My First Experience At Cleveland Clinic

Going to the Cleveland Clinic was causing a lot of stress. Not knowing what to expect. I am still thinking they are going to put me on a pill and I would be okay. We get to Cleveland and meet my first PH nurse Kathy. We went through a series of test. She talked to me about a new medication called UT 15 that was in a clinical trial. She explained a little bit about it. That I would have to give myself injections.

I have going through my mind the type of injections my great grandmother had to take for her diabetes. I am thinking I can learn to do that. While we were waiting to see the doctor Kathy came in and said she had a patient that she wanted me to talk to about the medication. By this time my dad and step mom was there with me along with my mother. This lady came in and showed us her site. She showed me a site where a small catheter was in her stomach hooked to a small pump. I looked at her and told her that was not what they were going to do to me. She told me that is how you have to get the medication. Now I was getting really scared.

My doctor finally came in. He explained that was how I had to get my medication if I agreed to go on this medication. At the time the only other medication was inserted through a central line in the chest. After talking it over with my parents we knew we had to do this. We were scheduled for a heart cath and then we would be started on the medication. I was admitted to the hospital and had the heart cath and started the medication.

We could not leave the hospital until we learned how to do the site changes and work the pump. My mom stayed with me and we practiced and practiced so we could go home. They told me that I would be there a couple of days. I wanted to get out of there and back home to my kids. The next morning when Kathy came in I showed her I knew how to do everything. I finally got to go home.

Since I was in a clinical trial I would have to come back every few weeks until we knew if I was on the medicine or not. Being in a clinical trial we did not know for the first twelve weeks if I was on the medicine or not. I knew after the first week that I was on the medicine. I was feeling better and was breathing better. If I wasn't on the medicine then all of this had to be in my head. We went back at the end of the twelve weeks and I was indeed on the medicine. This medicine was saving my life.