Here's my experience since Feb of 2011

Posted , 5 users are following.

I'm still fairly active although I've been in hospice since the first of December. I haven't taken any medications to treat my IPF although I did start taking  medofinil for fatigue right after the biopsy confirmed the IPF.  I believe that exercise is the key to my longevity. 

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  • Posted

    At the time I was diagnosed I was using my recumbent bike 5-6 days a week for 42 minutes with a heart rate above135.  I've also followed a routine of up and down days since I can't tolerate the medofinil every day. Essentially I have two days where I take it followed by one day without. On my "down" days I sleep as much as 20 out of 24 hours. My O2 usage has increased from only during exercise to 3.5-4 liters continuously. 

    I'm interested in hearing from others about their experience with IPF 

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  • Posted

    Hi, thanks for posting. I have more questions than help for you I am afraid, although It would be great to know a bit more about you. Consider the little "about me" place on your home page. Anyway, I to am fairly healthy, although have that fatigue thing you mentioned, and I got it, like you, after my lung biopsy! The biopsy dropped me flat for a couple of weeks. Sick, sick, sick.

    I'm 67 years old ans struggling with whether to try to get on the transplant list or not. I'm not very enthusiastic about the numbers nor the lifestyle changes. I am seeing a doctor about hospice and palliative care although I have no idea about the timing of this disease. I am taking OFEV 100 MG. It has pretty encouraging results for slowing progression. I get diarrhea from it at times.

    It sounds early for hospice for you. Maybe you can explain that a little. For me it is just a talking therapy/planning kind of thing. Staying ahead of the curve. 

    I hope more join this discussion. You gave it a nice start.

    best,

    es

    PS, I like pictures. 

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    • Posted

      I’ve got a friend who went through a double lung transplant. That was almost 2 years ago, and she has stated she would not have done it if she’d  known what life would be like afterwards.  It wasn’t just a long recovery time, it is all the restrictions but she has to live under. She was in her mid 50s of the time she got it.

       The reason I am in hospice is not actually My IPF but the expectation that I will have a fatal heart problem due to my history  which you can find in my profile. I have been surprised by what hospice  actually is, in my case  it involves check up by a nurse, and a monthly visit from a social worker and Chaplian. 

      I’m very interested in how many folks are using medofinil and I’m going to start a new thread about it. 

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    • Posted

      Hi there, Reading your post & wonder, How to get the energy to even begin to exercise . Also, any ideas on what to do about NOT being a burden on my family ? I have not told them I have PF, & breathing is getting harder. I am only on O2 at night, Pre test thogh, My heart Doc put me on it cause I stop breathing if & when I sleep. So have no plan from Pulm Dr yet If there is on . Have a nice day Thanks for your input as well smile

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  • Posted

    Hi again rebbacchus,

    I didn't make the list for Tplant and was greatly relieved. I'm sorry your friend has spent two years in frustrating discomfort. It is what I feared and there aren't many conversations on the topic of NOT transplanting. 

    I have an hospice doctor who is terrific. He is kind of a rebel in his area and trying to get other doctors to understand that patients are people. I see him about once a month and he gives me TWO HOURS.Sometimes I got with my wife and sometimes alone.

    I went to a presentation by an hospice doctor (ER specialist too) and she showed a pretty neat film on people, well, taking either the palliative route or the ventilator. Her book is called Extreme Measures and her name is Jessica Nutik Zitter. The book is pretty impressive and she goes deeply into the sterility of extreme medicine as well as the sterility of the physicians who seem to turn off the human part to get through the process of healing, especially in ER.

    I'm so friggin' lazy. I took a ten minute walk yesterday a had to bump the Os up to 5. I use a tank for my shower so I can get 6 or7 Lpm until dried off and inch it down to where I go back on the concentrator at around 3, or 4 if actually doing anything like cleaning the kitchen, 

    I do hear from many sources that exercise is the best treatment for this thing so will have to try harder.

    As my life is in a kind of limbo, I'll share the Japanese symbol for Ma (the space between things). 

    Best,

    es

     

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    • Posted

       I have never applied for a transplant, in part because I think my heart and age would rule it out. However, the main reason is that I simply would not want to go through the process. I find it interesting that you have a problem in the shower, because I frequently experience Angela(I love Siri but it’s angina I experience although while my wife of 49 years might object I’m sure Angela would … nah not worth the hassle at this point) after showers.

      I worked my way through UT as a Registered respiratory therapist, the only one on duty on Night Shift in Austin Texas. Are so enough of doctors at work to have no illusions about humanity and the humble  nature 😉

       I am a big advocate of exercise, and have been since before my first heart attack. I use a recumbent bike and weights but it is getting harder both from fatigue and a lack of motivation. I’m one who hates walking because of old back problems. I think you need to find an exercise that’s easy and holds your attention.  I use my bike and pretend I’ve got to peddle to produce the electricity to watch my favorite TV shows. Of course That presupposes that there is a TV show that I  enjoyed watching. 

      As a work in progress Christian I’m more than ready to go home, although I do hate to leave my wife. That attitude is tough for some to understand but it makes this process easier. 

      Finally, if you’re not taking Modafinil I highly recommend it.  I asked my hospice nurse if she had any other patients who were taking it. She said yes and it really seem to make a difference in the quality of life for that patient. It is really expensive and requires more than just a doctor script to get insurance to pay for but I wouldn’t want have give it up. 

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  • Posted

    Reading this, Are you saying the meds work & I'm thinking after talking to my Dr next week I would DEF have a DNR, I watched my Mom & 3 sisters die of this, I cannot be a burden to my Family, I know they woud say I'm not BUT, I know its not easy, took care of My Mom & Baby sister for years , It was a thing I would never change & Was Happy to do that for them & Very happy I was able to spend the time with them all until the last breath. T/Y for listening  Have a nice Saturday 

     

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    • Posted

      Yes, Modafinil works to provide energy. It was developed to help folks with narcolepsy (inability to stay awake) and people with shift work problems. Of course it is no cure, but does give me two nearly normal days at the cost of a third where I sleep 18 out of 24 hours. I highly recommend it for an energy boost
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    • Posted

      I have been on that for years, I don't take a lot of it, But seems it is not working anymore... I have a hard time sleeping, But All I seem to do is lay around & Rest, I hate that, I so want to be active. Maybe I should take the dose the Dr. said to take, I never take  what they say, Always less ! Time to give it a try again Thanks .Have a good one .Best Wishes

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  • Posted

    Hi Rebbacchus

    My hubby was diagnosed with IPF July 2016 - I realise it's very early stages but I get so worried about him.  He had his flu jab about a month ago and hasn't been the same since.  He has a chesty cough and cold symptoms and I've noticed that he tires very easily.  He still has a small gardening round but some days I really wish he would just stay home and rest.  He went for a lung function test last week and was supposed to have seen the specialist tomorrow but the appointment has been cancelled.  The only good thing about this was when he saw the nurse he asked her if there had been any change since his last appointment - she told him that there had been very little change which I must admit gave us both a boost.  Over the weekend he has complained of dizziness even when lying down - I'm hoping that it's an inner ear infection and told him to make an appointment to see the doctor but I know I will have to do it for him - he is so stubborn. 

    I am so glad that there is this forum and that you are so knowledgeable about the condition - thank you all who contribute. 

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  • Posted

    Send toRev Pneumol Clin.1985;41(2):91-100.[Respiratory function and alveolar biological changes under the effect of CDP-choline in pulmonary interstitial pathology: pulmonary fibrosis and sarcoidosis].[Article in French]

    Pacheco Y, Douss T, Pujol B, Revol A, Vergnon JM, Biot N, Brune J, Perrin-Fayolle M.Abstract

    Various anomalies of pulmonary surfactant have been described in relation to acute respiratory distress syndromes, hypersensitivity lung disease and pulmonary sarcoidosis. Phosphatidylcholine (PC) is the essential phospholipid component of pulmonary surfactant. Cytidine diphosphocholine (CDP-choline) is an essential intermediary in the biosynthesis of PC. The authors studied two groups of patients: one group consisted of diffuse interstitial pulmonary fibrosis and the other consisted of pulmonary sarcoidosis with parenchymal involvement. They observed quantitative and qualitative abnormalities of the phospholipid fractions of surfactant and more particularly of PC. The finding of a marked decrease in this phospholipid, especially in the cases of pulmonary fibrosis, justified the study of the therapeutic effects of CDP-choline. After one month of treatment with this substance, at a dose of 1 g I.M. per day, the PC fraction had returned to normal and, at the same time, there was an improvement in the PaO2 at rest and after exercise. Long term administration of CDP-choline appears to be valuable in the maintenance of the phospholipid equilibrium of pulmonary surfactant and in the improvement of the quality of alveolar gas exchange.

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