Re: Me and Dr. on

[Guest guest]

Jack,

I'm so glad that your appointment at Duke went well and I'm happy you have a good first impression of Dr. on. I think in the long run you will be equally satisfied with his care.

It does seem like you would be a good candidate for Perfenidone. The studies were conducted with people who are in the early stages of IPF as Bruce pointed out. Seems tailor made for you.

Was the assistant with him that day Terry Haran? She's a really terrific person.

Once again I am so sorry that we didn't get to have lunch that day. It was somewhat frustrating but I could not leave my Dad (even though that day he was wishing I would leave. Ha ha)

Good luck with getting all you need to accomplish done. It's a lot to do and then the job of finding a home down here. There is no shortage of lovely homes, you'll find the right thing! In the meantime just continue to take good care of yourself!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Group <Breathe-Support >Sent: Sunday, January 25, 2009 12:46:07 PMSubject: Me and Dr. on

I won't attempt for a few days to read the 488 messages in my in box. I'll go straight to Dr. on and me.

He is charming, courteous, smiling, interested and, most of all, willing to put up with my wise-ass attitude and ways. Well, so was everyone else at the hospital.

I was put through the usual: PFT's, six-minute walk, weight, height, stick-your-tongue- out procedures. According to Dr. on, I aced everyone of these. He said my disease progress was not very much and had progressed in four small steps. I don't have HP, my heart, blood presure, various other organs and all the other things they withdraw were excellent, so I may have a few good years to go. He did say that one never knows when this disease takes a sudden change for the worse.

He also told me that a trial being conducted in Japan is coming to a close with some hope that a treatment may result. He also said he hoped there would soon be an FDA approval for a similar trial in the US. He mentioned a drug which sounded like Prednisone (spelling?).

I asked him if he would take me on as a patient. At first he scowled, then laughed, and said yes, he would be delighted. On specifics, he said I should take three tables a day of N-Acetyl to really get a positive effect. His assistant gave me a home recipe for a runny nose that sounds something like Ayr Saline Nasal Rinse, but much cheaper. I will share this with the group in a future email.

Despite the long drive from Maine to NC, the trip was well worth it. I feel more confident in my health and its prospects. I left here in minus 21 weather and two feet of snow and arrived in NC to plus 20 degrees and nine inches of snow.

The big disappointment of the trip was I didn't get to meet Beth. We were to meet for lunch following my appointment, but at that time her father became ill and was taken to the hospital by ambulance. She may have already posted this to the group. I had an email from her on my return home that he was doing fine. My next appointment with Dr. on is in July, so I am sure she and I can have lunch then. Jack79/IPF - UIP/dx06/05 Maine