• Joseph Collins posted an update 2 years, 4 months ago

    I am an 85 yo maie, new to this forum, but an old hand at IPF. I was diagnosed with it in May of 2014. I was offered a chance to join the Ofev trials but opted not to do so as I was told that the side effects were bad and the pricing would be worse. For the first three years my digression was less than in the study group. My pulmonologist said that I was in a small group that,for some reason,self arrested and that my results would have skewed the study . About the fourth year my energy level started dropping again indicating a restart in the digression. About that time my heart decided to get involved by giving mild heart attach which resulted in implanting a stent. Both the cardiologist and my pulmonologist thought that the blocked artery was the cause of recent discomfort and expected me to feel much better. For some reason that was not the case. The attack occurred on May 22, 2018 about 9:00 pm. I have yet to have a single day that was as enjoyable as that day was up until the attack occurred. Whether it was my lungs or the medications that caused it, I have been plagued with extreme fatigue ever since. Just when I thought it could not get worse I had a second attack and added another stint. This was on February 11, 2019. Since then my energy level dropped to the point that I could rarely leave the house.

    Even though I knew the risk involved i opted to continue taking a small dose of an NSAID to keep my arthritis in check. That caught up with me on June 27, when a blood test showed me to be severely anemic and my hemoglobin was critically low. This resulted in a four day hospital stay to have a colonoscopy and an endoscopy to find out the source of a blood leak. No leak was found at that time so I was given two units of blood and sent home. On July 15 I was found to be bleeding internally which sent me back to the hospital where another endoscopy fount two leaks which were cauterized. Another unit of blood and I was sent home again. I still have zero stamina and my resting pulse rate has gone from 65~75 to over 100.

    While dealing with the heart problems I tried a month of the Wii Labs herbs but found no improvement. One of my daughters found a young DC that had a Level 4 K-laser and a willingness to try Dr. Hall’s treatment protocol. He contacted Dr. Hall and was instructed in how the treatments should be applied then had me set up a schedule for treatments. At this point I have had 13 treatments starting on June 11. I believe that I am improving in spite of the heart and GI setback. I have a PFT scheduled for early August which I hope will show I bit of improvement or at least no further progression.

    If this is TMI just let me know and I will back it down in the future.

    • Hello Joseph, trust me this was not tmi. This forum is to tell your story. Regarding the laser therapy there are some members who are well versed in this treatment. I am not one of them. Hopefully some others can chime in. I am glad you are feeling better and I hope your heart rate comes back down to normal. It seems like have been through some adversity in the last couple months. Unfortunately this disease throws a lot different side effects at us. Most people who suffer from PF also have other health problems. Joseph, I wish you well and please keep us updated. I think you will find this is a safe zone. Thank you, mark.

      • Hi Mark and thanks for the welcome. I have been browsing the site trying to decide where and when to post. The most amazing thing is that my symptoms are quite different from most of the ones here. I have been diagnosed for over 5 years and still have a resting O2 concentration in the mid 90s. I have never taken anything other than 20 mg of Prednisone. I seem to get a slight benefit from that for my fibrosis but even more for my arthritis. Ofev and Esbriet are not in my future! I have had a grand life so far and will not punish myself or my loved ones for a few more month or years. I honestly think I have beaten the system as I have been happily retired for over 25 years! My wife of 59 years and my extended family support my decision. That said, I am not throwing in the towel, I am just not going to punish myself for the future.

        I have started laser therapy which I believe to be helping me but it is hard to tell as my heart and gastric problems make it hard to separate the results. I will be having PFT August which both my DC and will show positive results. Stamina and pulse rate are my greatest concerns. I will see my cardiologist on Tuesday and hopefully she can help me with those. I will report back when I get some news!

        Joe

        • Hello Joseph, I am happy to hear the prednisone is helping with the inflammation; fibrosis and your arthritis. It sounds like scarring is progressing at a slow rate and hopefully it has stopped. Good luck with laser therapy and yes, please keep us updated. Mark

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