Keith Nelson
Forum Replies Created
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Thank you – just now going through the process. Very useful and informative information.
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I love Dr. Greenspan. He is a very inspirational professional – living near his facility would be great. However…
In listening to the podcast he is enlightening on the problems with all or nothing thinking. The solution “just breath” is problematic to me. If I quiet my world, focus on my breathing, my mind immediately focuses on my breathing, what my lungs are no longer as capable of doing as they once were. I can sense it with every quieted breath. My mind turns to focus on what I don’t have. Perhaps not “all or nothing” in that sense but not a settling process. I really have no problem relaxing. I have no problem accepting the condition I have. My lungs will never be what they once were. Fortunately at my last check-up a few months ago, they are not deteriorating. However I am new to this, first diagnosed on January 4. Only started the meds May 31. Thank you Dr. Greenspan for the insight to focus on what we have, rather on what we no longer have.
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Hello Charlene,
I wonder about this? The Pulmonary Fibrosis Foundation had a database of patients, patients with IPF that it “was” maintaining on a voluntary basis. PFF stopped that process due to lack of funding. In the article above, it identifies: “Healthcare organizations can take a shortcut through this part of the process by purchasing an off-the-shelf vendor solution for population health management, risk scoring, and risk stratification. As interest in data-driven population health picks up, the number of vendors offering innovative, cost-effective products is on the rise, says KLAS.” So, say your Dr. wants to generate a patient database, VENDORS are lurking everywhere to offer that “for-a-fee” service. There is so much complexity for the Dr. to initiate this process, and they all belong to larger, much, much more bureaucratic medical practices/clinics/hospitals/Universities, etc. there is scant chance of any practitioner ever being able to generate such a database of patients. Sadly!
If the PFF already has the database, and lacks the funding to continue its use – that tells us all something – it is a marketing issue, not a patient-centered issue. In other words to generate the data, the end game, how it is going to be marketed seems to be an overriding criteria.
As for Linda’s offering, my first Pulmonologist, upon diagnosis had the very same response “here, take ofev” and off we go. Nothing more! I agree, I smell a rat in the ofev system, there is a reason these Pulmonologists are so eager to hit you with ofev and be off to the adverse symptom races! In my case, I declined. My PCP went for a second opinion. We went to Oregon Health and Science University. They discovered the Pulmonologist was “wrong” with the initial diagnosis… imagine had I started their recommendation – ofev! Rather, I have Nonspecific Interstitial Pneumonia – approached with different medications – prednisone and mycophenolate motefil.
We are treading in very precarious waters!
All the best Charlene and Linda,
Keith
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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
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Devil’s bargain!
My first Pulmonologist simply prescribed ofev, and rather Cavalierly too.
As I moved to Oregon Health & Science University, the Assistant Professor there has me on mycophenolate & prednisone. But, this regimen just started today. Esbriet and Ofev are evolving into their own problematic outcomes – it “may” ebb or stop the progression of IPF, but the side effects are destroying any quality of life. And based upon the “flash briefing” nearly half stop the treatment due to the drugs’ side effects.
The “Devil’s bargain” – IPF vs drugs/side effects
I really appreciate all who are sharing their first person experiences here in the forums. Thank you.
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Hello Mark,
Our “local” medical research university is located up in Portland, OR, about 130 miles distant.
They are the local experts. Not with the reputation of National Jewish in Denver, nor the mighty Mayo, but one with a stellar reputation, none the less.
Keith
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Thank you for sharing your insight, Mark. It seems this affliction interrupts our otherwise normal life. Mortality was always “out there” – but not in our present day to day existence. “Health” is and has always been very important. If something is amiss, we get it fixed, heal, and move on. IPF is evil. What life was like unfolding before us, before IPF, is where we would like to be. IPF has other plans.
I am fortunate. Lucky, perhaps. The only “absolute” change in my life, how my life was unfolding prior to my January 4, 2019 IPF diagnosis, is no more scuba diving. Imagine, just imagine, a life without scuba diving (I hope this elicits the intended chuckle). Not many people my age have that has a passion. Those of us to do, appreciate the opportunity to visit another world, a world that lies below the ocean’s surface. Right here on our own planet. A short boat ride, or ‘kick-out” from shore. Another world.I do not golf. My wife would love it if I did. I can swing a club, hit (nearly 100% of tiems I swing) a golf ball. Most of the time we can find where it lands. Sometimes I get lost in the search for that particular ball’s landing site, and come back with a few other errant landings, very proud to have actually multiplied the golf balls, by merely hitting only one. Also, I get to pretty much see and tour the whole golf course. My spouse plays a very boring game. Every stoke, here ball goes more or less straight down the fairway. Always visible lying in the center of the well-groomed grass. Or up on the tightly groomed “green” where the intended “hole” (target) is located. Moreover I have always found “golf” to be silly. Rather than take the most swings possible, rather than tour the whole course, the “goal” of golf is to take as few swings as possible. Get your ball in the hole viewing/touring the least amount of the course as possible. And beat the heck out of the very same ball for 18 consecutive holes. I was taught the finer points of the game, along with some very basics back in my undergraduate PE “Golf” course, years ago. “before golf balls had dimples!”
I do not have any “symptoms” imposing upon my day to day activities, at this juncture in our relationship. I have likely had IPF for nearly 4 years prior to diagnosis. We could tell on our hikes, hikes that included elevation gains, some quite abrupt, that my “wind” was not like it used to be. We, my wife, and our Primary Care Physician wrote it off as normal aging.
On May 1 last year, all that came to an sharp end. I suffered a decompression sickness (DCS) incident, at the end of my 26 dive, in 45 days, my 796 career dive. I am one certification short of being an instructor, with my PADI Divemaster certification. As a result of the recovery process, and soliciting the guidance of a hyperbaric physician to spearhead the quest to determine the “why” question answer to my DCS, after three months of testing and analysis, the result is IPF. Thankfully the DCS resulted in my condition being taken seriously. Now we know! Lucky me…
So what do I do, now that I know? I am trying to educate myself, as much as one can, via the internet, and scholarly journal articles on IPF. Educate myself on what all the tests and analysis have indicated about my condition, and where IPF and I are in our tragic relationship. Like I said, I have no outward, debilitating symptoms at this juncture. I also know our future together is ominous. The end of this month I am being examined by our local health & science university (OHSU) to gain a second opinion. My prognosis, while IPF may well know its intended destruction of my alveoli, I am hopeful that OHSU, and Ofev have plans to keep IPF dead in its tracks.
My future is filled with continuing what I have been doing in the past. I volunteer a lot, but always have. I read a lot, but always have. I take lots of photographs, and work at my photography skills, which has become a great retirement hobby. I don’t golf, but I might!
Again, thanks Mark for sharing your insight, I very much appreciate being able to interact with others who are dealing with this affliction.
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Yes!
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Thank you for your insight on ofev, Bill.
Since ofev was approved on the same date as esbriet, back in 2014 are you aware of any studies that reveal the effectiveness of either of these drugs?
I have been prescribed ofev. I am not taking it. Rather, I am seeking a second opinion on my IPF and the prognosis from our nearby Oregon Health & Science University. I suspect ofev and I are just moments away from establishing an intimate relationship!
My 89 year old Aunt has been on ofev about a year, experiences all the identified symptoms of taking it – it has not been pleasant for her. She is on O2 100% of the time. Seems to get around about as expected, considering!
I have both a maternal grandfather, and an Aunt (the elder sister of the above mentioned 89 year-old Aunt) who have passed as a result of IPF.
I am the lucky one in my generation of the family, to have been awarded the pleasure of dealing with this affliction. None of my siblings, nor cousins from this side of the family have yet joined me on this path.
Keith
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Thank you for sharing your concerns, and to every one who responded. “Information” is very welcome.
My Pulmonologist said nothing about “transplant” being an option. Then again, the Pulmonologist in my case left it to his Nurse Practitioner to give me the news of my diagnosis. Basically all she “informed” me was that the results of my lung biopsy revealed PF. Then she recommended “ofev” – without much information about that drug, seemed very cavalier. Since, I have scheduled to be examined by the local research & education hospital. There was a 60 day interval from making the appointment to the time I will actually have my first visit with the researcher, assistant Professor, MD, Pulmonologist. Whether or not “transplant” will be a topic that Dr. initiates, it will be topic that I will inquire about.
My primary care physician who is overseeing all of this, has been mum about the issue of transplant.
It seems to me Dr.’s are attracted to medical conditions they can do something about. In the case of IPF, the only two options, one an attempt to stop the known progression, the other transplant – seem to leave both my Pulmonologist and my PCP at a loss.
Fortunately, very fortunately, for me at this juncture I do not present with any visible symptoms. When I exercise, walk, briskly 2 to 4 miles every day, some with elevation gain, then I can easily identify that my lungs are not up to snuff. I suspect, due to not “presenting” as sickly, or IPF afflicted – there are other patients who garner their attention and expertise.
It all may be that I am just not a patient person! I was hoping to move this along with the Oregon Health & Science University getting involved. They “will” – they “are” in my future, it just waiting out the 60 days tests my patients. I want to be doing something about my IPF – other than waiting. So I walk. I push my walking, each and every walk, to my maximum capacity.
Again, thank you for your informative transplant issue posts.
Keith
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Interesting reading. I am sorry for those who know others who have predeceased us – sad when this demon takes someone.
I am a newly diagnosed IPF member of our PF community, just January4. Presently I am “dealing with” – not really referring to “fighting” nor “living with” – rather just dealing with it.
One response I get, from those who inquire about my health, the results of all the testing I have been doing, is “Whew, you are lucky it wasn’t cancer!”
While cancer is definitely a killer. Modern medicine has so many ways to address that evil demon. We likely all know many who have encountered that medical scourge, many survivors, some not. However, it just seems the response “… you are lucky…” vastly misses the mark. “Lucky” to have contracted a fatal disease, one that kills. One that can only, with the present state of medicine, be, kinda, sorta stopped. A disease with the only known “cure” being removing the infected lungs, replacing them via transplant.
When I receive this “lucky” response, I just shrug internally, and let them believe that I am “lucky” – it is more to my ilk, to be thought of as “lucky” than “afflicted with a tragic malady!”
Lucky Keith
😉
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Sorry to hear about your cold. The scary part you have already experienced, having it cause further serious damage resulting in a hospital stay. I hope your cold runs its course, staying just a simple cold.
Travel – the most interesting, and perhaps the most enjoyable travel experiences we have had was to the Galapagos. We’ve been there twice, and have intentions of returning in 2020. Many of the island bear no indications that man has meddled with the natural habitat, flora and fauna. Quite remarkable to experience, for a nature buff.
Prior to my IPF diagnosis we were careful about our travel. Although it would be great to have an iron stomach, such has not been my evolution. Eating on the economy can be treacherous. My digestive systems gets out’a wack. I have not yet had to be hospitalized as a result, but it is important to get drugs into my system to prevent that from happening. We have had some success staying in the states where, generally, food storage and food preparation are not as… earthy as some places on the planet. Also, going on a cruise ship has been safe. We prefer the smaller editions, with Oceania being about as large as we care to endure. In the Galapagos the cruise “ships” are limited to 20 passengers, so that has been grand.
I am new to the IPF diagnosis, thus my day to day effects have been negligible at this point. I just won’t be running any marathons, summitting any peaks, or scuba diving in my future. If it never gets any worse… ok, that is a dream!
Sorry to hear about your husband and friends, Shelia. This can be a very treacherous path.
Keith
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Thanks Bill, insightful.
All the best,
Keith
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Never really thought about this, so thank you for suggesting the topic. I am a newly diagnosed IPF victim. Consequently I have only family and a few close friends that have heard any input from me, regarding my affliction.
I will give it a shot.
On May 1 I experienced a scuba diving accident, the bends. My body did not dissipate the excess nitrogen my body absorbed when breathing compressed air. What we have discovered is that my lungs have become incapacitated to a great extent at exchanging gas. They do not off-gas carbon dioxide, nor do they absorb oxygen as normal lungs. Scaring in my lungs, identified as Idiopathic Pulmonary Fibrosis, prevents this from happening. IPF is not something you ever recover from. It is a devastating regressive malady, often destroying a person’s lungs in three to five years. There are drug therapies that have some success in retarding this progression, but not all cases. The only known “cure” is a lung transplant.
(Seems we will need a very high building to actually complete this on a single elevator ride, perhaps an elevator speech, with a hold-over at a water fountain, for the conclusion.)
Keith
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Yesterday, I surmised I have had my head in the sand about long enough, time to check out my future. Went to the local Walgreens, thought I’d ask: what is the cost for a 30 day supply of Ofev (the drug my Pulmonologist is recommending)? The Walgreen’s pharmacy clerk could not have been nicer. She gasped at the screen, stated that she would have to ask the Pharmacist if she had looked up the correct drug. “Yes” was the response, she then looked me in the eyes, “I’m sorry, it will be a little over $11,000 @ month” She was taken aback, I was not. I knew my Aunt said it was a little over $9,600 for her. I sat in the reception area, got out my iPhone, called the FEP Blue (Federal Employee edition of Blue Cross Blue Shield). After being connected at a few different levels, I finally reached the “special pharmaceuticals” section. Yes they have the drug available, with my FEPB benefits, standard option, my copay $50. Jumping Jos’e $50! AND there is a program, for which one applies, that lowers my copay to $-0- if I qualify! I am not sure I will even apply. As I experience and read this – this is where my life path has taken me – whew! (at least I am still vertical on the path, know the path I’m on, have no symptoms on a perceptible basis at rest, and a smile on my face)
Additionally I have started a private group on Facebook “Pulmonary Fibrosis”. If you happen to be a Facebook user and want to join let me know, I can invite you in. I have several groups I manage on Facebook, this was just a natural addition to the field.
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Hello Charlene,
I misspoke in my first attempt here, it is idiopathic pulmonary fibrosis that has been diagnosed. We have two more Dr. visits this month in an attempt to ferret out the “cause” – which I believe to be a not-optimal functioning Upper Esophageal Sphincter – combined with diagnosed (but not consciously perceived by me) Gastroesophageal Reflux Disease – leaking fluid into my lungs on occasion.
Thank you for sharing your Ofev personal experience.
Keith
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Great news Denyse! Thank you for sharing.
I was first diagnosed January 4, 2019 with IPF – Physican’s Assistant immediately recommended ofev. I demurred. My Primary Care Physician suggested we get a second opinion. My lung capacity was measured at 21% of predicted. Not a great place to “start” – but we do not get to choose! On April 26 the Instructor, scientist, PhD, MD at our local research and teaching university was able to refine (trying to be nice, rather than…) my diagnosis to Nonspecific Interstitial Pneumonia, from the January 4 diagnosis of Idiopathic Pulmonary Fibrosis.
On May 1 I started at 1000mg Mycophenolate Mofetil and 40mg of Prednisone. On June 15 the Mycophenolate Mofetil was ramped up to 2000mg daily. On July 31 we dropped down to 10mg of Prednisone. It has been going relatively well, all things considered. I have had the insomnia and some occasional cramping, but have been able to control/endure those side effects. Curiously, with the Prednisone I have not gained a pound – which would have been helpful in my particular case.
I walk every day. The Dr.’s have cautioned me to keep my heart rate in the training range, rather than my propensity to work to the max heart rate on these walks. I am not on supplemental O2, and have not experienced the need for that, thankfully. I do get the discoloration on my fingertips and can tell when my O2 level is diminishing, but if I slow down, let my body recover the discoloration goes away.
I head back to the university on the 23rd for the once-over-greatly again to check how well the drugs and my lungs are working. If it never gets any worse than I presently am, it would be wonderful!
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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
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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
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Thanks Charlene,
I met with the Rheumatologist on Wednesday, he is having his lab do some analysis on my blood to see other bodily effects of PF.
On Monday I have the barium swallow test. There is a problem with the upper esophageal sphincter that we are hoping to uncover through that test. With interstitial pneumonia water is present in my lungs, so we suspect this might be the culprit.
Once the Rheumatologist’s labs come back, likely on Wednesday, and the results of the barium swallow are in, my prognosis will include me becoming intimate with Ofev. I predict it will be sometime before the end of the month.
As ominous as our future is with PF, it seems much more ominous without the benefits of Ofev.
Again, thank you, Charlene
Keith
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Whew, happy to hear it was nothing serious!
Keith
