[Don Graybill]

Thanks, Sandy-Richardson, I’ve been taking a very low dose (about .2ML) with juice. Guess I need to try taking in directly into my mouth though I already am struggling with the constipation. You said you take it only when absolutely necessary. If you don’t mine telling me, what would conditions need to be like for your to feel the morphine is necessary?

[Don Graybill]

To everyone — thanks for engaging with me as you’ve done.  I appreciate it!  You’ve given lots of great suggestions and I’ll be checking with my pulmonologist about it.

Yes, Christie.  I was through pulmonary rehab over a year ago.  It would be great if I could do that again but I don’t think that’s possible.

Thanks!

Don

[Don Graybill]

Thanks Eileen, you have been most helpful.  Keep going!  Don

[Don Graybill]

Thanks David.  I appreciate your thoughts and insight.  Don

[Don Graybill]

Hi Fellow IPFers —

I really appreciate the posts you folks have provided.  It sounds though the you are younger than I am and are possibly in better circumstances than I am.  I’m 75 and have had IPF since 2011.  I’m now retired with no intentions of returning to work.  While uncertain, my doctor suspects my PF has been influenced by Rheumatoid Arthritis.  Last year my pulmonologist suggested I check out the possibility of getting a transplant.  I did that at John Hopkins and was told 1) I’m too old and 2) my IPF had not progressed enough.  I think my RA was also a factor against me.   So I dropped the idea.  My pulmonologist has recently again suggested the possibility of a transplant — this time at Philadelphia (I live in south eastern PA).

Quality of life means a lot to me — frankly more so than longevity.  My question is this to those of you who have experienced a lung transplant:  Was it a worthwhile experience for you? Would you do it again?  Personally if I must spend a year or so fairly immobilized in recovery and then struggle with all the issues of transplant rejection, I’d inclined not to pursue that course of action.  I would value your input.  Thanks!

[Don Graybill]

Charlene,

 

I really appreciate your question about hope and want to respond. However I prefer to thoughtfully draft a response offline and then cut and paste. I did this once before several months ago and somehow had many extraneous character interspersed in my test. As I recall you fixed that and indicated a repair was underway to prevent the extraneous material. Has that been done. Thanks.  Don

[Don Graybill]

Thanks so much Char and Ida for your kind words.  In this IPF journey it is real easy to fall into the mode of simply trying to “survive” life.  Instead I want to “thrive” in it. My shiny new marble each day helps me do that!  Don

[Don Graybill]

I’ll share my story.  I was diagnosed with IPF in 2011. For some time now I’m been waking up thanking God for my “shiny new marble” and asking God to help me be a blessing to others this day.  Several years ago I read of an individual who studied the life expectancy actuarial tables to determine the number of days, on the average, that he had to live.  With this info he purchased that many marbles and placed them in a large glass jar in his downstairs workroom.  First thing every morning he’d go down to his workroom and remove one marble from the glass jar and thank God for the new day asking Him to make him a blessing to others throughout the day.

In my case, as I said,  I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2011.  At the time webMD projected the longevity for IPF patients to be three to five years after diagnosis — just as many of you have read.  It did not take me long to quickly figure out that my glass jar had been empty for quite some time.  BUT every morning I can thank God for my “shiny new marble” — another day given to me as a gift from God.  Daily my prayer is to be a blessing to those around me.  God certainly is Good!  These marbles help me to keep life in perspective!
So yes, one can live quite a while with IPF.  I’ve been on oxygen now for about a year and doing quite well!

[Don Graybill]

Thanks Guys for the input.  The purification system I’ve been looking at is a bit more expensive than your leads so I appreciate the suggestions.   But I’m wondering, have any of you done the research to determine what kind of system is needed for combating viruses to make breathing easier for on IPF patient, ie, what size micron particle should it be able to remove from the air?

[Don Graybill]

I’ve been taking caffeine free EGCG Green Tea Extract (300 mg with breakfast and dinner daily) for about five months to combat IPF.  I have no evidence that it has helped or not helped my IPF, but I have had no weight loss during this time.

[Don Graybill]

Thanks Mark.  What you suggests makes sense.  I will follow-up on that,

Say Mark, I’ve not used this forum much and have a question on process.  You’ll notice a larger amount of extraneous text at the front of my post.  Do you have any idea what I may have done to cause this to occur?  Thanks!

[Don Graybill]

Hi Fellow IPF Friends,

What has been your experience in needing additional oxygen during the course of your IPF journey?  I’ve been walking several miles a day inside our house using my primary concentrator at about 4.0 liters.  My oxygen level generally hangs around 89-91%.  However when I walk outside the house with my portable concentrator at 6 liters (the max for this concentrator) I can barely maintain an oxygen level of 88 to 90%.  Have you had a similar experience?  Thanks.  Don Graybill