Thursday, July 23, 2009

Medical Miscreants

The half-witted Gastroenterologist I last wrote about just skims the ineptitude that lingers in the dark recesses of our brilliant, very costly, and extremely inept medical system.

Perhaps the most dangerous of these medical miscreants was an ICU resident, Dr. K., at UPMC (Univ. Pittsburgh Med Cntr,) whom I had the misfortune to come across in 2000, when I had my dual transplant (kidney-pancreas.)

I received the all-important call while on the loo; I didn’t know what to do first – pull up my trousers or leap for joy! Soody, my wife at the time, took control and got us to UPMC in quick order – with my emotions overwhelming me every time I had to talk to anyone. As soon as we crossed the Center’s threshold, I was thrown into a spare hospital room’s bathroom, had a tube up my bum, and before I could say, “I’m sorry but do you have the right person!?” I was double enema’ed, body shaved and chatting with various nurses, technicians, the surgeon, and the anesthesiologist in pre-op.

The surgery took 10 hours. They had to remove my original kidney transplant, insert the new cadaveric kidney, and then insert and attach the new cadaveric pancreas – the pancreas is a wobbly little thing with multiple attachments and takes a long time to go in.

I seemed OK at first in post op. Then my blood pressure was off and they moved me to ICU and gave blood – several times. This is where things started to go wrong. ICU, for those of you who’ve not been there is not a place you get better in; it’s a place that deprives you of sleep as you get poked, blood pressured, and attached to machines that beep constantly and are designed to keep you awake. It is a place you try to escape from so you can actually try to sleep and recover. Fortunately, my ICU nurse, Marjorie, was a joy. A kind, and attentive nurse, she worked at getting me some quality sleep and care.

Enter Dr. K., the resident “in control” of my case. After a couple of days, and several blood transfusions, I had started vomiting. K. insisted I had stomach problems and ordered an NG tube. If ever anyone suggests putting an NG tube into you – run for the nearest exit. You are awake while a doctor thrusts a too large tube up your nostril, past your (gagging) throat and finally down into your stomach. If only you were given a mallet to whack him on the head as he does it – that would even the score a bit. I could tell from K.’s forceful ineptitude that he had been one of those children who failed the round peg in the square hole test and broke the toy instead. After one attempt he had my right nostril bleeding, so he tried the left. Painful success finally ensued. Unbelievably, the next day he took it out as it wasn’t working. Then he proposed to do it again (and by this time I wasn’t able to breathe very well.) I said, “NO! Go away!” Luckily, he was shortly replaced by the chief surgeon, who’d returned from time off. He took one look at me and rushed me to the operating room, apologizing that he would have to split me, from stem to stern, up the middle. It seemed an odd time to be asking me for forgiveness as I was barely conscious but I took the mask off and said, “as long as it works.” Two hours later the leaking pancreas graft was repaired and my abdomen emptied of blood like a boat’s bilge.

I never found out whether K. made it into transplantation as a specialty, and I really dread to find out the answer.

The kidney transplant had a mind of its own, 3 months later I was back at UPMC fighting rejection again. But it wasn’t going to stay and after 3 years I was back on dialysis. I am extremely fortunate to have friends like John Schlesinger and Margaret Rowe, a married Brit/Irish couple who both tested to donate to me. It is hard to say how much that 2004 gift from John has meant to me, or how high it ranks in the heavenly scale of human altruism, but I am always aware that John’s gift has made my life longer and better. God bless him.

The 2000 pancreas cured my 27 years of type 1 diabetes and is still going strong after 9 years, a good record for pancreatic transplants which I’m told usually average 5 years.

Thanks to both the pancreas/kidney transplant and John’s donated kidney I’ve been able to volunteer at Ground Zero’s relief effort (St. Paul’s Chapel), volunteer coach Special Olympics, move to Brooklyn, get remarried to a lovely woman - Diane, plant a wedding fragrance garden, establish a valued friendship with Soody, direct several plays, fight cancer, and with the help of friends, Steve and Chris, build a kayak. I am so very lucky and yes – it’s a great day!

Tuesday, July 7, 2009

Bowel Me Over

Pain medication can bring blessed peace. Like the calming sensation of a warm bath stroking your neurons, soothing your synapses, cooling your brain. It’s a cancer patient’s indispensable sidekick. But it also has another less desirable effect, the cure for which Jamie Lee Curtis chirps about with irritating “regularity” – constipation!

There is unsettling about the oncology nurse’s inquisition when it goes from “are you in pain?”, (of course, and it’s either from the cancer or the treatment!) to “when did you last go to the bathroom?” The question seems out of place, a brain fart almost. But, without batting an eye, you answer “yesterday,” or “three weeks, two days and five hours ago,” and groan.

Suppositories, enemas both water and mineral oil, Senna tablets, Docusil, Milk-of-Magnesia (where is ‘Magnesia’?), magnesium citrate are the OTC (over the counter) remedies and it’s up to you to find the right balance. But sometimes another drug or treatment conspires with the pain meds to ambush your best defenses, and then you get an impacted bowel, as I did a few weeks ago. I’d rather call it a painfully immovable, over-stuffed sausage angrily meditating above your groin.

Admittedly, we were slow to ask the right person for the OTC cure so we threw suppositories and water enemas up there like shoppers at a Prada sale. I consumed the oral options too but the angry Buddha had shut down my entire gastric system, so they came back rather quickly. The answer turned out to be mineral oil enemas. Days later I was back chirping with Jamie Lee.

Of course anyone with half a brain is asking themselves, “why didn’t he speak to a gastroenterologist?” Well I tried. First my old GI didn’t take my insurance anymore and I hadn’t developed the sort of doctor – patient relationship with him that enabled a quick email or call (more on the vital importance of this in another post.) So then I asked both my primary doctor and my Chemo doctor, both of whom recommended a visit to the emergency room if it continued – a very expensive option that vacuums time like nothing else in the world. So I set about getting an appointment with a new GI.

Visiting a new specialist doctor, in New York City at least, is like landing on an orbiting planet – you have to wait for months for an opening. Call after call resulted in, “are you a current patient? No? He can see you just before hell freezes” or words to that effect. Frustrated, I emailed my oncologist for help. A week later I was sitting in the GI’s waiting room and since my crisis had ‘passed’, I was there for a general plumbing check.

In walked nattily dressed Doctor X carrying my freshly minted chart. He asked for my problem. I put my speaking valve on my tracheotomy and explained, in my difficult to understand voice, what had happened. As I was talking, he was reading my chart - this unnerves me because it’s like driving and talking on the cell phone, you don’t have undivided attention. He read my Medical History (written and printed at home, it’s an invaluable one page, medical summary that includes a medication list - saving a great deal of time with doctors’ and hospitals’ forms.) He expertly prodded my belly, announced I no longer had the impaction, and prescribed a drug and a colonoscopy, saying, “my assistant will arrange that with you for next week.” I didn’t bother with a peevish “I told you already it was gone,” but did reminded him that I get nausea for a week after each chemo dose, so it might be better for me to try to chug the reservoir of liquid required during my week off. Then he was out the door.

This all sounds proper. BUT, and this is my biggest concern with doctors today, I never really had his attention. He said all the right things but didn’t respond to the individual variations of my case. Later I found the medication doubled my chemo’s nausea and it wasn’t necessary since I was no longer impacted by the impaction. This sort of half-wittedness may just be the result of insurance income pressure. Many doctors today leave 15 minutes per patient or less, to keep up the frequency of reimbursements or just because they want to serve as many as possible. But that is not the doctor for my colonoscopy.

Here ends the blog on bowels and consternation. Thanks for reading and have a great day…after all the cats are happy with this great weather!

“I am Sir Brian, as bold as a lion!
Take that! – and that! – and that!”