Lung Disease & Shifting Perspectives
Originally published at Welcome To The Dollhouse. You can comment here or there.
I call this diptych, Perspectives. It’s the same shot with two different processings. When I look at it, I find my eyes being drawn to one interpretation of these water droplets, then moving to the other. Somber/heartening. Moody/incipient. I cycle back and forth with evocation. This diptych represents my life during the past two months.
It is hard to believe that I’ve gone over 6 weeks without a post, especially as there has been so much going on. February and March were, in a word, hellacious. Little did I realize that the shortness of breath that I attributed to my being fat-fat-fat and poorly conditioned would turn out to be something much more elusive and potentially sinister.
I’ve not blogged about it because I just couldn’t. Usually I don’t blog “in process” so to speak. I tend to blog after I’ve had time to adjust and sit with things a bit. Yet this situation ended up being a prolonged process from resignation to horrific despair to redemption. It was the most scared I’ve been in my entire life.
For those of you who’ve followed my tweets and Facebook ramblings, please feel free to skip this retelling.
The History
I started getting shortness of breath after Thanksgiving last year. It only happened with exercise, so I thought it was just my out of shape, fat behind needing to kick it into higher gear. But then by January it progressed to the point where I had trouble even walking up the stairs in my house. I seemed to be air-hungry with even the slightest exertion. People also told me that I sounded “breathy” or “breathless” while speaking. Very weird.
I then did the right thing (finally) and went to see my doctor. After examining me, she didn’t think much of it. My exam was normal but for completeness, she ordered a chest x-ray and lung function tests. I had the CXR the same day. Surprisingly she called me about an hour afterward (a very worrisome sign when your doctor calls you directly with your test results). It was abnormal, showing an interstitial infiltrate that was felt to be aspiration pneumonia (something truly bizarre in a mentally competent, non-tube fed adult with the ability to swallow properly) but could also be sarcoid or broncholitis obliterans organizing pneumonia (BOOP…something I’d never heard of before). Again, she wasn’t worried, but planned for me to have a CT scan of the chest.
I had both the CT scan and the PFTs the following week. The PFTs were markedly abnormal that Friday. The tech was all like, “I have no idea what’s wrong with you!” (OK she didn’t say that exactly, but she was indeed puzzled). On the way back home I stopped at Cosi for a bite and e-mailed my doctor about the PFTs. By the time I got home, she had replied that the CT scan I had the day before looked like sarcoidosis. I needed to see a pulmonologist.
I managed to get to see the pulmonologist from Abington relatively quickly. He reminded me that I didn’t have sarcoid (even though sarcoid was a likely diagnosis) until I had biopsy proven sarcoid. We scheduled a bronchoscopic biopsy for March 1st. The procedure went fine, though the Vitamin K they gave me for sedation made me decidedly loopy. I spent the week waiting for my results so that finally I could start treatment. I just wanted to feel better. But on March 7th I got the results: negative. Then I became a diagnostic dilemma and sarcoid became less likely. We were heading into the zebra zone (when you hear hoof beats, you don’t normally look for zebras…).
My pulmonologist, with whom by then I was having a love-hate relationship (during my first visit, he mentioned my obesity four times!), felt I needed a diagnostic lung tissue biopsy via VATS (video assisted thoracostomy surgery…like laparoscopy for the chest). Through utter miraculous intervention of a very nice surgeon who likes my pulmonologist, I managed to get scheduled to have the procedure done on March 14th.
Despite the nice surgeon’s assurances that this was not the cakewalk procedure my pulmonologist described (ventilate one lung and deflate the other; stick a trocar through the chest wall and videoscopically take lung biopsies from the collapsed lung. Shudder), the biopsy went fine. I suffered through a week with a chest tube, had one panic attack that caused one of the residents to treat me like I had escaped from the Cuckoo’s Nest, but had no complications and was discharged on Friday.
The problematic issue was the biopsy itself. The hospital pathologist read it as showing UIP or usual interstitial pneumonia, something that goes along with idiopathic pulmonary fibrosis (IPF) although it can be seen in other conditions. IPF, unfortunately, does not have good treatment modalities to prevent progression of the disease. And usually people die in 2-5 years unless they have a lung transplant.
My pulmonologist, who is an even faster-talker than am I, said quite clearly that he didn’t think I had IPF. He thought that if there was any chance of it being interstitial fibrosis, it would be the less severe nonspecific interstitial fibrosis (NSIF) which tends to affect more younger (ie less than 50) nonsmoking, women and has a better prognosis, since it is responsive to some therapies. Of course despite all his blizzard of words, all I heard was, “You have IPF and you are going to die air-hungry, helpless on a ventilator while indifferent residents ignore you.”
Despite my laser focus on my impending death, I did manage to hear him say that he did not agree with the biopsy reading and sent the specimen out to one of the 4 lung pathologists in the country who he trusted to accurately read the specimen. He said that we’d need to wait for about 7-10 days for her review.
The Wait
One of the things you might have learned about me over the years is that I’m not good at waiting. Patience is not my strong suit. I want to know what I’m dealing with and devise a plan of attack to fight it. This inevitably led to my presuming that the worst case scenario (IPF and death) was what the biopsy would reveal. And, IPF, as I became intimately aware of during my incessant researching, is not a disease you can fight very well since no treatment really helps.
Death or a lung transplant. For days I cried. I raged. I bargained (please just let me get to raise Zara until her teens). I cried a lot more. Surprisingly for me, I chose to reach out to friends and lean on them. The more I read the words of support and prayers offered, the more I cried. I’m not a good person. I’m lying here in bed being selfish and angry because I don’t feel that I deserve such a terrible prognosis. Well who the hell are you, Miss Missy? How can you just blubber and cry, “It’s not fair!?” You are nothing special and deserve everything that happens to you.
Oh no, that voice was back. The voice I had lived with most of my life. That voice told me that I was such a horrible person that even God had turned his/her back on me.
“God hates me,” I mumbled to my friend Lisa that Saturday. “God has always hated me,” I continued, voice wavering.
Lisa, my bestest of best friends, who had been the caregiver for her late mother who recently died of aggressive breast cancer, chose not to argue with my assertion. She sat down on the edge of my bed and looked at me thoughtfully.
“Why would God hate you?” she asked simply.
At this point, you are most likely saying to yourself, I didn’t know that dear ol’ Teendoc was into God/faith and that whole kettle of fish. And if you are surprised it’s most likely because I don’t talk about it much here on the blog. As a person whose religious/spiritual journey has taken her from Presbyterianism to Religious Science (not to be confused with Christian Science) to atheism to agnosticism to (gulp) Catholicism (I converted in college), I believe that faith/spirituality is a private thing. I use it to help me to be a better person, but not to proselytize or bludgeon others with the my belief is better than your belief attitude that I often see when religion is discussed. The bottom line is that I don’t know what the truth is. But I do know what helps me find my strength to go on another day. Even if I am praying to the Great Spaghetti Monster in the sky, it doesn’t matter. I don’t ask for miracles. I just ask for strength to go on and I give thanks for my blessings. It’s simple and it works for me.
Except for when it doesn’t. Like when the voice comes back and tells me all the bad things. And that’s what happened during that sunny Saturday afternoon. The voice was back with a vengeance.
“Well I don’t know why God hates me. I think I’ve just been a terrible, unforgivable person,” I blurted. And even as I said this, I understood the irrationality at work in my mind, but I was powerless to stop it.
Lisa, however, stayed calm and focused. “I’m not able to see anything you’ve done that would make God hate you. You are the best, most giving, loving person I know.”
“But he/she wants to punish me! I know it!”
“We don’t know that at all. What we do know is that we have to wait for results. Until we have results we have no idea what we are dealing with.”
“I KNOW that I’m gonna die!” I snapped.
“We’re all gonna die someday. But I don’t think this is your time now. I just don’t.” She looked at me with that even surgeon’s gaze of hers. I rolled over on the bed and went back to listening to that voice inside my head shrieking, “she’s so wrong!”
(to be continued…)