Sleep and IPF: What’s the Problem?

Charlene Marshall avatar

by Charlene Marshall |

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sleep quality, quality of life, IPF

younger than 30

After reading other columns on this site, I’ve come to realize I’m not the only person with a lung disease dealing with sleep issues. After being diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, I don’t recall sleep ever having been a problem until recently, in the last couple of months.

It has become nearly impossible for me to sleep through the night, and I can’t figure out why. It is really frustrating, and I know this frustration is not contributing to solving the problem. I often think about why I can’t sleep while I am trying to fall asleep. I don’t know if others reading this column have tips to share about what helps to get a good night’s sleep and feel rested, but if you do, I’d love to hear from you.

The challenges with sleep lately are not a result of my breathing, contrary to what you might think for a patient living with IPF. Of course, there are nights when I struggle to catch my breath when my pillows are not set up properly and I am laying too flat. There are also nights when my cannula falls off and I wake with a sudden jolt because I am not receiving enough supplemental oxygen, or when I find myself lying on my oxygen lines, restricting the flow.

These things tend to wake me in a panic, and my heart often feels like it is beating through my chest. So I need to do some self-talking to calm myself down enough to fall back asleep. However, the real challenges I find with my sleep lately are:

  • Bad dreams: I don’t know if this is a side effect of a medication I am on, or if it is something going on with my psyche. There have been some really scary ups and downs throughout this process, including some major medical interventions. So, some friends and I theorize that my body and brain may be responding to those times. What is startling about these dreams, which I would call nightmares, is that they are so vivid and, sadly, very violent. They are usually about someone forcing me to do something violent or someone violent coming after me and I can’t get away. When I wake up startled or upset, this does not help my shortness of breath. It bothers me that these dreams happen every night, or every other night, and I wake up very upset.
  • Body temperature changes: I can go from freezing cold to dripping with sweat in a matter of minutes. Usually this is enough to wake me up. Even though I have air conditioning, when I wake up really warm it takes me awhile to fall back asleep. Often I will get up and move to another space before I cool off enough to go back to bed.
  • Pain in muscles and joints: For other IPF sufferers out there, this likely won’t surprise you. From my dry cough or struggle to get a deep breath, I often have sore muscles throughout my back and chest. I’ve grown accustomed to this. However, the pain that often wakes me up at night is in my hips, knees, and legs. It may be restless leg syndrome or fluid retention in my lower extremities. Regardless of the cause, this pain is very unpleasant when it wakes me in the middle of the night.
  • Anxiety: Sadly, I think I am becoming more and more anxious as my disease progresses. I wrote a column last month about IPF-related anxiety, and while this doesn’t always manifest in physical symptoms, my brain feels like it is constantly running at full speed, and it takes a while to slow down. With the added things to remember since being diagnosed with IPF (medications, oxygen needs, etc.), I often find that I have to make lists and write everything down. It is not uncommon to wake out of a sound sleep, grab my phone, and add something that I suddenly remember to an electronic to-do list I have going.

To other IPF sufferers out there, do any of these things disturb your sleep on a regular basis? If so, I’d love to hear from you — we’re all in this together!

***

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Comments

Gary Ford avatar

Gary Ford

Charlene:
I experienced those things as well but the one thing that really helped me was being referred for a sleep apnea assessment...not fun...trying to sleep with that many electrodes on your head is impossible...but the specialist (who was a respirologist) said I didn't have sleep apnea but wondered why I was not on any heartburn medication...so I started to take Nexium, which reduced my cough at least by 80% so I could get to sleep...my transplant team also recommended taking Zopiclone for sleeping, which I am currently weaning myself off of...and did you know that each type of organ transplant patient have their own worries/anxieties...for example lung transplant patients are anxious - always worried about choking, not being able to get your breath...whereas kidney/pancreas are angry at the world...since they are in so much pain...so relax, you are normal.
Warmest regards and best wishes,
Gary

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William N Beauvais avatar

William N Beauvais

Sleep Apnea was a thorn for me,but when I learned that I have IPF my cpak became my best friend. I couple cpak and oxygen and sleep like a baby. I have sleep problems once in awhile. I also had pillow high and low problem. My wife came home with a my pillow and this has helped. When at times when I lay down I start to Cough and I take a cough syrup and quites the coughing and I sleep quite well. The Cpak does dry my nose in the am. and I drink a little lemon and water and this helps wet the tung. And spray nose with saliene water. This works for me. In the morning I do cough a lot to get the nasty mugus up. I use a simple flutter and this help a lot. My days are a lot better. A good night sleep is worth it's weight in gold. I have at this for 4 plus years. Bill B

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Diane Williams avatar

Diane Williams

I could have written this entire article from nightly experiences. It makes me feel better knowing it’s not just my set of problems. The violent nightmares and lack of sleep trouble me, but using a diffuser with essential oils at night is very very helpful also sleepy time tea and melatonin. I am in the process of eliminating chemicals from my home, and this is making a huge difference I wish there was an IPF support group in my area, Thank you for your article .

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Charlene Marshall avatar

Charlene Marshall

Hi Diane,

Thank you for reading my column and for getting in touch with me via the comments. So sorry you're also experiencing these sleep-related struggles, they are so frustrating aren't they? I do agree though, that there is comfort found in others' experiencing something similar and yes, please know that many people experience similar struggles as we do with sleeping. I am so glad that the essential oils help you - I am also a huge essential oil user. Do you find a specific combination of oils help you? I'd be curious to know :)

My cousins sell DoTerra oils and have also almost completely eliminated chemicals from their home through use of natural products such as toothpaste, soaps, cleaning supplies, etc. I eventually want to get there too, and am slowly moving towards this. Are you finding the 'huge difference' is specific to your ability to breathe? Hopefully so :)

Take care, and if you haven't joined out PF forums, it is a great platform to be part of ... it is like an online support group so we'd love to have you if you're interested: https://pulmonaryfibrosisnews.com/forums/

Warm regards,
Charlene.

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Carolyn Lee avatar

Carolyn Lee

I am 67 years old and was diagnosed in January of this year with IPF. I have been having sleeping problems and anxiety lately. Things you mentioned are familiar to me. Some days I'm up and other days down. My most troubling symptom is fatigue .....now I have all these other things popping up. Praying for you and all others dealing with this disease and for a cure!

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Phyllis Richardson avatar

Phyllis Richardson

Hi Carolyn, My name is Phyllis I understand. It is 4:45 in the morning and I haven't been to sleep. Every time I began to drift off I start having these nightmares, mostly about my 82 year old mother transitioning in my arms. I wake up crying and out of breath. I am taking melatonin, I drink bedtime tea, I elevate my pillow. I also take cough syrup. I get up at 5:30 for work so I literally have 45 minutes to try to rest. I am at a lost now. I am experiencing so many strange symptoms lately. When I received the diagnosis 4 years ago it was the cough, the fatique and shortness of breath. Now I feel if a ton of weights sitting in my chest. I can't sleep, I am extremely exhausted and emotional. I just submitted my letter of resignation because I work around children and I am sick all the time with Pneumonia, or other respiratory infection. I just want to sleep even if it is just 5 hours. Does anyone have any other suggestions. I am scheduled to have a sleep study test soon.

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norman Beattie avatar

norman Beattie

Hi I have been diagnosed about 4 years ago and started experience sleep problem a year or so ago. I have used THC gummies before bed to help calm my anxiety of not being able to sleep. It helps most nights but not always.
Good luck
Norm

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Charlene Marshall avatar

Charlene Marshall

Hi Norman,

Thanks so much for reading my columns and reaching out via the comments, though I'm sorry you're experiencing sleep troubles with your IPF diagnosis. Sleep is so important for us, so it saddens me when this disease compromises our ability to get good rest. Thanks for the suggestion on the THC gummies, I've heard others had success with this as well. Take care and thanks for writing.
Charlene.

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Lynne Collett avatar

Lynne Collett

The only thing I do not have in this colum is the bad dreams. But I am not going n any Medes yet except for Spiriva.

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Nancy avatar

Nancy

I so enjoyed your light overview of your sleepless nights. I must tell you I have similar problems while catching a cat nap. ( centered prayer practice has helped rid me of my lists ) I laughed at the sight of wrapped 02 tube, pillow and me, cough cough. What a card we are given with IPF. Keep writing.

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MichaelBA avatar

MichaelBA

Strange dreams I get but for the most part not bad except when ya wake n can't seem to catch a breath. Anxiety is one biggest issues and for me zanax helps and sometimes just Good dark beer will work.The noise I make exhaling keeps me awake more than coughing does and the volume it takes to mask that internal breath most times would keep me awake as well. Laugh @ the nitemare and i'll scream at my noise.

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Lorena avatar

Lorena

Begore being dx with pulmonary fibrosis in August of 2017 I have been living with Rheumatoid Arthritis and side effects of cancer treatment in my 30s. I'm now 57. It's a long story which i shll spare you except to say i have something called Lynch Syndrome which is a genetic mutation that predisposes one to several cancers. I've had endometrial, colon and ovarian. I've spent many sleepless nights over the years experiencing what you describe. My therapist ginally put me on Trazadone. It's an antidepressant that is used for sleep. It's an excellent drug because you take as needed, the dose can be titrated and it's less sedating than actual sleeping pills. Sleep is so important! So just wanted to share what has worked for me. Goodluck. Lorena

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Cindy avatar

Cindy

Just wanted to comment on the Trazadone. I used to take it to help me sleep when the only issue I had was Fibromyalgia. Was prescribed 150mg/ night but more than 100 mg ALWAYS gave me nightmares. Horrible, demonic nightmares. Then I started having them even at lower doses so I had to stop taking it. It is a good med for sleep for most people however.
I was diagnosed with pulmonary fibrosis from Bird Fancier’s Disease 3yrs ago. Since then, as I drift off to sleep, I make occasional noises loud enough to wake me up. I do not usually groan in my sleep. Has anyone ever heard of someone doing this?

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Charlene Marshall avatar

Charlene Marshall

Hi Cindy,

Thanks so much for writing and sharing your experience with us. I've never taken Trazadone, so I can't comment on any personal experience with it. As for the noises in your sleep, I've not heard of other PF patients experiencing this but it might be a good question to ask the members of our PF forums: https://pulmonaryfibrosisnews.com/forums/. They're a great group of really supportive people, and may have experiences with this to share.
Char.

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Sandy avatar

Sandy

I have Xanax for anxiety and zolpadim for sleeping. However since I’ve had this nasty disease for two years, I’m handling the anxiety better so I haven’t taken one in a long time. The zolpadim just if I’ve had a few sleepless nights, but it seems to have regulated me into sleeping better. But when I wake up during the night, I just get up and pee and then right back to bed. No lights and no thinking helps me to go right back to sleep.

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Christopher Brooks avatar

Christopher Brooks

I've had IPF for 16 months. Lately I've experienced dreams that highlight this malady. One featured a character I saw in Big Trouble in Little China--he could inflate himself to incredible size. He was in my car, crowded with three others, and inflated himself until I could not expand my chest at all. I woke from that and put on my bedside oximeter: 87. I accessed my cannula immediately. Another night I attended a sumo wrestling match and display. I was selected from the audience, in spite of my protestations about my fibrosis, to come to the stage. Of course, a large wrestler ended up sitting on me. I could not expand my chest at all once again. I woke and checked my oximeter: 85. Back to supplemental oxygen. I never had such dreams until recently, when my "mild case of IPF" became a "moderate, moving to serious" case of IPF. I guess such dreams will become commonplace for me.

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Andrew Jackson avatar

Andrew Jackson

I'm 59 yrs old, and I was diagnosed with IPF in 2006. I did not follow up on any treatment for it at that time. slowly, as the yrs went by, I begin to feel the effects of my disease. December 21, 2013, I was put on oxygen. Within a month, I became totally dependant on it. Between 2013 of December and July 12,2014(when I received my Bi-lateral Lung transplant) I experienced most of the same thing as yourself. I remember waking up one night, and realizing my electricity was off, and my Concentrator alarm was going off. I also became afraid of being left alone, I feared getting panic attacks at that time. It's been 3 1/2 yrs now, and so far, I'm tolerating my meds very well. No longer need oxygen and workout 3 times a week. O2 level is 98 at rest, 94 when working out. My advice is to do all you can to maintain what strength you have left. God bless, a former ipf patient and lung transplant survivor.

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Sandy avatar

Sandy

So happy for you. You are one of the lucky ones!

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Al Clark avatar

Al Clark

I am 58 year old male diagnosed 2009. I immediately started working out, lost a lot of weight and held off the effects of IPF until this year. coughing ramped up and I failed a walk test so am now on Oxygen when sleeping and trying to exercise. When I first was diagnosed I had anxiety (I watched my mother die of this in 1986 and am still stunned how little progress has been made on this disease since then). Since I did not go downhill until recently my anxiety level has not been high; I guess I became acclimated to the situation. Sleeping now is difficult, between the noise of the oxygen machine and almost choking myself on the tubes while I sleep I seldom get a good nights sleep. I also wake up feeling very hot; and I can almost set my watch to it at a usual 3AM wake up.

It is encouraging to see Andrew's success. I am on OFEV but that does not seem to help. I am currently considering stem cell treatment.

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Donald Phillips avatar

Donald Phillips

OFEV does not help with the symptoms it only shows down the scarring. I am on 24/7 oxygen and use a concentrator for it. I have a 50 foot tube on it and can move around in my house anywhere. I sit it in another room at night and can’t hear it in my bedroom.

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Charlene Marshall avatar

Charlene Marshall

Hi Donald,

Thanks for reading my columns and reaching out via the comments.
You are correct - OFEV is intended to help slow the progression of the fibrosis, but it doesn't help with our symptoms unfortunately. Glad you've figured out a way to navigate around home with your oxygen :) Thanks for sharing! Charlene.

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Ellen Hays avatar

Ellen Hays

I was diagnosed with IPF over 7 years ago. Probably because of my lifetime of taking what life gives you and dealing with it, I continue to cope, trying to figure out what keeps me most comfortable. I, too, continue to deal with interrupted sleep for unknown causes but have found I sleep best in a cold room, with a good electric blanket on at a low setting to keep my upper body warm, and an extra blanket over my lower body. From my rear to toes I always get cold. There are times when I don't feel my legs are cold, but throw that extra blanket over them and soon go to sleep. It's worth a try. I have had the "sleep test" with no apnea problem and insomnia diagnosis.

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Michael Yudin avatar

Michael Yudin

Happy I found this site. I can relate to the other people with this problem.
Is there a special way to set up my pillow before sleep?

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Jan avatar

Jan

I am 83, diagnosed with IPF A year ago. Recently doctor has said I also have Pulmonary Hypertension. and gas put me on oxyfen.

Just started the oxygen day and night therapy. My nose constantly runs. Very annoying. Any input as to what would be helpful to control it.
i am becoming very stressed as my husband has MCI with extreme snort term memory. Do I need theraoy.

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Charlene Marshall avatar

Charlene Marshall

Good Morning Jan,

Thank you for reading my column and connecting via the comments. Sorry to hear of your IPF diagnosis a year ago, it just seems so cruel and unfair, doesn't it? Unfortunately it seems as though many of us living with IPF also have to deal with pulmonary hypertension, likely due to the stress on our heart from the poor lung function we have. Seems even more unfair!
Are you on oxygen 24/7 or just with exertion? I'm not sure about how to control the runny nose since starting oxygen, as this isn't something I've experienced. However, hopefully others see this post and will be able to offer some tips/advice. The one mistake I did make that I like to share with others, is not to use Vasaline in your nose to alleviate dryness. It is flammable, and I was doing this until my doctor very urgently advised otherwise.

In terms of needing the oxygen therapy; I would think yes based on your doctors assessment and prescribing it. It is so important that our oxygen saturations stay above 90, and having prescribed you oxygen, your doctor must have identified the drop in your oxygen sats. Hang in there, I know it is so hard to adjust to using oxygen. Please feel free to write any time if you have any more questions...we're in this together!

Kindest regards,
Charlene.

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Sandy avatar

Sandy

Jan, my nose constantly ran. One PF warrior said she used a cannula with shorter, wider prongs. I tried it and it has stopped about 80% of the constant running. Maybe this could work for you too!

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Charlene Marshall avatar

Charlene Marshall

Hi Sandy,

Thanks so much for getting in touch with Jan and I, and of course, for reading my columns. I actually didn't know about the cannulas with shorter, wider prongs and I am so glad you shared this. I am even more thrilled that it has worked for you to stop the constant nose running! Thanks for sharing such a great tip, I am confident that many others could benefit from this. I'm actually going to share it on our PF forums (and let folks know that you gave us the advice) so that more patients can benefit :)

Thanks again!
Charlene.

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Sandy avatar

Sandy

Ok, but I actually received the tip quite a while ago on one of the groups. Tried it and liked it, so I can’t take the credit. But to be more specific, Salter Labs ref 1600-7 with 7’ supply tube. I think it comes in a 4’ too. I get them through my oxygen supplier.

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Charlene Marshall avatar

Charlene Marshall

Hi Sandy,

Thanks for getting back in touch and clarifying! I'll give you the credit for mentioning it to me, how does that sound? :) Lol, I will confirm that you received the tip from another PF warrior in a support group though. So glad it worked for you! Thanks for clarifying the type of tubing that you use as well. This will be helpful!
Thanks,
Charlene.

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Kathleen Greco avatar

Kathleen Greco

Does anyone have bloating & stomach issues from the disease or the medication Esbriet ? My stomach is huge, I always had a bit of a tummy as well as all my sisters (5) I am 74 & have had disease since 2016 have been on esbriet almost a year.My stomach does not allow me to wear normal clothes...really & seems to affect my breathing at times.Surprised at how large my stomach is...anyone give me feedback ........Thank You

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Sandy avatar

Sandy

I don’t take espriet, but I have Cushing’s syndrome, which sounds similar to what you are experiencing. You can google it for lots of info.

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Charlene Marshall avatar

Charlene Marshall

Thanks for taking the time to reply Sandy, I am sure Kathleen appreciates your response :)
Sorry to hear you're dealing with Cushing's syndrome though. My friend has that as well and the symptoms sure can be unpleasant! Take care.
Charlene.

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Charlene Marshall avatar

Charlene Marshall

Hi Kathleen,

Thanks for reading my columns and for getting in touch via the comments. I always enjoy hearing from others, although I certainly wish it wasn't this cruel disease that is bringing us all together. I am not too helpful in terms of the Esbriet, as the anti-fibrotic medication that I am on is called OFEV. There is a wonderful forum with lots of information on Esbriet here: https://pulmonaryfibrosisnews.com/forums/forums/forum/esbriet-pirfenidone/ ... some of the members on there might be able to help you better with Esbriet-related symptoms. Sorry I can't be of more help! Feel free to reach out anytime, wishing you well Kathleen.

Warm regards,
Charlene.

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David Patterson avatar

David Patterson

I have been on Ofev for 6 mos. and have had wicked gas (up and down) since starting it. Talked to the suppliers pharmacist and went over how to take it best. 12 hrs between dose, take on a full stomach and take with water. This has helped me over the last 3 week's.

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Charlene Marshall avatar

Charlene Marshall

Hi David,

Thanks so much for reading my columns and sharing your experiences of Ofev with us over the past 6 months. It certainly can have unpleasant side effects, but I am glad the pharmacist reviewed the best way to consume it with you and I am glad to hear it is helping. I'll keep my fingers crossed for you that it continues!

Warm regards,
Charlene.

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Dennis Bosch avatar

Dennis Bosch

Hi
So good to find your site.
Im having trouble find a way to sleep sitting up .
I have an adjustable bed but I keep having to change the angle as my night goes on. Some nights its sitting in my recliner and some the bed but I can't sleep on my side this way.
Also to add a comment about what helps me . I listen to sacred music .
Thanks so much for all you do.
Dennis
Thanks Dennis

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Charlene Marshall avatar

Charlene Marshall

Hi Dennis,

Thanks so much for reading my columns and for reaching out via the comments. I always love hearing from others! We've been discussing how best to get a good night's sleep, while needing to be propped up, a lot on the PF News forum site. Have you visited there yet? You can find the site at: https://pulmonaryfibrosisnews.com/forums/ .. if you're interested. I know a lot of members have talked about different sleep positions that help them with their comfort and ability to breathe. Wedge/foam pillows are a popular solution, have you tried this in addition to your adjustable bed?

Thanks for sharing the tip about listening to sacred music too. Its amazing what music can do for us, isn't it?

Thanks again for your kind words and please feel free to write anytime.
Charlene.

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norman Beattie avatar

norman Beattie

Charlene thanks for your column it is very insightful and allows those of us with IPF to discuss frankly our problems. Sleep and anxiety are my biggest problems to date. I use a form wedge and have been taking Adavan at night and it helps for the first few hours but the sweats and shortnesss of breath are still a major concern. Keep up the column it helps. Hearing how others are dealing with specific mutual problems helps with planning how to deal with the future.

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Charlene Marshall avatar

Charlene Marshall

Hi Norman,

Thanks so much for reading my columns and getting in touch via the comments. I always appreciate hearing from others but certainly wish none of us had to deal with this cruel disease. Discussing it with others who truly understand does help though! Thanks for sharing what helps you with sleep and anxiety, these are so tough for many of us. I hope this gets a little easier for you.
Kind regards,
Charlene.

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JOAN Thorkelson avatar

JOAN Thorkelson

I am an IPF patient - are night sweats and breathing difficulties synonymous? It doesn't happen every night but when it does I change nightgowns and then fast breathing occurs - have you ever heard of this?

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Charlene Marshall avatar

Charlene Marshall

Hi Joan,

Thanks for reading my columns and reaching out via the comments. I have heard of a few patients discussing this topic on our forums, but unfortunately I don't recall anyone offering a definitive solution. You can check out the forums here and do a quick search on night sweats, if you want to read their contributions: https://pulmonaryfibrosisnews.com/forums/

It isn't something I experience, unless I'm running a fever then I get really bad sweats, so I can't share my own experience unfortunately. I hope you're able to get some relief of this soon though, Joan.

Take care,
Charlene.

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Cindy avatar

Cindy

My name is Cindy and was diagnosed in early 2018 with Fibrosis due to Bird Fanciers Disease. Just a comment on Ofev. My doctor put me on the lower dose for 2 months to see how I tolerated it then put me on higher dose. I have done really well so far with it. My only side effect has been a sore tongue and occasional heartburn. But I usu take it with 6-8 oz of a protein drink made with half water and half unsw almond milk. I am now 56yrs old. 5’4” and 203lbs. From July 2019- July 2020, my lung function dropped from 43% to 26% even tho I was not around any of the bird proteins. Then I started Ofev. My lung function dropped only 2% in past 5 months. (May I add I had lots of prayers.)
Here is my dilemma/ question:
My doc is at Duke in NC. TheY require a BMI of 27 or less to be put on transplant list. That means I have to lose approx 45 mor lbs. Ive lost 25 already. Considering I am so limited in moving around bc of such low lung function, Idk if I can lose that much in time. Should I go elsewhere for a second opinion? If so, where?

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Charlene Marshall avatar

Charlene Marshall

Hi Cindy,

Thanks so much for reading my columns and reaching out via the comments. Sorry to hear you're dealing with this cruel disease as well, and despite Ofev, you're experiencing a decline in your lung function. I'm glad to hear the Ofev seems to be slowing down the decline, that is good news. Regarding the transplant eligibility and weight, I would imagine different centers have different requirements. All will require a range of BMI though to ensure you can be successful pre and post surgery, I'm just not sure what those BMI ranges are though. Have you checked out the list of 'centers of excellence' in PF care? It is here if that is helpful: https://www.pulmonaryfibrosis.org/medical-community/pff-care-center-network .. it might be worth getting a second opinion at one of these places and/or calling to see their weight requirements for transplant. There are a lot of pulmonary rehab centers that can help you with weight loss despite immobility too :) Hope this helps!
Take care,
Charlene.

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