Re: hello everyone - back from cleveland clinic

[Guest guest]

Tina Excellent news! That is just great and I am so glad that you

have a great doctor that gives you the time and listens to you, that

is wonderful! Even better he encourages you to move forward that is

awesome! Overall sounds like a good day for you!

Hope everything else has calmed down a little more for you and your

saving your energy for whats important!

Take CAre~

Sandie

suffering succotash, WI 2007, 37

>

> 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

>