Following My Diagnosis, Negative Thoughts Consumed Me

Following My Diagnosis, Negative Thoughts Consumed Me

Even before I received my official diagnosis of idiopathic pulmonary fibrosis (IPF), the thought of death consumed me. I had trouble sleeping. I would lie awake at night for several hours tossing and turning before finally falling asleep. The restlessness was a symptom of the IPF; the thoughts of death were a symptom of my anxiety.

I would place myself in different scenarios of dying. It seemed that each was worse than the last. The thoughts took over when I was alone. Sometimes they lasted an hour or so, and sometimes they would consume me for long periods at a time.

I never explained this to anyone, but sometimes I would make comments regarding death. My wife, family, and friends never liked it. They would usually reply, “You are too ornery to die yet.” In some aspect, though, it was my way of coping and communicating how I felt.

My first pre-transplant evaluation put me into an emotional state I don’t display in public. My wife, sister, and I were in my doctor’s office, and I inquired about how death looks for an IPF patient. He told me everything I wanted to hear and more. I lost it in the office. The looks on my wife’s and sister’s faces were equally disturbing. Before then, I don’t think my sister had an inkling of what this disease is capable of doing.

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My doctor, Wayne Tsuang, kept assuring me I would receive a transplant and saying that I should trust him. I did trust him. He was even more optimistic because of my rare blood type. That was something I could not wrap my head around.

I received the call 24 hours before I would have the surgery. During that time, I wrote a note to my wife detailing my wishes for my burial and how to request the monies she would be owed because of my death. After my funeral, I wanted her to have a party and play my music playlists that she so often complains about.

What was really bothering me at that point was that I wouldn’t be there for the party. I guess this is called fear of missing out (FOMO). Those were probably the only coherent thoughts running through my head for those 24 hours. Death was, of course, consuming me.

When I was finally settled into the Cleveland Clinic’s ICU, I was allowed visitors. When asked if I would like a priest to visit, I requested a Polish priest. A Southern Baptist pastor arrived and asked if it was OK to pray for me. I told him, “I take any and all prayers!” He spoke his invocation in a Southern drawl, which was very soothing to hear. I began to feel comfortable and at peace with the upcoming surgery.

The anesthesiologist came in next and placed the arterial line in my wrist. It was not until then that I felt I was mentally ready for the surgery. He was a younger guy who was into sports, and his bedside manner made me feel at ease. He was such a positive and motivating person, I knew I would be in good hands with him in there. This was the first time in months that I didn’t have a negative thought.

The surgery and recovery went well. I still have thoughts about death, but they are fewer and farther between. They usually come when I don’t feel well. Sometimes, I will read an alarming article that pertains to me, and I’ll immediately place myself into a morbid mental state. At these times, I usually talk to a medical professional. They reassure me, and the negative thoughts go away.

Overall, I feel I am in a good place mentally and physically. I still have occasional thoughts about FOMO. I said this to a friend the other day, after attending a funeral for another friend’s mother. He looked at me as if I were crazy, but it is what it is.

I am curious to hear your thoughts. Can any of you relate to my experiences? Please share in the comments below. 

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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.

12 comments

  1. I am so sorry you went through that. I have PF related to Rheumatoid Disease and have several other co morbidities, and although I am 58 I am not eligible for a transplant. I am at peace with this. I worked in palliative care in Canada for many years as a Nursing Director and am very familiar with how peaceful and comfortable a good death is and how very possible it is. A death from PF can be every bit as good as a death from other causes with the right hospice/palliative care. There is still such a lack of knowledge among health providers, including physicians around Hospice/PC that it frustrates me to no end, because it denies people the end of life care they and their families deserve. No one need be gasping for air, in pain, or in emotional distress with the PC/ Hospice resources available. As well PC/Hospice provides and interdisciplinary team that addresses the physical, emotional and spiritual needs of the patient and family so in a situation like yours you would have had someone to speak with about your fears. And contrary to what professionals may say it is never to early to involve palliative care for these reasons or to manage symptoms including shortness of breath. I don’t k ow if I addressed your issues but I feel it’s important for people to have this information. All the best to everyone!

    • Mark Koziol says:

      Hello Lorena, let me thank you for reading and commenting on the column. It takes a special person like yourself to work in palliative care. I thank you for your service and the knowledge you have provided to others. I myself was not informed of this type of care during my period of going through the transplant process. It was after transplant, unfortunately I heard doctors and nurses speaking about a patient and his next steps. I have since looked up the specifics and I hope more people do after reading your comments. You provide a good learning base for patients/caregivers to start from. Thank you Mark

    • Mark Koziol says:

      Hello John, thank you for reading and commenting. I have seen that acronym but I never knew what it was until I looked it up. I am just like you, it resonates with me as well. Thank You Mark

  2. I totally agree with Lorena. I will use palliative care and hospice care when the time comes. I also depend on my faith to see me through this IPF knowing I will be in a better place when this is all over. God Bless all

    • Mark Koziol says:

      Hello JoAnn, thank you for commenting. Your engagement in discussion is greatly appreciated. Please take care and best wishes. Mark

    • Mark Koziol says:

      Hello Jodi, thank you for reading and commenting on my column. I am sorry you have to go through this. Hopefully you have someone to talk to. Please take care. Mark

  3. Rebecca says:

    While I cannot personally relate to your experience, I appreciate your honest, real and “raw” thoughts expressed in this column. It takes a strong person to put yourself out there like that. May your words be a blessing to those who need to hear them. You continue to make the best of a daunting diagnosis and remind us all to live each day to the fullest!

    • Mark Koziol says:

      Hello Rebecca, thank you for reading and commenting on my column. Thank you also for kind words and encouragement. Yes, I believe I have been given a second chance and intend to live life to the fullest. Thank you for being part of my support system, your caring and empathy will never be forgotten. Mark

  4. Dave Lindahl says:

    Age is arbitrary on my opinion for lung transplant I’m 80 and truly believe I could survive at least a single lung transplant- I guess the field of pulmonolgy doesn’t agree – wish that they would use me as an example – thanks for listening

    • Mark Koziol says:

      Hello Dave, I feel you are correct regarding the arbitrary age of lung transplant candidate. I personally know a gentleman who received his double lung transplant at the age of 73. He received it at the Cleveland Clinic. The oldest person I have heard of receiving a transplant is 80 years old and also at the clinic. I will post the link for you Dave. The Cleveland Clinic is a high risk center for lung transplants. It is also a high volume center. I can tell you this I have received nothing but excellent care at the clinic. The doctor who is the head of lung transplant center at the clinic is my doctor. She is wonderful. Dr. Marie Budev. Dave, best wishes and keep in contact. Mark
      https://my.clevelandclinic.org/patient-stories/116-cleveland-clinics-oldest-lung-transplant-patient-now-breathing-easy

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