Saturday, September 15, 2007

Of Hospital Stays and Things Medical

When I was very young, I believed doctors to be on a par with wizards and gods, and in my mind I granted them an infallibility no other mortal possessed. If I ever thought of it, I probably would have had sense enough to know the president of the United States could make a mistake or two, and that the pastor of my church, who could appear quite holy and the very mouthpiece of God while he preached on high in the pulpit, was certainly capable of a blunder; I had already learned my parents, though nearly always right, every now and again slipped up; but my childish faith held that doctors knew all and invariably did the right thing.

In my life, I have been admitted to a hospital twice: once when I had my tonsils taken out when eight years old, and later when I was twelve and nearly died of a sledding accident. In both those incidents the doctors and the medical staff supported my notion of their infallibility simply by diagnosing my ailment correctly and making me feel better in a short amount of time.

In the first instance, my tonsillitis was already over when the time came to have them taken out — back then, you must understand, it only wanted the slightest excuse to have them removed. When the big day arrived, my parents woke me up early and drove me to the hospital without having breakfast first — those were the doctor’s orders. I was excited because I knew my reward for being a brave boy was a toy microscope and all the ice cream and ginger ale I wanted; it was just like a holiday, a trip to someplace fun where I’d be treated as if it were my birthday. One can only imagine the poor recompense the microscope and promise of endless ice cream made when I awoke from the anesthesia with the worst sore throat I ever felt. I can recall idly thumbing the sad little mirror of the toy microscope, watching the reflection it made of the pattern on my hospital johnny and wondering how I could have ever thought this would be fun. No microscope and ice cream was worth this. But I did get better and no tonsils ever bothered me again.

When I was twelve I had what was termed a “freak accident” — I hit a tree on my sled just right so I irreparably ruptured my right kidney and needed to have it removed. To this day I have a long scar that starts a couple of inches from my navel and winds its way around my side to the spine. I suffered severe internal bleeding and needed to be operated on at one o’clock in the morning. My chances for survival were rated no better than 50-50; the doctor told my parents it was touch and go, and having a priest or minister handy wouldn’t be considered overdoing it, just the sort of news parents fear most to hear. I pulled through however, and, after three or four days of feeling very sick in the intensive care unit, I was put into a regular hospital room and hugely enjoyed having my own TV and eating the hospital food, which I thought was quite good. They placed me in with the adults, and the nurses, used to aggrieved, complaining old men, made a fuss over me and cheerfully supplied me with paper and crayons and snacks. The entire stay was nine days, and then I convalesced at home for a month and a half more. I missed a tremendous amount of school; when I returned, everyone wanted to hear my story and I found myself in great demand. Even the bullies seemed interested in what I had to say and cut me some slack.

Of course, my notion of the infallibility of doctors has long since passed, but I still to this day have enormous faith in the medical establishment. I consider myself blessed to live in Boston, which is considered a medical mecca. Doctors to me are no longer wizards and gods, but they still are highly respected and talented men and women who have worked very hard to attain what they have. A good friend of mine who I cycle with nearly every weekend is a doctor, and, although we have had many enjoyable chats where we have conversed and exchanged ideas as equals, ever-present in my mind is the fact that this man is a doctor who went to Harvard and his IQ and accomplishments can beat up my IQ and accomplishments any day of the week. When in a hospital, I am comforted by the professionalism I see, the long white lab coats, the stethoscope slung over the neck, the breezy, assured manner many doctors assume when dealing with the very sick, making their patients think their cases are quite controllable and even deserving of a jest from time to time. I like the orderliness and cleanliness of hospitals, for that implies seriousness of purpose. Even the most boorish visitors know without being told to be on their best behavior, as if they are entering a famous cathedral or mosque where the immediate hush and sudden grandeur can make even the most irreligious feel the holiness and render them meek.

Bearing all this in mind, I wish to draw your attention to Daughter Number 1’s case, who, as you all know from the previous post, is suffering from nephritis; or, more accurately, nephrotic syndrome. It is a chronic disease that mostly occurs in children, where the filters in the kidneys stop working properly and an inordinate amount of protein is “spilled” out through the urine. Steroids are very effective at stopping that, but the side effects can sometimes outweigh the benefits, as has unfortunately been the case with my daughter. Last Monday my wife, DN1 and I met with her doctor, Dr. Strangeglove, to discuss which course of treatment we should try next.

DN1 does not share my awe of the medical establishment. Where I see a dedicated team of healers, she sees the keystone cops. During her last protracted stay at Children’s Hospital, DN1 witnessed an endless parade of specialists who each examined her and made, in DN1’s judgment, out-of-context medical pronouncements of this and that without first consulting with the other specialists. There seemed to be an overall lack of concert in what they were doing. In time, DN1 grew quite restive and querulous, sometimes becoming rude to the nurses and, I am afraid, to her mother as well, who was always there with her and tried her best to be DN1’s advocate. Since the beginning of her illness some nine months ago, DN1 faith has eroded down to next to nothing. Her main complaint is this: I have done everything they’ve asked me to do and I’m not any better — in fact, I’m worse. I just needed to have a perforated ulcer fixed because of their incompetence!

So far during this long illness only DN1 and my wife had met with Dr. Strangeglove, but last Monday, as I said, it was my turn to meet the guy and ask him some questions. Foremost in my mind was this thought: if DN1 was George Bush’s daughter, would she still be suffering from this nephrotic syndrome? Has the proper amount of consideration been put to her case? How much does he really care about our daughter?

The appointment was for noon, but we didn’t actually see Dr. Strangeglove until 12:45, which, DN1 said, was the norm. When Dr. Strangeglove finally strode into the small examination room, we met a rather stout man in his fifties who spoke with a mild Lebanese accent and who seemed at once both humble and authoritative if you can imagine such a thing. During our interview with him there was never any sense being spoken down to, but we could plainly see the confidence the weight of his credentials gave him. I suppose it was a case of someone being comfortable in one’s own skin. I don’t think we necessarily attacked him with our questions, but there was an air of confrontation in the room which I think he picked up on and wasn’t disturbed by. Without going into needless detail of our lengthy talk, at the end of the appointment I was impressed with Dr. Strangeglove and felt glad he was our daughter’s doctor.

DN1’s case had indeed been preying on his mind and Dr. Strangeglove on several occasions consulted with his colleagues about her. He agreed that recent events called for a different course of treatment and recommended using an anti-cancer drug that had, among its known side effects, a small chance of causing infertility and hair loss. I asked if that was Plan B, what was Plan C? Plan C, he informed us, was an anti-rejection drug whose side effects were less severe. In both cases, he pointed out, the dosages used would be far less than those prescribed for cancer and transplant patients; when reading the drug information — which, incidentally, contained a lot of scary language — he warned us to keep that in mind.

DN1’s attitude toward Dr. Strangeglove was not much improved when I told her that I came away liking him and that he had my full confidence. As much as I hate to say this, and as strong as DN1 has been throughout this entire ordeal, and as ill-equipped as I am to empathize with her not having suffered as much as she, I felt justified in telling her to not indulge too much in self-pity, because that never helps. Things could be much worse: she could have lost an organ and possibly her life. Children’s Hospital is filled with cases far, far worse than hers. As dissatisfied as she was with the treatment, I asked her to imagine where she’d be if nothing was done at all. And, I added, as advanced as modern medicine is, with all that is known and with all the wonderful techniques and marvelous equipment now available to put us frail humans on the mend, it is still nearly as much an art as a science as it ever was; doctors still must rely as much on their instincts as they do on what the medical journals say. You have to have faith in Dr. Strangeglove’s judgment, I told her. Of course, in her emotional state, this was hard for her to accept, but I think she understood.

Last Wednesday, DN1 met with a counselor and seemed slightly buoyed in spirits after the session was over. The main thing she took from it was the idea of focusing on what can be controlled, which I think is good advice for us all. Sometimes she’s in a good mood and other times she’s down in the dumps. We’re still deciding which treatment plan to go with (ultimately, of course, it’s DN1’s decision) while she continues to go to school and prepare to resume her part time job as a mental health professional at a nearby children’s hospital (not the Children’s Hospital, but another one). She is carrying on and coping, and I am very, very proud of her.

Thursday, September 06, 2007

Regarding Daughter Number 1

People acquainted with this blog (which may or may not exceed the amount of fingers I have on one hand) know that I refer to my daughters as Daughter Number 1 and Daughter Number 2. Not only do I use this handy numbering system to keep track of just how many daughters I have, I also use it to keep straight which is the firstborn and which came second out of the chute; hence we have DN1, who is 20 years old, and DN2, who is 16. DN1 is a girly-girl and DN2 is a tomboy, and, for a few years there, DN1 thought her father was terribly uncool, while DN2 still hangs out with your humble servant and shares some of his interests. I think for that reason DN2 tends to get mentioned a little more in this space, but today the focus will be squarely on her older sister.

DN1 suffers from nephritis, a weird kidney ailment that first manifested itself nine months ago by causing her to retain water. At first DN1 thought she was simply putting on weight, but soon realized otherwise when she noticed that the weight she was gaining didn’t distribute itself evenly, concentrating mainly in the legs. One day, for example, she’d wake up and have a normal-looking left leg, while the bottom part of her right sported a disturbing looking “cankle.” Finally her mother took DN1 to see her primary care physician and the next thing she knew, DN1 found herself in Boston’s famous Children’s Hospital for a five-day stay.

Her kidney doctor (whom we shall refer to as Dr. Strangeglove) took a while to diagnose, but finally hit upon nephritis, which simply put is an inflammation of the kidney. The treatment plan called for a low-sodium diet, a daily one liter restriction of fluids, and the ingestion of several strong drugs including steroids. The steroids in particular have had a profound impact upon DN1. They make her moody and can sometimes change the shape of her face. Some days her eyes get puffy and a little slitted, and other times the bottom half of her face and neck gets swollen, as if she had gained weight in her head and nowhere else. Fatigue has also been a big problem, making standing and walking a chore at times. However, through it all, DN1 has kept up an aggressive schedule of attending college and working part time. When school let out for the summer, she picked up another job and has worked nearly every day for the last two months.

During that stay at Children’s Hospital, Dr. Strangeglove led us to believe that this condition — rare in adults — was extremely curable. And, in fact, after a couple of months of treatment, the symptoms did indeed go away and DN1 was given a clean bill of health, allowing her to work out at the gym again and drink as many fluids as she wanted, as well as eating whatever she desired no matter how salty. However, the symptoms soon returned with a vengeance, and this time she and Dr. Strangeglove agreed on resuming the program, only for a much longer period of time and possibly lasting until December.

The drugs she’s been using to combat the nephritis are, as I said, extremely strong. Everyone hears all the bad stuff about steroids these days, how brutal they are to the human body, and here DN1 has been taking them every day like Flintstones vitamins. She of course does not like the drugs and bridles at how physically inactive the treatment plan has made her, but DN1 has toed the line and stuck to the program while trying hard to maintain a tenuous hold on her faith in Dr. Strangeglove’s abilities. However, in the early hours of Friday, August 24, the steroids apparently took their toll on her system.

DN1 woke up at around 1:30 that morning suffering from a severe abdominal pain. She tried to be patient and see if it was just a passing thing, but the intensity wouldn’t let up. Finally she got out of bed and woke up her mother and the two of them made the decision to go to the hospital while I peacefully slumbered on. Once the missus dressed herself and finished all the necessary primping to enable her to be seen in public, she woke me up to say she and DN1 were on their way to the hospital. I responded by saying, “Whuh? Huh?” Then the missus instructed me to go back to sleep which, being the concerned father and dutiful husband I am, I straightaway did. What a dad, right?

It turned out DN1 had a perforated duodenal ulcer, very nasty, and the MRI they used to diagnose it also revealed a blood clot. Now, no one can absolutely prove the steroids caused all of this, but come on, how many 20-year-olds develop ulcers and blood clots on their own? The surgeon performed a tricky and extremely tedious, minimally-invasive laparoscopic operation that left four small holes in her abdomen. Explaining the procedure, he told us that in the old days, back when they just cut people open, that surgery would have taken two hours less to do, but as the recovery time required two weeks more, the extra length and tedium were well worth it. What he essentially did was put a patch on the rupture to the duodenum and declared she would never be bothered by that problem again — the patch job was for keeps. However, DN1 still had to recuperate and, as far as the nephritis went, nothing changed.

It is difficult for a parent to witness discomfort in his or her child. Seeing your kid in the recovery room still loopy from the anesthesia with a tube running up her nose, an IV tube stuck into her arm, and a catheter draining into a bag, you’re torn between the comforting assurance of knowing your little girl is in good hands and the frustration of seeing her laid low and not having the power to fix things immediately, right there on the spot. DN1 is a woman now, albeit a young woman, but in a sense she’s still the baby the missus and I brought home from the hospital back in 1987. When I was 20 I never had a tube up my nose and a catheter running down my leg, so why should she? Everything seemed wrong and unfair.

DN1 wound up staying at Children’s from Friday, August 24, to Saturday, September 1, which is a pretty long time to remain cooped up in a hospital room. Her mother packed up her clothes and moved in with her, at night sleeping on a chair designed to unfold into a bed. DN2 and I made daily visits, occasionally enjoying the fine cuisine offered in the hospital cafeteria, and otherwise making light banter from either side of DN1’s bed in hopes of dispelling the blues that sometimes pervaded the room; DN1, for the most part, was strong and kept up an optimistic outlook, but every once in a while she broke down and cried when rosy estimates of an imminent discharge from her antiseptic prison were proven false. She was a good patient and informed herself well of her problem and assisted the nurses in her treatment. A constant companion to her was “Bob,” the name we gave for the vertical, stainless steel wheeled contraption that had an IV tree at its top and three ticking, beeping machines clamped to its long pole pumping medicine into her body. Wherever DN1 went, Bob went with her: into the bathroom, walks around the floor, everywhere. Good old Bob. Damn you Bob.

DN1 is home now and started college yesterday. She gets fatigued easily and has to pace herself carefully. Twice a day she needs to inject an anti-blood clot drug through a special patch in her abdomen, and, of course, she has the usual assortment of pills to swallow. DN1 doesn’t complain much, but this is a cross to bear, especially for someone so young. I feel very proud of the way she is carrying on and admire her for it. She’s quite a kid.