Over 50, in Oregon?

[Charlene Marshall]

Great conversation topic Keith, thanks for starting it! Hopefully someone connects back with you 🙂
Charlene.

[Marianne]

Hi Keith –

Over 50 but not in Oregon.  I am in Columbus, OH.  I was just diagnosed with IPF on May 24, 2019.  My pulmonary doctor had suspected IPF or NSIP but a VATS lung biopsy earlier this month identified it as IPF.  I had been doctoring since September 2018 at which time I was told I had an ILD they just did not know which specific one.  I am in the early stages and only have a dry chronic cough which comes and goes and some breathing issues if I walk uphill, steps or in humid weather.  I am trying to walk at least 1 mile a day.  In two weeks I will stay Pulmonary Rehab – 3 times a week for 8 weeks.  This consists of exercising, learning breathing exercises, nutrition counseling and hopefully meeting others with PF.  I have a friend with lung cancer who recently completed pulmonary rehab.  She had a small class – a couple of people with COPD, heart patients and her.  Hoping to connect with a local PF support group here in Columbus.  My doctors are all at The Ohio State University which has an excellent lung clinic.  I am in the pre-authorization phase for OFEV.  Because it is a Tier 5 specialty drug on my medical plan and has to come from a Specialty Pharmacy.  Hope this helps you.

Marianne

[Keith Nelson]

Thank you Marianne and Doug,

I was first diagnosed January 4, 2019. We discovered my IPF as the result of a scuba diving accident, decompression sickness, back in May 2018.

I start on the medicine in the morning, mycophenolate and prednisone. The Pulmonologist who initially diagnosed my IPF recommended ofev. My local primary care physician thought it prudent to obtain a second opinion, thus the referral to OHSU. The Assistant Professor, MD, Pulmonologist there did another examination, and now spearheads my care.

We are in for quite a ride, my friends – all the best.

Keith

[Doug Batten]

Hi Keith ( @keithn )

Over 50 in Oregon. In fact I have hard time remembering back that far. LOL. I was diagnosed 20 Dec 2018. I am currently being treated in Walla Walla, WA.

[Keith Nelson]

Thank you Doug ( @doug-batten ) for the reply,

Would you let us know how you are doing, what drugs you are taking, and your prognosis?

Keith

[Patsy]

Hi Keith,

Thanks for your story. It blew me away to hear that you contracted this disease from scuba diving. Never knew this could happen.

I’m over 50 in California and was diagnosised with ILD complicated with autoimmune in September 2015. The first diagnosis was IPF but my pulmonologist was hesitent to prescribe any drugs to help due to the autoimmune involvement. So, I started seeing a nutritionist who at least got me on supplements that helped me feel better while I waited for my second opinion at UCSF. Long story short, my Rheumatologist and pulmonologist there diagnosed me with ILD and dermatomyostis. I was also prescribed mycophenolate and prednisone which really helped. I continue to take several supplements one of which is called PneumoVen. It has lots of herbal properties that combat inflammation. Because of the difficulty I’ve had sleeping (byproduct of prednisone) I started using edible cannabis. I began using it in January 2017 and it really works. I do it only at night and eat about 10mg daily. I’m also on O2 at 2 lpm intermittenly, mostly when I sleep or engage in physical activity like exercise, gardening or shopping.

I want you to know that this regimen has worked very well for me for the last four years. All docs are pleased with test results and unless I get a cold or the flu, the good days outweigh the poorer ones. At my last appointment my local pulmonologist reviewed the bloodwork, PFT and cat scan results and said he believes I have many good years ahead. I’m very hopeful he’s right.

Regards,

Patsy

[Doug Batten]

Hi Keith,

I am currently on Pirfenidone. I Have haven’t had any side effects, although I am leery of too much sun. I go to see the Pulmonologist in July and do all the testing again. All he told me was to not believe everything I read on the internet.

[Anne Philiben]

Quite a bit over 50, I was diagnosed in 2013 and live in Bend. So a bit far from Newport.  I’m a perfinidone and OFEV failure.   The side effects Did me in.

[Carl Stecker]

I am 68, live south of Salem. Diagnosed in 2010, started with acupuncture and naturalpathic supplements,kept playing tennis,hiking and traveling thru last year. Had a fundiplication operation 5 years ago to relieve GERD but now back on reduced opremazole Rx.On OFEV for 3 years after problems with Esbiriet.Had exacerbation late last year and now on oxygen at night and any time I mildly exert,using portable oxygen concentrator. Currently getting testing for possible listing for a transplant thru my Kaiser Permamente coverage,scheduled for pulmonary rehab later this summer as recent CT scan revealed lots more scarring.Lucky to be at 90% O2 at rest without supplemental.I used to SCUBA dive,was out at jetty by you 25 years ago! I was just in Bend yesterday and had to use O2 while sedentary as it is at 3500 feet. Got an electric bike to promote movement,greatest purchase ever.Good luck with managing the IPF, soak up those negative ions at the beach and keep exercising as much as you can!

 

[Keith Nelson]

Thank you, Carl.  Which clinic is spearheading your care?

I was at Corvallis Clinic, now migrated to OHSU.

Symptoms at bay, at the moment, seems I may have had this, undiagnosed since about 2015. Diagnosis Jan. 4 this year. I can’t say I have notice any deterioration since I first noticed breathing shortness when exercising, back in 2015.

When I ask my Pulmonologists if they are treating other IPF patients I get this incredulous look, and an “of course” response. When I ask them to specifically share their statistical results of treatment regimens, minus any protected identification information, they responded “we can’t do that”!  So is it esbriet, ofev, or in my case mycophenolate that is “working” and has a “history of success” in your personal practice. They act like I asked them the size of their spouses bra – incredulous. Why?

Also, my Dr. said lung transplant is, or just as well be off the table.  Survival rate issue: 5 years with IPF, vs 5 years with lung transplant – nothing changes – well, except for the 5 years with the lung transplant, FOLLOWS the 5 year digression of IPF!

Maybe I am having a cynical morning – there are times when the medical answers to what we have seem to be not as helpful as they could be, knowing the Dr’s possess the information, or should!

Maybe we’ll be able to share a cup of coffee next time I am in the Salem area.

Best wishes,

Keith

[Cynthia]

Yes, Keith, I think you’re right about the five years FOLLOWING the five years with IPF/PF. That response would concern me. I’m definitely going to investigate a lung transplant, and if my current doctors discourage me from that, I’ll switch doctors.

[Carl Stecker]

@keithn, hey,sure,I’ll even let you have your own cup of coffee!

I have pretty fortunate with Kaiserpermanente @ Sunnyside in Clackamas. You have to advocate for what you want but my pulmonologist has referred me out for testing when I feel it is necessary,though certain things like pulmonary function labs and CT scans mostly run on KP’s annualized schedule. Still,sad but true,there is not much else western medicine can do but Rx and transplant when lungs deteriorate enough. There are always new trials of promising therapies so that if you are early on progression  and it is not aggressive there may be hope.Hey I had 8 years of great functionality up to now and am only starting to consider getting listed for transplant because my condition worsened and I am not getting any younger.

There have been some alternative practices that have arisen recently such as K laser therapy and the herbs through the Wei (sp?) institute. I may investigate those avenues,in part depending on whether transplantation is an option.

Give me a holler if you are in the valley.

CarlGullivers travels’s and please yeah