OUR JOURNEYS

Caregiver Story

Michael Rivera

"I have never known or felt so close to someone like Delia. I love her so very much, and would change places with her in a second."

- Michael Rivera

I was at the mall with my wife Delia preparing for our upcoming move to Europe when she first experienced symptoms of PH. We were about to take the stairs to the second level when she became faint and could not climb them. I took her to the emergency room, but they could not find anything wrong with her, and told her to see our family doctor the next day. I will never forget when the doctor told me to follow him to a private room. He told me that Delia was very sick and needed to be put in the hospital immediately. He said she could die, and that there was no way she could make our planned trip to Europe the next week.

While Delia was in the hospital, I got word that my little sister was dying of cancer. I chose to stay with Delia. My sister died 3 days later. A week later I began to feel tired and very weak I thought it was just stress, but Delia kept telling me to go to the doctor. I could not bring myself to leave her for one minute.

Michael and Delia RiveraI finally went to the doctor and he told me that I had cancer. He told me he wanted to start radiation and chemo right away, but I told him about Delia and that I could not leave her right now, that I had to wait until she was stable. He told me I needed to start treatment as soon as possible, but I told him thank you and left his office.

I drove around for about four hours, debating how to tell Delia or if I was going to tell her at all. When I got home, Delia asked me about the doctor's visit, but I simply told her the doctor needed to run more tests, and I changed the subject. The next week, I kept getting calls from the doctor's office asking me when I was going to start treatments and Delia began getting suspicious about all these calls. I finally had to tell her. She told me I needed to start the treatments immediately, but I told her I was going to wait tell she was stable and placed on the transplant list.

I needed to be sure that Delia was going to be ok well before I did my treatments. Eventually, I had the operation to remove my cancer, and I went through radiation, but refused chemo. I had to retire from my job, but I have now been cancer-free for ten years.

I have never known or felt so close to someone like Delia. I love her so very much, and would change places with her in a second. I think God every day that we are still together.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.