The doctor started asking questions and my chest began to feel like bands were tightening around it.
Shortness of breath? When did that start? Upon exertion or at rest? Swelling in your legs? Any falls? How are you sleeping? How is your memory? With orders for a chest x-ray, and blood work, as well as a referral to cardiology we left the doctor’s office.
We have been to doctors several times over the last few years complaining about tiredness, memory issues, not wanting to do anything. There where some heart issues. A pacemaker and a ventricular ablation seemed to provide some improvement, for a while.
We started talking about other reasons for the lack of interest in doing things, and the persistent tiredness. Depression? Drinking? Marital issues? I knew something was wrong, and I wanted to fix it.
We got the chest x-ray right away, followed shortly by a call from the doctor with a referral to a lung doctor due to fibrosis. Wait. What? That is when I did the stupidest thing. I went on the internet. Now, I was the one that couldn’t breathe.
Fibrosis is bad. Really bad. You are going to die bad. And not die in a long time in the future, but in the foreseeable future. As in put your affairs in order now, because, you know, you are going to die. I did not share the news. I figured if he was curious, he would look it up.
All our plans seemed to be going up in smoke. Our travel plans, including our 50th Anniversary trip we have begun planning for in three years. Could we go now instead of then? Could we go at all. What would we do over the next few relatively healthy years. And then, the hard question. How would we handle the bad years?
A few tests later and the heart is proclaimed good. Good for now, because fibrosis is hard on the heart as it has to work harder and harder to get the blood into the lungs for oxygenation. Did I mention I’d been spending time with the internet. I followed several lines in inquiry.
The lung doctor got us in quickly. The doctor said, “Your diagnosis is Idiopathic Pulmonary Fibrosis. Stay off the internet.” To late, but I didn’t tell him that. I’ve already seen x-rays of the progression of IPF, and heard a recording of what the doctor hears as he listens to the chest. I’ve heard all the bad news, I hope. He ordered tests and then we had to wait.
There is good news. Three years ago, in 2015, two drugs were approved that are effective in slowing down IPF. No, it is not a cure, but it buys time. If I add the years the medication can hopefully add to life expectancy, to the highest number of the expected range of life prior to the medicine, add in a few years for luck, and if we caught the condition early, then life expectancy it isn’t so bad.
The only cure is a lung transplant, if you are healthy enough.
Yesterday the tests were all in, and we were back in the doctor’s office. The diagnosis was revised. He doesn’t have IPF, but COPD or Emphysema. There are a lot more treatment options for COPD. You can live a good while with COPD. His lung function is relatively good, but the oxygen saturation in the blood tend toward low. Oxygen is now his new best friend.
There are still some unanswered questions. There will be more tests. But for the first time in weeks, I can breathe.