Chapter 9 Life against death

Hospitals are places you go with great hope of being healed or cured and returned to health. But they are places visited by death on a regular basis. I have always been ambivalent about entering them, either as a patient or a visitor. In my younger years, I often felt faint or actually fainted when visiting friends or family members there. I think my sympathetic nervous system was reacting to that ambivalence. I certainly do not want to die in a hospital. It's a very unnatural place, contrary to the view held by American television producers.

David in ICU the day after transplant surgery, Aug. 8, 2008.

The first three or four months after my transplant in August 2008 were worse than the operation itself as the doctors adjusted my immunosuppressant medications to prevent kidney rejection. I was continually on my way to or from the hospital for more tests. Having just undergone major abdominal surgery, which is no picnic, and reintroduced foods into my diet I have not had in years, I was urged to drink water like a fish and heavily salt my food, major prohibitions when on dialysis. My intestines were continually in turmoil from the powerful cocktail of meds I was taking daily and my hands shook constantly. Blood was taken from me several times a week to check drug levels. Germs became my dreaded enemies. I wore surgical masks and stayed away from crowds, sick people and children. I washed my hands, seven, eight, ten times a day, and avoided the sun, because my weakened immune system makes me highly susceptible to skin cancer. I had yet another new body to which to acclimate, and my life was still not my own. And then three weeks after the transplant, I needed an emergency hernia repair for the same hernia I had 20 years ago.

I persevered because I was told it will get better soon. And it did, but not after my patience was tried time and again. I might as well have been in the army. While well meaning, the doctors are like drill sergeants in boot camp, often countermanding each others' directions. Most male doctors are condescending, not intentionally, but out of habit, a bad habit. They were in my room, a few days after the hernia repair, discussing my rather high blood pressure and which drugs to try next. I, who have a lot of previous blood pressure medication experience, was not consulted.

I finally lost my patience and interrupted them. "Doctors, excuse me. But I am an intelligent adult, a highly compliant patient who speaks and understands perfect English. I believe I know my body better than you do, since I live in it," I say. "No, I cannot take Norvasc. It makes me edgy and I hallucinate in my sleep. You gave me Hydralazine, a muscle relaxant, the other day, and it had the exact opposite effect. I had such severe muscle spasms, you had to give me Benadryl to counteract it. May I suggest Minoxidil, 5 mg a.m. and p.m. Yes, I know it's an older drug and not popular today, but it works very well for me."

They listened thoughtfully, and one of my specialists finally answered, "Well,... yes, Mr. Rosenbloom, you are very well informed and understand much more than the average transplantee." The conclusion, then, is that I am a special patient, so they will treat me with greater deference. I sigh, smile and thank them.

Over the next few months as I get stronger and the side effects diminish, the doctors begin to see me as a likeable fellow with a great sense of humor. I am actually treated more like a colleague and less a like a helpless patient. One doctor, half kidding, refers to me as Dr. Rosenbloom. They actually look forward to seeing me and I them. We now have a dialog and it works for both parties. I have advanced the practice of modern medicine, as I am included on the team. What a novel concept.

My strength grows as I acclimate to the medication, enjoy a much more satisfying diet, and my new kidney truly becomes part of me. I begin to feel like a whole person again. My mental acuity seems to expand exponentially until I am multitasking like old times. I feel great, like I'm in my 40s again. I begin working out in the gym and think about getting back on the golf course. After being sick for so long, I now have so many options before me. I am asked to join a new program at USC and mentor pre-transplant patients and help them through the transition after transplant surgery. I readily accept.

And so it goes well for six months. Then more tests. The doctors are still not happy with everything. Scar tissue is building up in the renal artery where the new kidney is attached. Angioplasty is ordered with possible insertion of stents to open the artery and create better blood flow to the kidney. It's a routine outpatient procedure I am told. I know one other transplantee who has had it done with no ill effects. But in my case, something goes terribly wrong.

It is March 16, 2009. The stent insertion goes well. I'm lightly sedated and in no pain. They bring me back to post-op recovery, give me a large dose of blood thinner to prevent clots, and I am resting quietly, flat on my back and told not to move. I tell Linda to go home, get some sleep, and come back in a few hours when they will release me. Three hours after the surgery, I feel pain in my groin area and get cold and clammy all over. I reach down to my groin and come up with my fingers dripping in fresh blood, my blood. My feet become numb and I feel like I'm going to black out. I call out for help and four nurses come running. My blood pressure is 70/50 and my heart rate is at 30. Both vital signs are dropping fast. I have a huge hematoma under the skin near the incision. I am going into shock and could bleed to death.

Much frantic activity ensues, like in ER. But I'm giving the orders. "Give me some atropine! Put me in the Trendelenburg position!" (head lower than feet) They work furiously. I can feel the atropine working. I'm no longer faint. I hear them say my blood pressure is climbing fast. I have an oxygen mask over my face and they are yelling, "He's with us! He knows what do. He's coming back!" One nurse is putting her entire weight on my groin with her hands over the incision. She does this for what seems like fifteen or twenty minutes. The bleeding stops; the hematoma is reduced. Someone applies a large pressure bandage and everyone breathes easier. No one says anything, but we all know it was touch and go. Had I blacked out, I might have gone into cardiac arrest.

This little episode sets me back for weeks. I am severely anemic again, as my hemoglobin has dropped significantly, and I picked up an intestinal infection, probably in the hospital. I have diarrhea on and off for three weeks. I am tired and angry. Due to carelessness in sealing the entry wound into the artery, I almost died. Later on, I speak to the head of risk management at the hospital. She is very concerned and very apologetic. Others in charge are apprised of the situation. They review the standard post-op procedures. And put letters in my file. I am thanked profusely for bringing my concerns to the hospital's attention.

Can this or similar life-threatening events occur in the future? Of course. I'm no fool. I take my chances every time I am admitted for any hospital procedure. The hospital knows that. That's the reason I sign all the consent forms. Nothing is routine, in spite of what the doctors say.

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