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    • #16744
      Eleanore DAngelo
      Participant

      This is all new to me .  My grandson had a cold and couldn’t go to school.  Because we babysit, he was brought to my house and he stayed in a room away from my husband and I.  After his mom got him she brought him to the doctor and he had the flu.  So now, we both got the flu and we are both really sick.  We went to the doctor.  Then I told my kids no more sick kids around me.  Lesson learned.

    • #16794
      Eleanore DAngelo
      Participant

      Hi Charlene.  So nice to hear from you.  When I was first diagnosed I was so scared and depressed.  I never even heard of this disease.  Then to read that you are working made me feel so much better.  I’m 71 and the only thing I’ve ever had is dry eye.  So this made me so upset.  I also have asthma.  I don’t have a lot of scar tissue, but it’s just enough to make me aware that there is a pulmonary problem.  Thanks so much for answering me.        Take care, Eleanore

    • #16812

      Hi @gmabankeraol-com,

      Nice to hear from you too, and thanks so much for getting back to me. I am so glad the technical glitches the forum is experiencing isn’t keeping people away, as I truly value everyone’s contributions to the site.

      I remember the time of my diagnosis well, it can be so scary, confusing and so many emotions run through us, don’t they? I remember deciding who and how to tell people I loved about my illness and then when I did choose to tell people, it felt like I was just reciting someone’s sad story. I didn’t know how to execute my own emotions into the story-telling I was doing about my illness to others, so it was tough to navigate those times because I didn’t know what to do with the emotions. In hindsight, I wish i was a little more gentle with myself during those tough weeks, and I hope you’ve found a way to be kind to yourself as well. The depression and sadness can be overwhelming, I remember that well. When was your diagnosis Eleanore?

      Are you still able to find joy in some activities you love Eleanore? This was something I learnt in hindsight too. At first I was devastated that I could no longer do what I loved physically – play hockey, swim, maintain a ton of different social/volunteer roles, etc. I simply couldn’t keep up but do you know what I was “gifted” with this disease? I re-discovered my love of crafting and home decor and this was a gift because I spend quality time doing these activities with my close friends and cousins. It’s so nice, and while I miss the more active stuff, I truly consider the reminder of my love for crafting a gift. I have been intentionally making things for people in my life not only because it brings me joy to do so, but I hope one day it’ll be a keepsake of me for them 🙂

      Re-framing is very important I find when it comes to coping with this disease, but so is allowing yourself to feel the emotions.

      Take good care, and please write any time!
      Warm regards,
      Charlene.

    • #16866
      Eleanore DAngelo
      Participant

      Hi Charlene.  Well the flu is done and we’re feeling much better.  Going to yoga today.  I’ve read you email a few times.  Our experience was similar when we had our diagnosis.  I had been coughing for almost a year, so everyone I know wanted to know my diagnosis.  That was this past October.  It was just so hard letting people know how sick I am.  So many told me to change doctors. (Like that would change the outcome). The hardest was letting my kids know.  They are adults, but the look on their faces was heartbreaking.  I have a very good doctor.  I also have asthma.  So brio inhaler is helping with that.  My doctor is still trying to figure this out. I have s very small infiltration in my right lung top.  My lungs sound clear when they listen to them, yet this lousy infiltration is enough to hamper my breathing.  I’ve slowed down in the gym.  I don’t push myself to do extra, and the best thing is have a cleaning lady.  I read a lot and I like to color in the adult coloring books.  Sounds silly, but relaxes me especially if I’m having a tough time breathing.  Always great hearing from you.  Keep in touch.  Eleanore

    • #16895

      Hi Eleanore,

      So nice to hear from you and just so glad that your flu virus is gone and you’re on the mend. This is wonderful news! I hope you enjoyed yoga 🙂

      Yes, I agree, our experience of diagnosis does sound similar. Finding that balance of describing what IPF is, and just how serious it is, is tough Eleanore, isn’t it? I admit I certainly have not perfected it yet. With your chronic cough, had you suspected you had this long before you were diagnosed? I’m really glad you are happy with your doctor, that is so important in this entire process. I know the feeling of not having a lot of fibrosis, but enough to cause shortness of breath and extreme fatigue. Sadly, I think the fatigue is worsening for me as I am very tired with minimal physical activity now. I try to walk on my treadmill in the basement, but get quite dizzy so I am investigating safer exercise equipment such as a recumbent bike. Good for you getting a cleaning lady – this is such a good idea, and an important step in preserving our energy.

      I love colouring in the adult colouring books too, it keeps my mind from wandering 🙂

      Take care, and so glad you are feeling better. As always, it is nice to hear from you and feel free to write anytime.
      Warm regards,
      Charlene.

    • #17131
      Eleanore DAngelo
      Participant

      Good morning Charlene.  Just want to say Hi.  Still coughing from the flu (maybe) or from the IPF (probably).  I’ve been getting out quite a bit.  Going to the gym today.  Third time this week.  After my diagnosis, I was ready to quit, but then my doctor told me I had to go back.  It does make me feel better.  It’s nice to see my friends too.  How are you feeling?  The winter is tough.  I can’t wait for spring, but that brings the rain.  For some reason my cough gets worse in the humidity.  Crazy, crazy!!!!  I just wish this would go away, but I know it won’t.  Hope you’re feeling ok.  A friend of mine told me “ok” is great.  I have to agree.  Take care.  Breathe easy.  Ha ha.  Eleanore

    • #17150

      Hi Eleanore,

      So nice to hear from you, I’ve been wondering how you have been doing! Have your other flu-related symptoms subsided a bit? If so, I would unfortunately then suspect that it is the pesky IPF-cough you might be dealing with. I hope it goes away for you soon, I know how tiring it can be on our whole bodies to be coughing so often.

      Good for you re: the gym – that is not an easy task with this darn disease, so I give you so much applause and credit! What do you focus on at the gym? I know each of us find different exercise beneficial and I am currently looking into getting a recumbent bike, as I think it will help me most and putting it in my basement ensures I can do it from the comfort of my own home, which I like.

      I am doing okay, although unfortunately I  noticed today that I seem to be coughing more than usual too and it is a bit of a productive cough, which differs from what I usually have. This means that unfortunately, I might be getting sick. Keep your fingers crossed for me that this isn’t the case! Otherwise I am doing okay, getting tired of being stuck inside due to freezing rain or excessive snow. We’re being hit with another wild snow storm today! I also can’t wait for spring, or at least the snow to go away and more mild (but not hot) temperatures.

      Take care and thanks as always for writing. I agree with your friend, “ok” is just fine 🙂
      Hugs,
      Charlene.

    • #17211
      Eleanore DAngelo
      Participant

      Hi Charlene.  Always nice to hear from you. Hopefully you’re not sick.  Do you run to the doctor immediately?  I’ve learned my lesson. Sick is really sick now.  Plus I’m afraid of getting pneumonia.  I had the shot, but who knows.                                                                   The gym.  I belong to Golds. It’s very good.   I’m 71 so I take senior classes. It’s called Silver Sneakers.   Chair yoga, cardio and Zumba.  All are for seniors.  I also like to ride the stationary bike.  It’s in s movie room so the time passes quickly.  That’s what I’ll do today.  That’s about it for today.  Take care.  Eleanore

    • #17231

      Hi Eleanore,

      So nice to hear from you as always, and happy Saturday! I hope you’re finding some nice time to relax and engage in something that brings you joy. Once I finish catching up the forums, I am headed to my craft room to make some cards I think 🙂 That makes me so happy…

      Thankfully I didn’t get any type of cold or virus that emerged, so I’ll keep my fingers crossed that it doesn’t. I am quick to run to the doctor when I am sick, because like you, I am pretty terrified of a cold turning into pneumonia or settling my chest, making it even more difficult to breathe. I typically don’t take any chances, and didn’t get the pneumonia shot but did get the flu shot. Did you do both?

      Good for you for doing such frequent exercise, I know that isn’t easy with this disease so way to go! Hopefully you have a nice day today and remain feeling good since your flu.

      Warm regards,
      Charlene.

    • #18202
      Eleanore DAngelo
      Participant

      Hi Charlene.  Thanks so much for your quick response about Ofev.  I should get it in the mail today.  I’m looking forward to starting.  I tolerate meds pretty well but I will definitely follow all directions.  I’ve been reading as much as I can. I also read a lot on the forum.    I hope it helps me with my breathing.  My cough has improved quite a bit.  My doctor is pleased about that.  I’ll keep you posted.  Thanks again.  Eleanore

    • #18206

      Hi Eleanore,

      No problem, I am happy to help where I can! Glad to hear in general that you tolerate medications well, I hope this serves true when starting the Ofev as well. Please do keep me posted on how you  make out with the medications, and please be sure to eat when you take them, this is the most important thing. Amazing news re: your cough being less too, that is great. Goodluck with Ofev!

      Take care,
      Charlene.

    • #18274
      Katie Bagshawe
      Participant

      Flu season is a big thing here in the UK now and there is a lot of marketing to encourage people to get their flu jabs. We’re pretty blessed with our NHS that it’s free to all over 65, to young children and anyone who will be vulnerable. However within Healthcare (and for the NHS) they set targets to ensure staff also get their flu jabs and you can’t really refuse to have it done. Chemists on the high street also offer it, I’m not sure if or how much they charge to the everyday person wanting it done, but generally speaking it is free if it is considered the person will be highly affected if catching it. We’ve had a fair few cases of even healthy people succumbing to flu which shows how dangerous it can be if caught and left untreated.

      Unfortunately, as with all vaccines there a lot of myths pumped into the mainstream which put people off having it. I’m a big podcast listener and Sawbones did an episode last year focused on the benefits of having a flu jab and crushing some of the negative myths associated with it. Of course having the flu jab can’t protect you 100%, my Dad had the jab and still caught a different strain of flu which wasn’t covered in the jab but unfortunately that is something that can happen. At least protecting yourself in some capacity is better than nothing.

      https://www.maximumfun.org/sawbones/sawbones-27-reasons-why-you-should-get-your-flu-shot

      • #18307

        Hi Katie,

        Thanks for bringing up this important topic, I am one that supports the flu shot (or ‘jab’ as it must be called overseas, this gave me a bit of a chuckle in a good way) simply because my Mom works in healthcare and has seen the  devastation the flu can cause on those who are vulnerable. I’ve heard those stories too, so personally I believe in the flu jab, simply because I am immune-compromised. I know not everyone does of course, and respect that as well… as much as I can anyways. I have to be careful with being around people who haven’t had it and thus, may not be protected. I know it isn’t a sure sign of protection in anyways though! Here in Canada the our global healthcare covers the shot, so it is free to everyone – like a big reason as to why most people get it I think. I believe healthcare workers are required to get it here too, but can’t be certain…

        I certainly agree with you that at least protecting yourself in some form, even if it isn’t fully, is better than nothing but I know others disagree. Thanks for raising this topic discussion.
        Charlene.

    • #18299
      Eleanore DAngelo
      Participant

      Hi Katie.  So nice to hear from you.  The flu was tough.  But I had my flu shot so it wasn’t terrible.  My husband had it at the same time I did and he was so much sicker than me.  My doctor just put me on Ofev.  Hopefully the progress of my pulmonary fibrosis will slow down.  Who knows??  Keep in touch.  Eleanore

    • #18332
      Eleanore DAngelo
      Participant

      Hi Charlene.  Well I’m on Ofev for 1 week.  So far so good.  I’ve been reading all of the emails sent to the pulmonary fibrosis news.  Very interesting and many helpful hints.  I’m amazed to see how many people have this.  I never heard of it til my diagnosis.  Also when people hear what I have, I have to explain it to them what it is.  Hope you’re ok.  Eleanore

    • #18338

      Hi Eleanore,

      So great to hear from you too! I’m really happy to hear that your side effects are manageable so far with Ofev, that is excellent news. I’ll keep my fingers crossed that this continues for you. Isn’t it interesting to see how many of “us” there are out there? I wish it wasn’t this disease that brings us all together but I am thankful for everyone’s contributions. I am doing well, thank you for asking – enjoying a few days away and having a “mini vacation” with a few friends.

      Cheers,
      Charlene.

    • #18875
      Eleanore DAngelo
      Participant

      Hi Charlene.  Well I’ve been on Ofev for about 3 weeks.  First week was fine.  Since week 2, not so much.  I’m going to the doctor on Friday.  I’m going to see if I could take Ofev once a day instead of twice.  Hopefully he says yes.  I’m so miserable.  I’m taking Imodium almost every day.                                     How are you feeling?  Hope you had fun on your vacation.  Keep in touch.                                 Eleanore

    • #18887

      Hi Eleanore,

      Thanks so much for writing, it is nice to hear from you! That said, sorry to hear that the Ofev is causing so many issues for you. It can be a tough drug to adjust to for sure, I know lots of people suffering from GI issues as a result of it. Hopefully the doctor has some suggestions about how to help with the troubles it is causing for you. Another possibility is reducing the dose if you’re on 150mg? I know a lot of people have had to go down to 100mg and then seem to tolerate it better, or they take a few weeks break from it and slowly re-introduce it to their system. This might be an option too? Keep me posted on how things go Friday if you wouldn’t mind… will be thinking of you!

      I am doing pretty well, although my fatigue and dizziness episodes seem to have intensified again this week and I’m not sure what that is all about because my 02 levels seem okay. Just monitoring it for now and hope it doesn’t amount to anything! I am excitedly still planning Hawaii, and don’t go until September so I am looking forward to that. Thank you for asking about me 🙂

      Take care,
      Charlene.

    • #18959
      Eleanore DAngelo
      Participant

      Hi Charlene.  So I went to the doctor on Friday and he reduced my pills to one a day.  I also started taking the new Imodium pills that can be taken 1 hour before a meal.  I use them only if we go to a restaurant or a party. What a big difference.  I feel so much better.  The only problem is when I called cvs to renew my prescription, I mentioned I would only be taking one a day.  She wouldn’t fill my prescription, so I had to call the doctor to give me a new prescription.  I hope it goes fast because I only have 6 pills left.  Always something.  Are you feeling any better?  I know dizziness is scary.  Also the fatigue.  I mentioned it to my pulmonary doctor and he suggested B12 shots from my primary doctor.  I’m going into my breathers club mtg now.  Take care.  Eleanore

    • #18966

      Hi Eleanore,

      Thank you so much for getting in touch with me, and letting me know how the doctor’s appointment went on Friday. It’s so nice to be able to correspond with you over the the forums.

      Wonderful news that the change in pill dosage coupled with the immodium is making a difference for you! Hopefully the doctor can quickly get in touch with the pharmacy so they can re-fill the script. My Mom is a Pharmacist and always explains the correspondence (no details of course) between physicians and pharmacies and the intricacies that go along with that. I hope it’s done quickly for you. Have you ever tried the dissolving immodium that can be taken without water and just under the tongue? I think it is called “subcutaneous administration”…. they have become my lifesaver when I need it. They’re a bit more expensive but work so quickly, and are so easy to take.

      I am coming along, thank you for asking! The dizziness seems to have subsided thankfully, but the fatigue is still very much present every day. I cannot wait until bed time lately to rest both my mind and my body. I am talking to my doctor this coming Friday about it, hopefully she will have some solutions for me. It’ll be hard for me to accept if this is “just part of the disease”. I’ll keep you posted, thanks again for asking.

      Enjoy the meeting and speak with you soon!
      Charlene.

    • #19302
      Eleanore DAngelo
      Participant

      Hi Charlene.  I know it’s been awhile since I wrote to you.  I’m doing pretty good.  I called cvs again and told them the doctor said to leave the prescription as is.  So I got my Ofev in a few days.  Once a day is better, but not great.  My stomach is still crazy.  I’m using Imodium multi symptom.  It’s good.  I take 2 pills before going out to eat and it works.  I hate living like this.  I keep telling myself that everyone has something!!!!                       How are you feeling?  Spring time is another challenge.  Do you cough more?  I do sometimes.  I was at my grandsons birthday party last Saturday and we were outside all day so of course I slept 2 hours on Sunday.  Who knows!!     Well take care.  Keep in touch.  Eleanore

    • #19316

      Hi Eleanore,

      So nice to hear from you, thank you for writing! I’d been wondering how you are, but know you’d connect when you can. I’m glad to hear the Ofev side effects are a little better with the 1 pill vs. 2. Do you think your doctor will request you build back up to 2 pills, eventually? Sometimes when re-introducing the medications, physicians start patients with 1 pill but then increase to two again. I suppose each person is different though! I hope the side effects continue to be manageable, I know it is so tough to deal with.

      You’re so kind – thank you so much for thinking of me! I am doing okay, and finally the weather is warming up where I live. Tomorrow is supposed to be really humid; the first real humid day of spring so we’ll see how I manage that since last year. My lungs are definitely not as strong as previous years. I haven’t been coughing more yet, but typically I do in the spring, yes. I can’t help but wonder if I’ve had IPF longer than when I was diagnosed, because I always chalked up my spring-time coughing to allergies. Who knows, as you say! Glad you got to enjoy the birthday party! While social events like this certainly tire me out more, I am glad to be able to enjoy them, especially when they’re outside.

      So nice to hear from you, thanks as always for writing!
      Hugs,
      Charlene.

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