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[Guest guest]

Amber,

I don't always read all of the mail now but for some reason I did today. My Dad died at the Cleveland Clinic on December 6th. We had been there for two weeks in Intensive Care. Dad had the most wonderful doctor, Dr. Murthy, a cardiothoracic surgeon. He tried so hard to find an answer for my Dad, but it was just too late. He needed a Y stent inserted, but it kept coming out. So the doc used a straight stent in the trachea. A few days later he put a smaller stent into the right bronchial passage and ballooned the left. Dad still couldn't clear his own mucous and they did a tracheostomy. Everything kept deteriorating (my Dad was 78 and that was against him). He developed a pneumothorax and a guy was ready to put in a chest tube. The incredible nurses on the unit (who had also taken care of me for two weeks) had me paged. I asked that they not do any more to my Dad. They paged the surgeon who talked to them and me and he decided it was time to stop. I feel guilty now about making that decision, and yet I know it was right. Dad was too sick to get his life back, which is why we went to Cleveland. I would recommend Dr. Murthy and the Clinic to anyone. They went way beyond my expectations. We were there for such a long time that we developed relationships instead of just passing through quickly, which is what we expected. Heidi, this post is for you also. This is his story and needs to be told. He was only diagnosed sometime in about August. A Rheumatologist put him on Cytoxan and 60mg of pred and Fosamax. He did get relief from a BiPap machine. But is was just too late. That is why it ended as it did. The damage to his trachea was so extensive that even the stent couldn't be placed. That is why more education is needed for the medical profession to be able to recognize and care for people like my Dad. A pulmonary specialist missed it. An ENT missed it. The radiologist missed it. Finally our family doctor figured it out and had his tests read again, and don't you know they were consistent with RP. He had been sick for I think over 6 years. Sorry folks. I guess I am just getting angry that nobody found this in time. But my Dad had a good life. Take a look at his picture on the Memorial Page. That was taken on my parents 53rd wedding anniversary. I hate that you all have this, but am so glad that you have been diagnosed and have the correct ammunition to fight it. This probably isn't the story you want to read, but being here is the best medicine. It is a wonderful group of people and I learned a lot here. I took that information with me to all of the physicians we saw here in Cincinnati and then to Cleveland. Almost nobody knew what I was talking about. So keep getting the word out. You are all wonderful.

Cathy Donohoue