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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.

animesh | @animesh | Feb 26, 2018
In reply to @animesh "My wife got diagnosed with PH1, there is no cure and LKT is only option. We..." + (show)
@animesh

My wife got diagnosed with PH1, there is no cure and LKT is only option.
We have evaluations and registration appointments coming up in Mar-12, 2018 at Rochester. We live north of LA.
We are scared and I am super nervous about how I can do the best as caregiver. Looking forward to you and this group to show me the path and help along the way.

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Thanks @rosemarya

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rose999 | @rose999 | Feb 26, 2018
In reply to @rosemarya "@rose999, Did you get an appointment schedule? You will receive a multi page schedule with everything..." + (show)
@rosemarya

@rose999, Did you get an appointment schedule? You will receive a multi page schedule with everything you need to know about your tests and procedures. It is either mailed, or given when you arrive for registration.
Be prepared for a marathon-like adventure! Dress comfortably, and carry a light jacket or sweater. Don't be alarmed if you schedule is changed as you proceed through the testing. Sometimes things are added and rearranged, but you will be informed as the day goes on.
I'll be thinking about you.
Rosemary

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Thank you. I am up for that. I also had St Louis Univ save some of my brother’s liver tissue (frozen.). My sister-in-law said we could donate it to whatever test could use it. He was thought to have died from FSHD MD but autopsy said liver disease. With the type of MD he had more muscles wasted away than expected. At his death he had only a couple muscles left.
Maybe the muscle wasting came from the liver disease as well as the dystrophy. MD has those muscles. Research is the future.it is like putting a puzzle together that has no picture until the end.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 26, 2018
In reply to @animesh "My wife got diagnosed with PH1, there is no cure and LKT is only option. We..." + (show)
@animesh

My wife got diagnosed with PH1, there is no cure and LKT is only option.
We have evaluations and registration appointments coming up in Mar-12, 2018 at Rochester. We live north of LA.
We are scared and I am super nervous about how I can do the best as caregiver. Looking forward to you and this group to show me the path and help along the way.

Jump to this post

@animesh, I believe in miracles!

Have you looked at the Transplant Pages section of Connect? Here is the link - https://connect.mayoclinic.org/page/transplant/
Or you can access "PAGES" at top of this page. The Newsfeed section contains many "Miracle" stories as well as up-to-date reliable information presented my the Mayo staff.

There is also an active conversation among other new caregivers who share your concerns and fears about caregiving. https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/

Rosemary

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 26, 2018
In reply to @2011panc "I am feeling some anxiety and request prayers during the next few days as I prepare..." + (show)
@2011panc

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

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Thinking of you @2011panc and your husband. Remember to breathe, especially the exhales. If you take care of nice, slow exhales, the inhales will take care of themselves. 🙂

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JK | @contentandwell | Mar 3, 2018
In reply to @2011panc "I am feeling some anxiety and request prayers during the next few days as I prepare..." + (show)
@2011panc

I am feeling some anxiety and request prayers during the next few days as I prepare and undergo back surgery. As a transplant patient there are so many things that can go wrong. I have waited so long for this surgery; coverage refused by insurance, appeals rejected, strong pressure to use opioids, physical therapy put on hold, extra trips to pain clinic and injections, changing insurance, and changing dates and times of surgery. All the while living with the excruciating and never-ending pain. I am so hopeful for a resolution and at the same time so fearful that there will be another roadblock. Knowing your thoughts are with me eases my mind. Thank you for letting me share.

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@2011panc How are you doing? I presume the surgery is over and I hope it did not leave you with too much discomfort. If it did just try to remember that the discomfort will pass and you will be happy that you had it done.
I hope you are home by now and that you are improving every day.
JK

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2011panc | @2011panc | Mar 13, 2018

Thank you for asking @contentandwell , I was home last Wed evening - Mar6, This first week has been difficult. It has been a little worse than I expected, but I have made it through. The initial pain was incredible and I became grateful for the opioids, although not for the side effects. I became completely impacted and had to work on that a few days. Yesterday I felt the cloud lift. I was making my way around the house and just had a moment when I knew I had reached the pinnacle of bad and was on the easy side of the slope. It is not all dancing and roses, but everything feels better and my emotions and mental state are back on track. I fully expect to be cleared to restart rehab after my post-surgical visit next month.
For now I'm just doing as much walking as I can in short bursts around the house. As soon as I feel able I will restart some of the home exercises I was using before. Thank you everyone for your thoughts and prayers. I truly felt covered in prayer.

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2 replies
JK | @contentandwell | Mar 13, 2018
In reply to @2011panc "Thank you for asking @contentandwell , I was home last Wed evening - Mar6, This first..." + (show)
@2011panc

Thank you for asking @contentandwell , I was home last Wed evening - Mar6, This first week has been difficult. It has been a little worse than I expected, but I have made it through. The initial pain was incredible and I became grateful for the opioids, although not for the side effects. I became completely impacted and had to work on that a few days. Yesterday I felt the cloud lift. I was making my way around the house and just had a moment when I knew I had reached the pinnacle of bad and was on the easy side of the slope. It is not all dancing and roses, but everything feels better and my emotions and mental state are back on track. I fully expect to be cleared to restart rehab after my post-surgical visit next month.
For now I'm just doing as much walking as I can in short bursts around the house. As soon as I feel able I will restart some of the home exercises I was using before. Thank you everyone for your thoughts and prayers. I truly felt covered in prayer.

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@2011panc happy to hear that things are looking up and you’re back on track. You must be really looking forward to your post-surgical visit so you can start rehab. I presume that your doctor has Ok’d The walking so that will help too.

I had the same problem from opioids, that was really miserable. Ironically I have the opposite problem from my immunosuppressants so now I am back to taking something else. UGH
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 13, 2018
In reply to @2011panc "Thank you for asking @contentandwell , I was home last Wed evening - Mar6, This first..." + (show)
@2011panc

Thank you for asking @contentandwell , I was home last Wed evening - Mar6, This first week has been difficult. It has been a little worse than I expected, but I have made it through. The initial pain was incredible and I became grateful for the opioids, although not for the side effects. I became completely impacted and had to work on that a few days. Yesterday I felt the cloud lift. I was making my way around the house and just had a moment when I knew I had reached the pinnacle of bad and was on the easy side of the slope. It is not all dancing and roses, but everything feels better and my emotions and mental state are back on track. I fully expect to be cleared to restart rehab after my post-surgical visit next month.
For now I'm just doing as much walking as I can in short bursts around the house. As soon as I feel able I will restart some of the home exercises I was using before. Thank you everyone for your thoughts and prayers. I truly felt covered in prayer.

Jump to this post

@2011panc Happy for you - Home and on the way to recovery!
Be careful not to over do it and treat yourself to rest when you need it. My prayers will keep on coming.
We have missed you.
Rosemary

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

@chill28, Good Morning, and Welcome to Mayo Connect. On Connect, we believe that no one should be alone as they go thru any medical or health situation. I am a transplant recipient with no medical background. I want to invite you to this discussion where many members are sharing their transplant experiences from a variety of transplant perspectives. We are always here and look forward to meeting you and chatting with you and offering support during you time leading to your transplant.
We look forward to hearing from you.
What are some ways we can support you? How can we help you today? What do you want to talk about?
Rosemary

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 9, 2018

I just wanted to share a Youtube video with you all to lift your spirits. This comes from Great Ormond Street Hospital in the UK where many children are awaiting a transplants. This is a song dedicated to those children. This is a good sing-along song for all of us! https://www.youtube.com/watch?v=lQ_TdIqNsqI&feature=youtu.be

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