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The Story of my Father’s IPF journey
Hi everybody,
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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5 Replies
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Thank you so very much for sharing the story of your father’s journey. It gives me great hope and comfort. I live in Australia and was diagnosed with IPF 5.5 years ago. Like your dad, I too have not declined significantly in that time and I still do not need oxygen. I’m very happy with my current condition particularly as I can not tolerate either of the drugs available to keep this condition in check. They both seriously effect my liver. If I get to live an active life for as long as your dad I’ll be a very happy lady.
Thank you once again for your story of hope and resilience.
Kerry
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Good afternoon Grady,
My name is Randy and read your story with great interest as I am on my 3rd year of IPF. I have been on oxygen all this time, 24/7. I left the hospital after a biopsy to make a determination on what I had. I had lost 1 lung already and the other isn’t in great shape.The liters have slowly increased over the past year. I used to get by with 3-4 on the home unit. Going out was a pain with the tanks, so bought a Inogen 5 that supposedly goes to 6, which I found out doesn’t really. So back to tank now. I am now up to 8 on my home unit, only goes to 10. On the tanks, I can get by with 5, but it goes fast.
My question, you were with your dad as he died. How did he go? We have all heard that it is like smothering. Can you tell us? There are alot of us who would be grateful.
Thank-you for you tie in this matter. Thank-you Randall Thornton
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Hi Randy,
I honestly don’t think it appeared like he was smothering at all.
My Dad was very interested (almost obsessed) with his OSAT numbers. When the palliative care Doctor confirmed it was end of life, and said that it could be days or weeks (it was ultimately only a few days), he suggested that my Dad turn off the monitor and remove thee sensor from his finger as it didn’t really matter anymore and might only cause him anxiety. My Dad refused, I think he right up to the end was hoping that he could bounce back.
So we could consistently see his numbers. When he was laying in bed, even in the hour before he passed, his levels were still in the low 90s, or high 80s, when he was at rest. He was able to talk, was all there mentally, and seemed fairly relaxed. They also provided him hydromorph which aided his relaxation and reduced anxiety which from what I understand would make breathing even worse. He was on the highest level of the optiflow machine, which I believe is significantly stronger than anything you can get from oxygen tanks. The fact that they don’t have optiflow machines in Hospices was also why he had to pass away in the hospital instead of moving to somewhere more comfortable.
The only time I could see any distress was when we’d help him up off the hospital bed and onto the commode. You could see how weak he was, and when we’d get him back onto the bed, his numbers would drop down to low 70s and it was the only time where I’d say it looked like he was truly struggling for breath. It would take him 10-15 minutes to stabilize his numbers again, it seemed no physical exertion was possible, and he needed to be completely at rest to keep himself somewhat comfortable.
He was relaxed and at rest and chatting with us probably only 45 minutes before he died. He said he was feeling really tired, and felt like he’d like to close his eyes and take a nap, but said he felt that it was rude for him to do so with all of us (my mother, myself, and sister) in the room with him. We told him that was not rude or a worry at all and to feel free to close his eyes and nap and we’d be there right with him. He closed his eyes for 15 minutes or so and it was then that he opened his eyes and said that he was feeling a bit sick, spinning similar to drinking too much. The nurse came in and put in an order for some anti-nausea medication. He continued to close his eyes, and probably 5 minutes later was when he opened them again and looked around the room and made the “Who is that man?” comment, seeming confused, and then noted that he was “losing it” or something along those lines. The anti nausea medication hadn’t even arrived and my recollection of this timeline is likely a bit blurred as things were happening fast, but my Dad closed his eyes again and seems to be resting or napping. It was only a few minutes I believe later where I felt my Dads hand feel a bit numb. I lifted up his arm and felt it completely limp, and looked across at my sister and started to cry as I knew it was happening. I said “No Dad, please don’t go”, but at that point I don’t believe he was conscious in any matter. He started to do the Cheynes Stokes breaths as I mentioned above, which do look a bit like gasping for breath, but from what I understand are normal breathing patters in most deaths, and again he was definitely not aware or conscious that they were happening at that point from my perspective.
Honestly, it seemed fairly peaceful. It just looked like he finally let go. I hope this helps and answers your question, feel free to ask more.
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Grady,
Thanks for sharing your Dad’s journey through your eyes. Patients and caregivers often speak about how quickly the journey can change and you illustrate that so well.
Sam …
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Thank you for the story about your father. It was uplifting and he seemed one hell of a guy. He put up a good fight. It’s so easy to just give up. I know this is ridiculous, but it comes as such a shock when you are told your days are finite. I am 82 and was given the ‘SLAP’ about two years ago. The side effects from OFEV meds were life changing and I am no longer on them. Perhaps shorter life but better life. Thank you for being so supportive of your father. A situation we all wish we could have. He was lucky and you are commended.
Jackie -
Grady, Thank-you so much for your information on your dad and the final moments. I started to cry because I just picture him doing as you say he did. It is me all over. I have been trying to not see the end, but there comes a time when it is going to happen. We can all pray and say it won’t happen, but it will. I just hope I am like your dad and go with a smile on my face, so to speak.
Once again, thank-you for your info and God bless you and you family.
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