One of the realities of major organ amputation is that it places enormous stresses on the body and that this creates a complex brew of issues that may require conflicting treatments. A simple example is the issue of blood clots versus internal bleeding. EPP involves major surgery, serious enough that it compares to open heart or brain surgery and may even eclipse these in terms of risk and complexity. Massive amounts of surgery and the subsequent replacement of internal structures like the diaphragm and the pericardium can involve an excessively high risk of internal bleeding.
A long period of recuperation and bed rest can introduce an equally risky chance for the creation of dangerous blood clots that can block veins and arteries leading to the heart, brain or the remaining lung. Such clots can be deadly if they cause a heart attack, stroke or lung embolism and must be prevented. To avoid them, the patient receives blood thinners, exactly the wrong kind of medicine to give to someone with massive fresh wounds and extensively damaged blood vessels deep inside the body.
These two problems conflict because the solution to one is catastrophic to the other. Balancing the blood thinning agents is therefore an essential and highly risky process, one that requires a complete team effort on the part of the doctors, nurses, and interns on the floor. This is where my next major problem surfaced.
More than half the patients of EPP experience various co-morbidities as explained earlier. Many EPP patients (around 40%) experience some form of heart instability. For some, the heartbeat becomes irregular and needs to be regulated. In other cases the heart actually stops or may race at high speed. Blood clots are also a common occurrence. To prevent them the nurses place plastic inflatable leggings on the patient’s legs. These inflate and deflate with an air pump, causing a compressing, stimulating action that keeps the blood flowing in the legs even while lying down. This is inflicted on the patient with the expectation of preventing blood clots.
I found these leggings to be the worst form of torture. The lining of the leggings was of a rough cotton material that itched horribly and made me sweat. I eventually found that stuffing pillow covers into the boots made them tolerable but they were insult added to injury when combined with the water deprivation I mentioned earlier.
Regardless, a few days into the recovery I started to retain significant amounts of fluid. My face became puffy and my arms and legs swelled up with edema or fluid retention. I suspect this was one reason they denied me access to fluids because I was retaining too much of what I was drinking.
Edema is a classic symptom associated with blood clots in the lower extremities. It also was a major concern because a week after my surgery my creatinine levels began to climb, indicating that my kidneys were no longer functioning perfectly. Creatinine is a waste product of protein metabolism and needs to be eliminated from the blood stream by the kidneys. Daily blood tests revealed an alarming escalation in the levels and the cause was suspected to be kidney damage caused by the Cisplatinum lavage of the thorax and belly.
I was made aware of the levels when I started receiving visits from the renal or kidney team. The head of the team was a German speaking doctor so he and I hit it off immediately. We chatted in German as his half dozen interns waited patiently and then one of them would give me an examination. This procedure was followed every day as long as the higher creatinine levels were still being detected. After four or five days, my creatinine levels began to drop and my kidneys were predicted to be out of danger. Since my edema hadn’t cleared up the focus now became "does he have a blood clot?" I found myself being shipped downstairs in the middle of the night to be evaluated by an ultra sound radiologist who examined both of my legs, from the groin to the heel.
The radiologist, a young East African woman with a charming singsong accent, told me that my veins were so clean that she could make out the tiny valves even in medium sized branches. These valves are designed to keep the blood from flowing back downhill, making it easier for the heart to pump blood through the body in defiance of gravity. She scanned both legs carefully until she found a small round mark in the area of my right Achilles tendon and then called another technician for a second opinion. Since they couldn’t agree on what this was, they called the supervisor and for the next half hour they scanned and re-scanned the area from different perspectives hoping to come to a definitive conclusion. It was either a small calcium cyst or a tiny blood clot and they couldn’t decide one way or the other.
The renal team decided to err on the side of caution and declared it a blood clot. They wanted to prescribe Coumadin (Warfarin), an anticoagulant, to dissolve the suspected clot and prevent the formation of any new clots that might endanger my life. Dr. Jaklitsch strongly disagreed with this diagnosis and felt that the Coumadin was too strong and might cause internal bleeding. Residual bleeding was always a major threat with this type of surgery. They agreed to meet in the middle and prescribed Heparin (Lovenox), a less powerful medication instead. Then they began giving the Heparin via tiny needle injections into the stomach wall. Since these caused the blood to thin, the skin surrounding the needle marks soon became dark with rust colored bruises and although it wasn’t painful, it was distressing and made me look like a drug addict.
