The Good, Bad, and Ugly Truths of Living with Pulmonary Fibrosis

The Good, Bad, and Ugly Truths of Living with Pulmonary Fibrosis

younger than 30

It’s true what they say about life being unpredictable, and those living with a chronic illness know this better than anyone. Since my diagnosis of idiopathic pulmonary fibrosis (IPF) nearly three years ago, I have faced many uncertain times. And though I’m aware of the fickle nature of this life-threatening lung disease, some days it still shakes me to my core.

I consider myself lucky to be surrounded by amazing people in the PF community. Each person contributes to my life in a positive way, whether it is face to face via support groups, through the Pulmonary Fibrosis News Forums, or by email with friends I’ve met on this journey.

Being part of such a unique community brings heartache with it, too, as others go through tough times with their disease and sometimes even die from their illness. Our lung disease community has been plagued with difficult news recently as some of our strongest advocates have faced severe health challenges.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Join today!

I have been thinking a lot about these friends. Some people wonder why I continue to be part of these online communities and worry that the stories will make me fearful of my future. I was recently asked this question as I anxiously awaited news about a friend whose transplant didn’t go the way we had hoped. I pondered for a while, and my answer was simple: There are good, bad, and ugly aspects of living with IPF, but the good that my online support community brings me far exceeds the other two.

But how could any good come from living with a life-threatening lung disease? Before experiencing it firsthand, I probably would have wondered about this too. However, many positive things have come from my IPF diagnosis, and when times are tough, it’s something to hold on to.

Following are the good, bad, and ugly truths of living with IPF. My goal for 2019 is to focus on the good.

The good

  • Meeting new friends: I’ve met many people on my chronic illness journey that I would not have otherwise connected with — and for this I am thankful.
  • A different perspective: This may sound clichéd, but living with a chronic illness forces you to look at the world a little differently. I appreciate certain things now that I would never have given a thought to before my IPF diagnosis — and that is a gift.
  • Letting go of guilt: We’re often conditioned to feel guilty if we say no to something, don’t support a friend in a new venture, or opt out of a social gathering. Since being diagnosed with IPF and learning to prioritize my needs, I no longer feel guilty about these things and letting go of the guilt has been incredibly liberating. Everyone should live this way.

The bad

  • Losing your independence: This has been one of the hardest things I’ve had to accept since my IPF diagnosis. It is difficult to admit that there are things I can no longer do.
  • Seeing friends endure tough times: Unfortunately, the harsh reality of living with a chronic illness is that people you grow to know and love go through hardships and die from their disease. This seems to come in waves, where many friends are experiencing difficulties or dying at the same time. This is the worst part of knowing others who are living with the same illness you have.

The ugly

  • Losing friends: Unfortunately, some people don’t know how to cope with news of a chronic illness and choose to walk away from your friendship. This ugly truth of what it’s like to have IPF can be emotionally damaging for patients.
  • Medication side effects: An ugly truth of any chronic illness is that medications make us better, but rarely do so without causing unpleasant side effects. These effects can be short-term or permanent, and force us to weigh up the pros and cons of taking potentially life-saving medications.

What are some of the good, bad, and ugly truths or experiences you’ve faced since being diagnosed with IPF/PF?

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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.

14 comments

  1. Hello Charlene I have been reading some of you info on the good and bad of IPF I was diagnosed with this in Oct. of 2011 I know that there are good days and bad days I have had 4 other Pulmonary Drs. before I found one that was only pulmonary and an alergist. Heis the best thing that happened to me and gives me a reason to keep on living healthy. I do believe that at times the human can and will cure its self and to have faith.I have been on & off o2 for sometime I try to control my own breathing and know my own body. Sorry for all the TYPEOS

    • Charlene Marshall says:

      Hi Chic,

      Thanks so much for reading my columns and getting in touch via the comments. Glad you’re finding some of the information in this recent post helpful, although sorry to hear you’re also living with IPF. I am really glad you’re comfortable with this pulmonologist, that is so important to our care, isn’t it? Good for you for trying to live healthy and knowing your body’s needs, that is really important in our ability to manage the day-to-day with this disease, I agree. So nice to hear from you, not too worry about any typeos. Hope you continue to do well!

      Warm regards,
      Charlene.

  2. Marilyn says:

    I have IPF, I had a left lung transplant 4/5/2010….lung after almost 9yrs is doing fine but side affects of drugs get worse as time goes on. I was recently diagnosed with bladder cancer, which has to be removed along with my uterus. Because of transplant and new surgery there could be many complications due to anesthesia and my anti rejection meds, along with kidney disease because of drugs. I am hopeful that the combined doctors at the UMN can work together and make this surgery a success. Never give up and stay positive. God bless you all waiting🙏🏼🙏🏼🙏🏼

    • Charlene Marshall says:

      Hi Marilyn,

      Thank you so much for reading my columns and getting in touch via the comments, especially with sharing your story! Congratulations on your 2010 transplant, that is really great news that you’ve done so well for 9 years, even though I imagine the side effects build up. Sending much knowledge and skill to the doctors performing your upcoming surgery, and I do hope it all goes well for you. When is that taking place? Keeping positive for you, and thank you again for sharing your message and story.

      Warm regards,
      Charlene.

  3. Eve Clayton says:

    My consultant is very frustrated as I am ,that the drug Ofev which he tells me slows down Ipf and may give me a longer life expectancy can’t be given until I get worse.As he says if I have lung cancer many drugs would be available. My family and friends want me to get a prescription privately and we know this will be very expensive but are willing to make many sacrifices,but in this country this is also not allowed.what on earth is the answer!!! For people on the drug,how long extra does it extend life (on average) Any advice would be gratefully received

    • Charlene Marshall says:

      Hi Eve,

      Thanks so much for writing and getting in touch via the comments. So sorry you’re enduring this – I know the “not eligible for drugs that will help until we get sicker” balance is so hard. I’m enduring that right now as well, seems unfair doesn’t it? One thing that many members have shared on the PF forums is to get a second opinion about the anti-fibrotic drugs and when you need to start them. Some doctors say we have to wait until our lung function reaches a certain point, others start their PF patients on OFEV or Esbriet right away. Is there any chance you can get a second opinion? It’s hard to tell how well it works for each of us, as we’re all different so not sure it would be possible to get an answer on length of extending our life from personal experience. Probably some literature would be best on helping you understand this. I am on OFEV and do find it helpful, but my experience with it has been relatively positive and side-effect free, which I know isn’t the case for everyone. Not sure this helps at all?

      Take care and feel free to write anytime.
      Charlene.

      • Russ Wyckoff says:

        I was diagnosed two years ago and have IPF. I started on Ofev right away. After 18 months I
        made the decision to stop because of very strong side effects plus not getting favorable results. I have been able have better quality
        in life. I’ve had two exacerbations and rapid progression. At this point I still feel stopping the Ofev was the right decision for me.

        • Charlene Marshall says:

          Hi Russ,

          Thanks so much for reading my columns and for getting in touch with me via the comments. It sounds like your decision to stop OFEV was a good one for you, based on the unpleasant side effects. Do you feel that the OFEV was helpful in the 18 months you were taking the medication? Glad your quality of life has improved since stopping the medication, and I wish you a slow disease progression so you can continue enjoying the quality of life you do have. Take good care, feel free to write anytime.

          Warm regards,
          Charlene.

    • Charlene Marshall says:

      Hi Brenda,

      Thanks so much for reading my columns and getting in touch via the comments. I’m really glad you’re finding them helpful! It always means so much to me when I hear from others about my writing. So thankful to be in the position of writing for PF News.

      Take care,
      Charlene.

  4. Robert C, Whittaker says:

    Have you or anyone heard of Trebinase & Serrasolv 360 a dissolving enzyme that is supposed to improve breathing, caugh less, reduce mucus buildup, increase energy without side effects increase blood oxygen levels Three pills per day 45 min. before eating for 30 to 180 days. It is supposed to dissolve scar tissue &inflammation

    • Charlene Marshall says:

      Hi Robert,

      Thanks for connecting and reading my columns! I haven’t actually ever heard of these enzymes before. I’m not well-versed in knowledge of enzymes or different types of alternative therapies though, admittedly. Can I ask where you heard about these enzymes? It’s a really good question to ask of people in our forums, do you participate in them at all? I think I remember that you have posted before:) If not, they can be found here: https://pulmonaryfibrosisnews.com/forums/ … someone in there might be better able to answer your question about this enzyme for you.

      Cheers,
      Charlene.

  5. Denise says:

    I was recently diagnosed with IPF, I just turned 40 and I’m a single mom. I started OFEV 2 weeks ago and feel I’m getting worse. I’m so scared and there’s is no support group here for my disease. I’m from a very small town I travel 4 hours to see my pulmonologist. I work a full time job as a teacher I don’t want to have to quit doing what I do but I have been so sick this year.

    • Charlene Marshall says:

      Hi Denise,

      Thanks for reading my column, and contributing to the comments. So sorry to hear of your IPF diagnosis, it is such a difficult time when we’re first told about this disease. Sadly, I remember it well and it happened for me when I was 28. Give the Ofev some time to work and then see if it is slowing the progression of your disease down a bit. This helped me when I was able to hear from my doctor that the anti-fibrotic medication was helping a little bit. Have you joined our Pulmonary Fibrosis News forums yet? You can here, if interested: https://pulmonaryfibrosisnews.com/forums/ the people are incredibly helpful and supportive, it is a great community, although I wish none of us suffered from IPF. I often talk about the difficulty of working full-time with this disease, so feel free to reach out anytime. I understand that fear of yours implicitly! Connect anytime and know that you’re not alone.

      Warm regards,
      Charlene.

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