The Challenges in Sharing My Diagnosis

The Challenges in Sharing My Diagnosis

Just breathe, passionate help for the PF journey
Sometimes, it is so discouraging to have PF. … Okay, having PF is discouraging A LOT of the time. I had a hard experience this week, as I’ve had many times before. I bet you’ve had experiences, too.

Since my diagnosis with PF a little more than 3 years ago, I’ve shared my diagnosis with a lot of people. I’ve been involved in the lives of many people as a counselor, professor, author and an active member of my church – so there are a lot of people to tell.

Many people who knew me before I was diagnosed with PF naturally ask why I’m using supplemental oxygen and moving slowly. They ask because they care. I usually share that I have pulmonary fibrosis, which I developed as a rare side effect from my treatment for breast cancer. Those who ask always express sorrow that this has happened to me, which I really appreciate. Those who know someone with this diagnosis often let me know who that is, because they want to connect with me and let me know they understand.

What they say next is really hard

  • My father died from that disease.
  • Two of my cousins passed away from PF.
  • My grandmother recently died from pulmonary fibrosis.
  • My best friend’s father passed away from that disease.

And on it goes. They are very caring when they say these words. They want me to know they understand how serious it is, and what I’m dealing with. They share their own experience in a kind way, with the best motives. But…

It is really hard to have a disease where everyone who had it passed away

When I was diagnosed with breast cancer, many people encouraged me that their mom, sister or friend had it and beat it. It was encouraging to know that many people beat the disease and went on to live a full life. After the third time sharing about PF and getting this other response, I realized I wasn’t hearing encouraging stories about loved ones who beat it. Now, it’s true that for some patients there is the possibility of a lung transplant, which brings hope.

I’m not trying to be a bummer, but I wanted to share an experience I’ve had many times that is very hard. I’m guessing I’m not alone in this. I don’t focus on this reality, but do notice it when well-meaning friends tell me their experience of knowing someone who also had PF.

How about you?

I would love to hear from you in the comments below. Have you had this happen? What has it been like for you? How do you handle it?

We’re in this together, and we can benefit from our combined courage, experiences and support. Please share this post with anyone you think could benefit, or on social media.

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

44 comments

      • Don Dove says:

        My name is Don Dove and I too have been diagnosed with IPF. Oh I went through the crying stage, feeling sorry stage, and all the others that come with it. Then I turned to God and turned it over to him, and that helped 100 %. Of course I’ve been praying for a cure, and that’s all I know to do. I’m not really sure how long I’ve had IPF, but for the last year it’s been hard to get out of bed, all I want to do , is lay in bed because it feels better. I get tired so easily when I’m up and doing things. I was diagnosed around the second of July 2017 but like I said, I’ve been sick a lot longer than that. 5 years ago, a lung doctor told me I had scarring on my lungs but it was nothing to worry about! Yea, right! I really stay home 95% of the time because of the way I feel. I’m on 2 liters of oxygen day and night and that does help. I also keep up with any and all IPF news I can in hopes of a cure. All I can say now is, maybe a cure will come to past in my life time. I’m 67 and have always been zoom zoom zoom until one day walking I got really short winded, and it was down hill from there. It’s a bad disease and I color it as it is.

        • Hi Don, Thanks so much for sharing your PF journey. It is amazing how much being out of breath changes so much in how active we are able to be. I too, rely on God and that makes a huge difference to me. Blessings to you as you negotiate living as full of a life as possible.

        • Karen says:

          I can totally relate to you. Almost the same here with doctors not disgnosing it for over 5 years. I also let God and let go. I’m trying to be a mentor to others as I battle this horrible disease. Maybe they can see Christ in me as I try not to be a ” Debbie downer” but stay uplifted through Christ. Many people also tell me about the ones in their life that have passed from IPF and I just tell them how sorry I am for them and then ask them to please pray for a cure for this disease. I’m not going to let this disease take away my happiness.

          • Thanks for sharing Karen. I have the same attitude as you. Trying to do all I can to be a positive impact on my family and other patients. My faith in God is a comfort and sustains me. Blessings to you.

  1. Joe Bailey says:

    Years ago when I was working, I was on the Fire Department at work. I worked for GM and the factory was very large…We had a good team. Anyway; every year we had to be tested in order to wear the SCBA. I used to blow a 14.5 through the tube. One year I couldn’t hit 7…It was like a light burnt out…My Dad died from pulmonary arrest due to scleroderma… I constantly told them to check me for that when I had a physical…they said I wasn’t a candidate for that…This year I had a pulmonary test and they said I may have PF due to Scleroderma…???? Does anyone really know what causes it…I’m still undergoing more tests. I have A-fib; but I’m really out of breathe AFTER I eat…I’ve lived with the A-fib for 30+ years; but the breathing after I eat(anything) puzzles me and apparently them(Dr.s) also…????

  2. Len Charette says:

    Hi, my name is Len. I have IPF. I was diagnosed about 6 yrs ago. At 1st nothing much changed. I noticed I had pain in my chest if I used too much energy too fast and my Dr had me coming into his office for a Pulmonary function test and I made another appointment for 6 mos down the road. Then I went to my primary Dr one day and was prepared to go to work but he told me no I was going to the ER. He said I was close to critical condition. I was diagnosed with pneumonia and have been on oxygen ever since. I started out on 2 liters and now I’m up to 9.5 liters. I’m in hospice now and looking at a very short future. There are things that can be done for some such as a lung transplant for younger folks ( I’m 70 ) and there is Pulmonary Rehab which I highly recommend and there are some medications, some which will help but some that won’t but the bottom line is that they might be able to put the brakes on for a while but it’s going to be the same destination.

    • robert o'brien says:

      I don’t know where you live Len but I too am 70 and about to finish testing to qualify for making the transplant list. Age is not the limiting criteria it once was. Overall physical condition is primary. Talk to you pulmo doc. See if this might fit you. Good luck.

    • Hi Len, Thanks so much for sharing your PF story with us. So sorry for your recent decline. I know too how PF can progress so abruptly. Thanks for the wisdom you shared from your experience. Sending you warm wishes and prayers

  3. Carolynn Fishleigh says:

    I have IPF- 4 years now. I’m still classified as moderate, have been on oxygen and OFEV for 6 months and am slower than I used to be, and need an afternoon nap most days but other than that ok. I’m ok because I have accepted that I have a chronic condition for which there is some help, but no solution that will cure it, at least not known right at this time, but there is always hope. I am 73 years old – old enough to have seen many friends get sick and pass away, not of this, but other conditions. That is the way it is. Nobody gets out of this life alive. I suppose I would be happier if I believed some kind of fantasy where we did, but nobody does, not ultimately. I am not depressed because I believe that a higher power has been guiding me all my life, through the good times and the bad and that source of love is with me now whatever happens. I think everyone needs a source of faith to get them through. Just ask for that, believe you will get it, and you will find it. We are not alone – ever. Every week I volunteer to help others at the local Cancer Support Centre and at 2 different senior’s residences, leading gentle exercise classes and inspirational drumming groups. These people love that I do that and I love them. I suggest that you get involved with your community in some way, because you CAN help and you CAN make a difference and it will help you. Let’s make the best of whatever time we have left rather than spend that time mourning that it won’t be longer.

    • Hi Carolynn, Thank you so much for sharing your story, and your wonderful outlook. I too share a strong faith that sustains me. I love that you have a realistic output, balanced by being a blessing wherever you can. Beautiful!!!

  4. Anne Philiben says:

    When my Pulmonologist told me I had IPF (a disease I knew next to nothing about) he told me not to go home and get on the Internet. Which of course I did. But when I saw him the next time I told him what he should have told me was “don’t go and talk to anyone whose mother died of it.” Many people had frightening stories. I’m almost passed the 3-5 years from diagnosis and still in fairly good shape. I do need 02 continuous flow…not on demand and only during activity.
    I did find the progression of the disease slowed after I had a Nissen’s Fundoplication. Apparently I aspirated stomach acid in my sleep.

    • Donald Turner says:

      Anne:

      I was diagnosed Aug. 2016 but was told I had the disease a long time and should have been referred to a pulmonologist. Long story short, I’ve been taking Ofev since January and I guess it’s helping. I still use 6L of oxygen when active and that’s most of the time. My faith in God and his goodnesss sustains me and I agree with Carolyn, we must make the best of each day and be a testament to others, always encouraging one another.

      • Anne Philiben says:

        You are probably like many of us. I kept telling people I didn’t have COPD because I didn’t have a productive cough, inhalers had absolutely no effect and I always laughingly added I hadn’t lost any weight. When I was diagnosed I was too old for a transplant. We have to get the word out to health practitioners that IPF is a totally different disease.

    • Hi Anne…you are so right. It’s good to stay off the internet…I’ve found that most people share their very difficult experiences online. So glad you’re doing well. Great to hear from you.

  5. Jeff says:

    I guess what I find the hardest after telling someone is that every time they see you afterwards, they look at with you with those poor you eyes for lack of a better term. The first thing they say is how you doing, are you hanging in there. I know it’s out of concern but it is what it is. Five minutes before I told them I was treated like a person now I’m treated as someone to pity. I DON’T LIKE IT, I know I will have to get used to it but I still won’t like it.

  6. Brenda Tobin says:

    Hi to all and all the best……
    The worst thing I find is that I try to keep up beat and not take my condition too serious, but I find the people around me get way more upset than I do. If I can’t change my destination, I am not going to spend the days I have left worrying about it too much. I have IPF and was diagnosed in March 2016. I went through all the why ME’s and the tears and feeling sorry for my self and the anger at the fact that it took them so long to find out what I had, a lung biopsy is what needs to be done sooner rather than wait 3 to 4 years of turning up and doing function tests, maybe if it is caught a little earlier than the outcome may be different.My life is very different now , not being able to go out and the fight to constantly keep my weight down when medication is doing the opposite. I try to laugh at least once a day and sometimes I don’t even have the energy to do that. But still I am here and I can enjoy my grandchildren’s laughter and that is what matters most .The worst thing that people can say to me is “Oh well! At least you had a good innings.” I know they don’t mean it the way it comes out but 63 is not a good innings. I really don’t like this saying and I do laugh along with the ones that say it , but it hurts to think of my life as an innings. WoW…. Oh Dear I do sound like a bit of a winger now but it’s just how it comes out .I’m new to sharing and I’m sure I will get better. all the best

    • Wendy Corley says:

      Brenda, I enjoyed reading what you had to say. Almost 3 years ago, 11-11-14, I was diagnosed with PF after visiting a doctor with what I thought was pneumonia. I had my lung biopsy 2 weeks later. Sent to Mayo Scottsdale lab. I was then diagnosed with IPF with no chance it was caused by an autoimmune disease. I did really well under the constant monitoring of my Pulmonologist and Rheumatologist. God Bless them both. I am now considered “end stage”. A label, I choose to think. I am 67 years old and listed for transplant at Mayo Jacksonville. The age limit has changed so very much in the past years. They will transplant into the mid 70’s if the stars are aligned. Early detection is so important. No number of “innings” with grandchildren is enough.

    • Brenda, I loved your comment…you did great 🙂 I approach this disease the way you do too…let myself feel the emotions at being diagnosed, and then making he best of it. I try to enjoy all the good that is there. I’m so glad that you are enjoying your sweet granddaughter. Keep laughing and enjoying life!

  7. J says:

    I was diagnosed with idiopathic pulmonary fibrosis three weeks ago but 10 years ago I was diagnosed with copd.I could handle living with copd. But ipf. Scares the hell out of me I have an 8year old I want to live for he’s my life.my feet swell sitting or standing.I’m getting dizzy and it suxs.they say they don’t know what causes it but I’m wondering if its chemicals in our food from them spraying them in fields.not sure of anything. But I’m gona live like there’s no tomorrow. I’m not gona let this disease beat me .gl and I wish the best for everyone.

    • Hi J, Thanks for sharing your story. Even with the swelled feel and dizzyness, I can hear you living your life to the fullest and enjoying your wonderful son! He’s blessed to have you as his Mom.

  8. Katherine Broach says:

    Once you tell people you have a terminal lung disease, every time they see you they are astonished how great you look. The key to looking great (their words) is having had a long afternoon (no longer optional) nap before greeting the world. Works for me and at age 79, it’s a real ego booster. More folks should try it! Yes, God is in the details, front and center.

    • Hi Katherine…love your comment. People often tell me how good I look, too. I guess it’s better than feeling bad, and looking bad too! Yes…God is in the details, so grateful for that 🙂

  9. Bob Carlson says:

    I was told I had IPF two years ago, I am 76. I had recognized my shortness of breath many years ago and requested pulmonary testing on numerous occasions but I was never given definitive causes until a couple of years ago. Other than immediate family, I only tell people, if they ask, that I have a pulmonary problem resulting in shortness of breath and oxygen helps. I don’t mind talking about my condition but I don’t bring it up. If people ask how am I doing, I say fine. I remain grateful because I am more fortunate than so many others.

    • H Bob, thanks for sharing with us. Sounds like you have a good way of sharing about your diagnosis. You are right, even with the hardships of having PF, there are those less fortunate. Thanks for your perspective.

  10. Jim Hoseason says:

    I am 81years of age and was diagnosed in 2006 with IPF. The progression rate is fairly slow but in the past two years I have had to resort to ambulatory oxygen to help me cope with everyday mild to moderate physical activity. I am using Perfinidone (Esbriet) and this drug is most beneficial. I use the technique of distraction to keep my mind from dwelling on my condition. This technique involves a weekly art group, painting in watercolour, and getting out and about almost every day. IPF, I believe, is a self-inflicted condition and is the penalty for smoking and inhaling fine oak dust while sawing barrel staves for fuel. My weekly attendance at a Rehab class is great and there are clear benefits both psychologically and physically. I have also just completed my autobiography and this nostalgic trip down memory lane has been a most wonderful and absorbing adventure. I have also just published a children’s story book for my grandchildren. My simple philosophy is this – don’t worry about yesterday – it’s gone. Don’t worry about tomorrow – it’s not hear yet – just live for today and do as much as you can to keep your mind positively active and thank God for every new day.
    Always look on the bright side of life!
    Love to all fellow sufferers and their families.
    Jim Hoseason

    • Jeanne says:

      All of your comments have been very bittersweet. I hear you speak of God and know I have moved away from God. It’s just too much to bear. You see I also have Fibromyalgia which is so painful. I’ve had it for twenty some years now. When they told me I have IPF I think the threw in the towel. Suicide is not, and never will be an option for me, but I’m ready to go. Will you pray for me. Any words of wisdom would be appreciated. I just lie in bed waiting …

      • Hi Jeanne, thank you so much for reaching out. I know it is so very hard to reconcile all we’ve been through. Even though you’ve moved away from God, He understands and has not moved away from you. Just reach a little out to Him. I am praying for you that God’s love and hope will touch you in unexpected ways, and that your pain will be lessened. So glad you shared with us, and hope you will again.

    • Jim,
      Thanks so much for sharing. I love how you are embracing life, and living it to the fullest. I can imagine you doing all those wonderful activities. My favorite is your philosophy, “Don’t worry about yesterday – it’s gone. Don’t worry about tomorrow – it’s not hear yet – just live for today and do as much as you can to keep your mind positively active and thank God for every new day.” Amen!

  11. You’re right. It’s hard having a disease where you know everybody dies until you realize that everyone who doesn’t have the disease is every bit as certain to die too. So you make the most of what you have and that’s enough.

    • Hi Forrest, You’re right, it’s great to make the most of what we have. I was diagnosed 3 years ago. It was especially hard to hear after first being diagnosed, but is easier now. Thanks for sharing

  12. Carolynn Fishleigh says:

    This comment is for Jeanne. Even if you feel you have abandoned God. He has not and never will abandon you. I know this because 40 years ago my only son developed drug resistant epilepsy, sometimes he had 30 grand mal convulsions a day. He died in a seizure after four years of this at the age of 6. I abandoned my perception of God after that. But the many experiences of life since then proved to me that what I now call The Universal Force of Love ( not the benevolent old man in the sky which I used to think of as God) was with me and guided me every minute of my life after that. I can’t write my life story here, but I can confidently say that even though I know I will die of IPF within the next few years, unless they come up with a cure, I am not afraid and I believe in a life after death that is beautiful. I will pray for you Jeanne, especially that the Knowing that I have found will also find you and comfort you. I know it is there. Ask for it, then look for it. It is like a miracle when you recognize it. I wish that for you.

  13. Jacqueline D'ABBRACCIO says:

    To you all… I pray for you all, I pray every day that someone will find a cure for this horrible disease! Live life to the fullest…don’t miss out on anything…to all stay strong! Sending all my prayers your way!🙏

  14. Larry Elsey says:

    I was diagnosed wit IPF in 1987 and received a bilateral lung transplant at UT Southwestern on 10/7/05. It really disturbs me to read your comments. To some I would say you need to see another doctor. It seems to me you are getting bad advice. Perhaps I shouldn’t make that comment without knowing your situation but it is so important to have a doctor that is an expert in the diagnosis and treatment of PF. In Dallas, we have two hospitals that are excellent, UT Southwestern and Baylor Scott White where I go. It is so very important to keep a positive attitude. Please, please make every effort to be positive. It is not easy but very important! Don’t let the comments of others affect you.

    • Hi Larry, Thanks so much for your comment. So glad you were able to get treatment at a center of excellence and get a transplant! Unfortunately, a lot of patients are unable to because of their location, finances or personal health history. PF and it’s progression, is so different for each person. I agree with trying to be as positive as possible…AND…I also think it is useful to be honest with the emotions that go with such a serious diagnosis. For me personally, allowing myself to have the emotions and grieve, then helps me be positive and focus on all the life that is left to live. Appreciate you sharing with us

  15. Vivica E says:

    Hello
    I was diagnosed in 2014 before then no doctor told me I had PF. Most people do not know what PF is. I do not look like I am sick unless I have my portable oxygen tank with me. It is hard to explain this disease I am able to travel about but I am slowing down because of the shortness of breath. I have been turned down for a lung transplant because I am 72 years old will acid reflux and weak muscles in my throat that cause a swallowing problem. I stay active as possible and trying to keep my faith and a positive attitude which helps greatly. I wish there was a cure for this disease or better treatment that would help also. Good luck and breathe well to everyone with this illness. Hugs💜

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