Coping with Diagnosis Anniversaries

Coping with Diagnosis Anniversaries

younger than 30

April 7, 2016, is a date that will be etched in my memory for a very long time. It is the date of my idiopathic pulmonary fibrosis (IPF) diagnosis, which followed nine long months of fatigue, shortness of breath, and a dry cough that never seemed to subside.

Until that date, it never occurred to me that I could have a lung disease at the young age of 28, especially since I was active, otherwise healthy, and never smoked. It was a day that I learned about a new disease, one that would impact my life in many ways for the remaining years I had to live, with an average life expectancy is three to five years. That diagnosis was two years ago.

This morning, I wasn’t sure how to pass the day. I didn’t have any plans, especially since I have been fighting off yet another virus secondary to being immunocompromised from the medications I am on due to IPF. Whatever I chose to do, I knew I wanted to be gentle with myself and process any emotions. Now that the day is drawing to a close, I cannot say the day was productive, as I did not cross off any tasks from my to-do list. Nor was today emotional, or filled with thoughts about this day two years ago like I thought it would be. In a way, I barely felt anything today. And every time I tried to put into words what I was thinking, either on paper or via social media, I stopped and chose not to write anything.

Many times today, I skimmed Google Images to find a quote that would resonate with how I was feeling. I looked for quotes focusing on gratitude, on living life to the fullest, on looking ahead to the future, and on coping. None of the quotes stood out for me, and I erased what I wanted to post multiple times. Everything felt too clichéd.

I am grateful to have survived two years with this disease, and for the opportunities, friendships, and support that I have witnessed as a result of my diagnosis. Contrarily, I am not happy that I have IPF, and I am mad that it continually steals the lives of other patients I have come to love.

Within these past two years, I have come to value quality over quantity. This applies to many things, including friendships and time. I have learned to focus on making quality memories, as opposed to focusing on the amount of time that I likely will not get due to IPF. I don’t like that I have to do this. I want to live my life like other carefree young adults who have time on their side to experience the many great things this world has to offer.

I have learned to balance living in the moment with focusing on the future. I want to be realistic and intentional about the goals I choose for myself in the future, and where I invest my time and energy. That said, I never wanted to change my goals and aspirations from what they were pre-IPF to what they will have to be as my lungs continue to decline.

Lastly, I believe that I have learned to cope well with this disease and what it likely means in the next few years for me and those who love me. I am entitled to feel weepy and angry that I have to live with IPF and my peers do not. Most of the time, I am able to cope well and put on a brave face for those around me.

Today, though, as my two-year diagnosis date passes by and this fight to breathe continues, I admit that I did not have the most stoic day. I chose to stay in my pajamas and tune out most of the world by binge-watching my favorite television show. Those who know me would say that sitting still and watching TV is rare for me, but it was all I could muster up the energy to do. It was also a good distraction from thinking about the last couple of years, and how much IPF has changed my life.

My two-year diagnosis date has now almost come and gone, and I admit I didn’t feel the emotions associated with it that I thought I would have. Other IPF patients: How to do you cope with your diagnosis anniversaries?

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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.

25 comments

  1. Edwin L Roberson says:

    I was recently diagnosed with Interstitial Lung Disease. I am 88 years old and don’t know when this started. I have lived a long and fairly successful life – retired from the Air Force 48 years ago – managed factories for 14 years and ran my own shop for the past 20 years. It was in my shop where I made metal parts for foam cutting equipment. It was also there where I inhaled metal grinding dust (without wearing a mask) which I suspect caused my current condition. I have an appointment next week at which time the doctor will tell me I am in the 3 to 5 years span of life expectancy. I can only suggest that anyone working in an environment where dust or chemicals are present to wear a protective mask.

    • Charlene Marshall says:

      Hi Edwin,

      Thank you for reading my column and sharing your comments, although I am very sorry to hear of your recent ILD diagnosis! I couldn’t agree more with your advice regarding the proper health and safety equipment, such as masks, to protect the lungs. I am sad for people who don’t know this and unknowingly expose their lungs to hazardous materials, and try to share/advocate for lung health as often as possible since my diagnosis. Thank you for doing the same.

      Best wishes at your upcoming appointment Edwin.
      Take care,
      Charlene

  2. LARRY E GREGORY says:

    That diagnosis for me was three years ago. I was as you were shocked that this was happening to me, and I like you lived a healthy lifestyle.
    I have given up on some of the chores I used to to, but I still do all that I can. I have a garden and work in it and the flowers. Sometimes just sit out on the deck and enjoy the beauty around me.
    I guess I am fortunate (?) Ones. I am not on oxygen. The only meds. I take are low dose (5mg) of prednisone And one Zyrtec a day plus vitaminsize and supplements. I live one day at a time.
    My main concern is leaving my wife financially well off to live comfortably for the rest of her life and think she can.
    I don’the fear dying but I don’the want to suffer. This is one thing I pray about is dying well.
    I really enjoy life and honestly can say that I very seldom get depressed.
    I will be praying for you and will share any information I may get.
    I am trying to get into a clinical trial by Prometic life sciences of pbl-4050 starting mid year

    • Charlene Marshall says:

      Hi Larry,

      Thank you for reading my column and contributing your comments. A diagnosis of IPF is always hard when received, although it seems a bit more puzzling when, as you say, you’ve lived a healthy lifestyle like we have. I am sorry to hear of your diagnosis three years ago.

      I like your attitude about doing what you can, and appreciating all the beauty around us. I wish this lesson were true for everyone, but it feels especially important for those of us living with IPF. Thank you for sharing how well you are doing with your illness, even three years later – no oxygen, minimal meds, etc. I am confident this will give others hope!

      Goodluck with getting into the trial, and please report back to us if you do. I appreciate your prayers and sharing any interesting/helpful information that you come across.

      Warmly,
      Charlene.

      • Rose Bonanza says:

        Charlene, I am so sorry you have this dreadful disease at such a young age..I was diagnosed November 12 , 2012 , as of this writing I am not on oxygen.. I take 600 mg. NAC 3 Times a day, black Cumin seed oil, ginger, and turmeric.. all anti inflammatory and all over the counter.. I feel I’m doing well at this point considering I’m 78 yrs of age.. my motto is don’t fret, fight… be proactive it’s your life… wishing you the best.. God bless you and Jesus keep you well! Rose Bonanza

        • Charlene Marshall says:

          Hi Rose,

          Thank you so much for reading my columns and for your kind words, they are greatly appreciated and treasured. I am also sorry to hear of your diagnosis!

          Thank you for sharing some more natural options for dealing with inflammation. I’ll keep them in mind if the time comes that I need an anti-inflammatory. How did you find out about this mix of medications being anti-inflammatories? Glad to hear you are doing well and I sincerely hope this continues for you. Wishing you nothing but the very best!

          Warmly,
          Charlene.

  3. Roger Mills says:

    Hello Charlene,

    I just read your post and have great empathy for what you are enduring. I too was diagnosed in late April 2016. Some days are days where is just do what you did today. Except that i sleep or read or listen to music when i feel tired and mentally down. There is no rhyme or reason to why you and i find ourselves with this disease. Being a Christian, i know that God will bring good out of bad. A difference we have is age. I am 65. 28 is way too young to have to deal with something like this as you are doing. I can tell you that my wife died last June at age 50. My father and sister died in their 40s. So alot of this stuff doesn’t make much sense to me. I send hugs to you and want you to know that I along with others are in this with you. For what my comment is worth, know that i care about you. Thank you for all of your posts here. They are always inspiring in ways i can’t really describe. But they are. Thank you for your courage and for sharing how you feel.

    • Charlene Marshall says:

      Hi Roger,

      Thank you for reading my column and for offering such kind words. They truly mean a lot to me, and will stick with me for a very long time!

      I am sorry to hear of your diagnosis as well, and while I find so much comfort in connecting with others over my columns, I certainly wish it wasn’t over this disease. You are right about some good coming out of this bad – due to my diagnosis, I have been granted opportunities that I wouldn’t have otherwise been without IPF and I am grateful for that.

      I am very sorry to hear about the loss of your wife and other family members. I believe (a very close friend who has experienced so much hardship has taught me this) that we’ll understand the “why” or be able to make sense of it on the other side of this life. That right now, we can’t know it or understand all the answers but that we will someday.

      Thank you for offering your support, and your kind words on my column… I really appreciate it. Keep in touch with regards to how you are doing well, and know that you are welcome to connect anytime.

      Warmest regards and best wishes.
      Charlene.

  4. Denny Watkins says:

    Charlene,

    I too remember the dates when certain
    events and diagnosis occurred. April
    13,2016 is particularly memorable
    because it was the last time I
    played golf. I had numerous SOB events
    during the round. Although it’s not a
    diagnosis date, it’s the day I
    realized that something was seriously
    wrong. I saw a Dr. the next day and
    within the next 10 days was officially
    diagnosed with COPD, emphysema, PF
    and ILD. I have been on O2, 24/7, since April 23, 2016. At the time,
    I really didn’t know how my life was
    about to really change from the life
    I had known.

    • Charlene Marshall says:

      Hi Denny,

      Thanks as always for connecting with me both here and in the forums. It is always great to hear from you 🙂

      Isn’t it interesting how we remember significant dates, whether they are our diagnosis dates or something else that signifies something wasn’t right. The very first time I was told “something is wrong with your lungs” was December 14 2015, and this was after months of SOB episodes. Then on May 2nd 2017 I had a pretty major episode (exacerbation) that was really scary and I am experiencing some emotions with that date on the horizon as well. So sorry to hear about the date you have in mind; I remember losing the physical ability to do things I loved as well and it can be a date that is equally as painful as our diagnosis date.

      As always sending so many good wishes to you. Hang in there, we’re all in this together!

      Warmly,
      Charlene.

  5. Sue McCoy says:

    My prayers are with everyone I am 61 years old and have always been a very active person I was diagnosed 4/2/2018 I feel fine right now working,walking, etc I have a follow up CT in five months. I am so scared everything I have read about IPF is scary and sad my CT on 4/2 did not show any COPD or EMPHYSEMA thank you Jesus,but mild peripheral lung fibrosis and early interstitial pneumonia any advice I could get from others suffering would be appreciated

    • Charlene Marshall says:

      Hi Sue,

      Thank you for reading my column and sharing a bit about your experience. Prayers sent to you as well, and I am very sorry to hear of your diagnosis.

      https://www.pulmonaryfibrosisnews.com is a good place to find columns from patients (like myself) who write about our lives and living with IPF. Another great place to find advice, and connect with other patients is in our new forums, which you can sign up for here: https://pulmonaryfibrosisnews.com/forums/
      … there are many different topics started by patients here, and wonderful discussions taking place. You could do some reading or even post a topic/discussion/question that you’d like to learn more about and the members of the forum will help you if they can.

      Thinking of you,
      Charlene.

  6. Jerrie B says:

    Charlene, I must admit I do not cope well with anniversaries and holidays any more. I lost my husband of 44 yrs in May 2016 after an 8 yr battle w/cancer and was diagnosed with IPF in May 2017. I think the stress and focusing on my husband’s illness and not paying attention to my own symptoms definitely took its toll. It’s a frightening and horrible disease and one that most ppl aren’t even aware of; I know I had never heard of it, but now it is something that is constantly on one’s mind. I almost wish they had never “looked under the hood” so to speak and that I was still blissfully unaware! I hope your day has improved and that you found the strength to better cope with the anniversary. I have found your posts inspiring as well as educational. Thank you for sharing your journey.

  7. Donna Huber says:

    Charlene, I do not have PF but my father had it. His was not idiopathic and likely came from taking amiodarone for many years. I am working in drug research and always looking for new drugs to develop for IPF. While there has been progress, it has not been enough.

    You seem like a wonderful woman and it seems so unfair that IPF has selected you. But I hope your journey with IPF will lead to positive outcomes. I have been inspired by your post and I am sure many others have as well.

    • Charlene Marshall says:

      Hi Donna,

      Thanks for reading my columns and sharing a bit of your story with me. I am sorry to hear from your Dad’s diagnosis! I do agree regarding the drug development for the management of IPF. I am certainly so thankful for all the dedicated professionals working on our behalf as patients to try and eradicate this disease. I truly believe that someday we’ll get there and I just hope that I am around long enough to see it.

      Thank you for your kind words, I really appreciate them and thanks again for reading!

      Warm regards,
      Charlene.

  8. Terril McBride says:

    Hi Charlene. April 2015 was my diagnosis if IPF. I was,also a healthy living, nonsmoking athletic woman…but 64 years old. I had been having symptoms, as I look in retrospect, since I was in my early 30s, and even underwent open heart surgery in 2014, due to increasing sob…I did have heart issues, but the breathing problems were my only symptom, and persisted post surgery. I had a brother and father die from ipf, and another brother has been diagnosed. I’m lucky. Pulm rehab, esbriet and daily swimming have kept me stable. I am grateful for every day and every breath.. but the future is scary. I tried to talk with my husband about what my demise will likely be like, and he just can’t talk about it. I wish you well, and hope you survive for many years.

    • Charlene Marshall says:

      Hi Terril,

      Thank you for reading my column and sharing a bit of your story, although I am sorry to hear of your IPF diagnosis. It isn’t amazing (albeit difficult too) what we learn in retrospect after our diagnosis? Unfortunately I also was symptomatic awhile before my diagnosis was made. Sorry to hear about your heart issues, and although you had IPF I do hope that a surgery of that magnitude was beneficial for you.

      I also do pulmonary rehab, take an anti-fibrotic medication and try to do as much gentle exercise as I can. May you also live a long life Terril, best wishes to you!

      Warm regards,
      Charlene.

  9. Dennis Gentry says:

    Hello Charlene,
    I have followed the Pulmonary Fibrosis Newsletter as well as others like it for many years. It makes me sad when I read about young people, such as yourself, who receive this diagnosis. My IPF journey began in 2004 after a routine x-ray done during my yearly physical led to many follow up appointments at various Pulmonary offices.
    My diagnosis became “official” the day after memorial day when I had an open lung biopsy done due to varying opinions by several doctors as to what the problem was. I received the news two days after my surgery that I was a “doomed man” (I was 56 at the time)and told I had 3-5 years. My condition “stabilized” more or less for a couple years with episodes where it declined dramatically. I was on oxygen by 2008 but continued to work as a staff member on our senior management team. 2010 saw dramatic changes taking place and by the summer of 2011 I was put on a transplant list. I received a single lung (by God’s grace) in September on Labor Day 2011. I have been doing OK since then but still carry a lung that continues to be attacked by IPF (the one not removed).
    My message for all readers is to never give up, never give in. I think my keeping a regular schedule each day and staying as active as possible, along with prayers, kept me in shape for the surgery.
    I understand the fear and anxiety I hear from others as I had this everyday also. I pray for each of you for peace and healing.

    • Charlene Marshall says:

      Hi Dennis,

      Thank you so much for sharing a bit of your story with me, you have given me great hope that I can live a life much longer than the expected 3-5 years since diagnosis. Even to go from 2004 to 2011 before lung transplantation is very inspiring, good for you! I am so thrilled that you had your transplant and hope your breathing is easier. I will pray that the fibrosis in the unhealthy lung does not shift to your new gift of life. If given the opportunity, would you be transplanted again? I know lots of people say they would endure a second transplant, and some who say they don’t think they would due to the recovery it took from a surgery of that magnitude.

      I will carry your inspiring story, and message of hope with me and will remember to never give up, never give in. Thank you again for sharing and taking the time to write me. It is greatly appreciated.

      Warm regards,
      Charlene.

  10. Kathy says:

    Diagnosed with IPF 3/9/18 and started Esbriet 4/16/18, I have no anniversaries as yet. Hoping to have a long life, but only God knows our end. I believe this site offers the support needed by us. I count my blessings that I have had a long, healthy life, and only wish I had appreciated those years more. I am still dealing with the shock of the diagnosis and hope I will be here to celebrate many anniversaries, with minimal lung problems.

    • Charlene Marshall says:

      Hi Kathy,

      I am very sorry to hear of your recent IPF diagnosis, although I am glad that you were given the opportunity to start an anti-fibrotic medication so quickly. How are you tolerating the Esbriet so far? We have had wonderful conversations from others on this medications in our forums, which can be found here: https://pulmonaryfibrosisnews.com/forums/. Many forum members were sharing some tips and tricks to help tolerate Esbriet, especially as the dosage increased.

      Please feel free to reach out to us any time for support, we’re all in this together and will happily help if we can. I also hope you will have many future anniversaries to celebrate with a long life ahead of you. Wishing you the very best!
      Warm regards,
      Charlene.

  11. Katie Broach says:

    In reading tonight how the IPF diagnosis affected the lifestyles of its patients, I recognize as I approach 80 that my lifestyle changed greatly long before my IPF diagnosis 5 years ago. I’m not on any of the IPF drugs or oxygen, having remained on the well spectrum. In my 50’s, arthritis made walking any distance difficult separate from being SOB. Soon spinal stenosis pain set in, aggravated by a fall that broke three bones in the lumber area of my back. Learning that lung disease can sometimes lead to heart disease, my current concern is AFib and being on blood thinners which led to a recent brain bleed. I’ve decided when you are fortunate to live this long, you have an abundance of issues. The AFib directly began after a round of radiation for a squamous cell skin cancer. I have always been proactive with my health care but too often I’ve found treatment for one thing leads to a new health issue. My heart goes out to the young people with this disease. The fatigue is relentless and I thank God for retirement. The encouraging thing I have to offer is that despite the high dry cough long before i was diagnosed five years ago, I have outlived the cough and others may as well with any luck at all. I am in a position to pace myself each day and do as much or as little as I’m able. Meal prep is my hardest task. I find it so difficult and painful that it is easy to simply settle for another sandwich and piece of fruit. I enjoy doing my own grocery shopping with the mobile cart and my errands although the following day may be spent mostly in bed. I do have family close who check almost daily and will run errands for me especially in the winter. I just received word, however, that I will lose my helper who comes 2 hrs/week and has been a God-send to me. Because such help will cease to be funded as of July 1, my cost will go from about $6/hour to $38.50 an hour. Because I live in low income senior housing, our apartments have a laundromat down a long hallway heavy with second hand smoke, laundry will become my biggest issue. My helper has saved me from assisted living since my diagnosis. If I were ever to pay $38.50/hr., I would want it to go to my helper who gets only $10, and not to an agency of sorts. Today I learned many seniors are affected by this upcoming change here in Dallas County, Iowa. To date I have only received a phone call. When I receive the official letter, I plan to take it directly to our local newspaper. Fortunately, my only losses in the February brain bleed were my patience and my FILTER for such issues as funds diverted from the disabled and from seniors.

    • Charlene Marshall says:

      Hi Katie,

      Thank you so much for reading my column and contributing to these comments. I am sorry to hear of your own diagnosis, and that you suspect the impact has been longer than your diagnosis. Your sharing this has inspired me though, knowing that your diagnosis was 5 years ago and to learn that you are still not using oxygen or taking any anti-fibrotic medications. Please know that if nothing else, your story has given me a great deal of hope for my own prognosis!

      I hope your health issues are manageable for a long time yet to come, and I am so sorry to hear of your fall, skin cancer and spinal stenosis. You are very strong! What a terrible situation you are going to have to navigate when it comes down to the cost if increasing the rate of pay for your assistance. I am so sorry that anyone has to deal with this, especially seniors. Hang in there and wishing you the very best. Thank you again for taking time to read and respond to my columns.

      Warm regards,
      Charlene.

      • Mita says:

        Dear Charlene. Read your inspiring column. I thought I was young at 50 when was diagnosed with interstitial lung disease in 2009 But you are like a daughter. my daughter is your age. My Report now shows as Pulmonary Fibrosing. my recent test was not good and I am doing my best to be positive and eating well etc but back of my mind, so angry with this horrible disease and sometimes scared. Reading your column gives me perspective of life. I often think of the future,but I try to focus on present and take it from day to day. I wish you best and god bless

        • Charlene Marshall says:

          Hi Mita,

          Thank you so much for reading my column and for sharing such kind words… I will treasure them for a long time!
          Being diagnosed with an interstitial lung disease (ILD) at any age stinks, but I agree at 50 like you or 28 like me, it seems very young and unfair, doesn’t it? I think it is important to live as you are in terms of focusing on the present and taking it day by day, kudos to you because I know this is definitely easier said than done.

          I wish you nothing but the very best as well Mita.
          Take care,
          Charlene.

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