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Mentor

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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 22, 2018
In reply to @wendydvb "@rosemarya I had a kidney TPX at Mayo in Rochester, MN too. 8/16/18. My sister was..." + (show)
@wendydvb

@rosemarya I had a kidney TPX at Mayo in Rochester, MN too. 8/16/18. My sister was my live donor. Such a blessing. Feeling better overall but still have a lot of pain in my joints and muscles. Pretty sure its the meds, they are still adjusting the levels. I also get my labs done by my local dr. I'm going back for my 4 mo check up and biopsy in mid December. A little nervous about the biopsy. Had one a few years ago and it did not go well. Loved Mayo!

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Wendydvb,
Congratulations on your transplant, and hugs to your amazing sister for giving you one of her kidneys.

I had a deceased donor for my liver and kidney in 2009, and I have been blessed with 9+ years of healthy living.
I remember that the pain gradually faded away after my transplant and I knew right away if I was overdoing it. I think that it took nearly 9 months until I felt completely normal. We are all different though, so don't let my time frame frighten you. I have to add that I was able to go hiking at 5 months after my transplant, although my distance and stamina not back to normal yet.

I never had a kidney biopsy prior to my transplant because my kidney failure came on suddenly due to my liver disease. Your upcoming biopsy should be a whole lot easier because of the location of the transplanted kidney. It is easier to get to for the biopsy samples.

Here are several discussions that might appeal to you as you continue your recovery.
-Still tired post kidney transplant
https://connect.mayoclinic.org/discussion/still-tired/

-What to Expect: Post Transplant Care
https://connect.mayoclinic.org/page/transplant/newsfeed/what-to-expect-annual-post-transplant-follow-up/

-Self-Care Tips for Transplant Patients
https://connect.mayoclinic.org/page/transplant/newsfeed/self-care-tips-for-transplant-patients/
You will find: -Hand Washing 101
-Getting Ready for Flu Season: Should I Get Vaccinated?
-Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It
-There’s a list of “transplant hacks” developed by the experts themselves, patients from our transplant discussion group.

@wendydvb, I invite you to join into any of the discussion groups on Mayo Connect. I look forward to hearing from you.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 23, 2018

I want to share with you a morning post on Mayo Transplant Facebook this morning.
Life-saving kindness: Phoenix women donated kidneys to strangers to save their families http://bit.ly/2POlleq

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 23, 2018
In reply to @rosemarya "I want to share with you a morning post on Mayo Transplant Facebook this morning. Life-saving..." + (show)
@rosemarya

I want to share with you a morning post on Mayo Transplant Facebook this morning.
Life-saving kindness: Phoenix women donated kidneys to strangers to save their families http://bit.ly/2POlleq

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@rosemarya
Thanks for sharing that, Rosemary. I just posted it on my personal FB page. Great story!!

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taarthi | @taarthi | Oct 23, 2018

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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4 replies
chetfreeman | @chetfreeman | Oct 23, 2018
In reply to @taarthi "Hello - I am scheduled to have my kidney transplant surgery in December. My husband will..." + (show)
@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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You will be just fine. Follow the doctors orders to the "T". Take your anti rejection meds as prescribed. Should you get an infection, the doctors will be able to handle it with meds. Congratulations and prayers to you and your husband. Heart/Liver here....

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Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 23, 2018
In reply to @taarthi "Hello - I am scheduled to have my kidney transplant surgery in December. My husband will..." + (show)
@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 Pose these questions to your nephrologist and the transplant team. They have the experience and knowledge to steer you right. Like @chetfreeman said, follow their instructions to the letter!
Ginger

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 23, 2018
In reply to @taarthi "Hello - I am scheduled to have my kidney transplant surgery in December. My husband will..." + (show)
@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 @taarthi I want to say Welcome to Mayo Connect. I am a liver/kidney (2009) recipient and I am happy to meet you. I honor your husband for his decision to be your donor.

As transplant recipients, we learn how to take precautions against infections, and all we can do it to try our best to avoid germs. As others have so wisely shared, talk with your transplant team.
Please, I beg you, put the fear and guilt out of your mind. My advice is to follow the protocol precautions, and enjoy your new life! Infections and colds will most likely occur, but by taking care of yourself and by taking precautions and avoiding crowds you will be at an advantage. My granddaughter knows that grandma doesn't lip kiss or share her cup or spoon etc.

In my experience, a fever is my own sign of infection. So anytime I don't feel 100%, the thermometer is handy.

I want to share this link with you because in this discussion there are members who are talking about living donation as domors and as recipients, You (and husband) might enjoy reading how well they are doing. I know that anyone of those members would be willing to chat with you.

Kidney transplant - The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 23, 2018

@taarthi Here is something from the Pages section of Connect-Tips from Connect Members and the Mayo Transplant Staff about life after transplant.

NewsfeedTop Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed/top-transplant-hacks-patients-share-their-best-tips-and-tricks

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wendydvb | @wendydvb | Oct 23, 2018
In reply to @gingerw "@wendydvb Congratulations on your transplant and how wonderful your sister was able to donate to you!..." + (show)
@gingerw

@wendydvb Congratulations on your transplant and how wonderful your sister was able to donate to you! What kind of a protocol you are on, is it non steroidal? Meaning no Prednisone as a medication. That is what my husband's transplant team used for the longest time and that is why they had to biopsy his new kidney. He has been on prednisone 2.5 mg once a day for the last several months due to low white blood count, but they will be titrating him off of that in the next few months. I think that muscle soreness and discomfort can be a normal sign due to your body getting used to activity again and the introduction of medications.
Ginger

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@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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