in advance for your response.

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@taarthi as others have commented, check everything with your transplant team. You are obviously doing the best thing in not sending your child to daycare. If she is primarily at home with you she can't possibly bring germs back to you. Hopefully, by the time she resumes going to daycare your body will have a bit more immunity than it did initially with all of the drugs. If I recall, after my liver transplant they discontinued one of the immunosuppressants and decreased the dosage of prednisone.
You are very fortunate that your husband can donate a kidney to you. I hope you have a great recovery, we will be looking forward to hearing more.
JK

@hopeful33250

@rosemarya and @contentandwell

You transplants folks are such a good team. I'm just envious of how well you work together!

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@hopeful33250 I know one thing for sure, we are both very thankful for the gift of each and every day. I was commenting to my son about that this week, and said 2 years ago September I was so sick, afraid to travel, even though the NP said I could, but now "life is good". I am still careful about where we travel, I always will be. It's so wonderful to be able to enjoy our son and daughter, son-in-law, and soon to be daughter-in-law. I am even having 11 people here for dinner on Christmas, and possibly a big Christmas party after Christmas!
JK

@contentandwell

@hopeful33250 I know one thing for sure, we are both very thankful for the gift of each and every day. I was commenting to my son about that this week, and said 2 years ago September I was so sick, afraid to travel, even though the NP said I could, but now "life is good". I am still careful about where we travel, I always will be. It's so wonderful to be able to enjoy our son and daughter, son-in-law, and soon to be daughter-in-law. I am even having 11 people here for dinner on Christmas, and possibly a big Christmas party after Christmas!
JK

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@contentandwell

That just so wonderful! What a life changing experience for all of you.

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

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 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!

@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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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

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.

@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

@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.

@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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@rosemarya

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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