The Story of my Father’s IPF journey
I am not a PF patient, so I can’t answer questions from a personal level, however my father unfortunately passed away from IPF along with pulmonary hypertension in December of 2021. I recently searched his name in google and found some posts he had made here, so I felt that it might be helpful to share my families experience with IPF, and to answer any questions I can from those of you who are diagnosed or those of you who have family members dealing with this disease.
My Dad had kids late, me being his first child, at 41. We have a family history of heart disease and I remember this rearing it’s head fairly early in my life, with my dad having 5+ angioplasties in his mid 40s to mid 50s to clear blocked arteries. He was always in shape, ran 5+km every lunch hour, and was in general an active and slim person. He came from a family of heart problems, with his Dad passing away at age 53 of a heart attack. I bring this up only because I was used to having my father in the hospital sporadically through childhood. He always said that he never worried about those surgeries, as he felt he was walking in to get fixed and then came out feeling ready to go again.
In 2009, at the age of 63, my Dad was admitted to the hospital as he all of a sudden was having lightheadedness and shortness of breath. I remember him being very anxious and actually pretty emotional in the bed in the emergency room, compared to his other health complications. They took some x-rays and other tests, and came back that he had Pulmonary Fibrosis. They told him it was idiopathic since they didn’t think he had smoked enough of his life for it to have been caused by that, he had quit in his late 20s. I remember that the doctors wanted to do a lung biopsy to confirm, however my Mother being a nurse told my Dad it wasn’t worth it. She insisted the treatment was the same regardless of confirmation from a biopsy and the doctor ultimately admitted the same, so no need to risk the biopsy. They gave my Dad 2-3 years before this disease would likely take his life.
Fast forward a few days, and my Mom got a call from my Dad that he was ready to be picked up from the hospital and go home. She was pretty surprised considering where his blood/oxygen levels were at the evening before when she had left and went home. She arrived at the hospital and he was fully dressed sitting on the end of the bed and asking what took her so long.
My Dad came home, and lived with no further complications for 10 years. He continued to work out at the gym 3-5 times per week in the mornings. He continued to work, was very active around the house, and we moved on with life. Myself, I almost forgot about the diagnosis. With that said, my Dad was a very stubborn person, and we did start to notice him needing to stop for breaks while going for walks, or doing his usual puttering around the yard. This probably became apparent in 2017-18, although no admission of any issues from him.
In August of 2019, my Dad all of a sudden fell very ill at the family cabin. My Mom came out to him shaking in his recliner chair at about midnight (still too stubborn to have gone to her for help or admitted anything was wrong), and she called the ambulance. They arrived and took him to the hospital, and he actually arrived with a 59% blood oxygen level. Ultimately he spent about 2 weeks in the hospital and then again rebounded and left the hospital. He was walking laps around the hospital hallway with his levels at 95% and they let him come home.
In mid summer of 2020, he went and had some tests and was told he qualified for at-home oxygen. He started wearing the “puffer” style oxygen, where he would wear a little pack around his shoulder that would provide him with adequate oxygen. He also took further tests and qualified for Esbriet, which we were fortunate that Canadian health care covered fully. He started wearing the oxygen, somewhat sporadically, only when he was maybe going for a walk. He was pretty proud, and we’d often tell him he should just wear it all the time, but he was embarrassed by it. The Esbriet definitely caused some rather large appetite issues for him. He had to force himself to eat. He always enjoyed a glass of wine or 3, and he also pretty much stopped drinking.
Things stayed relatively the same, however he was wearing the oxygen more often. At some point, which I can’t peg a date, he got a machine installed at the house that provided more powerful oxygen while he slept. He had the oxygen lines running 50 feet into my childhood bedroom at night because the machine was so loud.
In October 2021, he celebrated his 75th birthday, I was 34. I took him to a restaurant for lunch. We sat there with no oxygen on, and had 5 or 6 glasses of wine together. What a great memory for me, we had some great food and conversation! When we left and walked a block to where my wife was picking us up. he had to stop 3 times for breath unfortunately.
About 2 weeks later, my Dad fell ill again. He was having some breathing issues and feeling lightheaded, and the family forced him to go to the hospital. During COVID, only two of our family was able to be designated for visits, and my Mom and myself were assigned. He was there for about 10 days, and then again regained strength to start walking around the loop of the hospital floor with BO levels in the 90s. However it seemed the “puffer” machine was no longer adequate, and they switched him to tanks of oxygen so he could get more.
He returned home for about 2 weeks with the tanks instead of the puffer. We had some Christmas parties with family early in December, and he joined us, had a great time for sure, but was not moving around much. On December 8th, I got a call from my Mom that he was not feeling well, and that she would like me to come up to the house to help her get him into the car to take him to the hospital. He had apparently tried to walk to the bathroom the night before and had a fall (in which he pissed himself while on the floor), but insisted he was fine afterwards. I arrived at the house 45 minutes later and I could tell my Mom was definitely in denial about his condition and I called the ambulance immediately. They arrived shortly afterwards and his OSAT was again the 50s. They took him in an ambulance in the middle of snowstorm to the hospital.
This time, again with COVID rules, the assignment was my Mom and sister for visits. I went 4 days without being able to go and see him. He called me and told me that the doctor told him that this was likely end of life, as he was on an optiflow machine. When lying in bed and resting, he was able to get his OSAT levels up to mid 90s, but ANY exertion would drop. Palliative care came in and said it was for sure end of life, and he likely had days, or potentially weeks to live.
We stayed by his side for several days, only going home to sleep. We had some great chats together, where he seemed to perk up and it felt like we were having a beer together as father and son. On December 16th, I arrived in the morning and the nurse came in and asked if my Dad needed anything, he looked and her and said “some scotch would be nice”. We all laughed.
Two hours later, we were all chatting and he felt tired and said he’d like to close his eyes (he said he felt bad because he wanted to spend as much time with us as he could). About 20 minutes later he started to say that he was feeling sick, feeling like he had the spins similar to back when he was in his 20s after drinking too much. He closed his eyes for about 10 minutes more and then opened his eyes, looked at me and said “Who is that Man?” and then recognized he was in the hospital room and said “Jesus, I’m losing it aren’t I?”. He closed his eyes, and he started doing the Cheynes-Stokes breaths and passed away within a few minutes.
That’s his story. Hopefully it maybe provides some comfort to those recently diagnosed that it is possible to live with the disease without regression for several years. Also, happy to answer any questions about my observations about the progression of things from my perspective.
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