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    • #20821
      Mark Koziol
      Participant

       

       

       

       

       

       

       

       

       

       

      As pulmonary fibrosis patients should we grieve for ourselves while we are alive or let others grieve for us when we have passed? There is no way around the fact; PF is a terminal illness. No one knows how long our life will last. Some patients live for many years with the disease but many also succumb to this disease after a short period of time. The activity level of persons diagnosed is across the spectrum. There are some who will watch TV every waking moment of the day. Then there are others who will fill their day with so much activity their caregivers will get tired. Granted, some patients do not have the energy to engage in physical activity but I do believe we should all keep our minds engaged.

      In my particular case I chose to live my live. The title for my columns is, “Gonna Live My Life.” I was fortunate to have been given another chance of life. Some say it is an extension of life but I beg to differ. I had a single lung transplant in December 2015 and have advocated on behalf of others before my transplant and presently. I have chosen not to grieve yet and would rather leave the grieving to others when I pass. There was some negative thoughts running through my head. Luckily they occured while attempting to fall asleep. I always put best face on for others but also truly felt this way.

      I am curious to know how many of our members are truly “living their lives”. Please tell the forum members how you are remaining active; mentally and physically.

    • #20852
      Wendy Dirks
      Participant

      I’m struggling a bit right now. I am definitely living my life but I’m feeling very torn. To explain – and since we’re here in hobbies – I have a crazy hobby that I really love. I say crazy but there are literally thousands of us out there doing this. I collect 1:6 scale fashion dolls, like Barbie, but many others as well, and have transformed one room of my house into a 1:6 scale city. There are homes, a pub, a golf resort, a university, a yoga studio, a gym, a medical centre, a café, and more – a miniature world. I write a soap opera blog about their adventures – here’s a link if you are curious https://dirksdolls.wordpress.com/blog/. At the same time, although I have retired from teaching, I have a research position at a university. Earlier this year I brought all my equipment home and I am still working with a number of colleagues from all over the world. My problem is that as my disease progresses, I simply do not have the energy to do everything anymore. I am supposed to be attending an exercise class that is a follow up to pulmonary rehab and I like to practice chair yoga at home. These are basic self care activities. But research, hobby, and self care are impossible in the same day. Showering is exhausting, exercising is exhausting, working at the microscope and image analysis – staring at a screen all day – is exhausting and between prioritising work and self care, I have almost no time for my hobby and that makes me feel depressed. How does one juggle all the important things in life when every activity requires a three hour afternoon nap afterward! Anyway, I’m working very hard right now to finish up several projects with my former PhD students so I can finally get back to a normal schedule and play with my toys! Thanks for a place to vent, by the way.

       

      • #20881
        Mark Koziol
        Participant

        Hello Wendy, I think your hobby is amazing. Wow, so much creativity. Who knew something like this existed. This hobby it appears is your safe and and peaceful zone. It sounds like you do have a handle on your priorities. I know the feeling of being tired all the time. Its not a good place to be. You can vent any time you wish. This is what the forum is. Everyone on this forum understands because they have experienced what you have. Keep coming back. Best wishes, Mark.

        • #20900
          Lorraine
          Participant

          Would love to see a photo of your collection, if you would consider posting.

          Have you heard of Gulliver’s Gate? It is the Largest Interactive Miniature World On The Earth. 50,000 Sq. Ft. To Explore! And experience a massive, mesmerizing World of Miniatures. Explore 5 Continents. You may have the web site interesting. www DOT gulliversgate DOT com.

          Wishing you the best.

          Thank you,

          Lorraine

           

           

        • #20939
          Wendy Dirks
          Participant

          Thank you, Lorraine! I will definitely check out that website. I can’t seem to figure out how to upload photos, but if you go to the link in my first post, you can see loads of my photos.

        • #20952
          Lorraine
          Participant

          Oh Wendy, I did check out your amazing miniature world and the adventures showcased in the soap opera blog, I was hooked. Outstanding detail. You are very talented on many levels. Your city and the citizenry must be therapeutic and joyful — and certainly enjoyed by fans.

    • #20891
      Lorraine
      Participant

      I too am struggling. My disease is progressing, slowly but none the less, progressing.

      I can’t get this disease out of my heart and head. I was in a terrible funk for most of the summer and started to withdraw, putting myself in Social Isolation. At times I called a free mental health counseling service. Sometimes several times in a day. It helps.

      According to a recent PFT, my diffusion breathing has worsened, and I have noticed the difference when I resumed my walk.  Also, the walk took a half hour longer than my previous normal. Of course the humidity does not help.

      Recently, I was able to remove myself Social Isolation, and have been doing fun things. Reaching out to friends. Filling up the calendar.

      When I saw my pulmonologist the other day, she asked me how I was feeling. I said depressed and sad and she said, I should. (That made me feel worse!) She said she wanted me to start counseling within a month.

      I found someone who works with 9/11 First Responders, I am a 9/11 Vicitm. She takes medicare and ironically my first appointment is on 9/11.

      I am hoping and trying to resume all facets of my life.

      • #20892
        Wendy Dirks
        Participant

        Thank you, Mark!

        • #20893
          Wendy Dirks
          Participant

          Oh, Lorraine, I really feel for you. I’m glad you’re getting out a bit more and I hope that counselling will help. I feel sure that it will. It’s difficult not to feel grief for ourselves in this situation and I think it’s perfectly normal to do so. There’s a wonderful practice from Dr Kristen Neff, a mindfulness and self compassion advocate and author, a way of giving ourselves self compassion. I like to put my hand on my heart when I do it. This is my version which I learned from a wonderful yoga teacher: I say, “This is a moment of suffering. Other people are suffering just as I am right now. May I give myself the kindness and compassion I need in this moment.” Here’s a link to Kristin Neff’s website with alternative phrases you can use: https://self-compassion.org/exercise-2-self-compassion-break/.

        • #20896
          Mark Koziol
          Participant

          Hello Wendy, you are so welcome. Thank you for offering Lorraine suggestions. Your suggestions are highly appropriate and appreciated by all forum members. Mark

          • This reply was modified 1 year, 8 months ago by Mark Koziol.
        • #20898
          Lorraine
          Participant

          Thank you so much Wendy. I really appreciated your input and information-sharing. I have looked to the link and like what I read. And when I practice and follow the mindfulness techniques of Dr. Neff, I will follow your lead and put my hand over my heart.

        • #20940
          Wendy Dirks
          Participant

          Thank you, Lorraine. Learning about and practicing self-compassion has been a life saver for me, even before my diagnosis. It’s such a blow to learn we have something so debilitating. I’m due to begin immunosuppressant medication soon and when I asked the doctor if it would make me feel better, and she said no, I felt so deflated but she said that’s not their goal – it’s to keep me stable. That perked me up a bit. Many of my friends and family want to help, others just seem not to get it. I don’t look different – I don’t look ill. So they expect me to be able to do everything I’ve always done and I just can’t. Then, when I do go out, I feel as if people are staring at me because I have to stop and catch my breath and I’m breathing so heavily. I’ve even had people pull over in their cars and ask me if I’m okay, and then I have to explain, that, yes, I’m just catching my breath. So self-compassion and self comfort mean a lot!

        • #20951
          Lorraine
          Participant

          Hi Wendy:

          Yes, I easily see how the self compassion meditation exercises are a life saver.

          After a few hours of sleep last night, I woke-up startled, from a deep sleep, haunted by the disease. I reached for my laptop and played, then practiced one of the self compassion meditation exercises. That did the trick, I relaxed, and a peaceful sleep followed. Before calling it a night, I will practice another.

          I hope the immunosuppressant medication keeps you stable and that you do not experience any side effects!!!

          The only one’s in my camp, that I have told, do not to get it … because of the issues you mentioned, that they say I look good etc. That said I no longer feel comfortable in discussing the disease with my friends, unless they ask me.

          And yes, in sum our new normal must come with a lot of self compassion and TLC.

          With appreciation and admiration,

          Lorraine

           

        • #21170
          Cynthia
          Participant

          It’s possible you might feel better after starting the immune suppressive drugs if you have inflammation. I just started prednisone and CellCept two weeks ago and my pulmonologist is hopeful that some of what he sees in my lungs is in fact inflammation, which can be eradicated. The scarring, of course, is irreversible, but hopefully the drugs will slow down the progression of that. I think you said you have hypersensitivity pneumonitis. I believe that usually involves inflammation.

          I do hope I have some time where I feel better than I do now. Right now I always feel like I’m coming down with a bad chest cold. But, like others, I look fine and so friends kind of expect me to do more than I’m capable of right now.

      • #20894
        Mark Koziol
        Participant

        Hello Lorraine, thank you for commenting. I know sometimes it’s hard to express your feelings to others when you are not feeling that well. It makes me happy you are beginning to resume your normal activities. Fill the calendar up, reminisce with friends and keep active as your body will allow. Thank you again. Mark

        • #20899
          Lorraine
          Participant

          Thanks Mark

           

    • #21006
      Katie Bagshawe
      Participant

      Hello everyone! Thank you for raising such an important topic Mark, and something which I think really pins down the need for emotional and psychological support to those diagnosed with PF – something which is severely lacking and that truly saddens me.

      I feel I may have mentioned this in my past posts, but I feel it is something I adopted through my teens in learning how to cope with my own mental health illnesses, before it became a bit of a game changer in how I helped my Dad cope with his health deteriorating. Not every day is the same. He was always so terrified that if one day his breathlessness or energy felt worse, that it was permanent and it was something I had to make him recognise that each day is different from the next. Like a healthy person wakes up and is some days in a naturally energetic fit good mood, there is no rhyme or reason that some days they wake up in a funk feeling out of sorts and not motivated. We have to have the bad days in order to be balanced out with the good days. If it was turning out to be a bad day, just like I did with my episodes of depression, I’d hermit myself in, do the self care things I love like reading or watching films or baking and then promise to myself that the next day we’d try again and all that boils down to what I did for him. Nothing is permanent.

      Of course the bad days can feel endless which is why you need to have baby steps, just go for a little walk or even a drive out for a coffee, even through a drive thru. It’s so easy to get cabin fever, and it’s amazing what a little change of scenery can do for you. Find a quiet spot to enjoy the silence and think of all the things you can be grateful for.

      I find it interesting about your thoughts on the fact that it is a grieving process when living with this disease because you might feel entirely focussed on all the things you’re losing because it far outweighs the positives of whatever (or if anything) you could be gaining. But I think it’s important not just for people with PF, but everybody, to find the happiness in the little things that make us happy because the negativity and unhappiness can drive us all to a state of disrepair that feels too heavy to be dragged out of.

      Take a couple of minutes and think of three things that make you happy, or at least comfortable and content. It doesn’t have to be much, and this is something can change with the seasons or your mood. For example, on these hot summer days where I feel super uncomfortable and am wishing away the time to return to cooler months, I’ve found things that give me solace.

      Finding a shady spot to read or write in, or even watch videos on my laptop

      Painting my nails and giving myself a bit of a manicure

      Doing a bit of cooking in the kitchen, experimenting with new recipes

      These things genuinely give me that little bit of relief and joy when my mind sometimes struggles with the memory of the grief and sadness I feel in the loss of my Dad. You should not feel guilty for being sad or for being unhappy, or feeling empty and alone. We all get that way. But you need to remember there is a community all around that is living it with you, and is here to listen. I work in a job where I’ve seen many tragic events unfold in the blink of an eye, and along with the loss of my Dad, it’s given me a wake up call that life is always fragile and it is always out of our hands, so get back the little control you can and seek your happiness. Because you all deserve it so so much.

       

      • #21012
        Mark Koziol
        Participant

        Hello Katie, thank you for writing such an eloquent narrative. I think you offer great suggestions as always. Hope you have a great Sunday or what’s left of it. Mark

    • #21015
      Nan
      Participant

      Hi Mark,

      Thank you for bringing up such a rich and thought provoking question. I have issues with this because i have come across too many doctors that are dismissive and leave me confused. Let me explain. In 2017 I was diagnosed with breast cancer, my first taste of the medical field, I was told it was early and treatable (great but told in a dismissive way). During radiation i developed a cough, i was told it was a cold, many times even though i said no it’s not. 6 months after radiation i finally had a CT, showed fibrosis related to radiation. I said “i have pulmonary fibrosis?” he said yes but from radiation it is very slow progressing. OK, well i told him my dad died of PF, he said nothing. I asked FD if i should see a respirologist, he said not till i have symptoms, lol i guess a cough was not good enough. Fast forward 6 months, still coughing, still being told a chest infection and given puffers. I got a new FD who said oh the PF is so slow you will live a long time. Next CT shows no significant increase. Still coughing. 3 months later FD sends me for PFTs, surprised I did not have it done already. Results state mild ILD. I then saw a doc at internal medicine clinic, for a different reason, i mention that my cough is worse, i am SOB very easy, I can’t yawn and i can’t take a deep breath. I ask if i can have a referral for an ILD clinic, she says “why” i said well i have an ILD. Your CT hasn’t changed ( 5 months ago) but yeah you should have already seen a respirologist. UGH. She made a non urgent referral which here in Ontario could mean 9 months for an appointment. I reminded her of my dad, she says oh but his was not from radiation. I said “yes he had radiation for bowel CA, initially they told him it was radiation/chemo induced, later changed to IPF and they poopooed him too till he died 5 years later”. She said nothing.  All this to say i have so many emotions and confusions and i grieve for myself, what i will miss what I can’t do now and will not be able to do in the future but yet no treatment, no doctor even taking me seriously or being honest when i say i cant breathe. A friend of mine who is a surgeon told me docs don’t like to give bad news so they down play things but it makes it worse for the patient. I am scared, sad and confused. I love the suggestions here and i am presently reading the book by Kim about the PF journey. I love the hobby of miniatures that is so cool. I am going to have to have a deep convo with my FD this week because i am finding my job difficult. I work in a hospital and run all over the place and it is too exhausting. I need to do a different role. I also fear all the germs in the hospital. One thing that helps me is reading others that struggled with getting a dx even with all the symptoms. I want to be well enough to go to my sons wedding in April, in China, he is a teacher there.

    • #21016
      Mark Koziol
      Participant

      Hello Nan, I’m sure your story  resonates with so many affected with this disease. After hearing stories where doctors were dismissive I am so happy I live near top notch hospitals who are familiar with ild’s and pf. I do believe you should ask for another position where it limits your physical activity. You can work out on your own time. There is no reason for you to come home physically and mentally exhausted every day. My hope is for your pf to stay stable and you travel to China to see your son get married. Have that direct talk with your doctor. Advocate for yourself, you and all patients deserve an answer on the state of their medical condition. Best wishes, Mark.

      • This reply was modified 1 year, 7 months ago by Mark Koziol.
      • #21025
        Wendy Dirks
        Participant

        Hi, Nan – I really feel for you. My father died of IPF 30 years ago and at the time his doctor told us to be very vigilant about our lungs because they didn’t really understand the underlying genetics very well. My own case was complicated because I had pulmonary emboli following a DVT after surgery for a broken ankle. I just didn’t recover and several years later, constantly complaining to my GPs about my inability to breathe, I was finally referred to the ILD clinic and diagnosed with a different form of PF, chronic hypersensitivity pneumonitis. My doctor told me that PF runs in families but that it manifests in very different ways within them. It seems as if there is a genetic predisposition and the trigger and manifestation can vary between individuals. It’s so frustrating to have to fight and fight and fight for a diagnosis. Apparently getting a diagnosis can be very challenging. At least once we have one, we can begin to deal with it. All the best to you!

    • #27499
      Jerry
      Participant

      Great Topic and thank you for the post. I won’t bore everyone with my IPF details except to say I’ve had it many years and it’s progressed to the point it now demands my full attention.
      I just want to say Thank you to all of you who have post comments on here about depression and negative thoughts, frustrations etc. I too have had many of those feelings. It’s hard to get out of bed some days. I’ve taken all the high dollar Meds- Esbriet, Ofev etc. Getting your hope up only to realize they don’t seem to do anything but drain my bank account. Most frustrating to me was finding a doctor that I could trust. Lots of pill pushers out there but very few real Doctors.
      But on to the subject of living life in my opinion, I live in the deep south, I find I have more trouble breathing during hot humid days, So I welcomed the winter we had this year. Heck, we had 5 inches of snow. What a site that was! just beautiful. I live out in a very rural area. I have a little side by side that I get on and take off across my place to go down to the pond and feed my ducks or go hunting or just ride around an hour or two until me or the oxygen bottle gives out. I am a believer in Christ Jesus and my faith in him gives me a great peace. I pray you will all find that peace.
      Another important thing in my life and maybe yours is that we are sort of blessed with the knowledge our time is short. Yes this can be a blessing in some ways. We are able to see and understand things in a little different light than so called healthy people. A guy got so mad in a restaurant not long ago because his beans were over cooked. What a fit he threw over a bowl of beans. We can see whats important and whats not. Relationships are important, Kind words are important.
      Mending broken fences is important. Having that special relationship with your maker is important.
      Live the best life you can, while you can. Make sure you tell someone special to you that you love them. The rest will not matter in the end.

      • #27573

        Amen to your post @jerryg! Thank you for sharing and I especially love how you highlighted what’s truly important in life at the end of your post. Sometimes we learn that too late in life, but I consider learning it early a gift — I just wish it wasn’t a lung disease like IPF that taught me those lessons. Thanks for taking the time to write us.
        Kind regards,
        Charlene.

      • #27671
        Kathleen Ryan
        Participant

        Hi Jerry and everyone. It’s comforting to know all my symptoms – exhaustion in particular, are shared by all of you. Simple things – taking a shower – seem like an impossible mountain to climb. I guess I’m trying to figure out what living my life means. Most days it’s watching tv or doing a puzzle. I play with my dog a bit, but I get tired so quickly. Trying to be optimistic while still dealing with reality is a challenge, as I know it is for all of us. The difficulty I have is accepting what my life is since pulmonary fibrosis. I only need oxygen at certain times, so I’m trying to take advantage of the additional freedoms I have without needing to carry oxy wherever I go. I feel an urgency not to waste this time, and then I get frustrated when I’m unable to do something I’d like to do. I’m so glad all of you are here!!

    • #27559
      Pam Mckee
      Participant

      When my husband had terminal cancer we did two things:

      We looked at today and how things were that day.

      We did one fun thing each day as our outing. It may have been a drive or just sitting on the porch for coffee but we identified one thing as our it for the day.

    • #27590
      Jackie Kalina
      Participant

      These comments shore me up so much. I still vacillate from complete denial to resignation. I also dropped down to 100 mg of OFEV. That added to the quality of life and some days I feel jubilant. I figure I must have an answer and in reading your comments I realize there isn’t one. I get so tired. Still not on oxygen and my oximeter says I am mostly in the 90’s. However, some days I feel my body has been drained of blood. To raise my arm, requires effort and will. I love the good days. Is it the OFEV or the IPF? Thank you all for sharing your strength.

    • #27610

      Hi Jackie,

      Thanks so much for writing and sharing your experience and thoughts with us. I’m so glad to hear others’ comments on the forum are helpful to you. Hang in there, this disease is so difficult to manage! I’m glad to hear going down to the 100 mg of OFEV was helpful, but I know it certainly still feels exhausting. Unfortunately how you feel could be a bit of both – the IPF itself or the Ofev – so hard to know. Thanks for sharing with us, and being vulnerable. We appreciate you.
      Char.

    • #27615
      Marianne
      Participant

      Hi Everyone –

      I try to surprise family and friends with fresh flowers, baked items and hand crafted items.  I have always done the flowers as local grocery store has a reduced flower section.  Often I can get flowers from $1 to $4 for a whole bunch of flowers.  Especially love to get roses because if they are slightly wilted or have brown edges you just pull off the other layers and they look great.  Right now I am making hot/cold rice packs and little gnome figures.  I try to craft with a specific person in mind.  Say they like dogs or cats – I make something with a dog or cat on it.  I am having a blast, keeping busy and spreading joy to someone else.  I also go out to run errands and visit a few select friends and family.  Growing up I remember my mom always saying give flowers to the people while they are alive.  I have even walked up to strangers in restaurants (pre Covid) and gifted them with flowers.  I think I get more joy out of it than they do.  Also since retirement, I have spent more time keeping in touch with family & friends by texts and phone calls, sent greeting cards to them, dropped off gift cards.  Have done a few porch drops since Covid.  Text or call and tell person I am dropping off something at their porch or front door.  People seem to enjoy these surprises.  Others have done the same for me.  Some times I am lazy or not having tiring day I just wrap in a blanket and read a book.  Hope to get some traveling out of state in a couple months to family and friends I haven’t seen for 2-3 years.  Life each day at a time.  Enjoy your life as best you can while you are still able.

      Marianne

    • #27652
      Don Kauffman
      Participant

      One common problem that appears in these posts is that some, or maybe many of us are exhausted thinking about, during , and after taking a shower or bath.

      I am on 3 liters of oxygen for activity, and have a portable concentrator that I pretty much take every where I go now. My supplier offers me ,along with the regular 7 ft. cannula,  a 25ft. and a 50ft. extension which allows me a little more latitude . I’ve found the 25ft. ext. to be a “great friend” allowing me to throw it over the shower curtain rack or in the tub; work from one end to the other of my workbench; and run around the kitchen like Stanley Tucci.

      Now, If I can get Boehringer Ingelheim to  include coupons for Cottenelle and Charmin when they ship the OFEV, I’ll be really happy!

      Don Kauffman

       

    • #27655
      steven mason
      Participant

      Reading these posts brings back many memories. Is it possible to get an update on how wendy and @lorraine are doing?

      • #27657
        Wendy Dirks
        Participant

        @smason

        Hi, Steven – Thank you so much for asking, that’s really kind of you! I am not doing too badly. I was feeling very low over the summer because I felt as if my lung function was declining rapidly. (It was, for the record.) I started on CellCept (MMF) and began getting palliative care from Marie Curie Hospice, including physiotherapy. I was exercising so much that I was going through my oxygen gas cylinders very quickly and was changed to liquid.  I’ll be honest – I’m 68 now and didn’t think I was going to make it to see my 70th birthday. But by Christmas, I suddenly began to feel much better. That’s when I had been on MMF for 4 months. At my last in-clinic appointment, some of my lung function (I don’t know all the right acronyms, sorry) had stabilised and at least one measure had improved slightly. This was such wonderful news, I feel as if I have the proverbial new lease on life. I’m really looking forward to the end of lockdown and the warmer weather so I can get outside and go for walks. I have a rollator walker, which can hold my oxygen, and I can’t wait to get out there! Having the right oxygen supplementation (my flow rate was also increased) has made a huge difference too. Some days I am full of energy and actually can forget I’m ill as long as the oxygen is flowing. On other days, I still have a lot of fatigue, but I feel so much more optimistic!

    • #27699
      steven mason
      Participant

      Wendy–I am actually typing this for the second time–which should tell you something about my key board skills. Your initial post was from nearly 2 years past. I do not have ipf–but I suspect that optimism is strong medicine. I have often wondered whether it is a learned trait. I am sorry you are in lock down–I live in florida and today was hot–low 80’s? Keep doing what you are doing.

      • #27703
        Wendy Dirks
        Participant

        Hi, Steven – I reread your earlier posts and realised that your dad had IPF. My dad also died of it over 30 years ago. My son, who died last year at age 43, had multiple sclerosis. Clearly there is a genetic link of some sort that makes us susceptible to overactive immune systems. And optimism is clearly the best medicine! Florida sounds lovely – my brother and his wife live there. It’s struggling here in North East England to reach 50 degrees! Best wishes, Wendy

    • #27700
      steven mason
      Participant

      There was a book I looked at a few minutes ago–thinking about buying called “code breaker” It is all about eliminating flaws in our human code–something like that. It sounds complicated–but I wonder whether it has promise for ipf?

    • #27705

      Let us know if you purchase and read it Steve! Always interested in hearing about some good books. I likely wouldn’t understand any codes associated with IPF – I’m not that smart — but would be good to share with others 😉
      Char.

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