Sunday, January 17, 2010

What's BOOP, Betty?

When the going gets tough, the tough get writing...

I received three letters in the mail ordering evaluations of some of my medical conditions. In order for this to take place, my doctor had to write a series of health service referrals. I've had lots of them written on separate occasions, but this was the first time I stood a chance of having any of them come to fruition. Because my platelets, red blood cells, hemoglobin and hematocrit have been low for a long time and I am anemic, one referral was to see a gastroenterologist. I never showed any signs of internal bleeding, but because of those issues and the fact that my liver and spleen are enlarged, I also received a referral to see a hematologist/oncologist.

When I was in the hospital with pneumonia in December of 2008, chest X-rays taken then and in later outpatient ones showed a growth of some kind in my right lung. This was classified as parenchymal disease, which really refers to a group of lung diseases affecting the interstitium, the tissue and space around the air sacs of the lungs. Over the last year, I've gotten a series of referrals to see a pulmonologist, too. No surprise there.

Last, but not least, the biggest daddy of them all, the one dealing with my most important health problem, were referrals to see a cardiologist, which I did see several months ago to the tune of $200 to tell me to go and get a nuclear stress test, which runs into the thousands. With no health insurance, that's a lofty goal for a high reaching middle class underachiever like me.

Needless to say, I continued to work behind the scenes applying for grant funding, so I can't be all that stupid. I figured, what have I got to lose? Recently, my work paid off with a letter stating that money may be available. I had gone back to my doctor quite often during this time because the diabetes was getting progressively worse and it was a rather fast decline. With diabetes, this is not unusual. The pancreas takes a deep breath and says I'm outta here. Within a matter of weeks, I went from Glipizide (or Glucotrol) to Januvia, both oral medications, to Lantus insulin. I will continue taking metformin pills, which cut glucose production in the liver. I asked my doctor to write new referrals for the four specialists. I had no idea which one or ones I would be able to see, but if she had a wish list for any one of them, which would it be? Hands down, and as I suspected, it must be the cardiologist, so that's what I told my funding consultant. Within weeks, I received three letters. One was for a pulmonologist, one was for a gastroenterologist/liver consultant, and one was for a hematologist/oncologist. No heart doctor was on the horizon, but hey, I can't look a gift horse in the mouth. When I saw my doctor recently, she was happy that I was seeing those three. Three out of four isn't bad.

One thing I must make clear is the fact that diabetes is a disease that kills. A lot of people like me who have type 2 may not know it for a long time, up to 8 years. Meanwhile, damage to one or more major organs is being done. In my case, as of now, diabetes hit my heart rather hard, or so the doctors think. That is why seeing a cardiologist is so important. It's bad enough that at 57, I'm taking Coreg and Zetia, plus 10,000% of the adult daily dose of niacin for cholesterol. And, I carry nitroglycerin with me everywhere I go. Look, if I told you all the medications I take, I'd bore you, and as a writer, that's not my job. Nor is it to elicit sympathy. No, this is to warn people about the perils of smoking cigarettes and one other remarkable thing you'd never guess about in a million years. I smoked for almost 40 years and when I was 16-years-old, my doctor told me I was the last person on earth who should ever smoke. He was emphatic. You see, when I was about one-and-a-half years old, I spent a month in the hospital with bronchitis and I got it every year until I reached adulthood. Because I had a lot of chest problems growing up, a Vick's Vaporizer in my bedroom at night was a frequent fixture.

Back to the present. I will skip the gastroenterologist. Last Monday, I went to see the pulmonologist. The first thing a nurse did was walk me around the outside perimeter of the office, which, by the time I stopped walking, was larger than I thought. She stuck a thimble-sized monitor on my pointer finger while she held a meter. The meter showed a rapid heartbeat but a good oxygen flow from my lungs. How a finger thingy can do that is beyond me, but she wouldn't know how to use Photoshop like me, either. One of the heart conditions I have is tachycardia, or a rapid beat. When I rested in the room, I waited for the doctor, but first the nurse asked me a series of questions. She wanted to know how long I had been a smoker. She had basic records from my clinic and she asked about those chest X-rays. I told her to call Boston Diagnostics. They found a growth or something in my right lung. Maybe it was Florida Hospital, too, but Boston had the latest ones. A while later, the doctor did come in and he examined me and asked me a series of questions about working conditions and breathing any chemicals. That sort of thing. I have had problems taking deep breaths for a long time. I quit smoking 27 months ago and it never went away. Sometimes, it's worse. Of course, he mentioned COPD and emphysema, but to cut to the chase, he told me the heart and lungs work hand-in-hand and he thought my problem was probably heart related. Of course, he hadn't looked at my chest x-rays yet...

Fast forward to Monday. I had an 11:35 am appointment to see a hematologist/oncologist at the Mid Florida Hematology & Oncology Centers, PA in Sanford. Not 11:30 or 11:45, but 11:35. I promptly arrived at 11:32. Or was it 33? The waiting room was large enough to hold a couple of dozen people and it was packed. This was going to take me forever, I thought, but you know? I'm glad it did.

If you've ever been to a Waffle House restaurant, you know that the wait staff always greets you as soon as you walk in the door.

"Good morning!"

"Good morning!"

"Good morning!"

That's pretty much what happened to me. They were the friendliest group of people and for the most part, they all seemed to know each other. One observation I made was that some of the nurses wore face masks. Sure, I know they wear them sometimes, but not like here. As I panned across the room, I noticed some people were in wheelchairs. Within minutes, a frail, bald-headed, man wheeled toward me, pushed by another man. I arose to open the door for them and the closer he got, the more I saw it was not a man at all. It was a woman!

There was a very friendly man sitting in a wheelchair nearby. He seemed to be the "leader" of the group. I asked him if they received chemo here and is that how everyone seems to know each other. Yes, he replied. That woman I opened the door for had just received a chemo treatment. Roy, his name was, told me they come in every week. I asked him how long he had been coming to this place and he responded, "Two years."

"Every week?"

"Yes, every week."

"So that's how you all know each other. It's like a club."

"Yes, that's exactly it."

Roy said he has bone cancer. The most interesting thing to me was that, for the most part, you'd never know any of them were sick. Some, of course, but not most of them. It was very encouraging to see people willing to undergo toxic treatment, week after week, in order to live, and they seemed like a very happy and positive bunch.

I waited for about 45 minutes before my name was called. It took me a good 15 minutes to fill out all of the papers I as given when I initially walked up to the counter, so the half hour wait was mooted by the friendly dispositions of the waiting patients. When I walked into the inner offices, the nurse weighed me and guided me to a room. I've gained 10 pounds since going on insulin and that means its working. The nurse, Amy, asked me questions that are more routine to me now, because I am so used to seeing doctors. I told her about the chest X-rays. Fortunately, I had taken a card from the pulmonologist's office. Pulmonary Practice Associates, Pulmonary and Internal Medicine, it said. The nurse left and I assumed she was calling that office. It's always here that it becomes tedious and boring. It's the wait in that room with no nurse or doctor, and in this case, no magazine to preoccupy myself with. Finally, my doctor walked in. Dr. Rene Carbeza. He asked me more questions. He listened to my heart and lungs. He looked at my ankles. I also have PAD. He didn't seem to be concerned with the blood problem. He zeroed in on my right lung. It didn't take long for me to realize he had talked to my pulmonologist.
"I'm going to take some blood, but I don't think your platelets are low."

Toward the tail end of our "consultation," he said a nurse would be in to take it. She did, and she took 4 vials. I asked if there was a water fountain nearby. She directed me to the back, where I saw lots of plush lounge chairs with IV drips along side them. There must have been at least a dozen chairs and a TV to watch. This was the chemo room.

I returned to my room and about 10 minutes later, Dr. Carbeza returned with the news. "Your platelets are 147. You're in the normal range."

"You mean you're not worried about my blood?"

"I'm not worried at all right now."

"Great!" I could stop worrying about it.

"But, the pulmonologist is worried about your lung. He scheduled you to have a lung biopsy." Huh? That was news to me. "He suspects it might be BOOP."

"BOOP? What's BOOP? BOOP? Never heard of it." Also known as Epler's Disease, it stands for Bronchiolitis Obliterans with Organizing Pneumonia.

"It can come from Vick's Vaporizers and from rubbing it on your chest," he explained. I told him it was almost a mainstay in my bedroom growing up, night after night after night. Who woulda thunk it?

Some people can smoke all their lives and never get cancer. Some people, like me, should walk away - far, far away - from cigarettes. With my bad lungs, I was a fool to ever pick up the habit. Most people will never have a problem with BOOP, but some people will. I won't know until some time in February what this growth in my lung is, but a biopsy is scheduled for January 27. BOOP or not, a growth in the lung is never a good thing. Let this be a reminder and a firm warning. Smoking kills. My childhood doctor was right. I never should have started, but his advice from over 40 years ago is just as important today. As much as I liked the friendliness of that waiting room, and I really admired their positive and encouraging attitudes, I am in no hurry to join their club. Are you?

Here is an alternative form of help to quit smoking: