This topic contains 4 replies, has 2 voices, and was last updated by  Mark Koziol 5 months, 2 weeks ago.

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  • #17870
     Mark Koziol 
    Keymaster

     

    When I first was diagnosed with idiopathic pulmonary fibrosis, (IPF) I didn’t feel like the world was coming to an end. I was on supplemental oxygen but I was only on 2 liters per minute, (lpm) pulse. My oxygen needs were not severe. Everything changed several weeks after my diagnosis of IPF when I contracted respiratory syncytial virus, (RSV) and also had an exacerbation. My oxygen needs were now substantial as I went to 4 lpm at rest and 6-8 lpm continuous flow.

    Upon return home after an 8 day stay at the Cleveland Clinic; my whole outlook on this disease changed. I knew I had to fight for my life and it seemed everything I read on the internet was going to come true. Not long after my discharge I met with the Cleveland Clinic Lung Transplant Center; after my appointment I knew I didn’t want to go down without a fight. I would do everything in my power to lose the required weight and be compliant with both pre and post transplant requirements.

    Doctors said I could not go to work for 3 months because of the RSV. I knew I had to keep my situation as normal as possible; I needed to see friends, family, and my co-workers in order to maintain my sanity. My wife helped me immensely. She would pack me up in my truck, and made sure everything was right for me to travel. Driving away, I can remember feeling satisfied and normal because I was driving solo, usually with my dog Lucy. I had a constant flow of well-wishers who would come over and visit. Some people who are fighting a disease choose to be by themselves. Others are not as fortunate to have people in their circle that are willing to deal with your disease.

    I tried to take part in as many activities as possible. I was in a golf league, and when I could no longer golf easily, friends would strap two oxygen tanks to the golf cart and away we went. Golfing was not in the cards but I felt normal being outside and grateful for the camaraderie. I went to see my beloved Cleveland Browns; maybe I couldn’t cheer as loud but I made it there. My wife and I took a road trip. I drove all the way to Kansas and back. We went to a wedding for dear friends and also were able to see my daughter in Nashville. I went to friends’ children sporting activities. I loved watching the kids play. There were many other functions, activities, and solo drives; too many to list on this forum.

    Please, if you are suffering with this disease and you are able; make as many memories as possible! Be as normal as possible!

    What activities do you actively participate in to make things feel normal for you since your IPF/PF diagnosis?

    Do you have caregivers involved who help you maintain normalcy?

  • #18151
     Keith Nelson 
    Participant

    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.

    • #18154
       Mark Koziol 
      Keymaster

      Hello Keith, thank you for sharing. Your writing is incredible. If you get bored I’m sure you could write comedy skits. It’s too bad hearing you can’t scuba any more. I have had a transplant and I go snorkeling. We are allowed to do that but no scuba. I find great joy in snorkeling as you did in scuba. It appears your days are full and that is the best way to maintain your normalcy. Can you tell me what university is OHSU? You are so right about IPF. What a nasty and vile disease. It does have a mind of its own. You never know how it’s gonna react. Keith please keep in contact and keep that optimistic attitude. Thank you Mark

  • #18155
     Keith Nelson 
    Participant

    Hello Mark,

    Our “local” medical research university is located up in Portland, OR, about 130 miles distant.

    https://www.ohsu.edu/xd/

    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

    • #18159
       Mark Koziol 
      Keymaster

      Thank you Keith, the acronym stumped me. I live in Cleveland, Ohio and when I see anything with an O I immediately think of Ohio State.

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