One year ago in February 2011 I had My First Experience with Massive Hemoptysis (bleeding from the lungs). I had to be embolized in an emergency surgery to stop the bleeding, but unfortunately it took over 12 hours after I entered the Emergency Room for me to be taken to ICU and then the VIR operating room. The lengthy delay between presenting with hemoptysis in the ER, and having the embolization was due to a misdiagnosis and miscommunication via my ER resident. I was first told by this young resident that I simply had a case of CF-pneumonia. I immediately voiced my doubts--while blood continued to fill my mouth--, but the young resident failed to properly communicate my symptoms and concerns to her attending physician. Additionally, it was not until the attending radiologist read my CT Scan several hours after I entered the ER and after I was diagnosed with "normal CF-pneumonia" that I was diagnosed with a pulmonary hemorrhage and was then taken to ICU where I waited a few more hours until embolization. Perhaps if communication had not broken down in the ER I could have received my embolization sooner than 12+ hours after it began and the experience would not have been as stressful.
Here I am almost exactly one year from the day I experienced massive hemoptysis. I have been admitted so many times due to hemoptysis and CF exacerbations that I decided to stop keeping track. There are days when I wake up and feel good, or at least my perception of good; I am rested and eager to start my day. The first thing I take when I wake up is my Aciphex for reflux and my Advair 500/50. I brush my teeth and gargle any residual Advair out of my mouth as I begin looking forward to doing my CPT and breathing treatments. Why would I look forward to breathing treatments? They allow me to breathe better; my lungs love breathing treatments and thus I enjoy my breathing treatments. Nothing feels better than the ease of breathing immediately after Hypertonic Saline and Pulmozyme--nothing.
Thanks to regular episodes of hemoptysis I have to constantly check for blood streaks in my sputum. Sometimes I taste or smell blood and I don't see it for a few minutes or hours. Sometimes I feel great and SPLAT! Blood starts showing up when I cough. It frustrates me, it scares me, it stresses me out, and it forces me to change my daily plans on numerous occasions. For example, I enjoy breathing treatments and airway clearance because they make me feel so much better. However, one must stop all inhaled treatments and airway clearance for 24 hours after even a small bleed. This means not only am I coughing up blood, but I have the added discomfort of extra congestion. The only thing I can do is get a glass of ice and sit down in front of the TV. I feel like my day is wasted and that I am a a couch potato contributing nothing to society. It is very disheartening.
As I sit there on the couch resting and munching on ice in hopes of preventing a small bleed from worsening into a massive bleed I try various things to keep my mind busy and relax. I read books, magazines, watch TV, and then I always find myself pondering life and especially how different my life has turned out now that I experience hemoptysis regularly. I can't sleep, because I am on high alert for fear that my bleeding will become significant and I will have to rush to the hospital. Quite frankly the stress that comes along with hemoptysis is second to none in my life.
Moreover, being forced to stop my treatments due to hemoptysis seems cruel. I know CFers who skip treatments just because they are too lazy to use them. I know CFers who skip treatments because they feel like they feel fine and don't need them. Not me. In the last decade I have not missed treatments for any reason other than ones out of my control. I know my lungs need these treatments in an effort to reduce damage and future complications associated with CF. But hemoptysis has changed all of that.
I never know how my day will end or how it will begin. Sometimes I make plans with family or friends only to cancel on them at the last moment because of hemoptysis. There have been multiple occasions when I have looked forward to something for days, weeks, or months only to find myself frustrated and sad that I was unable to participate because of hemoptysis. When someone tells me I look better or that they are happy I am feeling better when I get out of the hospital I wince. All I can think is that my life could change in an instant all because of hemoptysis. What I unfortunately learned from experience is that you can be the most compliant patient in the world, have normal spirometry, and yet hemoptysis can fundamentally change your life in a flash.
The most frustrating part is that there does not seem to be a very effective way to treat hemoptysis in CF. Embolization helps some patients, but not all. If an embolization does not stop massive hemoptysis a lobectomy may be performed, but there is the risk of death from the massive hemoptysis that necessitated the procedure, and the procedure itself. The thought of dying from massive hemoptysis is unpleasant. It's a valid fear because I have watched other CFers die from hemoptysis and complications that were directly related to hemoptysis. I just wish my doctors could find the exact answer to my hemoptysis and a treatment that would alleviate the problem.
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