• Medi posted an update 9 months ago

    @marianne Dear Marianne,
    Thank you for your kind message regarding the drugs.
    The primary reason I am not taking either of the drugs is the side effects. Both drugs, to my under standing, claim they COULD. ( Not guaranteed would) slow down the Fibrosis progressing, and the slow down rate varies from person to person.
    I tried OFEV for 2 weeks and…[Read more]

  • Hi @marianne,

    Sorry for keeping this short, I am just about to head to bed as I am very tired. However, I wanted to say kudos to you for working 4 hours the other day! How did it go in terms of how you felt in the evening? Were you exhausted? Good for you as well for booking a massage in the next few months! I have one tomorrow and am looking…[Read more]

  • Hi @marianne,

    Thanks for providing us with this update, and I’m really glad to hear you’re being such a strong advocate for your healthcare needs by asking your doctors the tough questions. It sounds like he/she is very responsive, which is great. Do let us know which of the anti-fibrotic drugs they recommend for you, as there are folks on the…[Read more]

  • Thanks for the update @marianne! Here’s hoping that the Esbriet (Pirfenidone) will be less expensive with your plan, as opposed to the Ofev. I know lots of patients who are on it, and believe it has been successful in the slowing (not stopping) of their disease, so goodluck. Keep us posted on what your insurance company says, and best wishes for…[Read more]

  • @Marianne, I was switched from Esbriet to OFEV because I developed an allergy to it. I really have not had any issue with the sun while being on either one. I actually think that the Esbriet worked better but I could be wrong.

    My doctor just increased the dosage from 100 twice a day to 150 twice a day as my SOB is getting worse and I am now…[Read more]

  • @marianne

    Hope you are doing well.

    I go to rehab at an outpatient facility associated with Mount Carmel. I had contemplated switching to a regular gym but realized that it would be best to remain with this rehab facility as they are trained in case anything were to happen and they do have supplemental oxygen.

    I am having a difficult time…[Read more]

  • Hi @marianne,

    Thanks for your kind words and support you offered to Rayna, I am sure she appreciates it 🙂

    As for your support group question – it is a good one, as I toyed with the idea of creating a forum for IPF patients under a certain age, but went instead with the Young Adults forum to try and include a number of different ages. While I…[Read more]

  • @marianne

    K2 has become more important as its’ effectiveness is better understood.  If you do a google search you will find several articles about the importance of K2m7 with D3. Several years ago it was not well known, today much more so.

    Steve

  • @marianne

    Hi Marianne,

    I have been taking D3 for a few years with good success. After studying up on it I added a good from of K2 (K2m7) to help put the calcium in the right place primarily the bones.  It’s good D2 worked for you as it typically doesn’t work as well as D3.

    Steve

  • @marianne, I’ll be coming over to your hours for breakfast, lunch or a snack if you make this recipe with all the different fruits you mentioned. Pears or peaches would be divine! Let me know if you try it out and what you think. I really enjoy tossing recipes like this in my slow cooker overnight for a scrumptious breakfast on Saturday or Sunday…[Read more]

  • Hi @marianne,

    I am writing this reply on behalf of Bob B. who tried to reply himself but the forums were giving him a hassle. Here is what he wrote to you/us verbatim:

    Marianne I assume you are in the United States or another jurisdiction that doesn’t have universal health care.  Charlene and I are in Canada and although we have to qualify (our…[Read more]

  • Steve Dragoo replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 10 months ago

    @marianne

    Hi Marianne,

    I have not refused because of the cost but for the side effects.  There is a pirfenidone supplier in India and their cost is very low.  I can send you the link I saved if you wish, however, I know nothing about them yet they seem to have a good rating.

    I do take supplements and enzymes that help and there are several d…[Read more]

  • Hi @marianne,

    I haven’t heard of folks declining the drug due to it being cost prohibitive, although I certainly could see that happening for some folks. They’re so expensive! For people who are on Esbriet, I’ve heard stories of the maker of the drug (Genetch) giving “trials” to patients but ongoingly so they are never without it. I haven’t heard…[Read more]

  • Hey @marianne, I get a grant from Healthwell that covers the cost of my copay.  Perhaps you could apply to them. If you want, I can send you the information.  You have to give them your monthly income, just yours, if it is too much, you will not qualify.  There is financial help out there.

    jacki

  • Hey @marianne , I am going back to the Speciality Pharmacy for your OFEV.  I use the CVS Speciality Pharmacy and they send it to a local CVS at Target and I pick it up there, it is very convenient.  My insurance pays most of the cost and I  got a grant that covers the rest of the cost, so I am fortunate.  I do not have to pay for this drug, the…[Read more]

  • Hi @marianne,

    Thanks so much for sharing your experience, and although I wish the final diagnosis wasn’t IPF; I’m glad you have a plan in place now to hopefully help manage the disease a bit better. When do you suspect your Ofev will arrive? I am on Ofev too so if you have any questions, feel free to connect. Mark was on it before his transplant…[Read more]

  • Charlene Marshall posted a new activity comment 10 months, 2 weeks ago

    HI @marianne,

    You’re so kind to remember and think of me to check in! The appointment went okay, although no real answers unfortunately. She ordered bloodwork, which I went for yesterday morning so we’ll see if that reveals anything that might explain the fatigue. She insisted the dizziness was due to low saturations, and didn’t really seem to…[Read more]

    • Had a really rough couple of days. Not doing as well as need to on the breathing machines I must do every hour I am awake plus was constipated. Finally got relief from the constipation late yesterday. Slept better last night but have been awake since 5:30 am today. I was able to nap some during the day yesterday. I will be glad when I…[Read more]

      • Hi Marianne,

        Gosh, I am so sorry to hear of these struggles – it sounds like you’ve had a tough few days since we talked last! The breathing machines you’re referring to, is that a home CPap machine or a nebulizer of some kind? So sorry to hear about the constipation. Did the relief come from medication? If you ever want to try a natural…[Read more]

        • Hi Charlene –
          Doing much better yesterday and today. The breathing machines are 2 manual machines I use every hour I am awake. One is called Vibra Pep – blow into it 5 times each hour. It has a balloon in it. It kind of sounds like a Woopie Cushion. It makes a funny noise. It also expands the lungs. That is the easy machine. The other is…[Read more]

          • Hi Marianne,

            So nice to hear from you and I hope you had a nice weekend. It was a holiday weekend here in Canada, so it was nice to spend time at my cottage with family. Home now and ready for another week.

            I haven’t heard of many folks with IPF using those machines, but then I remembered your physicians are looking into which specific ILD is…[Read more]

            • Hi Charlene –
              Glad you had time with your family this past weekend. Called my surgeon’s office with a couple of questions yesterday. They told me to keep increasing the walking daily. If I have a couple of days when I cannot walk as far to call them. They also told me the pain will be better when the staples and stitches come out next week.…[Read more]

              • Hi Marianne,

                Nice to hear from you, thanks for the update. Glad the surgeon’s office was receptive to your questions and gave you some advice on how to proceed with your recovery. Ah yes, I remember that breathing machine… a spirometer I think is what it is called? I had one after a terrible exacerbation in May of 2017 where my lungs collapsed.…[Read more]

                • Update. Two doctors appointments tomorrow. Pulmonary doctor and cardio thoracic surgeon. Incisions hurting again. Hoping to get staples and stitches out tomorrow. Incision sites are red and a bit swollen. No fever so I am hoping they are not infected and just need to get staples and stitches out of my skin. I am sure pulmonary doctor will…[Read more]

                  • Will be thinking of you Marianne and sending as many good vibes as I can! I am sure getting the stitches and staples out will help significantly with pain/discomfort. Goodluck.

                    • Charlene –
                      Thanks for the good vibes. Got the stitches and staples out and it helps with the pain level. Actually walked 2 mile today because of two doctors visits in two different locations. Surgeon was happy with the way the incisions were healing. Pulmonary Doctor told me what I was prepared for but did not want to hear. I definitely have…[Read more]

  • Denny posted an update 11 months ago

    @marianne -Won’t they do the biopsy down the throat? My Cleveland Clinic doctor looked at my scarring pattern and knew what it was, especially when I had a blood test which was showing pneumonitis. You may have what I have. I was the same way where I had to take pauses when doing long stairs or distance walking. The herbs that I took took care of…[Read more]

    • They are telling me they have to do a VATS surgical lung biopsy. They need a larger piece of my lung than they can get going down the throat. I have been to 2 different lung doctors at 2 different hospitals, had every test except for a biopsy and they cannot determine which specific ILD. I had a bronchoscopy lavage which found some calcified…[Read more]

      • When were you diagnosed with the disease? When would you be having the VATS biopsy done? I wish you good luck and hope that you have the best possible outcome.

        • I haven’t technically been diagnosed yet. They know I have an interstitial lung disease but are not sure which one. The are leaning towards either IPF or NSIP. They are not able to tell from CT scans or other testing. I am having the lung biopsy this Friday – May 10 at The James at The Ohio State University Medical Center. My cardio thoracic…[Read more]

          • Had the VATS biopsy on May 10, 2019. Surgeon was happy with the surgery. Friday was a rough day. Felt like I got hit by a semi-truck. Very little sleep in hospital night of May 10. Someone was always coming in my room it seemed like every hour. Let out of the hospital on May 11 in late afternoon. Still in some pain but alot less than…[Read more]

            • Thanks Marianne for the info. I hope you get back to normal soon. Let me know what the results are and what treatment they prescribe. When can you drive?

              • HI Denny – Have no idea when I can drive yet. The information I was given from the hospital says driving locally after 6 weeks but that might be for people who have their chest cut open. I won’t know that until I see the surgeon. I am still working full time and I drive 40 miles one way to work so I image I will work from home for awhile.…[Read more]

                • They are telling me 4 to 6 weeks until I can drive locally. As I commute 40 miles one way to work – that is not a local commute. Finally got in touch with my surgeon’s office today. They will call me in around 10 days with biopsy results. My follow up appointment with surgeon to have stitches and staples removed is set for May 28. I am sure…[Read more]

  • Hi Marianne,

    Thanks so much for your reply and good question regarding this topic! I had mentioned that I wanted to reply to this, as I have some experience with acupuncture in an attempt to suppress the cough; I didn’t mean to take so long to get back to you…

    I tried acupuncture at the recommendation of my colleague who found it very helpful…[Read more]

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