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Mentor

How Do I Cope When I Feel Awful?

Posted by Rosemary, Volunteer Mentor @rosemarya, Jul 8, 2017

Before my transplant I felt awful. It felt as if the air around me had turned into a heavy sticky molasses. Every movement was difficult. Thinking was slow and labored. Eating was a constant challenge. Even time moved slowly as I awaited a liver transplant.

Does any of this sound familiar to you? How did you cope? What practical suggestions will you share with others who are experiencing this now?

What questions do you have?

Interested in more discussions like this? Go to the Transplants Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 21, 2017
In reply to @mikejones "I waited in Jacksonville, 825 miles from home. I was legally separated from my wife so..." + (show)
@mikejones

I waited in Jacksonville, 825 miles from home. I was legally separated from my wife so I was alone. Fortunately, a home church brother had lived in Jax and gave me some numbers of people he knew in the church there. These people who did not know me helped feed me and house me in homes and a hotel. I drove to Orange Park three times a week to attend church. They helped buy my gas so I could. I was extremely uncomfortable. Pruritus was driving me crazy. I was raw from scratching. I had to unbutton my pants and hold them together with a belt due to ascites. I had a huge hernia in my groin from ascites and sitting was difficult. But I still got dressed and drove to church three times a week. They prayed publicly and privately for me and encouraged me greatly. The call for the transplant came while I sat in church. They visited me in the hospital. I owe my life to them as surely as I do the surgeons. My secret to surviving the waiting was to find people who cared and would help.

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Welcome to Connect, @mikejones.
I see from your profile that you had primary sclerosing cholangitis (PSC) and that you are a liver transplant recipient. Glad to have you join the discussions here in the Transplant group (https://connect.mayoclinic.org/group/transplants/). We look forward to getting to know you and your transplant story. How are you doing today?

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 21, 2017
In reply to @mikejones "I waited in Jacksonville, 825 miles from home. I was legally separated from my wife so..." + (show)
@mikejones

I waited in Jacksonville, 825 miles from home. I was legally separated from my wife so I was alone. Fortunately, a home church brother had lived in Jax and gave me some numbers of people he knew in the church there. These people who did not know me helped feed me and house me in homes and a hotel. I drove to Orange Park three times a week to attend church. They helped buy my gas so I could. I was extremely uncomfortable. Pruritus was driving me crazy. I was raw from scratching. I had to unbutton my pants and hold them together with a belt due to ascites. I had a huge hernia in my groin from ascites and sitting was difficult. But I still got dressed and drove to church three times a week. They prayed publicly and privately for me and encouraged me greatly. The call for the transplant came while I sat in church. They visited me in the hospital. I owe my life to them as surely as I do the surgeons. My secret to surviving the waiting was to find people who cared and would help.

Jump to this post

@mikejones, Welcome and thank you for sharing.
I am happy to have you join this discussion. And I am especially happy to meet you, a fellow transplant recipient. I also had PSC and I easily recognize those awful symptoms that you have named.
I invite you to look at the Transplant discussion groups that Colleen provided, and to join in at anytime.
Rosemary

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