Serenity comes when you trade expectations for acceptance. – Buddha
When I get up in the morning, Charles is already awake and he always has coffee ready. I’ve learned to expect that, and I am grateful for it. But, if one day the coffee is not ready when I get up, do I have the right to be angry or even disappointed about it? No, of course not. But I probably would be anyway. Another Buddhist teaching is: Do not blame others for disappointing me, blame myself for expecting too much.
While I am Christian, I do like the teachings of Buddha. I like to think Buddha and Jesus are good friends.
I started having breathing issues shortly after my Mitralcliptm procedure last October. On the one hand, I did feel better; on the other hand it didn’t feel like I was progressing quickly enough. My expectations for my recovery had not been met. I was supposed to be training for my walk up the Appalachian Trail by now.
When I told my cardiologist I was having shortness of breath and that my stamina was suffering – not what I expected three months post procedure, he said my heart was fine. He referred me to a pulmonologist to check my lungs. The pulmonologist was highly celebrated in the community. The words “brilliant” and “amazing” and “best” were batted around, so I was excited to meet him and see what he could do for me. Our first meeting was satisfying. He explained the way the lungs work and all the possible diagnoses for me. He ordered x-rays and gave me a prescription for a nebulizing machine. He told me to just go pick it up, it would be $35. I told him I had met my out-of-pocket for the year, so it shouldn’t cost me anything. He said the machine would require a lot of insurance paperwork to be submitted, and he doesn’t do that. I thought both “well, what’s $35, after all?” and “hmmm, a little effort would have saved me $35.” I felt annoyed, then let it go (mostly).
The nebulizer didn’t do anything for my symptoms, nor did the next thing he prescribed. He ordered a pulmonary function test, which I failed at 50%. He dismissed the test numbers as not “real” and implied I hadn’t done my best. He asked why I was restricted. I said I didn’t know, that’s what I hoped he would find out for me. He said, “Your lungs are not the problem or the inhalers would work, unless it is scar tissue or fibrosis. Your heart is the problem,” he said.
“But my cardiologist said my heart was working fine. That’s why he referred me to you.” I protested.
“He said your heart is fine,” he said. Then he laughed as if that was the funniest thing he had ever heard. “Look, this is not a lung issue. I know you are disappointed that I don’t have a solution.”
“Wouldn’t anyone be disappointed?” I asked, choking back tears.
“I’m going order a CT so we can look for scar tissue or fibrosis,” he said. “If you want I can put you on oxygen, but you need to go back to your cardiologist.”
I went home and wept in Charles’ arms. The next day one of the nurses at cardio-pulmonary rehab said she’d been looking into my history and felt I might have “Interstitial lung disease” because my prior chemotherapy protocol combined with radiation has been shown to cause that. “We are seeing it in people your age with a history of Hodgkin’s Disease,” she said. Ah, the power of suggestion.
Like any person in their right mind, I went straight to the internet to look up interstitial lung disease. The only cure is a lung transplant. Down the rabbit hole I went, researching lung transplants, the transplant doctors, how long I would have to wait to get a donor, whether I would even be a candidate. For a solid two weeks, every moment was spent on research, like the best nutritional support options, life expectancy (2-4 years), what end-of-life with ILD looked like. I started planning my funeral and asking God if He had my place ready and if He would arrange it so there to be lots of trees.
During all this time I’ve been coughing, wheezing, and clearing my throat, I wasn’t able to do the basic things, like dress myself, without becoming winded. I woke up at night unable to breathe fully and I lost my appetite. I ordered a air purifier hoping it would help me breathe easier at home. Air purifiers are an approved expense with my flex spending account, so I submitted the necessary form to Dr. Charming’s office. His office responded that he doesn’t do those things, nor does he do disability or FMLA paperwork. This angered me. I wasn’t asking for disability or FMLA paperwork, but what if one of his patients was at that point? He won’t help them because he doesn’t do paperwork? How arrogant! Then I remembered the nebulizer machine.
I had the CT on Friday. Dr. Charming called Friday afternoon with the results. I have a liter of fluid under each lung. This is called pleural effusion and it causes the lungs to collapse for lack of space – hence, the shortness of breath. It also causes lack of appetite. He scheduled a thoracentesis – an unpleasant procedure where a tube is inserted through my back and into the pleural area to drain the fluid. This will be my third since the open heart surgery in September 2023. “But,” he added, “Your actual lungs are fine – no fibrosis, and that small mass we’ve been watching hasn’t changed since 2019. This is a heart issue. You need to get with your cardiologist ASAP.”
“Would you please talk to my cardiologist and let him know?” I asked. “Make sure he understands the reality instead of me just complaining?”
“Yeah, yeah, yeah,” he said, then hung up.
I am relieved that it isn’t my lungs. The process to get a lung transplant is very time consuming and complicated, and not a sure thing anyway. However, if you ever need a lung transplant, ask me. After two weeks of research, I am an freaking expert.
It is staggering how much time and worry I have wasted over “What if?” What if I need a lung transplant? What if I die in my sleep from lack of oxygen? What if I’m not a candidate and I only have 2-4 years left?
The amount of available medical information available to us now is staggering. It used to be, patients had to wait until their next appointment so their doctor could explain test results. Now, we can find the diagnosis in MyChart and start jumping to our own conclusions. I am a world class Jumper in the My Own Conclusions competition. This availability of information is a double-edged sword.
Now that I know my lungs are working fine or they will once the fluid is removed, the next thing is to determine why this happens. Worst case: my heart is not working properly. Best case: I got the awful cough that everyone had in January, or even COVID, and the constant coughing irritated the pleural area causing the fluid. If the second option is true, the thoracentesis will fix the problem. If the first option is true, then I don’t want to think about it, but I probably will, I will probably over think it.
I know what I need to do. I need to concentrate on what is versus what if. Making extensive plans for something that may never happen is a waste of time, really.
Meanwhile, here is what is. My lungs are fine. There is a solution to my breathing issues and that will happen tomorrow. Charles is my hero and always has my back. I can count on my wonderful family and supportive circle of friends. I have a good job where they tolerate my absence for doctors appointments. While it has been disgustingly cold this past week, it is 60 degrees and sunny today and I can enjoy being outside again. Spring is on it the way.
I will have the thoracentesis tomorrow, be grateful for the relief it gives me, and wait until I can see my cardiologist again to find out next steps. Whatever else reveals itself in the coming weeks, months, years, I will deal with it as it comes. I will eat nutritious food, I will move my body as much as I can, and soak in as much sunshine as is available.
At some point, I will also fail in my resolve to stop trying to get my medical degree at the school of Google. I know this about myself, so I will forgive myself for that “need to know before there is something to know” propensity I inherited from Daddy.
But for today, at least, I’m going to operate on the idea that only “what is” matters, and go soak up some of that sunshine. I will not expect it to stay longer than nature allows, and accept it will go down again this evening. I will try to plant some peonies, and attempt to clean the hen house. If I cannot live up to my expectations for myself today, I will accept Charles’ help.
Oh, and I’m firing Dr. Charming. Life is too short for tolerating mean doctors.
