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Fri Feb 1, 2019, 05:04 PM

I'm 70 years old. (Updated 2/1/2019)

I posted earlier about trying to figure out why I have been getting short of breath. X-Rays and MRI showed scarring of the lungs, but none of the blood tests gave a definitive answer, so I had to go in for a lung biopsy. (Not a whole lot of fun. Four days in the hospital.)

Turns out that there is only one place in the US that actually looks at the lung tissue and figures out what's going on. Takes a couple of weeks to get the results back. So, finally, I went in to see my pulmonologist on Wednesday. Conclusion: IPF - Idiopathic pulmonary fibrosis. So, what you ask is IPF. I means that you are developing scaring on your lungs and they don't have a freaking idea why. (Idiopathic is a big word that means "We don't know".) But the average life expectancy for me is 3-5 years. Maybe.

Up until the last couple of years there was nothing that could be done. The scarring is irreversible and there were no medications. However, things are looking a little (and I emphasize the word little). There is a new drug on the market (new as in only a couple of years old) that seems to have the ability to slow down the scaring process. Goody.

Minor problem. IPF is one of those 'orphan diseases' so, lots of research for meds, not many folks buying. Result: medicine is EXPENSIVE. Like, would you believe $95,000/yr? WTF! Who the hell can afford $95,000 a year??

But, I love my doctor! 1. When I saw him on Wednesday he had already talked to my insurance company and had gotten them to approve the med. So, my co-pay would only be $3,000 a month. 2. He had also called the vendor (this is not something you pick up at your local pharmacy) and they called today. They have a program that helps with the co-pay. So, first they check the easy discount. I qualified. Dropped the co-pay to only $2,000 a month. Still completely impossible for me to pay. So they checked the second tier plan. I qualified for that as well.

Now here's the part that totally blew me away. The second tier plan picks up where the first tier ends. Believe it or not, tier 2 pays for EVERYTHING! No co-pay at all. (Note: I'll believe it when I get the meds and no bill.) But, we will certainly give it a try! Note, there is no cure and I will never get any better, but the meds are supposed to significantly slow down the scaring, so hopefully I won't get worse, or at least the progression of scaring will slow down.

We will see what happens, but I am feeling a little more optimistic.

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Arrow 29 replies Author Time Post
Reply I'm 70 years old. (Updated 2/1/2019) (Original post)
Stonepounder Feb 2019 OP
nykym Feb 2019 #1
Stonepounder Feb 2019 #6
GeoWilliam750 Feb 2019 #22
CaliforniaPeggy Feb 2019 #2
Stonepounder Feb 2019 #7
pangaia Feb 2019 #3
Stonepounder Feb 2019 #8
pangaia Feb 2019 #10
Freddie Feb 2019 #28
pangaia Feb 2019 #29
woofless Feb 2019 #4
Stonepounder Feb 2019 #5
justhanginon Feb 2019 #9
samnsara Feb 2019 #11
iluvtennis Feb 2019 #12
Hekate Feb 2019 #13
pazzyanne Feb 2019 #14
Stonepounder Feb 2019 #16
pazzyanne Feb 2019 #19
ancianita Feb 2019 #15
pnwmom Feb 2019 #17
murielm99 Feb 2019 #18
JDC Feb 2019 #20
sinkingfeeling Feb 2019 #21
Duppers Feb 2019 #23
Stonepounder Feb 2019 #26
Duppers Feb 2019 #27
Sloumeau Feb 2019 #24
Stonepounder Feb 2019 #25

Response to Stonepounder (Original post)

Fri Feb 1, 2019, 05:08 PM

1. Wishing you good luck

and a lot more years

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Response to nykym (Reply #1)

Fri Feb 1, 2019, 05:29 PM

6. I'm keeping my fingers crossed.

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Response to Stonepounder (Reply #6)

Fri Feb 1, 2019, 09:46 PM

22. I will second the wish for lots of good luck and many more years!

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 05:08 PM

2. Best of luck to you, my dear Stonepounder!

That sounds very promising indeed.

Hang in there!

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Response to CaliforniaPeggy (Reply #2)

Fri Feb 1, 2019, 05:29 PM

7. I'm really doing my best. Thanks!

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 05:08 PM

3. All of this gradual good news means.. you will be fine.. Why else all the good news???

So-

Chill !!

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Response to pangaia (Reply #3)

Fri Feb 1, 2019, 05:30 PM

8. I really like the way you think!

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Response to Stonepounder (Reply #8)

Fri Feb 1, 2019, 06:23 PM

10. In July 2012 I was diagnosed with difuse large B-Cell lymphoma.

Had a huge tumor on my spine.

For some reason, I didn't freak out.

Spinal surgery, 4 chemo sessions, 4 lumbar punctures and a bone marrow aspiration in 3 months after and so far I am clear. Last scheduled CT scan is next month.

So think positive...

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Response to pangaia (Reply #10)

Sat Feb 2, 2019, 04:26 AM

28. My brother was diagnosed with an aggressive Non Hogkins Lymphoma

In 1997. He was told it might respond to chemotherapy. Or not.
He just celebrated his 66th birthday.

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Response to Freddie (Reply #28)

Sat Feb 2, 2019, 12:24 PM

29. Wonderful to hear.


I was given an 80% chance of living for 5 years.
"So far" so good.
SOunds lke your bro is over the hump. :>)

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 05:24 PM

4. Good luck pal.

I'm living with end stage emphysema and can relate. Lung disease ain't for sissies. Fortunately, there are no prescription issues I have to deal with. Hope the new med helps you. Hang in there.

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Response to woofless (Reply #4)

Fri Feb 1, 2019, 05:28 PM

5. Thanks, woofless. And best back at ya!

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 05:55 PM

9. All the best to you Stonepounder. As woofless said, this

stuff ain't for sissies. It sounds like you have a good Doctor that really cares. That's a biggie!
I have COPD and and asthma and know any breathing problems are really difficult. Mine seems to be stable at a kind of crappy stage but I get along and am happy for that. You never know, the way modern medicine is they are always coming up with new aids and cures. You keep on keepin' on and let us know how you are doing from time to time.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 06:42 PM

11. send me the name of them med privately

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 06:57 PM

12. Goodness is raining down on you - from $95K/year to $0 - way to go! Much luck to you.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 07:08 PM

13. Best of luck to you, Stonepounder. My uncle had IPF-- no idea at all where it came from.

I'm glad there's some new medications and that they've been made accessible to you.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 07:15 PM

14. Stay positive, Stonepounder!

There are medical miracles happening every day. I was diagnosed with a fatal autoimmune disease (MPA) and given 5 to 15 months to live with medications. That was 5 years ago. I was lucky enough to get a rheumatologist who had trained at the Mayo Clinic when they were working on a trial therapy. He offered me the chance to take the infusion therapy with some life threatening risks during the first set of infusions, and I decided to take the therapy. I still have to go in for infusion therapy every year, but not a big deal. Stay open to new medical interventions. It is a worthwhile endeavor! Wishing you the best results possible. Stay strong.

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Response to pazzyanne (Reply #14)

Fri Feb 1, 2019, 07:24 PM

16. Good to hear! I'm hoping that meds can keep up with my progression,

(of lack thereof). My doctor is great. He's Nigerian (don't nobody try and give me shit about immigrants!!) but the first time I saw him he spent over an hour with me taking a REAL history, asking questions and LISTENING.

And here in N. Ky we only have one hospital chain available to us. It's called St. Elizabeth and they are also super. (They saved my life about 13 years ago when my heart go wonky) AND they have a partnership relationship with the Mayo Clinic.

So...I'm staying optimistic. And I have y'all on DU as well.

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Response to Stonepounder (Reply #16)

Fri Feb 1, 2019, 07:28 PM

19. FYI, my rheumatologist is from India!

I'm with you in defending immigrants and their skills/ talents.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 07:21 PM

15. Glad your prospects are good, your doctor stepped up, and you've been cared about.

Enjoy your days.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 07:24 PM

17. That must be so scary. I'm glad the money issues aren't making it worse -- thank goodness

for your caring doctor.

I hope the medicine helps and you have many good years in front of you.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 07:25 PM

18. I am glad there is some reason for you to hope.

Hang in there. We love you.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 07:32 PM

20. Best of luck. Thanks for sharing this also

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 07:56 PM

21. Wishing you all the best. Great if you end up with medicine and no copay.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 10:39 PM

23. You are a positive role model. A persistent steel lady.

My hat's off to you in respect.

I've read some DUers whine about their problems that are miniscule in comparison to even my relative little ones.

I read your wonderful posts here every day where you've shown not one inkling of self-pity. Now to learn of your battle gives me just more respect for you. So glad you found this great physician.

Wishing you much luck. Keep us posted please.


P.S. wondering where this great physician is located. Thanks.

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Response to Duppers (Reply #23)

Sat Feb 2, 2019, 02:44 AM

26. Goodness, never even thought to look at it that way.

I am not and never have been an alcoholic, but I know a fair about about AA, just from knowing people struggling with it and watching a lot of TV. I think they are right on the money with their Serenity Prayer. "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

I try and apply that to my life and I thank my parents for teaching me, even before I learned the prayer. (and bear in mind that I'm a Christian Agnostic - now try and figure out what than means, LOL)

I live in the Northern KY area, just south of Cincinnati, OH. If you look at a map, find the point where Indiana, Ohio, and Kentucky come to a point. During the winter, when the trees a leafless, we can see the Ohio River and into Ohio from our back yard. We've been to see my Pulmonologist in two different offices, one is about 3.5 mi from us and the other about 6 mi. Believe it or not, being close to St. E was one of the big things that we looked at when deciding where to live when I retired. And boy am I glad we did.

(P.S. minor detail, I'm a steel gentleman )

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Response to Stonepounder (Reply #26)

Sat Feb 2, 2019, 03:26 AM

27. Big whoops. My apoligies, sir.

Steele gentleman.

We had a friend in Cincinnati we used to visit, so I'm familiar with the area. Glad you found your great doc there.



Btw, guess I came across as insensitive to some DUers but when an older 70-something guy wrote a long, self-pitting post about his poor sex life, it left me , especially when there are folks here with real problems, like yours.

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Response to Stonepounder (Original post)

Fri Feb 1, 2019, 11:40 PM

24. If I could make some suggestions...

I am going to some suggestions that I believe may help you. I would like to ask you to consider eating the way that is recommended for lung cancer patients. A Typical diet for a lung cancer patient would be healthy for most people, and it emphasizes eating those things that keep your lungs strong. I will provide some links below. If you like what you see, great. If you do not, please feel free to ignore my advice.

1. https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/patients/treatment/stay-healthy/nutrition.html

2. https://sarahcannon.com/for-patients/learn-about-cancer/lung-cancer/nutrition.dot

3. https://www.verywellhealth.com/lung-cancer-fighting-foods-2249268

These are just some suggestions of some things you can try. If I were going to give you one tip, it would be to consider raising your protein intake. Humans are mostly water. If you set aside the water in the human body and the bones, what you have left is what I call the "soft stuff". This "soft stuff" consists of such things as skin, hair, nails, muscles, tendons, ligaments and internal organs, including the lungs. All of these items mostly consist of protein. If you are not getting enough, you will impair the ability of these body parts to repair themselves by making it harder for these body parts to replace dead cells.

The internet has protein calculators that help one calculate how much protein one should be consuming based on body weight. Just do a Google.com search on the following words (not in quotes): body weight protein calculator. If you find that your protein consumption is low, and if you like eating things like meat, dairy, and eggs, consider upping how much you consume of them. If you do not like these or do not want to eat more of these, consider perhaps getting some protein powder or protein bars if you can afford it. If you are vegan or vegetarian, they make protein powders from strictly vegetable-based sources that they sell at common health food stores like GNC. Test to see how having a protein shake before breakfast feels (If you end up eating a little less breakfast because of the shake, that is ok, just reduce your portion size of breakfast if you need to, or drink part of the shake at breakfast, put it in the fridge, and drink the rest at lunch). If you would like to do your own search, on what to eat, I recommend going to Google.com and searching on the words "diet" and "lung cancer".

Your body can do amazing things, but it needs certain building blocks to do its job. Make sure that your body has what it needs, and good luck.

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Response to Sloumeau (Reply #24)

Sat Feb 2, 2019, 02:31 AM

25. Thanks for the info.

I took a quick look at the links you posted and I will certainly take a closer look tomorrow. What I saw in a really quick glance is that I'm not doing to badly. I eat and clean up and Mrs. Stonepounder does almost all the cooking.

We a lot of chicken and other meats like pork and beef, about in that order. Lots of veggies. I love berries and usually keep whatever was on sale around as a snack food.

I'll start worrying when I lose some more weight. The last job I held before retirement was horrible and I put on a dangerous amount of weight. After I retired I managed to lose about 100 lbs. and then sort of plateaued, but I would really like to lose another 30-40 lbs, which would put me at a really good weight (I'll dance for joy of I can get to about 180-190, and be content if I can get anywhere below 200).

The one thing I am going to really work on changing is how I eat. For most of my life and certainly for the last 10 years or so, breakfast is a cup of coffee and a donut. Before that, there was no breakfast. Big meal at around 7:00 pm, and then snack as desired we maybe a sandwich before bed). Really gonna have to change that schedule. (Note: we are both night owls. Get up at around 11:00 - 12:00 and go to bed around 2:00-3:00 am. Ain't retirement grand!) I'm going to have to talk to the pharmacist again, since I'll be taking my meds 2x/day and I have to eat a full meal before taking it, since it tends to upset the stomach of you don't put a fair amount of food in before taking it. I need to find out how far apart the 2x should be.

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