pulmonary fibrosis

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i have been diagnosed with IPF since January 2015 this has been confirmed after a few lung test. i am due to have a ecocardiogram test next week.  since January my breathing and coughing has got a lot worse. I use fostair inhaler. i can bearly lie down to sleep most of my sleeping is in a chair because the coughing is just too much. I found the specialist Dr reluctant to expain the results of the lung tests. she finally told me that only 50% of my lung is fuctioning, what does that mean? but she is not recommending oxygen relief because oxygen level is ok at resting. The specialist has recommended that i see a specialist team with a view to starting steriod treatment which she suggest may or may not work.  I sleep little, i cannot even laugh without getting into a coughing fit, my wife does all the driving, labouring work, i cannot even carry a small bag of shopping 10 steps without being out of breath. I tried to ask the right questions with the Specialist but i dont know what to ask and i feel they won't expain anything unless you ask the right question. do i have 1 year or 10 ten years to live, how much damage has been down to my lungs, i don't know. where do i go from here, can anyone help!

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  • Posted

    Hello, my primary care (general practitioner) doctor explained about my pulmonary function test (PFT) after I took it for the first time. It was difficult for me to understand, so I understood basicallly one or two things. I understood that where it states, FEV1, that is what percentage of lungs used for breathing. There should be three different results, since we blew into the pipe three different times. They use the highest result for records. All the rest of the PFT still is difficult for me to understand, but the main one that seems important to me is the FEV1 (important to me that is). It is good to have a PFT test yearly, since it shoulds how fast our lungs are progressing. For example: if FEV1 was 37% first year, and, 25% this year, then lungs have progressed and the new stage is labeled as, very severe stage. 

    Also, it is a good idea to purchase yourself an 'Oximeter'. Oximeter's can be purchased on Amazon or any online drug store. They clip on the finger then give your oxygen saturation percentage. I carry mine everywhere. If percentage is 90-100%, then is considered safe or good oxygen saturation, but anything under 90%, is not good, meaning sats are too low. If living daily with that low oxygen sats percent, then possibly damage to body's internal organs, such as the heart, kidneys, etc. could slowly occur (on daily basis).  So it is very important that you have supplemental oxygen if the oxygen sats stay lower than 90% on a daily basis..very serious. Your doctor didn't seem to think you needed supplemental oxygen. But, from what you said about your walking being restricted, maybe you need it for activities, but not for sitting or sleeping purposes? This is why an oximeter is nice to have, for testing if your oxygen sats goes down when you are walking. Many people use oxygen for activities only, and not for sitting. 

    But, judging by the way you are restricted when walking, you may be dropping your oxygen level when doing activities, and may need it during those time, and not when sitting down? This is why a good ole Oximeter is a good thing to have.  

    I would suggest for you to purchase yourself a Oximeter.  I use my Oximeter quite a lot, due to checking my O2 sats % daily. If your O2 sats % go very low, do speak with your specialist and have the doctor prescribe you supplemental oxygen, since it has been proven that supplemental oxygen causes us to live longer due to taking care of our inner vital organs, since it helps keep our oxygen from dropping daily below 90%. 

    Supplemental oxygen helps with may other things too...I use supplemental oxygen every day. I wish I didn't have to use it, but, it has helped me tremendously, so I won't go a day without it. It has helped me with many other things such as, morning headaches, struggling to walk longer distances, health-feel much better, coughing, etc.  

    I also have purchased a walker from Amazon. I got mine for only $14, and it is brand new. I also have trouble with walking far. My walking is very restricted. The walker contains a seat that is very valuable for me. It makes walking longer distance easier and less frightening. The only thing is, I have to watch the walking is not too far, or I will get worn out and can't get back to where I first started...lol. 

    Also, regarding sleeping, I trained myself to sleep with two or three soft pillows on top of each other, and lay on my right side. I do breathing exercises until my SOB calms down after I lay down. I breath in my nose, and out my mouth. I count to two while breathing in the nose, and exhale with pursed lips (like blowing out candle lips) with a count of four or six. I do that over and over, until my SOB gets better. This breathing is one of the best thing's I've learned! It helps me whenever any SOB comes over me...I do it when walking too. A nurse in the hospital taught me this simple trick, and I have been doing it for three years when needed, and it helps me relax and keeps my SOB under 'my' control as best possible. I sit and meditate daily while doing my breathing exercises. After a while it should come naturally whenever SOB pops up. Anyhow, I use two pillows and lay down always on my right side and if I have to perform the 'pursed lip breathing' exercises, until SOB subsides. Also, if anything, the 'pursed lip breathing' is so calming and relaxing. I have been told that the lifespan for PF is short, but I have a friend who was told many years ago that she was only to live about 2-3 years, but it is going on 9 years now, and she is still strong. It depends on age, size, health, etc...many factors goes into it. 

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  • Posted

    Forgot to add.......Ask your doctor to prescribe 'Pulmonary Rehab', or something similar, since they education plus exercise. The exercise helps make us stronger, and many have to rely on it, or they can't function properly daily. The exercise itself can do wonders...can make the life span longer too, so I've heard. The technicians at Rehab have taught me a lot of things, and also, it is nice to get out in life and be around other people that have my same condition and issues. I learn a lot about things from them too! 

    Also, if you are smoking, which I hope not, it is best to quit, since it makes the condition progress much faster. 

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    • Posted

      Thank you so much Brenda the information you have provided is extremely useful. i am going to see my doctor re pulmonary rehab. I think if i could manage my breathing better that may help a lot. The specialist Dr is arranging for me to see another Dr at another hospital which specialises in plumonary lung conditions.  I am hoping that something may come of this.  However, I am very concerned about the long wait which is between 6 and 12 weeks, and with no oxygen life is hard going.
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    • Posted

      You are welcome! I had a rough start, and have come far, learning new and newer things, one step at a time. 

      I am wondering if you could call your Dr., and speak with your Dr. (or nurse), and see if they could call your oxygen provider, and see if they could set you up with oxygen, and then if they decide you do not need it, take you off during one of your near future appointments? 

      I am glad to be of help, and I do help that I have helped, keep us updated! Brenda xo

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  • Posted

    Hello there Hope,

    i was diagnosed with IPF two years ago, and the disease is progressing slowly.  However, you should use a specialists in lung diseases, not just your general practitioner.  It is VERY IMPORTANT TO KNOW THAT IN MAY 2014 THERE WAS A BIG ARTICLE IN THE NEW ENGLAND JOURNAL OF MEDICINE THAT ANNOUCED A NEW DRUG called Perfenidone, that is the first ever that is effective in slowing  and/or stopping IPF.   I have been on the drug for two years and it seems quite effective.  It is MOST important to get the drug, which is expensive.  Fortunately, living in France I get it free.

    in addition I have an oxygen machine.  The Philips company make two machines for supplementary oxygen, one for at home, and one for going out and about.  The interesting thing is that they do not use bottled oxygen. Instead, they pump air through a membrane that lets through oxygen and holds back nitrogen.  So with no pressure bottles you get 85% oxygen.  The small portable machine has a battery that lasts for about 1 hour and then has to be recharged.(I have three batteries, so I can be out and about for about three hours at a time if walking). You can even plug it into the car battery while driving. The big machine runs off the mains electricity.  With the two of them you can live quite a reasonable life.  I use the mains machine while asleep.  Again, I get both of these on the state medical system for free..

    My general physician, who is something if a specialist in lungs, tells me to use oxygen whenever I feel I need it, because not to do so risks straining the heart.  I agree with Btenda, that you should use it as often as possible, because you are clearly already worse than I am.   I don't know what my life expectancy is, ( I am 80 years old), but I expect at least a couple of years more.  The disease is progressing, but not rapidly.

    good luck. And make sure you get specialists who really know their stuff.

    neville moray

     

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    • Posted

      Thank you Neville the oxygen now and again seems just what i need.

      The Specialist Dr who organised the lung tests have said that when i go for my appointment in a few months time at the other hospital I will be introduced to Perfenidone, but she does not thing i need oxygen. the thought of walking anywhere where there is no visible seating area to me is unthinkable, the thought of not been able to sit down to rest when i am out of breath or to walk back terrifies me so i won't go. The coughing is the worst, my chest is painful, i am due to have the ecocardiogram on monday hoping that my heart is not suffering as well. i am 66, not smoking.

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  • Posted

    Hope,  you mentioned to Michael that you can't bear to go places due to seating. I know exactly that feeling too. I struggle walking far, and am very restricted too. I can't bear not having a seat where ever I walk to...the thought is unbearable to walk and not have seats, or to have to walk back in order to sit. 

    Please purchase yourself a 'Walker', you can purchase them online, and the prices vary, the cheaper ones are just as good as the expensive ones, in my opinion. I purchased one from Amazon for only $14. It was a rare deal on Amazon, since they usually costs as low as $40. The Walker helps me tremendously. I also use it in my kitchen, since I can roll it to the stove, roll it to the sink, and sit while I do house hold chores. In public, I walk with it, and then sit. I have to sit about every thirty feet or so.

    My next venture is to purchase a electric mobile scooter. I also plan to purchase my own portable oxygen concentrator too. 

    Check out "walkers", so many of us benefit from them...help with independence and worrying too. 

    Also, thank you Michael, since I agree with you regarding she need's to have supplemental oxygen, since it can put strain on the heart, if not using it. The heart and lungs work together. 

    Hope, I wish you the best of luck, and please keep us updated!

    xo

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  • Posted

    The portable oxygen concentrator by Philips is called "SimplyGo".  If you get one you should get an extra battery, so when you are out and about and the battery runs down, in between 1 hour and 3 hours depending on the rate of oxygen consumption, you can slip the second battery in until you get home, then recharge both of them.  If you use it in "pulsed" mode at 1.5 liters per minute it will last between 2 and 3 hours per battery charge.  At 3.0 liters a minute it will last for about 1 hour.  You can find details on the web. And I think you can buy it on Amazon if your doctor won't get it for you.  Are you on a State medical system or in the USA?

    it is VERY important to get on Pirfenidone as soon as possible.  The earlier in the disease you take it the more effective it is. BULLY YOUR DOCTOR to get you onto it ASAP.

    all the best,

    neville

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    • Posted

      Thanks Neville for this information. Since speaking to you and Brenda i feel more empowered and uplifted. i have rang my doctor and waiting for a response re the oxygen and pushing for an ealier date at the hospital to start the pirfenidone, on Monday i will ring the hospital and chase things up. in the meantime i am trying to keep on top of this awful coughing and my blocked and runny nose.
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    • Posted

      Hi Hope, I just wanted to add that for the blocked sinus and runny nose, I was given a prescribed nasal spray which works great for me. I use it once daily for about five days, and it helps. It is called, Fluticasone Propionate.
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    • Posted

      Thank you Brenda. These aids are available yet the specialist who organised the lung tests never mentioned anything. I am so glad to have someone to talk with.
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    • Posted

      You are welcome, and if you need any help with anything, please don't hesitate to ask, because that is what we are all here for together, in order to help each other. xo
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