hello everyone - back from cleveland clinic

January 9, 2008

To say the least, it was another busy day at the hospital! First I

had the CT, the on to a different building for the PFT, then on to

the 6 min walk test and then wait to see the pulmonary doctor. Dr.

Parambil is wonderful. He will give me as much of his time and I

need and I needed a lot today, because I was prepared with my list

of questions and concerns. The good news is that my CT showed very

little changed and my PFT and 6 min. walk results had only slightly

dropped. That was the best part, especially since my prior results

had dropped more than 20%. So, I was happy to hear that. The

results of the right heart cath. had revealed pulmonary

hypertension, so we are now treating that with Viagra at 3x per

day. I had no idea it was created for PH treatment, no a libido

aid! I learn something new every day with this disease. In

reviewing my transplant evaluation test results, I was given further

explanation of the antigen count I received and it is at 64%. What

that means is I have little chance of a donor match. That is an

extremely high antigen count. I had already done my research and

new this to be the case, but my question was should I or shouldn't I

keep going with my quest to be listed. The answer was an

overwhelming yes from the doctor. Of course, in reality, I quess I

do want to be listed. Not because I was told to by the doctor, but

because I want to know that I did everything I could to prolong my

life. If it wasn't for my son, who is only 5 years old, I don't

know if I would feel the same way or not. I just know how much he

needs me and I need to be here for as long as I can. Needless to

say, I will do everything I can, including trying to get on the

transplant waiting list, to accomplish that.

Thanks to everyone for being here. This is the ultimate support

group! I can't wait for the get together in Texas and I hope I can

make it!

Tina

IPF/April 07/Ohio

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