09 November 2009

All I want for Christmas are my two front teeth . . .

Until I was about ten or eleven it seems that every hemorrhage I had was either my knee, usually the left, or something to do with my face. On one trip to the doctor after using my nose and mouth to break a particularly hard fall he asked me, "Have you got something against your face, son?" When I was a toddler all my pictures for about an eighteen month period show a large, bruised lump in the middle of my forehead.

Cutting teeth always seems to be a very worrisome time for the parents of guys with hemophilia. (For the record, I detest the word hemophiliac—I know it just means a person who has hemophilia, but I hate the way it sounds) Anyway, in my family, and for many others I've talked to it has always been almost disappointingly uneventful. My younger brother and I seeped a tiny bit around a couple teeth for a couple days and that was about it. At last report my grandson did the same.

This is strictly a layman's opinion, has absolutely no scientific basis, and is based on purely anecdotal observations of a few incidents (which of course means it is as well thought out as most miracle diets and bowel cleansers), but I think the baby's gums are programed to open and slide around the tooth which is why they don't bleed as much as you might expect. The next kid I meet will probably blow that out of the water, but until then that's my theory and I'm sticking to it.

The real fun started when you started losing your baby teeth to make way for the big boys. I seemed to have started later than some, and when I about ten I had a couple back molars that just refused to come out. I would worry it with my tongue until Mom caught me, and then start up again as soon she turned around. My parents tested its hold, and decided it was more firmly attached than they felt they could comfortably pull; and the local dentist agreed.

At some point it was decided that I should go to the hospital and have them pull it. My assertions that it really didn't bother me didn't seem to have any impact on the decision. So, I was admitted to the hospital, my arm was taped down to an arm board,   an IV was started and I was given some AHG. I would continue to get AHG every few hours for the next week or so. After dinner, which seemed to be heavy on the broth and jello, and fairly light on things like meat and potatoes, they hung the NPO sign over my bed, and I was officially condemned to a night of starvation. I didn't even get an evening snack, and I can't tell you the importance of the 8:00pm glass of grapefruit juice and the two gram crackers. Not only did the flavor clash between the juice and the crackers usually cause the muscles on the left side of my jaw to lock up; searching for the larger cracker crumbs could take up half the night. At midnight one of the nurse's aids took my water pitcher away, and made veiled threats against my immortal soul if I even looked in the direction of food or drink until after my surgery.


"Yeah, you are scheduled for surgery at 11:30."

"But I can't have surgery! I'm a bleeder!" This was awful. Worse.

This was around 1957or 1858. I had had one good case of tonsillitis a while back, and in a couple years I'd have a real bang up case of appendicitis with the Chief of General Surgery and my real hematologist checking me, in person, every hour. In both cases they gave me large, frequent injections of antibiotics, and were hoping for the best. At that time if you had hemophilia the only time you went into surgery was if it was certain you would die anyway. When they were trying to decide if my appendix had to come out I wasgiven the ever so encouraging pep talk of, "Don't worry, Guy, Dr Fry is our oldest, most experienced surgeon. He might not be the fastest anymore, but he is the most accurate. He'll probably be able to go in there and get that thing out through a 3/4 inch incision." I still have what's left of my tonsils, and didn't give up that appendix until well into middle age.

Around 10:30 that night an intern came in to do what he was supposed to do that afternoon but forgot. He explained that my tooth would be removed by an oral surgeon in one of the oral surgery operating rooms. It all had to do with, as Douglas Adams called them, clearly marked lines of demarcation. This was the removal of a tooth which meant the oral surgery department had to do it. Since it was their job it would be done on their turf. I felt much better. This was hospital politics as I had come to know them.

The next day I went down to oral surgery to have my tooth pulled. That morning they put me in one of those hospital gowns instead of the usual jeans, t-shirt and socks which meant I had to be very careful if I wanted to read lying on my stomach. I read comic books while the other kids ate breakfast. Of course it was my favorite hospital breakfast of scrambled eggs and bacon. Now, I wouldn't have been able to have my favorite breakfast anyway because when my mouth was bleeding I was always put on a light, clear diet. It was just the principle of the thing.  For those who might not have had the pleasure, a clear diet was exactly that. Everything they gave you was see through. It consisted of various arrangements of tea, coffee, 7-Up, consumé, broth (the distinction between those two was rather fine) and lots and lots of Jello, usually red.

Somewhere around 10:00 the nurse came in and gave me a fresh piece of the gauze to bite down on all the time. Whenever I came in with busted lips, a badly bitten tongue, or bleeding teeth they would pack my mouth with this gauze that tasted like highly medicinal crap, but crap none the same. On a normal day it would serve to clean your mouth of the taste of the consumé.

At 12:30 I got to watch the other kids chow down on what was my all time favorite meal in the hospital. It was bean soup. Now, contrary to popular belief the hospital made a number of truly excellent dishes. Their custards were wonderful, and the cream puffs beyond belief. They also made things that were not so good. The swordfish steak just looked completely wrong, and you only ordered the hamburger if you needed a weapon. But their soups were the best, if you didn't count the consumé and the broth, and the bean soup was the absolute best. Even the guys in the Senate Dining Room in Washington didn't get soup that good, and when I could have it I always got three bowls.

After a couple more delays two transporters came to get me a bit after two. They put me on a stretcher, and then put a blanket over me, and once again I began to feel this was going to be a much bigger deal than they were telling me. Leaving the ward we went down the main corridor to a corridor that crossed it at its center point. We turned left and after fifty feet or so stopped at an elevator. This elevator was strictly for taking patients to places they very often didn't want to go. You could go down to Physical Therapy, or X-ray or to the fourth floor and the surgical suites. As it turned out we went passed the fourth floor down to, I think, one of the basements.

Once in the right place a nurse had me change into an even cleaner gown, and she tied one of those surgical caps on my head so that it came down over my ears. Then they wheeled me into the surgery. In it was the largest dentist's chair I have ever seen, and from the chips and bangs to its enamel it didn't look like it had had a very peaceful existence. There was the usual pillar next to it with what appeared to be an extensive collection of drills, lights, trays and other things I wasn't real comfortable looking at.

On the trays next to the chair were several pairs of pliers of various sizes and more sharp, pointy things than I ever really wanted to see along with enough very large syringes to numb an angry elephant and have enough left to subdue any rhinos that happen by. And there, along side some pliers with jaws designed to get a death grip on just about any number of items, none of them body parts, were some saws. Saws for Hector's sake. They had brought in saws to take out a baby tooth that was hanging on to a bit of flesh the size of a obese rice grain.

A nurse done up in full surgical kit of scrubs, gown, hat, mask, and gloves was fussing with the placement of the sharp, pointy things. After a few minutes the surgeon came in and another nurse put his gloves on him, just like on "Medic" with Richard Boone. He also had the whole costume on. He was very serious, and said something to the nurse guarding the sharp, pointy things, and then he sat down on a stool and said, "Okay, young man, let's see what we're up against here."

By that time I was in the same mental state a deer in the headlights is in. I knew something was coming, but I didn't know what and I really didn't want it to happen but I couldn't stop it.

He looked in my mouth for a bit, wiggled the tooth with his finger, and then sighed. The nurse with the sharp pointy things was holding a syringe the size of my forearm in one hand. I swear the needle was at least ten inches long. In her other hand she had chosen one of the medium sized pliers, which to my eyes meant it was perfect for dealing with a hippo's tusk. "Oh, brother," I thought, "this is going to be bad." When doctors sighed like that it always meant they didn't like what they were going to do and it was going to hurt. The reason doctors didn't like doing those things wasn't because they were going to hurt, but because it meant the patient was going to be less than cooperative.

Then he completely confused me. He leaned back for a second and then took his cap off and pulled the mask down. Winked at me and said, "I think I can handle this." and before I could even wince, I felt a sting when he pulled the tooth out with his fingers. He looked at the tooth, looked in my mouth, put more of that bad tasting gauze where the tooth had been, said "Take care of yourself, champ." and left.

A few minutes later some transporters (two guys, not the Star Trek kind) took me back to 6-West.

I think the nurse was angry because she didn't get to hand the surgeon any sharp, pointy things.


  1. Hi! My name is Sara and my 2 year-old Evan is a hempohiliac (factor VIII, severe). He is the first ever in our family and this is a new, frightening disease for us.

    Anyway, I really enjoy reading your blog. It is nice to get the perspective of the one going through the actual disease than through the eyes of a parent.

  2. Sara, thank you so much for your comment. I have written my answer about five times now, but they all started getting maudlin so here we are with #6.

    I tell people I am one of the luckiest people alive, if you are a religious person you might say blessed, and they always look at me as if I might need therapy and a full time care-giver. "You spent about eight years of your life in the hospital either in agony or drugged enough to make Dennis Hopper envious, and you think you're lucky?" is the general attitude. And my answer is "Yes!"

    Aside from the fact I had amazing parents, wonderful teachers, and a Scout Master that knew how to help young boys begin growing into men. (Without all that icky stuff you hear about.) My grandfather had hemophilia, two cousins had it, and my younger brother and I had it. We were spreading it around more than European royalty.

    What that gave us was the knowledge of what we could expect, and how to cope with different bleeds. When things got real rough it taught us that even those things could be survived, which then gave us the will to fight on. If grandpa could get his teeth pulled with nothing to treat it but plug chewing tobacco and occasional injections of my aunts and uncles blood directly into the tooth socket, and come out of it three weeks later a little pale but none the worse for wear (if you didn't count the grouchy attitude); then for Hector's sake I could make it through getting a baby tooth pulled.

    My wife says I can never say anything in less that seventeen subordinate clauses, but what I'm trying to say is that if you get a good hematologist and trust him or her, let your son be a boy and know that part of your job will be putting him back together after a more poorly thought out attempt--it's a fine line you have to walk, between protecting him from not only the world, but himself, and yet still allowing him to discover his own limits. If you can do all that you will have a son you can be proud of. I tell you, sometimes being the bleeder is the easy part, and being the parent is the part that sucks.

    If I haven't scared you off forever, please write again. Let me know how you are coping, and if there is any moral, emotional support I can give you. And most of all ASK QUESTIONS! Join "MyBloodBrothers", pester me, join your local hemophilia association, pester me. You are not alone, and there are a lot of us, me for starters, who would love nothing more than to share our stories with you. Believe me my family is tired of them, and would probably pay you to take up some of the slack.

    Good luck, Sara. I will be thinking of you and Evan. (I only have one grandson (severe factor IX like his grandpa and great grandpa) so I'm always looking for little ones who might like a pretend grandpa that looks like Santa.

  3. I am so glad you wrote back! I cannot tell you how much it means to hear that you feel alright with the disease that you have. You know, as a parent, you are born with a crazy idealism of what your life with your child will be like and hemophilia has really rocked that for us. Evan has an older brother (who is 11) that does not have hemophilia. So all of this is so new...and we all want to foster an upbringing for him that allows him to be himself while trying not to classify him as just a hemophiliac.

    Evan did have a subdural hemotoma last November and it threw us into the real possibility that this disease could be more powerful and detremental than we have originally thought. I really think I lived the first 15 months of his life in a semi-denial state. Since his bleed we have had a couple of seizures and placed a port in his chest. He is amazing with his infusions and gets really excited about them. His personality is very relaxed and easy going and I just know that he will be able to take this all in stride and learn how to self infuse before he is 10.

    Thank you for allowing me to use you as someone to come to when I need help or advice. And I am involved in my local Hemophilia chapter...I have met a lot of amazing people and look forward to doing more fundraising for them.

    If you're interested I have a blog about Evan. I don't update as much as I should, but feel free to read and comment and see him. He is pretty cute, if I do say so myself =)


  4. I am likewise glad you answered my comment. I'm sorry it took so long to answer it, but laziness, a couple of small emergencies with my mother, and those pesky holidays seem to get in the way.

    I do seem to be okay with the hemophilia. I think in the modern parlence I would say I have taken ownership of my bleeding; which is just as well because it's kind of a difficult thing to pass off to someone else. The fact that I am conjenitally flippant doesn't help.

    I think the reason I have been able to accept hemophilia as just another part of my life like being left handed and bad at algebra, is the matter of fact-this is how it is attitude my parents had. Being a bleeder didn't get me treated differently or give me special dispensation to skip my share of the work. It just meant that there would be times when I would very much want to think three or four times before doing something completely stupid. I had to be a bit more careful during or avoiding certain activities .

    It's not a good example, but I very seldom got into fights. Not for the usual reasons, but because I knew with a certainty that win or lose I would be going to the hospital. So the reason for the fight had to be worth a five or six week hemorrhage before I would take part. Once or twice it was.

    We have a problem. Everybody has some kind of problem. Making the little setbacks we have seem like meladramas fit for a soap opera helps no one. A lot of what's going to happen to us is not nice. It hurts, it can be crippling, and it always happens at exactly the worst time. (I only made it to two high school dances.) But if you give him the support needs, and have the confidence that he will succeed he will come out a winner.

    I keep saying to anyone who will listen. The blog entry entitled "You Know It's Your birthday" is a true account of my first trip to the hospital. The names have been changed, as Jack Webb used to say, to protect the innocent. But I had absolute trust in my parients, and I knew they would never leave me in a situation that was bad for me or I couldn't handle. So when they left me in the hospital that first time, and most of the times after that, I was scared, but I knew I was okay. That is the confidence you need, in my opinion, to instill in Evan. The ability to recognize the fear, and the confidence to know he can work through it. It probably won't be very much fun, but he can work through it.


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