Terminally Diagnosed with Pulmonary Fibrosis and Bronchiechtasia. My Death is a Prolonged Dry Drowning.

 

My PCP’s exact words were “Go live your life as much as you can, for as long as you can!”

Then, she said “You already know you have asthma and COPD, your CT showed that the nodules… there are a lot more than we thought, we had to use AI to count them all… They are benign. We wouldn’t have to worry about lung cancer with you until your 70s or 80s, so you don’t have to worry about lung cancer. You also have bronchiectasis. That’s a progressive disease, it inflames and scars the inside airways, causes mucus production, it is like bronchitis, but much worse, and permanent. It is mild right now. You also have pulmonary fibrosis. That is a hardening or scarring of the lungs. It can’t be reversed, either. The two are working against each other. Right now, both are mild, but that can change. You have a follow up with your pulmonologist in January. Talk to them about this. You will be getting a CT scan every year for the rest of your life, and will be seeing me every few months for the rest of your life.”

Subtle. Tell me I am dying without saying “you are going to die.” I was just told that I have 2 terminal lung diseases. Each, individually, with inside mortality at around 2–5 years, and outside at 12–15 years. When they are comorbid conditions, especially when they are comorbid with other pulmonary diseases, the mortality range can plummet to anywhere from months to a couple/few years.

There is still the chance to live those long (mostly miserable and desperately grasping at “more life” toward the end) years. I have no intention to be bed ridden, either with forced ventilation or dependent upon oxygen to live. That is not living, that is existing for fear of nonexistence. I will have none of it. I live in a state that allows “compassionate end of life care” for terminal patients. That discussion has already started with my medical and social support teams.

I wondered why my oxygen has been trending down, despite my exercise and general fitness trending up.

I have been told both I will and won’t qualify for a lung transplant. I would not go that route, if I did qualify.

There’s an ironic twist. My ex gets her way. About 9 years ago, when I was dealing with a bad lung infection and she was my medical guardian and caregiver, she would say to me as I coughed up blood until I vomited “I wish your cough would just kill you.” Well, it will. Of all the things I have been through, have survived, my cough is what will kill me.

So what do you do when you know you are a dented, expiring can of soup on the back of the shelf? The advice when diagnosed with IPF and bronchiectasis is to step back, lean on your family for support, and begin palliative care. That is not an option. I have no family.

My cough is currently just a nuisance, I keep my low oxygen fairly well disguised.

It is still my intention to return to work, and work, for as long as possible. I have a plan and a vision. A little thing like a terminal diagnosis isn’t going to slow that down.

I’ve LOGICALLY accepted. I am “terminal.” That means I am dying. I have 2 terminal diagnoses that are aggravating each other. they are on top of a “very serious” lung disease. I am looking to live the rest of my life to its fullest! I am working on getting everything in order now, not because I think I’m dying next week, but because I want everything taken care of, so it is out of the way. Then, the only thing left is the crying, as they say. I will live my life as if I have a million years, and as if every day is my last.

Of course I’m looking into the new, experimental, therapies in the pipes. I’ll be working on getting into research studies and phase 1 and phase 2 trials for the new class of drugs that are showing signs of reversing IPF. The scarring left by bronchiectasis is the same, structurally, as IPF scarring, so I offer a novel chest to experiment on…