Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 , Your post was very moving . AND HERE YOU ARE ...RIGHT ON!!!!! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower hkdawn wrote: We have a saying in HPSland and I'm not sure where it came from. It says, "None of us has an expiration date stamped to the bottom of our foot." When my mom was pregnant with me she had all sorts of complications and everyone was sure she'd never make it to delivery. Here I am. When I was 19 and had to have my colon removed, no one really understood why I bled the way I do, and the doctors told my mom to go ahead and make arrangements for my funeral because I wouldn't likely survive the surgery. Here I am. When I put the HPS diagnosis together and went to NIH the first time (before even showing any PF on my scan) - they told me that if I was average, I had five, maybe seven years left. I was 29. I'm almost 36 now and here I am. When I was diagnosed with PF and entered the drug trial I got the speech about how I might be on a placebo, and what the average rate of progression would be etc. I was told that I'd likely be on oxygen and need a transplant by this time, if I made it this long. I'm not currently on oxygen and not even in the transplant neighborhood yet (although I know it will come one day.) Here I am. It isn't that I don't know the odds and the ramifications of my diagnosis - but at the same time, it's a little hard at this point for me to take life expentancy estimates too seriously. I just try to live life well. Hermansky-Pudlak Syndrome 02 / PF 06 > > > > Hi, Ginny here, from Richmond, VA. Just found this PF site and have > questions. Where do I go to buy an oximeter? Also, I read > somewhere on the PF Foundation site that the average span of years to > live once you are diagnosed is 4 to 6 years, is this correct? Thanks > for any info. you can share with me. Sincerely, Ginny > > > No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.5/1979 - Release Date: 03/01/09 17:46:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 That is exciting! Now I understand how it is that you have such a terrific attitude! I was a music pastor for many years. Later I started a church and pastored it for 15 years (Grace Community in Woodbridge, CA). Now, in my retirement I preach two to three times a month and love it! God's richest blessing, ! Ken R. From: tony <oilfieldcop@ yahoo.com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 2:15 PM No one knows how long you got I been fighting it for going on 15 years so don't let the horror stories get to you to bad. I have both IPF and COPD and all that means is its hard to breath like we don't all ready know it huh. Hey just relax your nerves settle down and take it a step at a time and enjoy yourself as much as you can.Don't think about the regrets get out and o the things you want to do.Even if you think you can't do them try anyhow-ggod lucktony>> Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny> Quote Link to comment Share on other sites More sharing options...
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