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.


Blogger Flash said...

I'm glad everything is going great so far. DN1 has my best wishes in everything...

10:12 AM  
Blogger LL said...

I was hoping for better news, but alas, I'll keep waiting and hoping for it.

Give her my best.

3:53 PM  
Blogger rennratt said...

Which chemotherapy type drug will she be taking?

One of the most popular is methotrexate, which is used more for arthritis than cancer these days.

My thoughts and prayers are with your daughter - and your entire family.

3:42 PM  
Blogger NYPinTA said...

I wish I had something usefull to say.
I'll keep thinking good thoughts for her and a speedy transition to health.
Glad the Doc gave you some confidence in his abilities. And I think she's lucky to have you too.

12:49 PM  
Blogger Beth said...

I also was hoping for a miracle cure. I found your hospital stays pretty enthralling (especially the kidney incident). If nothing else, your life has shown you there is always hope.

Keep these updates coming!

1:23 PM  
Blogger fermicat said...

I work in the medical profession (as a science person, not a medical person), well insulated from actual patient contact, and this is the side of things that I do not ever see. I am sorry that it has been such an uphill battle. I wish Dr. Strangelove success in figuring out the optimum approach. But mostly I wish your daughter will get well.

7:57 AM  
Blogger Farrago said...

I find it interesting, on this path of life, how we realize that a certain amount of wisdom has come to us. People our age, sometimes without realizing we do it, are able to see the bigger picture, the longer view. We just know that patience will prevail. Or we know when it's time to light a fire under someone's butt.

And you've shown it here, Schprockie. Your instincts about the doctor, and your level of comfort with him allowed you to convey and transfer that calmness to DN1. She was dwelling on the now, on the only doctor to whom anyone was accountable, on the guy who only seemed to be scratching his head while he looked at her chart. But you gave her perspective. Reason. Hope.

What a great Daddy you are!

But before you need to call a carpenter to widen the tops of the doorways in your home, there's one thing I must say...

As one of, and on behalf of, the "most irreligious" of which you speak, it is not the "holiness" of a famous cathedral or mosque that renders us "meek," but more a respect and consideration for others around us ...and maybe a little of the reality that sound in such places reverberates quite dramatically, where even the quietest disrespecting comment can be heard throughout.

Sorta like the first shot from Custer's men at Little Bighorn.

8:40 AM  
Blogger trinamick said...

That's gotta be terribly frustrating for her. I'm afraid I share her lack of confidence in doctors. I'm glad she has you there to help with the positive attitude. Hope things improve soon.

9:13 AM  
Blogger Kathleen said...

I have faith in some doctors. I've decided I have no faith in my orthopedic surgeon, so I'm cancelling my surgery. On the other hand, I love and adore my neurosurgeon and recommend him to everyone!

I hope and pray that Dr. Strangelove finds the magic pill that cures DN1.

I didn't get ice cream when I got my tonsils out because they had just determined that it wasn't good for that. I got stupid nasty popsicles. I feel slighted to this day!

And I have a feeling your IQ can compete quite well with your cycling doctor friend.

12:14 PM  
Blogger Farrago said...

s c h p r o c k ! !

I'm in Boston week of October 14...not sure which dates exactly, but definitely through mid-week.

Looking forward to you showing me around to sample the best oystahs and clam chowdah!

1:05 PM  
Blogger magnetbabe said...

I've had enough experience to know that doctors aren't gods and that medicine is still part science and part voodoo. But my classroom knowledge has also taught me that we should be in awe of the things that actually work sometimes. I can see both sides of this, especially DN1's frustration, but ultimately staying positive and hopeful is more productive. I really hope to read good news from you soon.

11:49 AM  
Blogger Scott said...

It took me long enough to see this, Mr. Schprock. Your advice to your daughter was very sound, and I know she appreciated it. I would be scared and mad too if I were her. But you kept her focused on the only important aspect, getting better and what path to take. She's lucky you had that talk with the doctor. You stood up for her.

9:26 AM  
Blogger SzélsőFa said...

now that's a tough decision. Keep us informed as far as you can.

2:34 AM  

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