RE: Mango Man

[Guest guest]

Mango Man in Paradise eh When I start thinking to highly of myself I use Mango Man in place of Macho Man. Another day in paradise has become popularly used as sarcasm when weather is bad or you are not as up as you'd like to be. I haven't seen you post, so if you're new welcome and if you have been around awhile. Hello. Some of the ref to paradise for our age seem to come from the Jimmy Buffett days. Sounds like you are living the dream. Tell me more about Mexico that had been my dream for retirement. Where do you live now?

Steve 60 from WA IPF 2006 Parkinsons 2008

Reply-To: Breathe-Support To: Breathe-Support Subject: Re: UIP/IPFDate: Mon, 12 May 2008 22:42:41 -0700 (PDT)

Hi ,

Welcome aboard! Your case history sounds very similar to mine. My first hint of IPF came in the summer of 2005 as I had a car accident in which I was struck from the side. Due to chest pains, a CAT scan was performed which revealed scarring suggesting a precondition which could lead to IPF. I retired about 4 months later (age 58) and have been living in Mexico but for summer trips to the states for diagnostic followups on a persistent cough I can't seem to shake. During the summer of 2006, I spent time with a pulmonologist in Northern California who thru a variety of testing concluded I had IPF. Of course, I learned then, as everyone on this forum has at one time or another, that there is no cure, no treatment. As a result, I returned to Mexico for another 8 months. During that time I spent a lot of time web browsing. I learned the only way to actually confirm I had IPF was through a VATS procedure. To finally put any doubts to rest, I returned to the states (Seattle) to have this performed in May of 2007. It was there my preliminary diagnosis of IPF was confirmed by lung biopsy. But there was an upside for I was told my particular form of IPF was of a slowly progressing type. Two months later, while visiting Wisconsin, I learned about the Tracleer (Bosenthan) study to which I applied. Unfortunately, I was turned down for the degree of fibrosis in my lungs was greater than the maximum allowed to be part of the study. Later that same year while back in Mexico, I learned of a Sildenafil study in Florida to which I applied. One of the test they required in advance was a test for Pulmonary Hypertension. Not ever having had that tested, I had both an echocardiogram and an esophageal echocardiogram performed here in Mexico. My PAH turned out to be 65 mm - which exceeded the 50 mm maximum for the study. I bring this to your attention for the simple reason that according to my symptoms my disease was in the very early onset, yet in reality it had progressed much farther than the noted pulmonologists providing my care thought possible. By the way, I turn 61 on May 13th and my finger oximeter (but for flying) remains in the 90's as well. I hope you are able to get in on the Tracleer study but if not you may want to look at a NAC (N-acetylcysetine) study that is coming up nationwide in the fall. I have been on NAC since the summer of 2008. It is the only treatment I am taking for IPF and it seems to have reduced my coughing and phlegm production substantially.

Saludos,

Mike

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[Guest guest]

Hola Steve, I have been a member of this forum for going on a year now. My wife is a member of the "care provider" group. The reason you have not heard from me is that even though we are living the dream, it doesn't include much sitting on a beach putting down margaritas. We are part of about 5000 expatriates from the US and Canada who for the greater part of each year reside here in Mazatlan, Mexico. Some of them, like us, are literally consumed by the various charitable organizations that have evolved here to help those in need. We personally are involved in such groups as Friends of Mexico, Hands Across the Border, American Legion, Salvation Army as Tres Islas as well as our favorite orphanage (which we adopted) Rancho de los Ninos - where more than half the children are disabled. As a result, I have difficulty finding time to browse my emails each

day what more the ability to respond to many of them. I do have my limits, as do all of us with IPF, but I find by staying as busy as I can, there is no time to dwell on how I am feeling or what the future may hold. It is ironic you should bring up Jimmy Buffet. We actually put in a request to take the annual Parrothead Cruise this year but missed out as it sold out within 12 hours of opening. We both thought I may have been taking on too much by doing it but this year may have been my best shot. There is still an outside chance we may win the raffle for two reservations My business card - retired but not dead - has a phrase by Mark Twain on the back of it which reads: "Tweny years from now you will be more disappointed by the things that you didn't do than by the ones you did. So throw off the bowlines Sails away from the safe harbor Catch

the trade winds in your sails. Explore. Dream. Discover." If I remember correctly, Jimmy Buffet had this quote in one of the books he's written. They are words I try to live by. Life here in Mexico is great but for the air quality. Latin America's attitude of "slash and burn" doesn't set too well with those who are super sensative to smoke. In addition the cars (no exhaust controls) and electric plant (which burns sludge) add to the mix that chases people like me indoors. Other than that, the Mexicana's are very kind and friendly, the cost of living is much more manageable than the states, the weather exceptional and the expatriates an unbelievable source of diversity from all walks of life. We plan on living our dream as long as I am able. Our hearts go out to those who are not so fortunate to have been

able to pursue theirs. Our thoughts and prayers go out to all - both victims and caregivers alike - who are dealing with this monster ! Mike