Re: hello everyone - back from cleveland clinic

[Guest guest]

Tina... thanks for this update. Keep on keepin' on girl. It's not over 'till the fat lady sings and I ain't openin' my mouth! lol.

Sure get on the list. You don't know how God may work...

Hope all proceeds along ok with Ebby.

Give Kaleb a hug from me.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

hello everyone - back from cleveland clinic

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!TinaIPF/April 07/Ohio

[Guest guest]

Tina

Sounds like a great visit. You were prepared, got what you wanted.

Yes, I always laugh at them calling it Revatio when used for PH and

in trials for PF. I wish they still called it Viagra. I guess I just

like the idea of seeing the look on the pharmacists face as I would

go in to pick up my monthly supply of 90 Viagra. Yes, PH was its

original effort but ED turned out to have a much larger market.

I praise you for going with your questions, getting educated and

making your own decisions. And, I know how Kaleb would influence my

choices too. He sounds so incredible.

>

> Tina... thanks for this update. Keep on keepin' on girl. It's not

over 'till the fat lady sings and I ain't openin' my mouth! lol.

> Sure get on the list. You don't know how God may work...

> Hope all proceeds along ok with Ebby.

> Give Kaleb a hug from me.

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

> hello everyone - back from cleveland

clinic

>

>

> 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

>