Breathing is fundamental. No breath, no life! For the past year I have been afflicted with a respiratory ailment, which has grown worse as the year has progressed. At first I was just huffing and puffing a little, then by May 2013 I couldn’t cross a room or climb stars and not be totally winded. I have been to the pulmonary doctor eight times in 2013 to date seeking a solution. My doctor prescribed two drugs: Prednisone and Albuterol Sulfate. Prednisone opens the large airways in the lungs and Albuterol Sulfate taken through a nebulizer clears the small airways before the sacs (alveoli) at the end of the lungs. At first two drugs relieved me of the problem, but there was the side effect that my hands trembled. Handwriting became very shaky. Despite my distress at the side effect, I continued the treatment. It was a Faustian deal.
By mid-July, the severe breathing difficulty started again, and my doctor treated it with succeedingly more aggressive dosages of Prednisone while continuing with the inhaled Albuterol Sulfate. The trembling got worse and became a complete body vibration. I could no longer write at all. I could type only with great difficulty. My fingers would strike a key too hard, making multiple letters, or would miss the keys entirely as the finger’s downward movement was out of control. For a writer this is almost total disability. Walking became a test of keeping balance. I attributed these side effects to the Albuterol Sulfate, which I took up to four times a day. I discontinued the drug. The trembling and vibration diminished enough that I could type, but the breathing became even more labored.
The doctor prescribed an even higher dose of Prednisone, which again worked for a short period of time then started to be less effective with each passing day. With the beginning of the higher dosage, I could breathe enough to walk around, do errands, and go places, but the trembling and vibration became even worse. I could not get a fork to my mouth without the food jumping off the implement and landing on my chest or the floor. Ultimately I could not go out in public and had to give up everything but reading books. However this was not the worst side effect. I found my mood altering into a state of extreme anger and depression. I was yelling at the people I love, cursing the world, and seriously considering suicide. If you can’t breathe and you can’t control your body what point is there to life? My Bipolar Disorder was coming back with a vengeance.
The Prednisone had to be stopped. The drug was no longer working and I was emotionally agitated. The doctor ordered a series of tests to see if there was a hidden cause for my ailment. Perhaps there was a hidden heart problem, although my cardiologist said I was fine. Perhaps there were blood clots in the lungs that didn’t show up on the numerous chest X-rays I had had. I have had them before and in 2007 had one so severe that part of my lung became infected, resulting in an operation that removed part of my lung. Since then I have only had 50 to 60% lung capacity at my best. By August 2013 I had only 27-30% lung capacity.
I had blood tests and a CT scan. They both came back negative. No blood clots, no hidden heart problems. No strange blood disorders, no cancer. No emphysema. Next approach was to attack my obesity. I weigh a little over 300 lbs. I should weigh 190 lbs. Since my diagnosis and treatment for Bipolar Disorder I have gained an enormous amount of weight. The drugs prescribed do that to you. I took that Faustian deal, too, and accepted the weight gain as a price I had to pay for a balanced emotional life. As time wore on and the weight made me morbidly obese I sought to lose weight — without success — through four different diet programs. The result was I would lose a maximum of twenty pounds, plateau, and gain all the weight back. The doctor theorized that my weight could be a major contributor to my inability to breathe adequately. He proposed the idea of bariatric surgery, and I agreed to seek a bariatric surgery technique called “the gastric sleeve.”
Today I am a mess. I feel like have a career as a patient. I go from doctor to doctor for various approvals to have bariatric surgery. The cardiologist must approve. More blood tests were required. These tests found nothing. I had to have a cardio stress test, in which I walked on an increasingly faster-paced treadmill, with my nose closed by a clamp and my mouth blowing into a breathing device. The stress test showed I had no hidden heart condition, but the expelling of carbon dioxide from my lungs was impeded. My pulmonologist determined that the problem was not in the large airways, but in the small airways before the alveoli. I have “small airways disease,” he said and put me on new medicines recently developed that are supposed open up the small airways without causing such terrible side effects. I had to have an upper endoscopy in which, under anesthetic, a tube with a camera and a biopsy scraper were inserted down my throat to examine the condition of my esophagus and stomach. I now await the results. A psychologist must approve my mental fitness for the surgery. I await a letter from my long-time psychiatrist to the psychologist verifying my mental condition as stable enough for the surgery. It will be many weeks before I get approval to proceed with the surgery because after I pass all the barriers, my insurance company must give its approval. In the meantime my breathing is still not normal, although I have seen minimal improvement with the new drugs; and my attitude toward life gets worse. Is this all I have left in my life? Am I to sit and be patient, when the thought plagues my mind that I am just a piece of living meat, whose fate is in doctors’ hands? I have little control over my own life, and it pisses me off. The anger, frustration, and desire to end it all are gaining the upper hand.
I can’t let it. I will not be defined by the mental illness that hovers within me. I realized the stress my situation causes is driving me back into mental illness. I have to stop it. I have to disengage. I have to pull back. I have to stop seeking help where there is none. If I were to have this bariatric surgery, supposing my insurance carrier would allow it and if I get all the approvals needed to have the surgery, would it make any difference? The answer is iffy. I have decided no longer to pursue this latest straw with what energy I have. I will play out the bariatric surgery option, but I won’t be attached to its happening. The small airways disease may not be reversible, although my doctor believes it is. My view is that nothing so far has really worked. Perhaps this disease is terminal. If these are to be my final days then I want them to be mine and I want them to be happy.
Disengagement means to me to stop engaging in those things that cause me stress, anger, and emotional imbalance, and to stop looking for solutions where there are none. I believe my breathing problem will not go away. The cigarettes, the marijuana, and the cocaine I smoked for more than 30 years caused my chronic respiratory disease. They more than the blood clot created the conditions for my losing part of my lung. The last two of my favorite smokes were self-medication. The price for this has now come due. The things in life that I still wanted to do probably won’t be done. The future travels I wished to make probably won’t happen. I must be at peace with that. I am going to sit, walk as best I can, and breathe in and out enjoying what life I still have to live.
I was 69 on August 9, 2013. I gave up my birthday gift to myself, which for many years was a plunge in the ocean, to have the upper endoscopy done. The swim always made me happy. The endoscopy was attachment and suffering. I wonder if it was worth it. Perhaps I will live to see many more birthdays and I will be thin and breathing easily, but perhaps not. At my age, with my history of self-abuse, and my Bipolar Disorder, I know that somewhere out there not too far away is the final breath. I want to take that final breath in the full realization that I am mortal, flawed, and yet content with who I am and without attachment to that which makes me suffer. I make only one request that I do not die in a hospital with tubes all over me. I want to have my last breath under a tree looking at beautiful scenery smiling. All life is change. “Anichi,” say the Buddhists. I will be one with the change. I shall not fear death. I will pass with the final breath happily into God’s hands.