This topic contains 14 replies, has 6 voices, and was last updated by  Steve Dragoo 4 months ago.

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  • #19059
     Charlene Marshall 
    Keymaster

     

    Photo did not originate from PF News, the original source can be found HERE

    While more and more research is being conducted about pulmonary fibrosis (PF) on an annual basis; there still remains a lot that is unknown about this life-threatening lung disease. As an example, sometimes PF develops as a result of toxic or hazardous exposure to chemicals, particles or other airborne issues, including pollen and environmental triggers. That said, oftentimes PF develops simply as “idiopathic” which is just a fancy way of physicians saying they don’t know what caused the lung disease. IPF is what I was diagnosed with a little over three years ago, and to my knowledge: there is no known reason why I developed this lung disease as such a young age.

    Additionally, I’ve heard that PF can develop as a secondary disease following treatment of another chronic illness. As an example, I know a few people on these forums or throughout my own “PF community” who have developed this disease as a result of their therapies for cancer. This seems incredibly unfair, but sadly, it is a pretty common occurrence.

    I recently saw a post on Inspire Pulmonary Media about pulmonary hypertension and it grabbed my eye, because the post was called Do I or Don’t I Have Pulmonary Hypertension?

    I’ve been told that I have PAH as a secondary disease caused by my IPF. Simply put: my heart is over-compensating for my poor lung function. What is interesting is that one physician has told me I do have it, whereas others have told me I am just at risk for it. This is why the above article caught my eye! Sadly, I’ve had many friends die from PAH, including a very close friend back in September, Serena. Admittedly, it scares me that I may have or develop this disease!

    I was curious about others’ experience with both PAH and IPF/other ILDs: have you ever been told you have Pulmonary Hypertension or are at increased risk of developing it?

     

  • #19110
     Moses Samson 
    Participant

    Hi Charlene,

    Last week I got admitted into hospital due severe cough, cold and tightness in chest. I have had these things many times but I ignored them and was pushing myself to work. I was not on oxygen either.

    at the hospital it was found that I got PAH ( RVSP.  -38), high BP which is caused LVH on the heart along with Rhinosinusitis. Now I am on O2. I think its my fault that I pushed myself too far even with breathlessness.

    Had I listened to what my body was saying I wouldn’t have had PAH. But it is what it is. One day or the other IPF brings other complications. Quality of life gets a hit when IPF is compounded by PAH.

    • #19116
       Charlene Marshall 
      Keymaster

      Hi Moses,

      Thanks for writing and contributing to this topic thread, although so sorry to hear of your recent admission due to a severe cough and cold. I always try to advocate how serious the ‘common’ cold can be for those of us with a lung disease to catch, but no one seems to understand entirely except this group.

      Pushing through the symptoms is so common, but you’re right, it is likely so bad for our bodies. However, I am guilty of doing the same and know extra stress is being put on my heart. So sorry to hear that you now have developed PAH as well. Are they giving you any treatment to help manage the disease or symptoms? I sure agree with you about quality of life! Hang in there, and feel free to write anytime…

      regards,
      Charlene.

       

       

  • #19111
     Rose M. 
    Participant

    Hi Charlene,

    I didn’t have an echocardiogram done till a year after the IPF was found on my chest x-ray (May 2013).  And I’m not sure how long I had the IPF  before that chest x-ray.  My echo done in the spring of 2014 showed I had a mean arterial pressure of 28-30.  But my pulmonary doctor was not concerned, he felt we could keep an eye on it.  I was also on Bipap at this time for sleep apnea.

    I was taken off Bipap in March 2018.  (Long story)  I had another echo May 2018.  And my mean arterial pressure was down to normal, 16.   My cardiologist was surprised.  We’re not sure why it went down.  Was it because of being on Bipap for 8 years??

    My cardiologist will repeat my echo next spring, unless I have any new symptoms.  Since diagnosed with the IPF, I have PAH in the back of my mind as my dad had pulmonary hypertension due to long term heart disease.

    By the way, the ILD Clinic at UCLA pushed my appointment back until the end of June.  I was disappointed, but there’s been no changes for me, so that’s okay!
    Rose

  • #19119
     Charlene Marshall 
    Keymaster

    Hi Rose,

    Thanks so much for writing and sharing a bit of your experience with PAH and PF. I find it amazing (not in a good way, though) how our hearts can suffer damage when our lungs are functioning poorly. I guess it makes sense that they have to compensate for an organ that isn’t working well but this seems really unfair; that poor lungs lead to a bad heart and likely vice versa. Ah well, so much about this disease is unfair I suppose…

    That would be my (completely uneducated) guess re: the bi-pap helping to bring your pressures down. Glad they will test again, and I hope you remain completely symptom free 🙂

    Goodluck with your appointment at the ILD clinic in UCLA. They do great work! I can understand your disappointment for sure, although June will be here before we know it.

    Warm regards,
    Charlene.

  • #19120
     Steve Dragoo 
    Participant

    Hi Charlene,

    Thank you for the great diagram and insights about PAH. Even though I am taking supplements, laser treatment, and soon starting Wei Institute’s elixir (tonight when it arrives), I know PAH will remain a primary concern. My heart in the AM when I get out of bed jumps up to a  little over 105 BPM but settles down quickly – less than 30 seconds and my O2 at those times is usually 97-98.

    So it confuses me that the heart does that but also I have had an arrhythmia for decades and sometimes it can go into hyperdrive.  Hopefully, a lot of this will go away when I am back home next week after a 14-month absence and the incredible amount of things we have had to work through (not the least of which was the “official” sentence of IPF), losing weight (automatically in the Philippines), and starting the aforementioned elixir. Truthfully though, I would rather have a heart attack than put my family through the usual end time suffering this disease causes.

    No matter what, I’m going home. Now that’s exciting!… – Steve

    • #19145
       Charlene Marshall 
      Keymaster

      Hi Steve,

      Oh my gosh, I was so happy to hear from you yesterday morning! I was going to send you an email and just check in on how things were going. Thanks for writing 🙂

      I didn’t know you’d decided to try out a blend from Wei, I think that is the same mix of herbs that Denny had much success with. Did the first couple nights with it go okay?  Glad when your heart rate climbs in the morning, it jumps down rather quickly. Do you notice a significant difference in your HR at the gym, including how long it takes for it to come back down to normal rhythms? I really hope you see a reduction or a complete cease in the arrithymias when you return home. That is so exciting that it is getting closer! You must be thrilled? 🙂

      Hang in there, it is so soon!
      Charlene.

  • #19121
     Karmin. Chowbay 
    Participant

    Thank you Charlene Marshall for all the information on IPF. I am going crazy and sad the we developed this no cure disease. I been on OFEV for 2? Years with no progression. My CT Scan is due on Monday then I will know If there is any changes.
    What do you think about the herbal products .
    Thank you
    Karmin

    • #19144
       Charlene Marshall 
      Keymaster

      Hi Karmin,

      Thanks so much for joining the PF forums! I’m glad you’re here and although I wish it wasn’t this cruel disease that linked us all together; everyone on these forums are so helpful and supportive. No doubt you will feel connected here. How did your CT scan on Monday go, do you have any results yet? How have you been tolerating the Ofev? Sorry for all the questions!

      In terms of herbal products, are you meaning the Wei Laboratories ones? I haven’t tried them although some members of the forums talk about them in great success. I see Steve replied to you below, or are you talking about the Serrapeptase? Let me know and I’ll see if we can help 🙂

      Cheers,
      Charlene.

    • #19159
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene – Yes I was glad to see your PAH post and for a while thought I had not been receiving any updates and was going to email you, too.

      I had been considering Wei for a while since I could not find a laser in the Philippines. I started it Tuesday evening but no side effects or any differences are noted.  It is the same recipe for all lung ailments we have and consists of pills that are called Soup A, Soup B, LC Balancer. I take two each 3x daily. So 18 pills more per day (yikes) but I probably only need to take it for two months and then go on a maintenance schedule (undetermined yet). They ship to the Philippines and it does not cost much considering the distance and only takes 6 – 10 days.

      At the gym, I start with the recumbent bike and did 3.1 miles in 15 minutes yesterday. HR only went to 112.  When I start working with weights rate does go up and stays there until I rest and I never wait long enough for HR to fully recover. Oddly enough that and the next day my O2 sustains at 96-98 mostly, same for laser treatments. So the mild to moderate workouts are a great benefit but so is packing my last two boxes with my airline tickets in hand!!! (Ooppsss – my HR just jumped…)

      Had the director of the missionary training school we went to in 2016 (Philippines) looking for a laser too (he is an RN). You know I have a strong belief in our Creator so this next story amazes me.  In that school, we had to participate in a live 40-day seminar (plus all other duties) and nightly there would be a health nugget spotlight. I talked to one doctor who gave it frequently not knowing her specialty. After graduating in December 2016, the director, his wife, me and my wife went to her house for dinner (her husband is a pastor), I thought nothing of it. Just a few weeks ago when I asked my friend to search for a laser, he asked if I remembered the doctor, of course, I did. Well, he reached out to her because she is a Pulmonologist. So, in other words, I met the doctor I need 2.5 years before I knew I needed her. Pretty cool, huh? – We meet on Facebook soon…

      Any word or ideas regards an IPF get together?

      Talk soon and stay well… – Steve

      • #19197
         Charlene Marshall 
        Keymaster

        Hi Steve,

        So nice to hear from you as always! The only “bad” part of these forums is how much we begin to care for others on here, and then when they aren’t active, we tend to worry a bit given the serious nature of our illness. I was very glad to hear from you the other day 🙂

        It is a long weekend here in Canada, so I am just wrapping up a few emails and forum replies, then will be heading to spend the weekend with my family at the cottage. The first long weekend of the summer is always exciting here. Are you in the throws of packing/organizing this weekend? I’m sure you still have lots to do…

        That is really great about the Wei products going to the Philippines, along with not being too pricey or long for shipping. Still haven’t been able to find a laser provider there? I hope the Wei products continue to not have any side effects for you. I’ll keep my fingers crossed you notice a difference like Denny did. I know he speaks so highly of their products.

        I am so impressed at your commitment to be in the gym, despite the difficulties with IPF. Will you keep up the routine when you get back home? I know naturally you eat and live better there so maybe you won’t need a gym regimen/work out?

        Your story about the Pulmonologist and meeting her long before you needed her gave me goosebumps! The world sure works in mysterious ways. I am thrilled you’ll be able to have her support when you get back home, that is wonderful. Will she be your primary physician do you think then, for the IPF?

        No update yet on the IPF get together. I haven’t given it as much thought as I’d like as other things have been occupying my mind, it is on the list though!

        Chat with you soon,
        Charlene.

  • #19123
     Steve Dragoo 
    Participant

    @karmin-chowbay

    Hi Karmin,

    If you are asking about Wei Institute’s elixirs, I am starting them tonight because I cannot find a k-laser in the Philippines where I am moving.  If you want I can post again in a few weeks but it may take up to two months before it stops the IPF – if it works.

    Stay well,

    Steve

    • #19202
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene,

      Thank you for checking in. I was worried for you also the last week or 10 days and thought maybe I wasn’t getting updates too. I think sometimes no or less forum activity may be a good indication (I hope). But I know how busy you are so I just waited.

      “Spending the weekend at the family cottage” conjures up ideas of fun and heat in the sun close to the ocean. – Hope it is both of those for you. Packing and final preparations are going well. There are times I don’t want to do this and could just abandon all my stuff because who knows if I will ever see it again… Not being morbid just know how much paperwork we have yet to do and nothing happens fast in the Philippines. So today (Saturday) I am relaxing until late and then do about an hour or so of stuff, make a final run to the store, and attempt again to figure out my suitcases. – Seems I’m taking a lot more pills than clothes this time. LOL.  Sunday – my final day in this place is making some airline calls, fix pills for the next 4 days, do laundry after I shower, take the bed apart, bag up the remaining clothes and sofa cushions, and pack those final two boxes!!!

      Wei seems to be going well but it has only been 4 full days.  There is no class 4 laser over there and even the pulmonologist (we talked a couple of days ago) said she had not heard of one. She is looking for a doctor close to me as Manila (her home) is about 500 kilometers away and the only way to get there is to fly unless I take a series of ferries for about a week – nope… She is also looking for O2 there and says they do have that.  I have a son who works for a medical supplier and visits lots of hospitals so I will see what he can uncover too.

      I like the gym because it has a bunch of resistance/weight machines that have become a routine. Over there I will have to improvise but hope to get a new routine going. There is one gym not far from me there but they are not like the gyms here. The great discovery is how a mild workout stimulates mitochondria and raises O2 for a couple of days. So maybe the perfect remedy for IPF is gym, serrapeptase/nattokinase, laser, Soup A/B & LC Balancer. – Take that western medicine…

      Stay well – Steve

  • #19137
     Kate E 
    Participant

    Hi, Charlene,

    First of all, I’m very sorry to hear that you’ve developed PAH as a result of IPF. From my own experience, I find that it’s emotionally pretty challenging to hear yet another diagnosis on top of the first one. Each time that happens for me, I have to find my way through on so many levels, and it’s not easy.

    I, too, have developed PH, though mine is secondary to fibrotic chronic hypersensitivity pneumonitis, one of the ILDs. I’ve been having annual echos since 2015, and unfortunately the PH is progressing as the cHP progresses. As of yesterday, it’s been recommended by the team at my pulmonary clinic that I would have a right-heart catheterization to get a more accurate read of the pressures in my heart, as the pressures from the echo are only estimates. I’m not sure whether I will choose to have that procedure or not. To be honest, I am reaching a point where I am getting really worn out with procedures and all that comes with them: concerns about risks from the procedure itself and then the need for more appts and more evaluations to decide what the response should be to the results that are found during the procedure! After 7 years of managing this illness, it does all get a bit wearing.
    I did want to mention that, just a few days ago, I watched a half hour FB Live presentation from National Jewish Health that was originally titled something like ‘SOB and Pulmonary Hypertension’. If you go to their FB page and scroll down to May 8, you should still be able to watch it. You might find it helpful, tho’ they didn’t talk much about SOB. Here’s a link to the page: https://www.facebook.com/NJHealth/

    Wishing you all the best,

    Kate

  • #19147
     Charlene Marshall 
    Keymaster

    Hi Kate,

    Thank you so much for writing and sharing a bit about your experience with PH in addition to cHP. Like you, I struggle with any type of new diagnosis or even aliment since my IPF diagnosis; just seems unfair, doesn’t it? I hope you’re finding ways to cope with that and have lots of people surrounding you for support.

    I hear what you’re saying about the procedural risks, complications, etc. when it comes to various diagnostic testing and monitoring. It is exhausting! I have had a right heart catheterization, and connected with a close friend ahead of getting mine done. I want to be honest, they aren’t pleasant but they are tolerable. The other good thing with this procedure is that it is usually only done once, so that was my approach: “just get it over with” type of attitude, but I certainly respect that isn’t for everyone. Feel free to connect anytime if I can be of any assistance in your decision making. It is tough stuff, for sure.

    Thanks for the FB live link as well, I’m definitely going to bookmark it and go back and have a watch. I appreciate you passing it along 🙂

    Wishing you well.
    Charlene.

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