JACK AND BRUCE, ET ALL, A LONG ONE!!

[Guest guest]

Jack......

I don't have words to accurately describe how your words made me feel.

You SO spoke for me, every single point. I'm 64, and was dx in Feb 05 with IPF +. Almost a year into it I calmed down and tried to do what everyone had been telling me to do....."get on with your life, take one day at a time." Difficult, at best, to do. Coincidentally,it was around that time that I saw "The Shawshank Redemption" whichhas a Freeman line that goes "ya gotta get on liven', or get on dyin'" Worked for me, then I found this group. There was at that time a group member that had finished her journey and much of the talk was of her. I couldn't handle it. I was trying to "get on with it" and felt that reading about it everyday just served to keep it front and center on my frontal lobe. I asked to be removed. After a few months I found my way back and have been so blessed by this group. Now I can't imagine being without.

That said Id like to comment on something Bruce said in his response to Sher in "shortness of breath". Again, he is so right on.

Now to someplace where I don't want to go.................I don't know the right or wrong of this, whether I am sharing or dumping. I'll ask your forgivness in advance if I end up dumping............4 - 3 - 2 years ago my stock answer was."yeah but that's way down the road somewhere. I should mention.......big fat clubbed fingers on the small keys of a laptop does not promote no typos.

Anyway, we are down that road. This past Friday/Saturday I started noticing a downturn in my function. By Sunday my concentrators couldn't keep up : one goes to ten lpm, one to 3 lpm plus it fills tanks that go to 6 intermittent. Monday morning the mere act of standing up dropped my sats to 64%, a record for me. Called 911, they had some 6 size tanks so we hooked up my combo and got 12-15 from the medics and went to the hosp. In the ER they got me a C-PAP mask set at 15 lpm and my sats went to 99, unbelievable. Chest xray showed pneumonia, which we took as good news, as opposed to a substantial advance of the IPF, pneumonia we can treat and have some possibility of some return. No radiologist here so they electronicly sent the exray to Anchorage to be read. Report came back Wed.......no pneumonia.......positive advancment of the IPF. They continue to hit me with IV antibiotics and IV steroids. They

may send me home Sunday to see how I handle it, We are arranging for more oxygen, and my son, this is a young man that walks on water. JACK, again this is a relationship that has always been good, the last 4 years have served to make the relationship overwhelmingly wonderful. One of so many blessings that have come to me amidst all this stuff. We are also alerting family, be ready. They started me on a benzo on Wed following the news, calms me down which calms my breathing. As many of you know.........this is the start...they are going to hit me 1/2 gm of morphine 2xday while here and then send some home with me. They don't believe I can generate enough O2 which would put me back here. The good news is that I've worked with these docs and nurses for over 21 years. There is nothing they won't do, bend rules about lenght of admit, etc. And so much support!!

And I just told someone that I prefer being short and direct.......oh well, Hypoxia reigns.

To all newbies..........my advice to you is to print Jack's response.....put it on the fridge, in your car, carry one with you. 2 years ago my neighbor, a 41 yo, dog musher outdoorsman, healthy was sitting by the fire reading a book. He stood up, and fell down very dead. Not a sound not a complain, nothing to indicate that he felt anything. My response for the next week or so was "lucky SOB" (not shortness of breath). I('ve wondered through the years whether, if the end is the same, it would be better to go out quick or linger. I'll take the long road anyday.......read Jack again. When my sats are 68-70 and I'm in the hurt bag, gasping I certainly do think of ways to quicken the process. BUT THERE AIN'T NO WAY. NO MATTER WHAT. WITH MY WIFE AND DAUGHTER BY MY SIDE I CAN TOLERATE ANYTHING.

So, there you have it. I am sorry it is so long.

Really, my intention was to share this part of my journey with you.

please kinow that with the lorazepam an hour ago, spirits are good, heart/mind is good.........Think I'll find someone to make me some brownies, circa 1965. Never fear, therapeutic use only.

jim IPF 2005

Alaska

Subject: Re: How PF has improved my lifeTo: Breathe-Support Date: Friday, March 27, 2009, 2:02 PM

Since I was dx nearly five years ago, I have done a few things.

1. I reached the age of 80. To my surprise, it was a kind of freedom, to be wholely myself without concern for what others may think or do.

2. I learned that family - my children, my grandchildren, my great grandchildren hold me in considerable esteem. To have a four year old call you on the phone and sing happy birthday to you in a sweet voice

is like hearing angels.

3. I learned that my circle of friends was larger and more loving and concerned than I ever imagined, and

that they spanned ages from 6 to 90 .

4. I learned that PF is just another element in my life, a thought that I have incorporated but yet

respect, and that my life goes on very much like it did before, but with the annoyance of a drippy

five year old's nose, and an aggravting cough. No one but me pays these things any attention.

5. I learned that I now live my life with a heightened sensitivty to things I used to take for granted:

a magnificant surnise, a flock of ravens in my yard, a mama deer and her kid in the woods, a moose dancing across the highway before I get too close to cause an accident, the neighbor's cat chasing

a squirrel, only to lose it when it races up a tree trunk.

6. I learned that I love life and that with the right attitude life loves me, even with the PF.

7. I learned that I want to make it to 100, and that I have the will and the means to do so if I coddle the devil in my lungs and work to keep him still.

8. Most of all, I learned to love this great Air Family which has given me more love than I deserve and

taught me more about life than I thought there was to know.

Thank you - all of you - I love you.

Jack79/IPF - UIP/dx06/05 Maine

From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Friday, March 27, 2009 1:40:20 PMSubject: How PF has improved my life

Ok.....I know to some, especially newcomers, this is an insane topic.But, I know there are many ways in which the diagnosis and subsequentevents have actually made my life better. I know things I've gained. I'mgoing to reserve my list a bit and just want to hear others answer.While none of us would have chosen to have PF, I think it's important toremind ourselves of the good aspects of our lives and to instill amongthe newcomers the hope, not of a cure, but of a good life. So, what haveyou gained or what is better than before or what have you done sincediagnosis that you might not have otherwise?