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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
Ginger, Volunteer Mentor | @gingerw | Feb 16, 2019
In reply to @rosemarya "@threerrr3, As I read through the recommendations by other transplant patients, I can sense that you..." + (show)
@rosemarya

@threerrr3,
As I read through the recommendations by other transplant patients, I can sense that you are going to be the best prepared patient in the transplant department! I like all of these suggestions because they don't add bulk to your suitcase. One small item that I found helpful was a package of ear plugs which were handy for getting a nap or some sleep on a busy hospital floor.

@des46893, Pill organizers are the handiest thing ever! When I received my transplant, my husband purchased one in the patient medical supply shop at the hospital. I would like add that an alarm on phone or watch is a good way to keep up with medication schedule.

@danab, Great reminder about the phone charger!

@contentandwell, I could not have used a fleece jacket because it would not have fit over my IV's. I settled for the ever stylish hospital gown and robe (I'm not sure that all hospitals have robes, though) Sometimes a gown frontwards, and another one backwards does work though.

@cmael, I remember being so embarrassed when this happened to me. I wanted to apologize to my nurses, but they said have none of that. I think that the nurses and aide are unsung heroes.

@jolinda, I didn't know there was an option for direction of the incision.

@threerrr3, Will you share this information with your sister?

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@threerrr3 @rosemarya Rather than a light weight fleece jacket, perhaps a baby blanket or shawl to throw over your shoulders. I can see where a jacket might intrude with I vs.
Ginger

REPLY
jolinda | @jolinda | Feb 16, 2019
In reply to @rosemarya "@threerrr3, As I read through the recommendations by other transplant patients, I can sense that you..." + (show)
@rosemarya

@threerrr3,
As I read through the recommendations by other transplant patients, I can sense that you are going to be the best prepared patient in the transplant department! I like all of these suggestions because they don't add bulk to your suitcase. One small item that I found helpful was a package of ear plugs which were handy for getting a nap or some sleep on a busy hospital floor.

@des46893, Pill organizers are the handiest thing ever! When I received my transplant, my husband purchased one in the patient medical supply shop at the hospital. I would like add that an alarm on phone or watch is a good way to keep up with medication schedule.

@danab, Great reminder about the phone charger!

@contentandwell, I could not have used a fleece jacket because it would not have fit over my IV's. I settled for the ever stylish hospital gown and robe (I'm not sure that all hospitals have robes, though) Sometimes a gown frontwards, and another one backwards does work though.

@cmael, I remember being so embarrassed when this happened to me. I wanted to apologize to my nurses, but they said have none of that. I think that the nurses and aide are unsung heroes.

@jolinda, I didn't know there was an option for direction of the incision.

@threerrr3, Will you share this information with your sister?

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My donor was able to determine the direction if the incision for her kidney to be removed. I've heard of people having it taken out from their bellybutton but she didn't get that as an option.

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almula | @almula | Feb 16, 2019
In reply to @jodeej "@threerrr3 congratulations on your upcoming transplant! When my husband's had his liver transplant last July he..." + (show)
@jodeej

@threerrr3 congratulations on your upcoming transplant! When my husband's had his liver transplant last July he was on lifting restrictions for 4 months. He is still careful now with lifting if he is turning with the weight.
Best of luck and blessings,
JoDee

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Hi, I had my liver transplant last September but I started lifting after 4 months. They told me I must make some exercises to return back my muscles. I like to share the post-transplant experience. Best lucks and have a nice weekend. Jasem

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 16, 2019
In reply to @almula "Hi, I had my liver transplant last September but I started lifting after 4 months. They..." + (show)
@almula

Hi, I had my liver transplant last September but I started lifting after 4 months. They told me I must make some exercises to return back my muscles. I like to share the post-transplant experience. Best lucks and have a nice weekend. Jasem

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@almula, Connect is where patients share their own experiences to support and encourage others. You are invited to tell your story.
Why did you need a liver transplant and how long did you have to wait?
I have a transplanted liver and kidney. At 4 months post transplant, my only exercise was to walk. How were you able to lift weights in such a short time? We’re your doctors okay with that?

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almula | @almula | Feb 16, 2019

3 to 4kg i think its ok what do you think?

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threerrr3 | @threerrr3 | Feb 17, 2019
In reply to @rosemarya "@threerrr3, I am happy that you will soon receive your kidney. Your sister is an angel..." + (show)
@rosemarya

@threerrr3, I am happy that you will soon receive your kidney. Your sister is an angel on earth.

I have both a transplanted liver, and kidney. I got them both at the same time from same donor. What you said about medications being hard on our organs is something does concern me. Was your kidney monitored after your liver transplant? When did you (or doctors)first notice that your kidneys were affected? How did they know?

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They monitor it and every year the creatine level and gift clearance got worse by a few points but after 20 years the clearance had gotten real bad ..so it’s all about the numbers .. but I think now more then back then when I had my liver transplant I was on high doses of prograf and imuran and prednisone .. today I don’t think they start you and leave you on such high doses..they tapered them down to 1/4 of what o was taking and I’m good with that but it was to late on my kidneys .. so we all have to monitor our own blood test also .. we know our bodies more then anyone and if something doesn’t feel right ask and get checked .. all in all I think if you watch your creatine level it will go up but point that out to the doctors or ask ..I would like to thank everyone for all the messages and advice and tips so greatly appreciated..
Thank you Rose

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1 reply
threerrr3 | @threerrr3 | Feb 17, 2019
In reply to @almula "Hi, I had my liver transplant last September but I started lifting after 4 months. They..." + (show)
@almula

Hi, I had my liver transplant last September but I started lifting after 4 months. They told me I must make some exercises to return back my muscles. I like to share the post-transplant experience. Best lucks and have a nice weekend. Jasem

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Good for you ! Are you saying lifting weights ? Wow that’s awesome ..Yes I’m so burnt out right now , so I’m hoping to be able to work out more after ..thanks for the help ❤️

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JK | @contentandwell | Feb 17, 2019
In reply to @threerrr3 "They monitor it and every year the creatine level and gift clearance got worse by a..." + (show)
@threerrr3

They monitor it and every year the creatine level and gift clearance got worse by a few points but after 20 years the clearance had gotten real bad ..so it’s all about the numbers .. but I think now more then back then when I had my liver transplant I was on high doses of prograf and imuran and prednisone .. today I don’t think they start you and leave you on such high doses..they tapered them down to 1/4 of what o was taking and I’m good with that but it was to late on my kidneys .. so we all have to monitor our own blood test also .. we know our bodies more then anyone and if something doesn’t feel right ask and get checked .. all in all I think if you watch your creatine level it will go up but point that out to the doctors or ask ..I would like to thank everyone for all the messages and advice and tips so greatly appreciated..
Thank you Rose

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@threerrr3 My creatinine levels went up from the immunosuppressants after my liver transplant too. I have to have lab work monthly. I have been directed to drink 80 - 100 ounces of non-caffeinated beverages a day, and doing that my creatinine is under control.
JK

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1 reply
threerrr3 | @threerrr3 | Feb 17, 2019
In reply to @contentandwell "@threerrr3 My creatinine levels went up from the immunosuppressants after my liver transplant too. I have..." + (show)
@contentandwell

@threerrr3 My creatinine levels went up from the immunosuppressants after my liver transplant too. I have to have lab work monthly. I have been directed to drink 80 - 100 ounces of non-caffeinated beverages a day, and doing that my creatinine is under control.
JK

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That is so good to know that they have figured out away to help slow that down .. I’m sure over the last 21 years there have been a lot of discoveries in treatment . So happy it worked for you .. good for others to know out there also .. ❤️

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threerrr3 | @threerrr3 | Feb 19, 2019
In reply to @charicen "I have had a total of three transplants. My first was a liver transplant in April..." + (show)
@charicen

I have had a total of three transplants. My first was a liver transplant in April of 1995 (age 22). My second one was another liver transplant in May 2007(age 34) due to failure of the first transplant due to unclear cause. I then had a kidney transplant in November 2012 (age 39) due to the antirejection meds taking their toll on my kidneys. I was fortunate enough to have my mom be my living donor for my kidney transplant. I am coming up on my 46th birthday this coming Tuesday (December 4). I am thankful for all my donors and being able to still be here. Prior to receiving my kidney I spent 2 years and 3 months on dialysis, which is definitely not a fun way to live.

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Hi was wondering how you we’re doing ? I’m going to be having my kidney transplant soon .. as we had talked before about having multiple transplants .. of my liver transplant was on 1998 and now kidneys on 2019 .. I was wondering with all you have been thru how are you doing today ? I know Transplant’s don’t last forever which is sad but I feel we can make our best effort to prove that wrong ...I guess I’m quite nervous about my up coming kidney transplant.. it’s not so much the transplant I guess my biggest fear is how long is my liver going to hold out even after I get a new kidney .. I guess I’m just talking out my fears ..

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