Living with IPF vs When Diagnosed

[Charlene Marshall]

Hi Sandra,

 

Thank you so much for creating this topic and for sharing your experiences of when you were first diagnosed vs. living with IPF now. What an excellent topic!

I also remember my first year of being diagnosed, it was terrifying and I spent a lot of time debating how and whether or not to tell my friends and extended family. Of course, my immediately family knew but I didn’t know how to tell others I had a life-threatening illness, and one that they likely knew nothing about. When I did tell people, it was after I processed it (as much I could at that time, anyway…) and it felt like I just spit it out to others with no emotion, almost as if it was a narrative that was happening to someone else and not me. I still don’t know why I even questioned whether or not to share with friends and family who love me, as they have been some of my biggest supporters. Did you know anyone with IPF when you were diagnosed, or did you know of the disease?

I will keep my fingers crossed that you can remain on 2litres of O2 for a long time yet and that your FVC remains stable. Where a bouts do you reside Sandra?

Thanks again for writing and I look forward to getting to know you more 🙂

Charlene

[Sandra Seabrooks Bush Connor]

Charlene, I do not know anyone with this disease nor did I even know what it was or what it meant to my life.  My first Pulmonologist showed me a ct of my lungs saying I had honeycombing, broken glass???  I had no idea what he was talking about.  I even asked him if he was concerned.  He said of course he was and that was it.  Everything I have learned about IPF is from the wonderful groups on Facebook and pulmonaryfibrosisnews.com and through google and YouTube.  Thank God for these aids, and now I have IPF friends all over the world!  Oh, I reside in Florida, in a beautiful retirement community.  I’ll be 77 in April.

[Charlene Marshall]

Hi Sandra,

Thank you so much for your reply! I totally agree with you, I didn’t know anyone with IPF either before I was diagnosed, it was really scary to read everything online. Were your initial symptoms shortness of breath, dry cough, etc? On average, they say it takes about 16 months for people to be diagnosed with this disease. I was lucky, they suspected it after about 9 months and I was officially diagnosed 13 months after my first set of symptoms. Are you considering, or will you ever consider lung transplantation to ‘cure’ your IPF?

I also am so thankful for the groups online, including Facebook, PF News, etc. It gives me a chance to connect with others who truly understand what it is like to live with a lung disease. I’m also so honoured to be moderating this forum, as I think it has a really great potential to connect others in one platform that has multiple uses. If you know anyone else who is looking to connect with other patients, please share this forum link with them (https://pulmonaryfibrosisnews.com/forums) 🙂

Please feel free to connect any time Sandra. We’re so glad you’re here!

Charlene

Pulmonary Fibrosis News Forums

[Sandra Seabrooks Bush Connor]

I started with a continual cough, sometimes with spitting up mucus, around 2003.  I went to a few doctors over the years, but they could find nothing wrong.  I sang in a 140 person choir of all retirees here and had to finally drop out in 2014 because I could no longer sing because of running out of breath.  I stopped doing everything; golfing, playing card games with the girls and volunteering for the local hospital. I even stopped cooking!  Then one day I could no longer get my breath and my husband called 911 on October 30 2015.

I went to Gainesville to see about the transplant and I didn’t qualify.  The doctor said if they opened me up, my bones would fall apart.  Secretly I was glad because I was 75 at the time and really didn’t want to go through a major surgery.

[gil]

Sandra,

I believe you and I are some of the lucky ones.  We didn’t get the symptoms until our 60’s and 70’s.   I am 70 years old and last year is when I first really felt sad (depression?) that I had IPF.  Perhaps it is because that is about the time IPF prevented me from doing something I really enjoyed.  Since then, a couple of my photography buddies started going on trips without me….

For the most part I am grateful, I was diagnosed in 2010 -2011 and until recently it hasn’t been too bad. Yet there are moments when I feel depressed, usually when  thinking of what is to come and more so when IPF interferes with something I enjoy doing.  It was one of the moments when I felt more depressed than alive that I decided to see how other people with IPF deal with the illness.  I was lucky in that I ran across one of Charlene’s blogs which let me to rethink my attitudes and beliefs about life and IPF.  Until I saw Charlene’s blog it had never occurred to me that young people could have IPF.  I am beginning to understand IPF in new ways and how fortunate I have been; but, I still hate having fibrosis.

[Charlene Marshall]

Hi Sandra and Gil,

I really appreciate the dialogue we’re having here and am very thankful that you both are willing to share your experiences. It is so hard to know that something isn’t right, especially when you no longer can participate in all of the things you could before because of being short of breath. It is even harder, and more frustrating when it seems like there are no answers for why you feel so short of breath. I remember thinking this for about 9 months, “am I just imagining this? why can’t I breathe doing such simple tasks?”. These were questions I asked constantly before my diagnosis, and because I didn’t have an answer (at the time) I chalked it up to any reason I could, such as, “maybe I’m just getting sick”, or “the air quality must not be very good”. It was really hard, and in a way, when I did receive my diagnosis, although I didn’t want it to be IPF, I felt kind of relieved that we had an answer. Did either of you ever feel that way, even a little bit, when you were diagnosed?

Gil, I remember also feeling similar to you, especially when others continued on doing the things I once loved, but without me. I was never angry at them for this, or resentful, as I wanted them to fully enjoy their lives, but I sure felt sad and think I might have even fallen into a little bit of depression. A sports team I used to play on travelled to Australia for a National championship and I couldn’t go (although I have been to Australia before) and that was devastating for me. What tricks did you use to reframe that depression to the gratitude you said you feel in the second paragraph of your post? I am so very grateful to know that my columns found you during a time of sadness, when you were seeking answers about how others coped with IPF. I recently wrote a column about this, but I never in my wildest dreams imagined I would be writing for a publishing company on life-threatening illnesses (mainly because 1. I hated English in school and 2. I never thought I would be diagnosed with IPF), but in a way I am really grateful that I have been. It has enabled me to connect with more people than I thought possible, and establish unique friendships. I still hate having fibrosis too, but as you mentioned it is so important to be grateful. Thank you both for your posts and I look forward to continuing to chat more 🙂

Charlene

[Sandra Seabrooks Bush Connor]

I feel kind of stupid because I felt myself getting weaker, but never tied it to not getting enough oxygen!  Who thinks of that??  I chalked it up to getting older and this is how it must feel.  Had I been younger…  oh well.  When I was diagnosed I had no idea what it even was. The Pulmonologist in the hospital explained about the lungs, but never about the life span being shortened.  Had to read that online.  I was depressed for a while, but I have always been a positive person and it didn’t last too long, a few months perhaps.  I have always felt it be me rather than anyone else in my family.

[Charlene Marshall]

Hi Sandra,

Thanks for your reply. No need to feel bad about what you did or didn’t do when you were starting to feel different, as my transplant coordinator always tells me: “thinking back to what if/could have/should have steals your joy from today”. I used to roll my eyes at her when she’d tell me this but it has stuck in my head and has been applicable to many different situations that I’ve encountered since I was diagnosed. Plus, the symptoms of PF are so easy to chalk up to something else, I completely agree with you. It’s interesting because I was only 28 and when diagnosed and I knew something was wrong but never imagined I had a lung disease since I was supposed to be in my prime years of optimal health! I really admire your commitment to positivity, and it is so interesting to hear you say that you are glad it is you than someone else in your family. I’ve said this so many times too! My friends don’t seem to understand, because they see me suffering with it, but I truly am glad it is me instead of someone else. I don’t think I could be as strong as they are if I had to watch them live with PF. Sometimes, I actually think being the caregiver of someone with PF would be harder than being the patient. I love my friends and family so fiercely that I would take this all on again to prevent them from ever getting it.

Since we touched a little bit on how we felt when we were diagnosed in this post, I wonder if you could help me with a new forum topic I have started? In the Diagnosis Information and General Questions forum, I just started a topic about advice you’d share for those newly diagnosed. The link is here: https://pulmonaryfibrosisnews.com/forums/forums/topic/advice-for-newly-diagnosed-patients/ and I was wondering if you’d share your advice? I’m so glad you’re part of the forums Sandra!

Have a wonderful day,
Charlene

[gil]

Charlene, the link isn’t working, I get error 404.

 

[Charlene Marshall]

Ah, strange, sorry Gil. Thanks for letting us know!

The forum and the topic of ‘Advice for Newly Diagnosed Patients’ is still active, but maybe I didn’t put the link to it in properly. Try this: https://pulmonaryfibrosisnews.com/forums/forums/topic/advice-for-newly-diagnosed-patients/

Did this work? If not, just go to the pain forums page and click on the forum titled “Diagnosis Information and General Questions”, then the topic of ‘Advice for Newly Diagnosed Patients” should be there. Would love to hear your advice 🙂

Advice for Newly Diagnosed Patients

[Aishia Moaishia]

Hi everyone,

I am so thankful I have stumbled across this forum. am newly diagnosed with IPF and am still reeling and spinning from it. I am in a very positive and hopeful place for the most part but do have moments of fear and insecurity which I imagine is natural.  here is my story so far….

January 2015 I had pneumonia. My primary care physician ordered a chest x-ray and prescribed me antibiotics. Once I felt better she ordered a follow up x-ray which I procrastinated and finally went in for in March. That x-ray still “looked funny” to her so she sent me to our local pulmonologist group. In April 2015 I was seen by Dr. M my current Pulmonary and had PFT and an x-ray. He told me I had Interstitial Lung Disease, asked me a bunch of questions, and sent me for blood work.  I cam home and researched ILD but didn’t really think much of it. It looked like it wasn’t a good thing but I felt fine and had no symptoms so I didn’t think much of it. August 2015 Dr. M dud a high Resolution CT and a few days later I had a bronchoscopy with lung biopsy.  At this point the HRCT showed some sprinkling  of scarring in my lower lobes Mostly in my rt lung.

I have proceeded to follow up with Dr. M every 4 months and have had HRCT scans in both December of 2016 and 2017. My O2 saturations remain in the 90’s at rest and with activity (fast paced walking up and down the hall). My most recent PFT in November and my HRCT in December have Dr. M slightly stumped. The HRCT shows mild progression (define mild?) some honeycombing and now some scarring in the upper lung. My PFT result state my lung volume is 50% of capacity and my diffuse is 33% of capacity yet my O2 sats are good.

After this HRCT I did more research and in occurred to me that this is NOT good. We will skip over the part of my story where I completely lose it… Dr. M has referred my to Seattle to the UWMC Interstitial Lung Disease Clinic and my appointment is in 2 1/2 weeks.  Dr. M nailed down my diagnosis as IPF. I have no auto immune diseases, no environmental exposures, no familial history (my grandfather on my moms side died of PF but it was environmental, as far as we know). I hate to even admit this but I was a smoker for 25 years. 🙁 I was on my journey of becoming a non smoker beginning October of 2012 and can say I have been completely smoke free for 16 months. I will NEVER smoke again and it is the only regret I have in my life. Although most of what I have researched leads me to believe that ILD are not generally smoking related, or cause by smoking. I am not on oxygen, just started Esbriet last week and feel pretty good. I have been coughing a lot lately and get a little short of breath when walking a distance but I had sinus surgery in December and am still healing (lost of post nasal drip) from that.

I do not want to be my disease..

I am young at 40 years old. I work full time for a hospital as an audit coordinator in the business office.  I work with billing, medical records, health insurance, etc. I am very fortunate that I get to work from home. I also go to college full time and am finishing my Bachelor of Science in Public Health, Healthcare management and policy with aspirations to obtain my RN and Masters degree in Midwifery. I am passionate and fascinated with pregnancy, childbirth, and women’s healthcare. I have been married to my best friend and the love of my life for nearly 21 years. We have 2 awesome kids who are 21 and 20 years old. I look forward to being the best grandmother ever, although my kids aren’t even close to becoming parents. We have 2 dogs a 14 year old Golden Retriever/Blue Heeler mix and a 8 year old Boxer and 2 cats. I enjoy reading, yoga, traveling, art, interior design, cooking. My family are my greatest joy! I have so many dreams and aspirations. Sometimes I feel like this is a really bad dream.

I hope to have more answers after I am seen in Seattle….

 

 

[Charlene Marshall]

Hi Aishia,

Thank you so much for sharing your story on this discussion topic! Please disregard all my questions to you in a previous reply, as I hadn’t yet seen this thorough update on your story yet. I know many people will be able to relate to what you’ve shared, so thank you again …. we’re glad to have you as part of the forums!

When you referenced that your Doctor said your x-ray “looked funny”, did he use any describing words to help you understand what he was seeing? Examples I’ve heard of Doctor’s using include things like “honeycombing” and “tree-in-bud” appearance. Does anyone else have words they could share about how their Doctor described what they saw on an x-ray, or other diagnostic imaging? I also initially thought I had pneumonia or bronchitis when I first was symptomatic, which was March 2015 and was treated and things did seem to subside for a short time. This was interesting to me because if it wasn’t those things at all, then I’m not sure why they seemed to respond to the antibiotics I was given? Perhaps it was those things (either pneumonia or bronchitis) which then caused the IPF? Not sure, but is something I’ve often thought about.

If I can ask, what was the biopsy like for you?

It is so interesting to see your function numbers, and yet know what your 02 sats are? Do you notice an increase in symptoms when you are at rest vs. doing physical activity, even if it is fast-paced walking? Even climbing stairs for me proves to be difficult these days. I can do it, but I find I am short of breath and unfortunately often dizzy as well. I can keep my oxygen on, but I have a hard time carrying it up and down the stairs.

With regards to your “completing losing it” please be gentle with yourself, I personally think this is very real reaction and so many of us can truly understand that response. We are here for you. I had that response (or one similar to what I suspect you’d share) both internally and unfortunately, towards others who loved me the most as well. I’ve written several PF columns on my mood swings and emotions, especially shortly after being diagnosed. It was so hard to deal with, and I didn’t mean to react that way, knowing I was hurting or upsetting others, but I really couldn’t help it. Don’t beat yourself up too hard over reacting however you did. I always tell people “there is no rule book given to us about how to deal with the diagnosis of a life-threatening illness, such as IPF”.

I also agree with you that smoking cannot be the sole cause of ILDs or PF, there are so many other factors to consider such as environmental, familial, etc. And I remember talking to my Rheumatologist about all the “what ifs” that could have caused my disease, and she actually gave me a medication to help me with the physiological response my body was having to the stress of trying to understand why I contracted this disease. With that said, there’s no benefit in wondering if your smoking in the past contributed to the development of PF. Your attitude and perspectives going forward sound positive and are very admirable!

Lastly, I certainly hear and can relate to your desire not to be your disease. I felt like when I was first diagnosed at 28 (am 30 now), everything became about my disease and why I developed it. I also wrote a column about not wanting to lose my identity to this disease, as I am so much more than IPF. Are you a writer? This has really helped me cope with PF, a long with having the ability to connect with amazing other patients out there, such as yourself. Your aspiration and passions sound amazing, way to go on being in school full-time. RNs are my heroes, for all the times I’ve been in hospital, I really don’t know what I’d do without them. Keep us posted on your progress towards that! I also love to travel, this is my biggest passion in life right now – where have you traveled? If you could choose anywhere in the world, where would you go?

I look forward to continuing to get to know you and please don’t ever hesitate to connect.

Charlene.

[Aishia Moaishia]

So I had this bog long post and it didn’t post and disappeared, so here I go again. 🙂

When I had pneumonia in early 2015 and my doctor said my x-ray looked funny she didn’t give and description or explanation of what or how it looked funny. She just referred me onto Dr. M my local Pulmonary doctor. I am sure the reason she wasn’t more specific was because she did not want to scare me.  Isn’t it interesting Charlene that you and I both were diagnosed after a bout of pneumonia and in the spring of 2015.  I had my first pneumonia in 1999 when I was 21. It was Staph Pneumonia and i went into respiratory failure and was in the ICU for 7 days. After that I was always susceptible to pneumonia but never had any lasting effects from it. I am curious if perhaps that staph pneumonia was somehow a pre -courser or possibly contributed to my current IPF.  I have the medical records from that admission and am taking them to Seattle with me.

In August 2015 I had a bronchoscopy with a biopsy. It wasn’t and actual lung biopsy where they take a sample of lungs through and external approach. This was via the bronchoscopy and they took bronchial and lung samples via the bronchoscopy. I do not want to have a true lung biopsy, especially if it won’t provide any answers or if the answers won’t change the outcome. After the bronchoscopy I was a little dopey until the next day and had a little bit of a sore throat but otherwise I was great.

Yes, my function numbers and sats have my dr. M completely stumped. Im just happy my sats are good and I do not need O2. I hate the stairs and often force myself to take them at the college. It’s 24 steps (yes I have counted) I am always sucking wind and coughing when I get to the top but I can continue to walk and it doesn’t take me too long to get my wind back.

In regards to my completely losing it, mostly I cried. I told my husband and kids. A few friends and my aunt. My husband has shared with other friends. Mostly we are just scared and Im not ready to go. I have so much life to live so while I spent some time “losing it” I am on the upswing and I know attitude is important. I focus on what I do have control of.

I refuse to be reduced to a disease. I am so much more that IPF. IPf just happened to me and I know there is some greater reason why but Im not done living. I haven’t done a whole lot of traveling but we have gone to Las Vegas twice, I have gone on 3 cruises with my aunt. @ were to the Bahamas and key west FL from Florida and one to Mexico from New Orleans. These cruises are celebrity cruises with the band NKOTB.  My absolute dream vacation would be a trip to Scotland and Ireland with my husband. I would also love to go to Italy (Amalfi Coast) and to the South Pacific and to stay in one of those huts over the water.

Where have you traveled? What is your story? Do you have IPF? PF? Do you have an autoimmune RA??  How long have you been on O2? Do you take anti fibrotic meds?   Please dont feel obligated to answer anything you aren’t comfortable with…

Aishia

 

[Charlene Marshall]

Hi Aishia,

Thank you again so much for contributing your thoughts and story to this topic discussion. It is so powerful and meaningful to be able to connect with others, especially those who share similarities as we seem to in our story.

I am not entirely sure whether I had pneumonia or bronchitis in the spring of 2015, although I suspect I had something of that nature as whatever it was responded to medications initially. Then after about 4-6 weeks my symptoms would re-appear and I’d go back to the Doctor, only to be prescribed another medication to try and treat it. The cycle continued for about 9 months, and I was starting to think I was imagining the breathlessness. I used to play hockey, and be a runner, so I was always active. It was when I could no longer do these things safely, and when my friends asked me why I was so out of breath, that I knew something was wrong. I also worked with kids at the time, so I thought I just kept getting repeated viral infections that landed in my lungs. I am so sorry to hear of your experience if staph pneumonia, that must have been really scary for you and your family. Was that just something you came in contact with? How many times did you end up with pneumonia after that? I have heard that pneumonia can be a contributing factor to the development of PF, particularly if it is repeated, although I should do more research into how credible this is just to be sure.

Thanks for clarifying the type of biopsy you had as well, I will keep this in mind for future as I have been told that likely I will need a biopsy as well to determine the progression of my disease. I’d like it done via the bronchoscopy (this procedure I’ve had before) instead of the external biopsy like you say. Glad it went okay for you! I’ve definitely heard people say that they felt the external biopsy made their overall lung function worse and their ability to breathe was made more difficult. Have you ever heard this?

Have to go on supplemental oxygen was really hard for me at first, I actually tried to avoid it as long as I could so I totally understand your gratefulness there. It is very admirable that you push through and continue to do the stairs, in the end, this is really good exercise and will keep your body strong if you can manage it. Way to go! I used to try to do this too, mostly because I am stubborn and didn’t want to “give in” to using the elevator. Then one day at work I just couldn’t catch my breath and unfortunately that warranted a trip to the ER which determined my sats were just too low. In recent years, it has almost become a bit of a comfort/safety thing for me now. I like that I have it here at home (or at my office, I leave a tank secured there) in the event that I need it, but I do try not to use it whenever possible. Your attitude really is so admirable though, thank you for giving me something more to strive towards… I am glad you’re on the upswing after “losing it”, but that reaction is also so normal too. I certainly have my moments 😉

Absolutely, I’d be happy to share a bit more about my story and answer any questions! Side note: I think you and I would get a long great as travel companions! I am actually planning a trip to the UK this September, and plan to visit England, France and I’m trying to decide whether to go up to Scotland or over to Italy for the third country. A friend of mine lives hear the northeastern England coast so she could drive me into Scotland so I am thinking that is probably the route I’ll go. Your cruises sound absolutely amazing! I’ve never done a cruise before, but it is on my bucket list. I am actually going to California next week for a patient-physician panel, and then Vancouver in April…. all this before heading to the UK! In terms of where I’ve been: Qatar, Dubai, Australia, most US states, especially up and down the east and western coasts. I’m pretty lucky to have seen a fair bit of the world compared to others my age, although I have so much more to see. My ultimate bucket list vacation would be the Maldives or Fiji! I am such an ocean lover so anywhere that is ocean/sea-filled, count me in!

I have IPF and was diagnosed in April 2016. To my knowledge, I don’t have any history of lung disease in my family and am trying to learn more about any familial links for the future generations of my family. I don’t believe I have RA, however, I just recently started seeing a Rheumatologist (my Pulmonologist referred me) and he did a major immune disease bloodwork panel, and ordered a few other tests to  investigate whether or not I have an auto-immune disease like RA or lupus. Has this been investigated for you? Regarding the oxygen, I unfortunately was prescribed it very quickly after my diagnosis, I believe by about August or September in 2016. I don’t use it all the time, but do sleep with it on and take a portable tank with me everywhere I go because I don’t know how my lungs will react to certain environmental triggers, like smoke, dampness or weather. I typically am on a low LPM, and have just kind of gotten used to carrying it around. A little guy I was working with a few days ago, pointed to my face (I didn’t have my oxygen on for the first time in a long time) and he said: “where is your hose?” I LOVED that, it really made me laugh and is an example of how normal it can become. I do take Ofev, this is relatively new for me and seems to be helping stabilize my disease progression, which is excellent news. I go back to both specialists (Pulmonology and Rheumatology) on Feb 28th… fingers crossed for a good appointment!

I have written you a novel response, Lol so sorry about that but I am really enjoying getting to know you 🙂

Charlene

[Aishia Moaishia]

Charlene,

You are so correct when you say it is powerful and meaningful to connect with others with similarities in our stories. I used to run as well, well jog, I was never very fast but I started running for fitness in 2012 and stopped in 2014 just because and was diagnosed a year later. very strange.. I am really forcing myself to stay active as much as possible. I thoroughly enjoy yoga. Now I just need to get myself into a daily walking fitness routine.

I do not want an external lung biopsy either because I too, have heard people say it made things worse. I am being stubborn and do not want to go on supplemental oxygen. I am doing anything and everything I can think of. Have you    tried any types of diet changes? If yes, have they helped?

I was taking NAC -N-acetyl Cysteine<span style=”font-family: ‘Myriad Pro’, Helvetica, sans-serif;”> but stopped when I read the results of one study that said NAC and Esbriet shouldn’t be taken together.  I am going to discuss with my Dr up in Seattle when I have my new patient consult with him. </span>

I have been tested multiple times for all auto immune disease and continue to have negative test results. I also do not have any other symptoms of any auto immune diseases except Reynauds Syndrome (basically my fingers and toes turn purple and white when I get cold). I think it is very unlikely that my IPF is auto immune related.  I have had 2 positive ANA blood tests but the follow up Lupus test is negative, and again I have no other symptoms so…..

 

Do you cough a lot? Every morning I wake up I cough for a good 5 minutes. My cough is not dry but is “productive” (trying not to be gross).  I did have sinus surgery in December and wonder if that is still healing (dr said about 3 months) and possibly I still have some nasal drainage from sleeping that is causing the cough? I really hate couching!

I am so excited for you and your upcoming trip! Please take and share lot’s of pictures! I believe we would be great travel companions.. I love the sea and the sun!

Your appointment is just a couple days before mine. I hope everything goes well for you!

 

[Charlene Marshall]

Hi Aishia,

Thanks so much for your message. How is your weekend going?

We sound strikingly similar, and I find comfort in that even from just sharing things with you over the forums. It was probably 2012-2013 that I began running for fitness as well. I also was mostly just jogging, but either way being able to complete an evening or morning run felt so good. Even after I was diagnosed (albeit, only for about 4 months after) I kept running, with the knowledge that I had a lung disease but that slowly caused me to stop. I like to walk on my treadmill now, though I do find it frustrating the balance of my legs wanting to walk faster and my lungs not being able to tolerate faster. As a result, I usually take my iPad with me and watch a TV show and walk through the episode. That helps distract me from the mentality of wanting to walk faster but knowing that I can’t. I haven’t tried yoga, but I know that I should! My cousin is an amazing instructor and I really should give it a try. Do you find it helpful? Where you live, can you walk outside all year-round? I enjoy walking outside in summer evenings so much (when it isn’t too hot and cools down a bit after supper time) and hope I can do that still this year.

Accepting supplemental oxygen was really hard for me too, so I can certainly relate to you there! I haven’t really tried many diet tactics to see if it helps with my breathing. The only thing I have found helps with my energy, and is especially helpful on the days where my medication just makes me not want to eat anything, is juicing. I got a juicer for Christmas and will make different blends of both fruit and vegetable juices. Again, I can’t say it has made a difference in my breathing but I do crave a glass of fresh juice (I’ve never liked store bought juice, I just find it too artificially sweet) daily and at least it is helping me maintain my required veggie and fruit intake. Have you tried anything that has been particularly helpful?

I suspect my immunology work up will also be negative, although I am struggling a bit more these days with widespread pain. I also have Raynauds!!! It scared me so much the first few times I noticed it because my fingers were so white, and they burned / tingled really bad. I also think it is unlikely that my IPF is related to an autoimmune disease. I just wish I had an answer! Although, Alex (on this forum) sent me an amazing link that is so interesting about a potential cause of why telomeres might shorten prematurely. This normally happens with age, and can be linked to IPF development but when we’re so young, I wanted more concrete information. I’m going to talk to my Doctor about this link for sure! His post is in the Research and Development forum about it. If you have a read, I’d be curious to hear your thoughts….

I’m really sorry to hear about your cough, and no worries, it isn’t gross. I do cough a lot, but mine isn’t productive at all (unless I am sick), it is a very dry, annoying cough. I really worry that I annoy people with it because it isn’t always a full cough as it is clearing my throat and it feels like I have to do that every 2 minutes. Sometimes I feel like my heart is beating too fast (we’re investigating this too) and when it seems to be ‘fluttering’ (as I am describing it) or beating too fast, that causes me to cough and random and then usually I take a good 10-15 minutes to recover from that episode of coughing. Unfortunately, that seems to be happening more and more. What was the cause of your sinus surgery? I’ve heard many people getting sinus surgery from chronic sinus infections, or prolonged use of oxygen therapy….

I definitely will take lots of pictures and share them! I can’t wait to dip my toes in the ocean and feel the sun on my face. I don’t want to wish summer away at all, but I am pretty excited for September. I also hope your appointment goes well, maybe we could connect after the appointments and share how they go?

I hope your weekend is going well, and thanks again for writing!

Charlene

[Aishia Moaishia]

Hey Charlene!
My weekend was quite lovely albeit a little chilly.  We are getting some snow in our area where we don’t typically get snow. Everyone kind of freaks out.  It doesn’t bother me too much, I am fortunate that I telecommute (work from home) so it doesn’t affect my work and if I have to miss a college class no biggie. How was your weekend? Do you do anything exciting?  I mostly stayed at home. I did some house work, some homework, watched a movie with the hubs and just relaxed.  I am not sure if it is the Esbriet but I am just starting week 3 and I am tired. Not tired like I want to sleep but just low energy. I also have zero appetite…. I force myself to eat 3 times per day because I must with my meds and I give myself a lot of grace and patience. I did yoga yesterday and that seemed to help with my energy level. Maybe that’s the key for me.

I really need/want to walk more but it’s chilly outside. Although walking outside year round is an option Im not a huge fan of the cold. It does rain quite a bit here. I may have to invest in a treadmill at least I could walk inside.   I am mostly trying to avoid dairy and chicken eggs (I had immune allergy testing and am mildly allergic to chicken egg whites)  Dairy is known to be inflammatory to our respiratory system.  I am not 100% but these are things I am trying and am hopeful that they may help my breathing. I will also talk to my dr about it.
A juicer you say, now that I am experiencing the appetite loss I really may look into juicing. This is actually a fantastic idea! Thank you for that tad bit!! Another thing we have in common Raynaud’s!! I am really so happy to have found you here, we seem to have so many similarities except you are a wee bit younger than I   😉   I hate my coughing! I literally hack for 5 – 10 minutes every morning when I first wake up, It sounds awful.   Sometimes when I get winded I start to cough and people are always asking if I am okay. I know they mean well but it is so embarrassing.  One day a came into class and I was breathing heavily cause I had just come up the stairs and coughing a bit. She said, “You don’t sound good”. I assured her I was fine but she kept on about it a little (I suspect she thought I was ill, being flu season and all). I had to assure her I wasn’t contagious and explained I have a respiratory disease that causes me to cough and get short of breath but it is not contagious. Of course she felt bad after that but I didn’t know what else to say to get her to drop it. Have you ever had something like this happen and how do you handle it?

So interesting about your heart flutters. I am interested to hear what that’s all about. My sinus surgery was kind of a fluke thing.  I started noticing a bread dough/yeast smell periodically, after several months I went to the ENT, they did a CT scan and my right frontal sinus was completely closed off with inflamed and overgrown tissue. They went in there cleaned it out and opened it up. I also had fungal balls in there of Aspergillus (mold) and puss pockets in my other sinuses. The interesting thing is I had no history of chronic sinus infections or anything. ENT dr said it take about 3 months to completely heal. So Mid-March I am 3 months out. I am hopeful this drainage and my cough will mellow out.

Yes our appointments are just a few days apart. We must definitely connect to see how each other are doing. Have a happy day Charlene!!

[Charlene Marshall]

Hi Aishia,

Thanks so much for your reply, and I am glad to hear you had a nice weekend despite it being chilly! The weather here in Ontario is so strange right now; last weekend it was snowy and -20 and for about three days straight now it has been raining and +10-13, which is unusually warm for February in Canada. It’s scary to think of what is happening to the earth that is causing this wild weather. That being said, it made for a mostly quiet weekend for me too which was nice. In terms of what I did, I actually participated in an event on Saturday that was very therapeutic for me – it was an afternoon of scrapbooking and crafting, which is something I’ve re-discovered my passion for since my diagnosis. I like the quiet productivity of it and this event was actually a fundraiser for the local heart center at the hospital, which was really meaningful for me to attend given the closeness of heart and lung issues. Then Sunday and Monday (Monday was a holiday here) I spent some time tidying up around home and playing with my dog, who is just the love of my life! I can certainly relate to the fatigue you mention. Don’t you find it so hard to explain to others? Just a few weeks ago I was sharing with a friend how tired I am (not sure if it is disease-related, or medications either…) and her suggestion was ‘well, can you take a nap’ and I just wanted to tell her that option won’t alleviate the fatigue I am feeling. She meant well, so instead of trying to explain the fatigue we feel (and that sleeping doesn’t necessarily help) I just agreed to see if a nap would help. I’m sorry you’re experiencing this too, it is so tough and I am very glad to hear you’re giving yourself some grace around this.

I am not a fan of the cold either – so funny that we also have this in common! Why I live in Canada, particularly a place where there is a lot of snow and no ocean is beyond me. I dislike the cold and love the ocean, so I am definitely living in the wrong place. I am glad I have a treadmill in my basement to use whenever possible, this has helped with my ability to do some exercising and I always let someone know I am going on it just in case I fall or something happens. I had no idea about dairy causing an inflammatory response in our respiratory system! I am so glad to know this, as I don’t drink a lot of milk, but there is quite a bit of dairy in the protein shakes I make in the morning for breakfast. There are some dairy-free shake options so this might be something I should look into. I’m curious to hear how the chat with your Doctor goes about specific foods and how they might impact our respiratory system. Would you mind reporting back?

Yes, definitely check out a juicer – it is a bit of an expensive investment but it has been my savour when I don’t have an appetite, plus it is so much better for us than store-bought juices. I just find it so refreshing and so far my favourite mix is: honeydew melon, cucumber and orange. It’s so refreshing! I do a lot of fruit juicing, and need to work on some recipes using veggies, although I do eat a lot of raw vegetables in general so I guess it all balances out. Juicing is a bit of a time commitment, but it is worth it, in my opinion!

Yes, I am so glad we’ve connected too, lots of things to talk about and share! I can relate to the coughing, and I think because of our age, it feels just that much more embarrassing. I can relate to you about how it feels when people ask or assume things since we’re ‘young’, even though they don’t know, it still doesn’t feel good. I actually want to write a column about this because it happens to me all the time, especially when I am waiting to take an elevator vs. taking one flight of stairs. I’ll try to find a column I wrote previously about the crippling fear I had before a job interview, when I was afraid the HR Manager would walk up a flight of stairs while trying to make small talk to me and I was so scared I’d run out of breath. I kept thinking “then I will be forced to disclose my illness, and there will be no way I’ll get the job”. It was an awful feeling, and it was all I could think about before the job interview, instead of preparing for it mentally like I should have been. I’ll send you the link, if you’d like to read it? I think it was one of my very first columns. So, the short answer is yes, this definitely happens to me and it is upsetting. When I have my oxygen on, obviously people have more of an understanding but when I do, I fear the judgements of people who ask about my cough or give me looks that indicate their wondering why I can’t just walk up a flight of stairs as a seemingly ‘healthy’ young adult. I’d like to chat more with you about this, as I know you will truly undertsand.

With regards to my heart flutters, so far we haven’t really been able to determine why they are taking place. My echo seems ok (although some issues are showing on it snow, but nothing significant) and my EKG/EEG’s are usually good. It is a murmur and flutter that just seems to randomly appear, so I am keeping a pulse on it with my local cardiologist. I believe I have an appointment about this in April, so I’ll try to keep you posted for sure.
Glad to hear that your ENT was able to determine and correct the cause of your sinus issues, that must have helped with your breathing a bit? My friend (doesn’t have PF) but she does have chronic sinusitis and I often see how much pain she is in. I hope the cough mellows out for you as well!

Yes, we will keep in touch for sure. When is your appointment again? Mine is on the 28th of February. Keeping you in my thoughts! Have a great day 🙂

Charlene

[Lesley Scheerle]

Hi Aishia: I was surprised by your description of your sinus troubles – only because I’ve been smelling odours that aren’t there!  I often smell smoke that doesn’t exist and sometimes it smells like ozone. Now I wonder if it may be sinus related. Hmmmmm.  Last fall I mentioned it to my G.P. and he replied ” I’ve never heard of that before.” End of inquiry.

It’s something I’ll keep in mind to ask about seeing a ENT at my next Dr’s appointment. Thanks for sharing  that info.    Lesley

[Charlene Marshall]

Hi Lesley and Aishia,

Yes, I agree, thank you for sharing this experience Aishia! I actually just was speaking with another patient who is close to my age who uses supplemental oxygen as well (she has CF, not PF but still) and she mentioned troubles with her sinus’ as well. She had surgery not that long ago to repair her sinus’ and her ENT chalked it up to prolonged use of supplemental oxygen causing inflammation in her sinuses that she couldn’t get relief from. I had no idea these types of issues occurred, so I am really glad you’ve illuminated them for us, as Lesley mentioned. I am going to also request an ENT referral to just have mine checked and potentially monitored on the regular as I continue to use oxygen therapy.

Thanks again,
Charlene

[Aishia Moaishia]

Hey Charlene and Lesley,

I am so happy I was able to shed some light on the sinus issues. We have no idea what may have caused mine although given I live in an area where seasonal allergies are common I imagine it was cause by that. Charlene, sorry it has taken me a bit to respond. It has been a crazy busy week.  My appointment is next Friday March 2.  We will have to touch base next weekend.  You are in Ontario I am in Oregon, opposite sides 🙂  We have been having snow this week but is not common for us. Typically we have tons of rain during the fall, winter, spring and mild and warm summers. It is quite lovely here in Oregon but colder than I prefer.  Do you have any recommendations on juicer brands? I am beginning to research them.

I am doing really well and hope the same for you! Chat soon and have a beautiful weekend!

Aishia

[Charlene Marshall]

Hi Aishia,

Thanks so much for your post, I was wondering how you were doing! I have found your story about sinus’ troubles so interesting and am really keeping an eye on this for me, it is like I have a heightened awareness about it now. Just this weekend I thought of you as I kept smelling this really strong ‘chemical-like’ smell and no one else seemed to notice it. We hadn’t had anything unusual in our home but it was a really evident smell for me, and it was almost burning my nose. I know this isn’t the smell you described you had, but I certainly thought of you and kept a pulse on it just in case it turned into anything. It wasn’t as much the smell as it was how it made the inside of my nose (my sinuses) feel. How is your recovery going? Do you take anything to help with your seasonal allergies? Gil has been extremely helpful in sharing how he deals with allergies while living with IPF.

I will be thinking of you on Friday for your appointment. Is it with the Pulmonologist? I have an appointment this coming Wednesday, February 28th at 4pm EST. I am hopeful that it goes well, it isn’t with any lung doctors but it is with my Rhuematologist as a follow up to the immunology panel we ran before the holidays. I am hopeful that nothing is revealed, but in a way I kind of hope there is because have you ever heard that if you have IPF and an underlying autoimmune disease, you actually have a better prognosis than if you just have IPF (and nothing else)? I read that somewhere once, I’ll try to find it for you. The idea is that if you have IPF caused by rheumatoid arthritis (RA) for example, the IPF is better managed since science and doctors know how to treat RA. What they don’t really know how to treat is just IPF that develops with no underlying cause, which currently is the case for me. I’ll see if I can find the article for you, and I’ll keep you posted on my appointment. I did read my bloodwork results online (a new feature Ontario blood labs are offering) and some markers are elevated.

Ah, sorry to hear that it is so cold. Ontario has sure had it’s fair share of cold… brrrr! I hate the cold and find it so much harder to manage since my diagnosis. Do you find this as well? We are having beautiful weather today (10-12 degrees and sunny) which is very unusual for February in Ontario!

In terms of juicer brands, I’m so excited that you’ve been researching them! Just this morning I made fresh orange juice for a few days (you can’t make tons at a time just cause fruit doesn’t keep. It is fine to drink for a number of days, but you actually take in the most nutrients from the juice if you drink it within 24 hours) and it was so refreshing to have this morning. The one I have is a Cuisinart full juice extractor and I love it! This is the machine I use…. http://www.cookstore.ca/cuisinart-juice-extractor-cje-1000c.html?mkwid=sd5gRL4Me&pcrid=91570706593&gclid=CjwKCAiA_c7UBRAjEiwApCZi8QQ2MqbLVwPK3N_C5IllUVPAo33az-S9s2en1Zl8YPg5jXcyuLuCkxoCrd8QAvD_BwE

The only feedback I have is that it is a bit of a pain to clean, but that is true for all juicers I think! It takes about 10-15 minutes of washing but that is worth it for me 🙂

I hope you had a great weekend as well. Let’s touch base after both our appointments!

Cheers,
Charlene

[Aishia Moaishia]

Hey there Charlene,

I wouldn’t give too much thought about sinuses unless you really start having trouble. I also have a very sensitive sense of smell, so sensitive that it can be annoying. That being said it is good to be aware but no need to be hyper aware. I discovered my sinus issue completely off a fluke.  My ENT told me it takes about 3 months to heal. Although I feel much better I do still have some post nasal drip and I believe that is what causes my coughing fits when I first wake and get out of bed in the morning. Although these coughing fits are getting shorter and not as harsh I still cough for a few to 5 minutes every morning when I first get out of bed. My cough is productive though so I am hopeful as I continue to heal this will taper off. My 3 months post surgery is mid March so a few more weeks to go.   I do take an over the counter allergy medicine during the spring and summer because I am allergic to several grasses and the area I live in has many fields that grow and produce grass seed. Go figure!

I had not heard that IPF with underlying autoimmune is easier or better?? I would love to read that article so if you do find it please send it my way. My ANA has come back positive twice but then the follow up test for Lupus is negative. So far no auto immunes for me.

 

My appointment on Friday is actually in Seattle, WA at the Interstitial Lung Disease Clinic at the University of Washington Medical Center. I will be seeing one of the Pulmonologist there. I have a Pulm here that I see but I wanted a second opinion and my Pulm here agreed that the more heads in the game the better. So he has referred my up to Seattle because this clinic only deals with ILD. So I am anxious but also excited.

Thank you for the juicer recommendation. I am definitely considering getting one. Especially with my wonky appetite.

 

We must touch base after out appointments. Have a lovely week and we will chat soon!

Aishia

 

[Charlene Marshall]

Hi Aishia,

Good tips on the sinus issue, I’ll definitely keep that in mind. Did you always have sensitivity to smell? This is something I think has occurred for me only since starting to use oxygen. I find I am a lot more sensitive to smell, and my sinus are a bit more tender, although not necessarily sore or problematic. Glad to hear your cough is tapering off with your healing, and I sure hope for your sake that it subsides with full healing. I find frequent coughing, like either coughing fits or just persistent coughing really causes pain throughout my chest and back. I suspect that is my muscles being sore from coughing so often, but it is really bothersome lately.

I will definitely try to find the article. As I was out with my dog tonight I was trying to remember the source of the article, or whether or not it was a conversation I had, but I am pretty confident it was an article. I’ll do some digging for it and ensure I share it with you if I find it. It was really interesting because obviously, no one would want an autoimmune disease in addition to IPF, but it does sound like if the IPF is secondary to an autoimmune disease that the Doctors know how to treat, then it is easier to keep the IPF “at bay”. Which in my mind does make sense, especially since they don’t really know how to best treat IPF since every case is so unique and different from the next. Was it blood work that they ran for lupus? The markers so far that have come back abnormal for me are: Leukocyte Esterase (high for me) and C Reactive Protein (also high). I’ll be asking about these abnormalities on Wednesday for sure. I’ll have to keep you posted.

I’m really glad your pulmonologist has the foresight to get more heads in the pot, that is really encouraging as often doctors don’t do this. Glad to hear they are referring you to an ILD clinic. I wish you all the best at your appointment Aishia!

Yes, do keep me posted on the juicer choice. I really find it helps, especially because you don’t have to do only fruits, you can do veggies as well to get your balance / daily intake of fruits and veggies!

Goodluck and chat soon…. I hope you have a great week as well!
Charlene

[Joy Hoffmann]

April  2021

I know all patients progress with this disease and we are all progressing at different rates.

I guess in a way I am fortunate because I am 83 and was diagnosed  one year ago

I have been on OFEV all that time

I have only shortness of breath on stairs and doing housework

I walk 3 miles each day

I am sad for those who are so young with PF

I really would like to know how long patients have had it

it would be helpful to date comments

Are there patients out there who have just shortness of breath?

I had acid reflux quite a bit but am doing a couple of exercises that have alleviated it

so feeling much better

thank you all for your honesty and information

 

[Charlene Marshall]

Hi Joy,

Thanks so much for writing and sharing your experience. How long we’ve been diagnosed and cross-examining the symptoms is always of interest to me as well. Kudos to you for being so committed to your exercise regimen, I think this will serve you well. Take care!
Char.

[John Garner]

Hello Everyone,

I have only been diagnosed with IPF for about a year. So far my symptoms have been mild. I am tired everyday and get winded easily. I am on Ofev. I wonder if others with this disease think like I do? I sometimes think I am making too big of a deal about it. I don’t tell everyone about it, mainly just my family and close friends. I wonder if I should just suck it up (sorry, bad choice of words) and maybe if I get in better shape it will go away. When reading this forum, I am always interested in people’s timeline concerning IPF. Like how long do folks go until they have to use supplemental oxygen,  or have to give up things they used to do. I mainly wonder how long I have, before  I start to experience these things. I am 73 and have found out that if I have a question about anything there are usually others with the same question.

I am not worried about my disease because I have a strong faith in God and know that my life is in His hands, I just wonder what my future here on earth will be.

John

[Charlene Marshall]

@johnthebusman

Hi John,

Thanks for taking the time to write us and share a little bit about your story. I’m glad so far your symptoms have been mild, though I know how hard it is to deal with fatigue and shortness of breath daily. I really struggled with telling people about my diagnosis and when I did, I tried to detach all my emotions from it so people felt like I was relaying someone else’s story. It was a really tough time for me, and I’m not sure if there is a right answer to this but a really good question.

The timeline in terms of disease progression and thus, the need for supplemental oxygen, tends to vary too. Some people have had the disease for multiple years and don’t need 02 and others require oxygen quickly. It is a good question though – take a read through others’ experiences with disease progression or oxygen here on the forums when you get a chance 🙂

Take good care,
Char.

[Carlo De Pellegrin]

Hi John, I wish I knew the answer to that. I was diagnosed about 8 months ago and have issues with shortness of breathe and nausea and fatigue. I did have carcinoid cancer in my upper right lung in 2012 so I have had CT scans at least annually since the. My recent diagnosis implied that the disease was there 5 or 6 years ago and has progressed to where the FEV1 is 65 to 70% of predicted. I can’t find the last test result right now. Have another breathing test this coming Friday and that will be an indicator of progression with the Esbriet I’ve been on since last September.

You’re right! it is in his hands, but I to would like to know