The whole time I was in the hospital and for several days after I checked into the apartment, I continued to gain weight by retaining fluid. A lot of this fluid started to make it’s presence felt in the form of a large hump that appeared between the seam of the primary incision, which ran just below my right armpit, and the older row of thoracotomy incisions. This grew to be about eight inches in length, six inches wide in the middle and protruded at least three inches outwards. It seemed to be filled with fluid that my doctor and I assumed was related to the edema. The hump later proved to be symptomatic of something that had gone wrong during my postoperative care.
When I checked out of the hospital I was given a set of prescriptions for all the drugs I would need to replace those being issued to me in the hospital ward. I picked up a month’s supply of Heparin needles from the pharmacy, as part of this package. These needles were to be self-administered, a task I was NOT looking forward to. As it turned out, the Heparin injections, the newly formed hump, the creatinine levels, the ongoing edema and the mysterious blood clot, were all parts of an evolving drama connected to a medication I had been receiving intravenously since the surgery. I was unaware of all the drugs I had been given intravenously until I saw them in pill or needle form. Once at the apartment, I studied the labels in preparation to taking the prescribed dosages and I suddenly had a strong suspicious what the source of my edema was.
I mentioned when my story began that I had displayed an adverse reaction to Toprol, the beta-blocking blood pressure medication that the cardiologist had prescribed for me. This medication caused me to swell up and had led indirectly to the discovery of the fluid in my chest and therefore to the final diagnosis of Mesothelioma. Without the edema causing me problems, I might have gone on for some time, unaware that I had cancer until the disease was rampant enough to create other symptoms. The drug that had once helped diagnose my illness was now implicated in delaying my recovery.
As part of the surgical protocol and to help stabilize the heart, BWH routinely used a drug, given intravenously, called Lopressor. I was aware of this at the time but wasn’t familiar with the name or the nature of the drug. I had of course alerted the hospital to my problems with Toprol when I answered their medical questionnaires. In my apartment I learned that Lopressor in its solid form is called Metoprol. I was instantly suspicious that I had been taking Toprol all along. I emailed Dr. Jaklitsch and explained my concerns about Toprol and reminded him of my prior experience with edema. After he gave me a short explanation of why Lopressor was considered necessary for all EPP patients, I was told that I could stop taking the pills if I chose. I did choose to stop, and over the next two days I spent a fair amount of time in the bathroom eliminating a few gallons of excess water. The hump never did shrink, however.
Since the day of the surgery, therefore, I had been receiving a medication whose support literature listed fluid retention and edema as a side effect. It was Lopressor that had been making me swell up. Since this effect of Lopressor was only rarely seen, nobody on the medical staff had made the connection. Instead, they began looking for other causes; namely kidney failure, blot clots, too much fluid intake, etc. This led them to recommend a number of procedures, the ultrasound exam, the additional exams by the renal team and the Heparin injections, all of which were probably unnecessary and wound up putting me back in the hospital a week after I checked out. I am not bitter about this. I understood the risks of the surgery and I knew that balancing these risks was a difficult task at best and the hospital did what they thought was right under the circumstances. It did set me back for over a week, however, and left me with an unusual lump under my arm that I may never entirely get rid of. C’est la Vie.
During my first week after surgery I began to develop a non-productive but moist sounding cough. I was assured that this was quite common and merely reflected an attribute of amputation. It was explained to me that my body hadn’t figured out that the rightmost bronchial passage had been surgically closed and simply assumed that it was blocked with mucus. My body sprang into action, trying to clear the airway by coughing. The irritation produced by the cough simply created extra mucus, which in turn convinced my airways that there was a blockage that needed to be coughed up. The cough very quickly became annoying and quite persistent. It also became something that I started to worry about. How long was this cough going to be with me, I wondered?
I began to feel progressively worse as the week went on and my cough was getting more and more intense. Convinced that I might be in serious difficulty, I contacted Dr. Jaklitsch that Friday night and arranged to be seen at Dana Farber Hospital, across the street from BWH. He took a look at me and said, "You look awful." My cough wasn’t productive but the pallor of my skin and my general demeanor was enough to alarm him and make him suspect that I had pneumonia. He promptly put me back into the hospital and prescribed a cocktail of antibiotics to be given intravenously. This was done to make them more effective than if taken by mouth. He also wanted to check my fluids and blood level. Tests taken that night confirmed that my red blood cells were low and he immediately suspected internal bleeding and stopped the Heparin and ordered that I be given two units of whole blood.
He arranged to draw some fluid out of the hump area but found that only a bloody colored gelatin could be found there. This was not lymphatic fluid but in fact had become the repository for much of the internal bleeding. Very little liquid could be extracted since the fluid was in numerous small pockets. We decided that time would have to take its course and that we would wait for the body to absorb this material rather than try to extract it via needle. Radiation treatment six months later simply solidified this tissue and only plastic surgery will now eliminate it, something I’m not interested in pursuing until I get my hair transplant. (Just kidding of course)
Dr. Jaklitsch had checked me in but explained that he was leaving on a seminar. He told me I would have to stay in the hospital until his return. I spent the next six days in the hospital regularly visiting the toilet to eliminate excess fluid and mulling over the lousy food I was forced to eat in exchange for the fridge full of yummy groceries I had purchased upon my release the week before. Once the Heparin was stopped and the Metoprol was no longer given, my condition improved rapidly and I was soon climbing the walls, anxious to leave for my journey home. Late on the night of Thursday November 8th, Dr. Jaklitsch returned from his trip and checked me out of the hospital. He provided me with his cell phone and made me promise to call if my condition should worsen. He also furnished written permission to fly and a prescription for oxygen on board the aircraft, should I need it. On Sunday November 11th, one month to the day from my surgery, I was on my way home to California.
