Staying Positive While Waiting for a Transplant

Rosemary was diagnosed with liver disease in 2001. Eight years later, her illness progressed to cirrhosis and end-stage liver failure, also triggering kidney failure. Following transfer from her home state, she underwent a liver and kidney transplant at Mayo Clinic’s campus in Rochester, Minnesota, in 2009.

We asked Rosemary to share her experience staying positive while waiting for her transplant. Here’s our interview with her.

Q: What were your sources of support and inspiration while waiting for your transplant?

I found the support that I needed in my faith, my husband, and my family and friends.

My faith provided me with a solid spiritual foundation. I prayed. I talked with my pastor for guidance. One day he presented me with a prayer shawl with each stitch representing a prayer that was offered for me. When I wrapped in it, I felt like I was being wrapped in prayers. It offered me comfort and hope, especially when I was too weak to pray myself.

My husband was my caregiver. He was with me every step of the way. We cried, we prayed, we hugged, we talked, we sat in silence, we listened and we grew in faith. As my health failed, time moved slowly for us. At night we went to bed disappointed because I had not received “the call,” but we remained hopeful that maybe it might happen the next day.

I reached out to others: family and friends. I asked for prayers, and they responded by adding my name to prayer networks at their churches. They sent cards and messages of prayer and support. They visited. Our church congregations provided meals and sent money to help us with added expenses.
For me, staying positive meant that I had to accept the ever-changing events in my life, one long day at a time.
Q: Did you document your wait in any way?

I began keeping a journal. It doesn’t contain any inspiring revelations or deep thoughts. It does give a firsthand account of my attempts to stay positive during my waiting period.

Here are some entries from my journal:

• I need to self-talk — to repeat things in my mind, over and over. What I am going to do?
• I have a desire to crochet or work a jigsaw puzzle to occupy my hands. I need a diversion during this waiting.
• The transplant recipients are such an inspiration, as I see how well they recover and how quickly they recover. I find myself reaching out to others, and we share conversations.
• No scheduled appointments today. Slept late. Plan to make this a relaxing day. Enjoyed a piece of cinnamon loaf sent from home.
• Normal/comfort foods are just that — comforting and satisfying. Amazing!
• Walked up 4 steps! Briefly felt normal. Recognize the teeny steps forward — one step at a time. Got onto the transport shuttle without help!
• I have five layers of wrapping on each leg due to edema. And I can barely move, due to ascites. I don’t know with whom to identify: a mummy or Lazarus? I prefer Lazarus! I had a laugh about that.
• I am so exhausted that I can’t even look ahead as far as tomorrow. I just want to sleep. I wish I could get some sleep.
• I talked on the phone today. After updating what is going on with me, we had a normal conversation — everyday chat. That was a blessing.

Q: How did you keep your support system updated on your condition as you anticipated a transplant?

When serious complications developed and I was transferred to Mayo Clinic’s campus in Rochester, Minnesota, my husband began a group email to our family and friends at home. The responses came immediately during the critical times. He read them to me. Later, I wrote in my journal, “They have been our strength and backbone during all of this. So many personal prayers and words of encouragement are special.”

Q: What would be one piece of advice you’d have for patients who are currently waiting for a transplant?

For me, staying positive meant that I had to accept the ever-changing events in my life, one long day at a time.

About Rosemary: Rosemary lives in central Kentucky and serves as a volunteer mentor at Mayo Clinic Connect. Her favorite pastimes are knitting and crocheting, and she especially enjoys the challenge of creating sweaters. She has also started a prayer shawl ministry at her church. Rosemary also loves solving Sudoku puzzles, playing the violin at church and taking an annual hiking vacation with her husband.

HELPFUL LINKS

• Read a story about Rosemary’s role as a Mayo Clinic Connect mentor.
• Explore Mayo’s Transplant Center.
• Share experiences with others at Mayo Clinic Connect’ s Transplant Group.
• Request an appointment.