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PF support group survey
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17 Replies
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Hi I am very interested in the group support,to be able to interact with others who have IPF.I have had this lung disease for over 2 1/2 years now I am lucky that my Fibrosis is progressing slowly.Although not on oxygen yet I do get very short of breath, especially when exerting myself like making my bed or changing the linens,cooking or such.As for symptoms my acid reflux,I recently bought an adjustable bed which helped very much although I still get it during the day,I am very tired all the time,get bad pains in my head,some numbing and tingling in my extremities short of breath.and most of the other symptoms. I also have severe sleep apnea Diabetes type2 Kidney damage,osteoarthritis.I think the support group will be a big help Sheila Blanchard
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Hi Sheila,
Thanks so much for elaborating on the benefit of a PF support group, and how it would help you. It’s so important for us to capture these details in our data, so I appreciate it. Did you also fill out the survey for us?
I am really grateful as well that your fibrosis is progressing slowly, that is good news but I know it doesn’t make the daily tasks any easier. I do have oxygen but try not to wear it all the time so my lungs don’t become dependent on it, and the shortness of breath that you described when doing things like making my bed, cooking, etc is very real. Its terrible isn’t it? So sorry to hear about the other issues you’re also dealing with, it must be a full-time job just managing those symptoms. What kinds of pain in your head do you have Sheila? Ive been dealing with persistent headaches the last few weeks, sometimes they’re so bad I have to shut everything down and just go to bed, but I don’t think they’re migraines. I’ve been trying to track when it is happening (frequency, intensity, length, etc) to see if I can pinpoint it to anything. Maybe it is a side effects of IPF?
Hang in there and thanks for your valuable feedback on the support group. We hope if enough data shows it would be beneficial then we’ll be able to start it up!
Take care,
Charlene.
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I was diagnosed in September of 2015 and am on supplemental oxygen. The progression of my fibrosis has slowed. Although anxious about it, and with the help of this forum, have recently taken my first airplane trip to Mexico. I would like some topics to be how nutrition helps and hurts; adjusting medication and activities when feeling weaker; exercise and rest; how to treat when getting the flu or pneumonia; and alternative supplements.
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Hi Patsy,
Thanks so much for getting in touch with us and sharing a bit about your experience. I sure wish it wasn’t this cruel disease that brings us altogether though. Really glad you were able to take your first airplane ride since your diagnosis, how did that go for you? I’m so happy to hear that the forums helped even a little bit with that decision and hope it was a wonderful trip.
Your topic ideas are fantastic ones for a support group. I’ll add them to the list I am compiling, nutrition is definitely a big one I believe. Thanks so much for sharing these! Did you also complete our survey for the support group to ensure your thoughts are captured? The more people that participate the more data we will have to decide on proceeding. I hope we can!
Take care Patsy, and feel free to write anytime.
Warm regards,
Charlene.
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I’m unsure about the best way to conduct a support group but am willing to try all the suggested ways. I agree that nutrition is an important subject. I live alone and find that feeding myself well is a real challenge. Others bring me meals a couple of times a week but I fall back to the “cereal for dinner” habit much more than I should. I also have questions about exercise – being on oxygen if I exert myself for more than three minutes seems to limit what I can do – would love suggestions of what others do. Don’t know how much I should push myself…. Another conversation would be how to talk to others about our disease. I need a good elevator speech that’s not the voice of death but gets the point across that I am quite seriously ill even though I look perfectly normal. I am so grateful for this forum and look forward to sharing with all of you in any way…I’m in Chapel Hill, NC and a patient at UNC – anyone else nearby?
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Hi NanaJane,
Great to hear from you, I hope you’re having a nice day!
Really good questions, and I’m happy to help where I can. Do you know what I just got for Christmas and wish I would have bought it for myself months ago as it is making healthy meals so much easier? It’s no secret that things with sugar and carbs (ie. pastas) are bad for us, but I love making larger dishes on the weekends and saving them for leftovers/lunches for the week, things like lasagna or chicken alfredo. Of course both of those are carb-filled, but for Christmas I got a spiralizer to make veggie noodles, ie. long zucchini noodles and I am loving it! I now don’t feel bad making big “pasta-like” dishes because it is healthy, and I am also substituting diced up cauliflower for rice too. These are two easy ways I’ve really cut out a lot of carbs/sugar from my diet with a relatively simple process. Would it work for you to make a large dish on the weekend like I do, and then save some portions for just heated up dinners during the week? I often find I am too tired to cook a meal after work.
About the exercise, have you been examined by a pulmonary physiotherapist for exercise? The most important thing, especially if you live alone, as it to monitor your oxygen levels while exercising and making sure they don’t fall below 90% (many say 88% but I tend to err on the side of caution and say 90 myself) because it can cause trouble for your other organs, even if you don’t feel short of breath. The PT should evaluate your abilities and physiological responses to exercise (ie. max heart-rate) along with your oxygen requirements while being active. Can you ask your doctor about this, just to ensure you’re being safe?
I am really bad at my elevator speech too and think it would be helpful to ‘perfect it’ for folks, seeing as I also look pretty healthy, with the exception of when I am wearing my oxygen. Good idea! I may post this as a topic idea on the forum and invite others to contribute? That should give us some good tools to work with 🙂
I am in Canada, so unfortunately no where near Chapel Hill. I hope others are close by for you though. Enjoy your day!
Charlene.
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I have posted before but not for a while. I was diagnosed in April, 2016 and began OFEV in February, 2017. My disease has not progressed, all my tests are normal, except for the CT scan. I am not on oxygen and do not cough, so I appear healthy to all my friends. Some even ask me if I still have IPF! There are two other gentlemen who live in our community who have IPF and are on oxygen and in wheelchairs and I guess I confuse folks. I live in a small town called Aiken in South Carolina. My doctors are at UMC in Charleston, about 2 hours away. I started on 150 mg twice daily, but because of side effects we reduced it to 100 mg twice a day, working better.
i would like to participate in a support group, we did have a small one through church, but some got too sick to participate and now I just visit with another woman at least once a week. I exercise, try to walk 2 miles every other day and play golf 3 times a week, but it is hilly here and going up and down hills can be hard some days. And I have allergies, so I never know if I am out of breath because of IPF or I am just stuffy from allergies. I do have mild acid reflux, but it is controlled by diet and medication and we do have a bed I can elevate. I know I am lucky the disease is progressing slowly, but I do need to push myself to continue to exercise. I do not sleep well, no trouble falling asleep, but do have trouble staying asleep, but this is not new, been going on for years, just the way I am wired, I guess.
Happy New Year!
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Hi Jacki,
Great to hear from you, and thanks for providing us an update on how things are going for you! I am really happy to hear that your disease sounds stable, that is wonderful news. I am also glad to hear you aren’t using supplemental oxygen yet, and don’t have the pesky cough. That said, I can certainly understand how this might be a challenge to your friends who think you’re “cured” of IPF. I think my friends would think this as well!
Your post and interest in a support group prompted me to connect with another staff member at BioNews who is leading the data collection on whether or not a support group would be helpful for members of this forum. I just wrote to him as a follow up, so stay tuned on where we are with this :). I’d love to offer something like this through our forums community, we just have to figure out the best way to do this with so many people potentially interested. I’m really glad to know of your interest though, so thank you for sharing that it would be beneficial.
Do you find anything particularly helpful when it comes to trying to stay asleep, or even falling asleep? Lately I am really struggling with both and it is impacting my ability to function during the day, even more than just living with IPF is…. curious to hear from you.
Cheers, and happy new year!
Charlene. -
Hey Charlene, thank you for all you do on this site. When I cannot sleep, waking up at 3:00 or 3:30, I basically do nothing. I try to turn off my thoughts, think of a black wall, and sometimes that works. I am a Guardian ad Litem and if there is something going on in one of my cases that will keep me awake, I worry about y kids or sometimes I am just mad at the system in general. I have gotten up to read, and that does help me get sleepy, but mostly I just toss and turn listening to the grandfather clock chime. I do eventually fall asleep. The good news is after a few nights like those I am so tired I sleep through the night!!
Again thank you for being such a good listener and responding to everyone! It is amazing how we are all in a similar but different place in this crazy disease.
Hugs, and Blessings in the New Year!
Jacki
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Hi Jacki,
It is such a pleasure to be a forum moderator on this site, and be among so many wonderful people in this online community! Thank you for your kind words, they certainly have started my day off in an amazing way …
Sorry to hear of your struggles with waking up through the night. That is just exhausting, isn’t it? I don’t find I wake up through the night, but really have trouble falling asleep. I’ve started to use an iPhone app filled with sleep stories or deep meditation and so far 3/3 nights I’ve been able to fall asleep, although it still takes me some time. Have you ever tried this for when you need to go back to sleep? It seems to focus my thoughts a bit. I can imagine how your job would keep you awake, my mind would be busy thinking of that as well I would imagine! Kudos to you for doing such important work 🙂
Wishing you all the best this upcoming year, and thanks for being part of our community.
Charlene.
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Hi Charlene,
Rudi from down under here again, while I was working I used to stay awake till early morning thinking about everything and basically silly stuff desperately trying to sleep.
I picked up a book on self-hypnosis at a trash sale and after reading it I followed one of the examples written,
When you go to bed no matter how angry or bad you feel lie down and when you’re ready, start consciously thinking about your breathing, think to yourself the word SLEEP, think it slowly so it coincides with every breath you take.
SLEEP is a stupid word to say but it takes away the concentration of your other problems.
We can’t really think of many things at one time so after a while, the brain resists what you tell it but persistence is the key.
It took Pavlov 21 days to train a dog so give yourself a chance and persist.
It may not work every time but it’s ok for me.
May I say Charlene that I never ever thought that young people would succumb to this disease, how can that be as I worked in dusty dirty environments and it’s taken 50 years to find I have it.
My heart goes out to all of you.
Rudi.
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Hi Rudi,
Great to hear from you! Hey, if it is warm down under right now can you send some of that warmth up to us in Canada? We’re bracing for a wicked winter storm #3 over Tuesday and Wednesday. Everything is already a thick sheet of ice and we saw record temperatures of -35 degrees celsius a couple of weeks ago! Whereabouts in Australia are you located? I heard SA (Adelaide in particular) is incredibly warm at the moment…
Really interesting to read about your hypnosis trick, especially about falling asleep. I will give it a try, as unfortunately sleep is something I often have a difficult time with. I read it takes 10 full days to make or break a habit, so I really need to work more on meditation if I think it’ll help me with sleeping.
Unfortunately, this cruel disease isn’t selective on who it “preys” on. I know several people under 50 who are living with IPF, it sure is tough. I hope in my lifetime I see a cure for this illness – I’d like nothing more!
Take care,
Charlene.
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Hello, don’t really know what to say except I’ve been Diag with IPF 2 months ago. I feel I’ve had for 8 yrs or more, have been sob all that time. I think
it’s slow progressing. Just got my Rx for OFEV today. Will start tomorrow. I do admit I’m afraid because of hearing about so many unable to tolerate. I really am going to work on my diet so I can take. So thankful I now know what I have, so I can deal with it the best I can. I’m in between the mild/moderate condition. I guess I just need to hear from someone who has had many yrs like me and which the OFEV has helped. I know everyone is different. Thanks, Dana
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Hi @danakelley
We’re really glad you found these forums, and thanks for connecting with us. This is an incredible platform of encouraging, supportive and wonderful people, you’ll find a lot of information here and feel free to start discussions that are of interest to you as well. I know it greatly benefits us to connect with one another, and hear from other patients. Stay safe, and feel free to write us anytime!
Charlene.
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I have had luck with Gabapentin prescription and Tart Cherry Juice Cheribundi at night evening before bed to help me sleep. I am worse off than you guys fromCovid 15 LoL. Ate up my right lung. Lack of diagnosis and treatment also. Many just know COPD and Asthma and not ILD PF. My Johns Hopkins doctor was against steroid use but then went on TV giving it to to Trump. Go figure. I like the format we have now here. It can join in between things when I have time. I find the feedback very helpful in my self advocacy which is essential to our survival. Thanks.
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@6yearvet
Hi Ben,
I’m glad to hear you’re finding the forums helpful, and yes the platform of conversation is definitely conducive to responding when you can, which I like too! Happy to hear Gabapentin is working for you, though sorry to hear about your difficult experience with COVID. This is such a terrible virus, and hopefully it leads physicians to a better understanding of ILDs, as most do know only COPD and Asthma. Take care and stay safe!
Char. -
One thing I haven’t seen here is sleeping with Cpap. I would get so tired in the afternoon 3-4 times a week, was just exhausted. Thought it was just because I had to work at breathing that wore me out. My pulmonologist suggested I get sleep study. I was having 10 disruptions and hr, so he prescribed the Cpap. I really hated the idea,I’d do anything to get some energy back, so I got set up with it. I’ve had now for 6 weeks and can, just now, see a big difference. Yes it does take some getting used to, there are times you want to jerk that thing off. I couldn’t just use for more than 4 hrs, Medicare will pay for if u use 4 hrs a nite. Now I’m up to 6-8 hrs and am really starting to see a difference. I sleep deeply. Just FYI
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