Viewing 10 reply threads
  • Author
    Posts
    • #30146
      Lori Kathryn Ward
      Participant

      I was diagnosed January 2021 with IPF, but that was no surprise to me as my Dad died of PF in 1996 and 2 sisters died from in in 2018 and 2019 and a nephew was diagnosed in 2019 at 53 and 18 months later had a double lung transplant. My 2 other sisters have IPF and Hypertensive Pneumonitis. 13 of us went through genetic testing at UChicago Med and found 9 of us were carriers of the PARN gene mutation as well as short telomere syndrome. So when I went to a COE and had Dr. Ryan Dunn at Illinois Lung Institute in Peoria, IL run a CT and PFT in January, I wasn’t surprised with the diagnosis of mild IPF. I went on OFEV and Tuesday had another PFT and found I was slightly worse. I will be anxious to see the results of my CT scheduled in Jan. of 2022 to see if the OFEV is slowing the progression of scarring in my lungs.
      Since I have seen exactly how devastating PF was on my family, I know what my future holds. I have a strong faith and most times have a positive attitude, but recently was told by my close friend that I shouldn’t dwell on my diagnosis as ‘any of us could die any day’. I tried to explain that if she (who has had cancer in several of her family members) were to be diagnosed with cancer, it would hit her harder than someone else because she has seen firsthand what happened to her loved ones and knows what might be ahead for her. That’s why I might ‘dwell’ on my diagnosis more. So after going to my doctor Tuesday and seeing all of the patients in the waiting room on oxygen or needing to be in wheel chairs, it was like staring my future in the face and I was fragile. But I was more or less told by my friend that we all have our problems and I shouldn’t focus on the negative.
      Does anyone else have trouble with insensitive friends like this? I’m trying to get the most out of the time I DO have left, and knowing what lies ahead makes me want to spend more quality time with family and friends and I do get my feelings hurt if they don’t make the time for me. I feel like I have a lonely road ahead of me if they will only rally around me when I am on oxygen and dying. I want to spend more time with family and friends doing fun things now, BEFORE I am restricted with an oxygen tank or stuck in bed.
      I am researching virtual support groups that I can join and trying to find a good Christian counselor locally to help me with these feelings, but thought I’d reach out to this community from whom I have already gained so much insight and support. Thanks, Lori

    • #30151
      denise anton
      Participant

      Wow Lori, I just read your post. Firstly, I am so sorry you have experienced so much loss and suffering. I was diagnosed last year, on Ofev 100mgs, but just had an exacerbation which was the first time I let the disease affect me.  I rely on my Christian faith and it sustains me. I would love to be a offer a way to support you and share in your difficult journey. Not sure how we get a closer communication, but I will look into it. Blessings for you and all our fellow IPF spirits. Denise

       

      • #30156
        Lori Kathryn Ward
        Participant

        Denise, thank you for replying to my post. I, too, rely on my faith and did a 24 hour fast and prayer Sunday-Monday that helped me calm my resentful feelings. I would love to connect with you in a closer way as well, as we seem to have started this IPF journey around the same time. Be gentle on yourself and try to avoid stressers that can cause an exacerbation. (EASY to say, NOT so easy to do, right??!!) Blessings to you as well, Lori

        • #30157
          denise anton
          Participant

          Hello Lori, Understandably, the forums don’t allow for personal info to be shared. I will pray for you and your family. Please keep me in yours. Stay strong and find God’s beauty which is everywhere to help comfort you. Blessings and Grace, Denise

           

           

    • #30154
      Wendy Dirks
      Participant

      Dear Lori –

      I am so sorry to hear how you are suffering after your own diagnosis and so much loss. My father died in 1989 of IPF, just three years after he was diagnosed. My son, who died last year at age 43, had multiple sclerosis, along with other issues that affected his health. I was diagnosed with a different form of PF, chronic hypersensitivity pneumonitis, 3 years ago. Clearly there is a genetic link in my family to create these immune system disorders. I have to remind myself frequently that medical care for interstitial lung diseases has moved forward significantly since my father’s death and I will celebrate my 69th birthday on Saturday focussing on my gratitude to be alive. But believe me, I have struggled with negative feelings as well. We all have.

      It is absolutely normal to feel depressed. You deserve nothing but love and compassion from friends and family. I am sorry your friend is giving you such poor support and showing so little understanding. I have not had that experience so I am not sure what to suggest.

      I do suggest this book, written by a regular contributor to Pulmonary Fibrosis News before her death waiting for a transplant. It’s called “Pulmonary Fibrosis Journey: A Counsellor and Fellow Patient Walks With You” by Kim Fredrickson. Kim was a professional counsellor and a Christian and the book offers practical advice on everything from dealing with the initial diagnosis to how to use supplemental oxygen and is laced with wisdom based on her Christian faith. I think you would find it very helpful.

      I am not a Christian but I practice mindfulness meditation and yoga and have for many years. Mindfulness helps keep me focussed on the here and now and enjoying what I can still do instead of worrying about what I can’t do anymore. I am also receiving palliative care from a charitable organisation here in the UK called the Marie Curie Hospice. Palliative care is wonderful. I just returned from a session with the physiotherapist and a talk with the nurse who provides emotional support. I just discovered that I can go for respite care if my husband needs a break as my carer. He is 76 years old and caring for me is almost a full time job. If there is an organisation near you that offers palliative care, I can’t recommend it highly enough.

      Sending you all the love and support in my heart and hoping you will find comfort – and the ability to deal with your friend.

      Wendy

      • #30155
        Lori Kathryn Ward
        Participant

        <div class=”gmail_default”>Wendy, thank you so much for taking the time to respond! Happy 69th birthday coming up! Thankful you can enjoy another birthday! Thanks for the book suggestion – I checked into that and will be able to start reading that today! And thanks for the suggestion of looking for palliative and respite care. My husband, bless his heart, has NO idea how to cook, clean or take care of me so I know I will need help in the future. I’m sure that our 2 daughters will come help, but they have young children and I don’t want the full burden to rest on their shoulders and our 2 sons probably won’t help.</div>
        <div class=”gmail_default”>I have suffered for almost 20 years with Fibromyalgia and my kids have complained that I still try to do all the things I used to do and ‘rally’ well when they are over so it’s hard for them to believe me when I say I had to stay in bed for days afterwards. But it’s so hard not to want some ‘normalcy’ and to do special things for our 4 kids and 7 grandkids. This weekend, my friend said the same thing about my PF. She said “you tell us about your illness and that you need to stay away from stress and be careful – so why do you still do all the things you do?” So I guess I need to 1. Stop bringing up my diseases and 2. Don’t overdo things that might cause a flare up. 3. Don’t put on a good face if I don’t feel well and try to push through it – just admit I’m feeling bad and allow them to step up and help.</div>
        <div class=”gmail_default”>But I WILL be seeking counseling to help me through these feelings and I have prayed and meditated A LOT since all of that happened this past weekend so I am much more at peace today.  Have a wonderful day! Lori</div>

        • #30235
          Willie X Shapiri
          Participant

          Hi Lori, sorry to hear what you’re going through. I know what you’re feeling. I think all on this website do.  My mother died of IPF in 2001.  I was told I had nothing to fear, that it wasn’t hereditary.  In 2016 I finally got a diagnosis of Sjogren’s.  In 2017 they hit me with the bomb that I had IPF.  I was devastated and was told that technology evolves and diagnosis come to light that never have come before.  It was terrifying. I was paralyzed with fear.  I too saw what my Mom went through.
          I’m now 74, andI’m involved in my church big time, I take classes, and I go out with family and friends and am in the process of renovating my apt.  I know what my limits are and have learned to tweak my activities a bit.  I can’t carry parcels so I bought a rolling backpack when I shop, I sit when I need to. I get tired so when I do I rest 10, 20, 30 minutes, whatever I need.  I can’t walk long distances so I bus it.  I find I need 8 hours sleep minimum.  Everyone says the same – you do too much – stop! I can’t exercise hard so I do it gently and I cope with some serious coughing.  Just remember people mean well.  They really do.  I forgot to mention I had COVID to compound everything but I’m still here!  It was horrible, but I’m still here!
          Changes come no matter what whether we have an illness or not.  One day I decided that I could live in fear which means no enjoyment or go with the flow and enjoy every minute. I keep up with my doctors’ appointments which is important.  I do hope you do whatever you need to to feel better.  When someone says you do too much, smile. I do and reply, “I’ll do till I can’t!” We don’t know what the future holds, none of us do.  Keep active, do things that make you happy, don’t surround yourself with negativity.  Activity is good for the mind.  We don’t have idle time to dwell on what we have. Lori, G-d bless you.

    • #30163
      Donald Salzberg MD
      Participant

      Hello Lori

      I read your story that you wrote and comments from others. Amazing family history so I understand how acutely aware you are on what’s ahead. You haven’t mentioned your age.

      Im Don and I’ve written here before. I’m a retired physician (I had a very successful solo Ophthalmology practice). After 63 blessed years of essentially perfect health (besides minor kidney stones/shoulder repair), i knew something was not ok (but not initially pulmonary symptoms)!!  Readers digest version is that I had a VATS lung biopsy and my diagnosis was IPF. When I started to research IPF I went into such a funk.

      I did the why me phase! Anger! What do I do with my practice??. I was so exhausted I was cancelling 20 patients 4 days a week. I thought at first I was burnt out/depressed. I felt I deserved better. How can i do eye surgery using oxygen (not in need after 3+ years on OFEV)!!

      Then came Covid and I immediately knew I was done practicing medicine as the risk was too high (vaccines were 9-10 months away). Covid and IPF switched me from being a victim to being liberated and being blessed. Lots of therapy and Krishna Das and reading—I truly find one day at a time is critical. Gratitude that I’m not worse and did not have an AE (acute exacerbation) is there. Planning is important for sure. But I’ve stopped worrying as that does nothing and creates fear. I’ve tried to go from survival mode to living with this “blessing” and it’s helped. Helping others (it’s different now that I’m not in my practice) still makes me happy and useful. I am more spiritual. Think of one reason to be grateful each day. Be the best you can be. Everybody claims to have a condition/ issue/ problem that is worse than yours (in their opinion). It does feel there is less empathy out there. Just set an example for others—it will help you.
      With all the research etc going on, there in no way to know where you will be. Each and every person with a given disease manifests it differently. Sometime worse and sometimes better. OFEV and Esbriet are game changers so we will statistically benefit from them.  If you keep projecting into the future and thinking negatively—all you will get is fear and anger and resentment. I’m not as religious as I used to be but calming yourself down is great. People throw stuff on you to make themselves feel better.  Show them love.  A great book I read is called WHEN BREATH BECOMES AIR by Dr Paul Kalanithi  So sad but so powerful to learn about living with any awful disease. Anytime you want to reach out feel free.  I hope I made some sense.  I’d be happy to talk about Krishna Das who has helped so much in grounding and calming me  Be well and kind to yourself.

       

      • #30170
        Lori Kathryn Ward
        Participant

        <p style=”text-align: left;”>Don, I wrote a nice response to your reply and before I hit ‘send, I lost it so I will have to stay over tomorrow. I need to get to sleep now! Thanks for writing!</p>

    • #30164
      Diane D
      Participant

      I’m so sorry to hear of your family history of IPF. It must be a lot to go through when you believe that your disease will progress in the same way. Please remain hopeful that ongoing research and progress in finding new remedies will help your disease fare better.

      I was diagnosed with RA-associated interstitial lung disease, and several CT scans later, my pulmonologist has said my disease has gotten worse then better then worse then better… The fact that I’m on DMARDs may be helping to ameliorate the progression of the disease.

      Please hang in there. There is hope. Brilliant researchers keep discovering new ways to help.

    • #30165
      Christie
      Moderator

      Hi Lori, I am so sorry that you have been struggling lately, and dealing with an insensitive friend to boot. I don’t have a lot to add, since the replies to your thread have had both compassion and suggestions for reading, prayer, etc. But I do want to say that many people do not really understand the grief of this whole process unless they have been through something similar or are willing to be intentional in their listening/empathizing… but of course, being empathetic is painful when it comes to terminal illness. I am not forgiving your friend for being so dismissive–that is not ok–but just stating that that kind of conversation may be more common than you’d expect coming from people you love.

      Your feelings are valid and you deserve to be heard and respected by your loved ones. Anyone who claims that you are “being negative” or are complaining, dwelling, etc… well, they don’t have your best interest at heart. Experiencing negative emotions and grief is important, and if you have people in your life who will sit with you through that, cling to them. Forget the rest when you need support. Or, be very upfront that their reaction to your pain is both hurtful and unhelpful. They may come around. Know that you’ve always got people here who can listen and comiserate, though.

      • #30169
        Gweneeth
        Participant

        Lori, Christie put it beautifully and all the other comments were so helpful to me as well. I have had an enormous, positive response from friends, neighbors and my children (they have surprised me).  Part of it is living in a rural farming community that’s isolated from any major city makes us look out for each other more.  I wish I could share some of these folks with you. If I was in your shoes I would first ask God for wisdom to deal with the hurtful fried and then I would ask Him to bring me new friends. I had a person I had only met once call me and offer to help any way I needed. She now comes once a week and cooks for me so I have meals in the freezer. I asked her why she does this. She said that God said, as only God can, that she was to help me.  As my freezer filled up I felt I was taking advantage of her kindness. Her response was, God will tell me when to quit unless you don’t feel you need me anymore. We’ll shut my mouth, I asked her to please keep coming. She is so much more than just my cook!  I will pray specifically for your friend to ‘see’ herself better and for God to send you the people you need. Hugs

    • #30176
      Dennis Rowe
      Participant

      This reply is for all of you(except Christie-thankfully!)

      I am 2 1/2 years post bilateral lung transplant, and had several exacerbations before getting my transplant at UCSF.  Christie’s mother was there at the same time I was.

      As someone who was very fortunate to get the necessary transplant to continue my life.  I urge all of you to seek out that solution, if you haven’t already!!  I was on Esbriet and it helped me, but a transplant is the only cure!!!

      Stay strong!

    • #30187
      Julie Grace
      Participant

      Dear Lori, My advice to you would be to live life to the fullest.  Do that bucket list. Have no regrets. And don’t take no for an answer on a lung transplant. I speak from experience as I am now a young widow of a husband who had IPF. Your friend is probably @ a loss of how to comfort you. Sometimes it is hard to find the right words. Sincerely,  Julie Grace

    • #30193
      Mary Geissler
      Participant

      So sorry you have had these feelings. My mother passed from IPF and at 73, I was just diagnosed in May after having excellent health most all my life. I just got so sick with what I thought was bronchitis that left me exhausted and short of breath for two months. I am not on meds …yet…but I did enroll in the Pulmonary Rehab program through my pulmonologist at local hospital. I do an hour twice/week of workouts on machines and treadmill. I lift weights and someone is there to monitor my Oxy and heart rate. I can’t tell you how much these classes, which last three months, have done to improve my overall stamina and ability to regain so much lost strength and muscle. I love the challenge of working a little bit harder each time, tiny increments, but I feel so much better than I did. I usually do not share with anyone about my diagnosis – except my sister and daughter, and of course hubby. Because I look the same as always, no one guesses, unless they happen to hear me cough. I have always been super private but you sound more social. I think unless we really LOOK sick and frail, our friends/family just can’t wrap their heads around it. I am going to find a yoga class after my rehab is done. I know these are not cures, but staying as fit as I can has already given me back so much that I thought was lost forever. Please keep in touch in the forum – great, compassionate people here at all stages of this disease. Are there any clinical trials near you that you could maybe take part in? Don’t quit exploring options that will help you feel good and improve your outlook at times when you are feeling low. Blessings – Mary

       

      • #30218
        Lori Kathryn Ward
        Participant

        Thank you Mary, for reaching out! I am so sorry you are living with PF as well! I’m going to look into places where I can continue to exercise after the weather gets colder and I might not feel like taking my 3 mile walk every day! I keep telling myself that I need to pick up some weights and rebuild my muscles after my walk, but usually don’t follow through. Thanks for sharing how that is helping you as that is inspiring me to begin! I am in 2 research studies, as well as about 13 of our family members at UChicago Med and Vanderbilt University Medical Center. Since your Mom also had PF, have you done genetic testing to see if/what might have caused this? Our family has a defect in the PARN gene and Short Telomere Syndrome that is directly connected to PF and why so many in our family have PF or have died from PF. I believe knowledge is power and if you know that your sister and children could have some defect that could cause them to develo0pe PF, it would be helpful to know so they can take the precautions of staying away from environments or medicines that could trigger PF.  I’m usually very positive and upbeat, but was just so upset by the way my friends treated me that I reached out for help and I’m glad I did because I have felt a lot of love and support from the people on this forum. I’m much better this week, but I think I’ll keep more to myself from now on to avoid this hurt again. May you be blessed in a special way this week!

    • #30203
      Charles Dean
      Participant

      Hi Lori. My name is Charles Dean 76 years old and Have IPF diagnosed !/25/2020. From my hospital room bed I saw a Dr. speaking to my wife and daughter and after a few minutes I saw my wife get very upset and crying; I knew that was not going to be good news for me.
      After consoling my wife The Dr. stepped just in side my room and I said ok what going on? his reply was you have Pulmonary Fibrous. I asked what amount of time I had; his reply was ” I’m not God, so I can’t say.” “It could be a week or a year.” He said some one one else would be talking to me and family as to my next course of action would be.
      I spent the next 16 days in the hospital In the Palliative Care Ward. I was very sick from an infection that brought me to the Hospital in the first place. I felt I was at death’s door and all the family called. I had already been in silent prayer with God and I knew I was saved through the blood of my lord Jesus Christ. Jesus is my savior and strength to accept and live each new day he gives me and family to live.
      I have been going down hill and each day I wonder will this be the last on. He has given me far more than I had expected and all the praise and glory to God. There have been a few moments of depression and sadness come over me but know this is not going to do me any good so I pray and and at some point in the day my depression is gone.
      There is no cookie cutter way of handing this kind of news. But God loves you and hears you. May God place hands on you and give you strength to trust in him. Your brother through Jesus. Charles

      • #30219
        Lori Kathryn Ward
        Participant

        Thank you, Charles for taking the time to reach out to me and tell me part of your story! I am blessed to know Jesus as my Lord and know that this is the cross I have to bare on my journey to meet Him in person and am usually very positive so it is good that we have people like you on this forum to pick us up and encourage us on the days we aren’t doing so well! I always suspected I would develop PF since my Dad and 2 sisters died from it and my other 2 sisters have it, but I am sure it was a TOTAL shock to you when you heard those words! I hope that you continue to find strength from God and support from your family and friends. Reach out to me if you need to share or vent! Praying you have better days ahead! God bless, Lori

    • #30234
      Diane Shaughnessy
      Participant

      I Was diagnosed in 2019,I live by myself and also get depressed there are no support groups around her that I can go to I wish we had a A place that we could share our experiences I have no idea what to expect so far I need oxygen while I’m walking or if I’m moving around in the house luckily I don’t need it when it rest. Hopefully will be a way where we can all share our thoughts
      Thanks Diane ShUghnessy

      • #30237
        Christie
        Moderator

        Hi Diane @flowers123, Sorry to hear that you are feeling isolated. Luckily, this forum is a great place to get support and share experiences, as you can see. Please check in with us often and let us know how you’re feeling–you aren’t alone! Additionally, there are really great support groups on facebook, and this is a great resource to find support groups in your area or online that offer video meetups: Find a Support Group | Pulmonary Fibrosis Foundation | Pulmonary Fibrosis Foundation

Viewing 10 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account