“Okay. I suggest you remove your shoes and loosen your belt for comfort. Hop up on the bed and get comfortable, since you’ll be there four hours, I’m thinking. Are you right or left handed?”
Interesting question, he thought. “Left, actually,” he replied.
“Okay, then I suggest you roll up the sleeve on your right arm so I can find a suitable vein to work with today.”
Larry did as instructed and got onto the bed. He offered Madelyn his right arm while she rolled the infusion pump bedside.
“Do you recommend placing the needle in the nondominant arm?” he asked.
“Yes. The reason is you may want to use your left arm during the time you’ll be with us.”
“Oh, I thought maybe there was a medical reason for the choice,” he volunteered.
“No, just the convenience of the patient. You may wish to scratch something while treatment progresses,” she advised, followed with a nurse’s wink for punctuation. “We’re talking convenience not medicine, but it’s a big item, believe me,” and she busied herself with laying out items that would be needed before the treatment was finished.
“Larry, do you mind if I call you Larry?” she asked.
“Oh, please do,” he said amicably.
“Good. I think we’ll get along just fine. Now, I’ve reviewed your history in the chart, but there are some questions I need to ask, please.”
“Shoot!”
“Do you ever get headaches?’
“Infrequently. Two or three a year, maybe. They seem to come after long hours of working … or debauching,” he answered candidly, with his own responsive wink.
“Very well. I have the impression we’ll be good friends. Just one thing: never try to fool ole Madelyn, because it won’t work, believe me. Remember, sooner or later I’ll find out the truth if you try to pull something over on me. Equally important, though, it’s vital to the success of your treatment that we gather accurate information regardless of the details. Understood?”
“Of course. Sometimes, I don’t know, my life seems so boring to me that I might try to embellish a little,” he admitted. “I’ll try to keep the kidding at a minimum.”
“Yes, we’ll do just fine,” she said as she placed equipment on a rolling tray and pulled it into position.
“What about allergies? I didn’t see anything in your history that bothers me. Any problems you know of?”
“Nothing serious. I might get a rash if I’m working pretty strenuously in a field on a very hot day, changing a large tractor tire in a field somewhere.”
“That’s right, you’re a farmer from the Valley, aren’t you?” her mind recalling the patient history she reviewed in the morning.
“Correct. But you mentioned the Valley. Do you know where the San Joaquin Valley is located?” Larry asked, testing her knowledge of geography.
“Do I? I’m from Merced. My folks had a small dairy and grew the feed they needed for the milking herd. I miss it in a way, but I doubt I could ever get back to that lifestyle. It’s unimportant anyway. The farm is gone, and my parents took the money they made when they sold to a developer and moved to McCall, Idaho. Now, there’s a place I could get used to in a hurry.”
“I’m not familiar with Idaho,” Larry admitted.
“Just think of Lake Tahoe and all its beauty. McCall compares favorably, but without all the people. I go there at least once a year to visit my folks. It’s gorgeous,” Madelyn answered, with conviction in her voice. “But we have work to do here!
“This type of infusion therapy is a fairly new treatment modality. In the past, patients would be given intramuscular injections to bolster their immune systems, which would bruise their backsides, for example, when going out of the country on an extended trip. There were reasons for the IM modality, but now we’re pretty much exclusively into IV, intravenous, instead of IM, intramuscular treatments. That’s why you’ll hear us talk about people like you as our IVIG patients.
“Since this is your first infusion visit, do you have any questions, Larry?”
“I thought I would be full of them, but you’ve covered everything,” Larry confirmed.
“Well, because we have no experience with you, or any other first-time patient for that matter, we’ll start out easy. I’m going to have you take a couple Tylenol tablets, an antihistamine, and some saline solution through your IV. The Tylenol controls headache pains, if any, the antihistamine checks allergic reactions, and the saline makes certain that you have to visit the john at least twice before I’m done with you!” Madelyn finished this portion of her presentation with a winning grin fired at her attentive patient.
As Madelyn lightly rubbed and patted Larry’s right arm, he realized he had never had a needle placed in his arm before, except of course, when he donated blood. He mentioned this point, and Madelyn assured him that his blood-donating days were over. The blood bank would not accept him as a donor any more. As a matter of fact, Larry would now be on the other side of the equation, as a donee. She pointed out that what he was getting were antibodies, harvested from the blood of healthy people.
“Please don’t quote me on these technicalities! As I understand it, the materials you are going to receive today include the antibodies that your B cells in your own immune system no longer produce. So patients like you need the help from others to replace the missing parts of your defense system.”
“I’ll be asking my friends to donate blood in my name when they go to the blood bank, right?” Larry anticipated.
“This is only from my limited perspective. While that would certainly help the overall supply,” Madelyn replied, “the IgG is not permanently identified by donor but goes into a large pool of product. Pharmaceutical companies provide your immunoglobulin commercially. As it stands, some companies are encouraging donors to sell their blood to them on a regular basis. That practice involves risks that are not always acceptable, so I predict the rules on collecting and delivering this product to patients will change over time in order to protect the infusion patients.
“Okay, you ready?” Madelyn inquired cheerfully. “We’re going to start the pump now. Be sure to let me know if you’re having any unusual feelings or symptoms of any kind.”
Larry nodded his understanding and acquiescence. His eyelids felt heavy, an effect of the antihistamine. He settled back into his pillow, thinking that if sleep was on the way, he’d make the most of a little nap. He dozed off and slept for fifteen minutes before Madelyn was back to take his blood pressure again.
“You just think you’ll get some rest,” she kidded him as he groped for orientation after being awakened from his deep sleep. “I’ll be bothering you most of the afternoon, I’m very sorry to say, but it’s my job, and it’s for your welfare, too. We need to know if your vitals are affected in any way from the treatment. Let’s see. Your blood pressure and pulse rate are normal. We’re doing just fine,” she remarked, with obvious satisfaction.
“Do some people have difficulty taking treatment?” Larry asked.
“A few do, but there’s no predicting it. I’m certain nervousness has a little to do with it. If that’s involved, the patient will settle into the program after a couple visits. Unfortunately, there are some patients who are not so lucky, and we need to help them as best we can. In your case, however, I am very pleased with your progress. It looks as if you’re in for smooth sailing,” she nodded with further approval.
“I wonder why I had never heard of this disease before now,” Larry muttered out loud.
“A good point. From what I hear, immunology is a specialty subject area and not always a part of the standard subjects offered in medical school. Yet it’s become my passion, to be truthful. I love nursing, I love this institution, and I love my patients, or most of them,” she added, side glancing at Larry. “But we’re right in the center of immunology research around here because of the AIDS epidemic. All these issues produced huge advances in the field in a very short time. When you stop and think about it, it’s ama
zing what we can learn, what the scientists in medicine are learning every day. Much of what we know about your situation comes out of that developing field.”
“You mean I’m some kind of AIDS patient?” he said, and Madelyn’s crestfallen patient wilted somewhat.
“No. AIDS patients have their immune system troubles; that’s for certain. But to keep it straight in my mind, I think that AIDS patients suffer from destruction of their T cells, while CVID patients like you have their problems with missing antibodies produced by their B cells that do not function properly. Different cells or whatever, but no meaningful connection, you know. I’m very sorry, Larry, I’m way over my head at this point. You should be asking Dr. Weiss these questions.”
“Don’t apologize, please. You know one hell of a lot more about the subject than I do. What kinds of problems do your patients experience? I’m just curious in case I notice, say for example, diminished sexual impulses or reduced performance,” he said, followed a grin in Madelyn’s direction.
“Well, I’ve never heard such a complaint from any of my patients,” she replied with her own smile, “but if such a problem were to come up, medically speaking, of course, we’d be interested professionally!”
They broke into a chorus of laughter sufficient in volume to attract the attention of another nurse who looked into Larry’s treatment cubicle. “Everyone seems to be healthy in here,” she remarked, and then withdrew without further comment.
“Do you think we’re in trouble?” Larry asked devilishly.
“Only if you had been screaming or cursing,” she reassured him.
“Really? Really. Does that ever happen with your patients?” Larry asked, showing keen interest.
“Very rarely, but it does happen, yes, from time to time,” she conceded.
“Okay, now I am curious about problems that might show up during treatment. If you don’t mind letting me in on the list,” he asked.
“Okay, but remember you’re the one who asked!” and Madelyn sighed as though she were about to embark on her own life’s story. But first, it was time to check her patient’s vitals, again.
“You’re still holding up well,” she said, half musing yet sounding very pleased as she spoke.
“Yes, but you make all the difference in the treatment,” Larry remarked genuinely. “Are there problems that you have to watch out for?”
“Certainly, many of them just show up when people are getting used to the system. For example, driving here from a distance through Bay Area traffic isn’t easy. Once here, you must find a place to park your car and usually people making their first trip are chronically late, so that adds to the anxiety. Ever hear the term uptight? Exactly; so when my patients present in that condition, it makes it much more difficult to find a vein to even get the treatment started.
“We’re always looking for patients with veins we can find and penetrate without any problems. Problems, you ask? Sure, some of the best looking veins are frauds. They roll away, collapse, shrink, whatever. Believe me, it’s very embarrassing to turn on the pump and realize for the first time that the medication is not making it into the vein but going into surrounding tissue. Success requires that the needle must be inside the vein, so punching a hole all the way through it just won’t do. We want the antibodies in your blood stream, but if it is delivered to a muscle group instead you have some very lucky muscles! Am I boring you yet, Larry?”
“You could never bore me, take my word for it,” he reassured her. “This is fascinating. I had no idea. Please continue.”
“So, let’s assume the needle is in the right place, and we begin treatment. Now, we’re watching for any signs of trouble. Some people have bad reactions to the immunoglobulin, and we won’t know that until we administer the treatment. If that happens, we must abort treatment while the doctor looks for a good product match. We always find the right solution for the patient.
“Diseases that the patient may have can affect vital organs and foul the process. We look for evidence of allergic reactions in the first treatment or two, so until we’re satisfied you have no allergy problems. we give you an antihistamine. When the patient tells us to stop that part, we’ll give it a try.
“The patient’s bad habits could be problems. I’m talking about indulgences involving alcohol, drugs, or any chemicals the patient might be taking that already tax the immune system. You’re not pregnant or lactating, but that can be a complicating factor.
“I have some wonderful patients who have the same reactions with every treatment and we can’t seem to find relief for them. They’re the ones my heart goes out to. They come back and undergo the treatment knowing they’re in for some tough days ahead. They may miss a few days of school or work, but they manage. These are the courageous ones, I must say. I’m sorry, I do ramble once I hit my stride,” Madelyn sighed heavily and looked outside the cubicle, for reinforcement perhaps.
Larry began to understand the pressure his dedicated nurse was under and felt a warm glow of appreciation. He experienced a kind of bonding to this caregiver who shared her knowledge in a professional yet intimate manner.
“Time for another vitals check,” and Madelyn adjusted the BP cuff before inflating it. “Marvelous numbers. You must be exercising,” she complimented as she replaced the cuff on a hook.
“Farming activity is seasonal, and there are only two seasons: the busy season and Christmas Day. True, I do stay active most of the time, unless I’m duck hunting, but that’s another story, if you’re interested,” said Larry, trying to tantalize her.
“Sorry, Larry, don’t think so, not today,” cooed the wise nurse. “By the looks of your container of IgG, you’re about three quarters through the treatment today. That’s just enough time for you to take a short nap while I do some charting and schedule your next treatment. Yes, it’s a crazy notion, but we never say ‘good-bye’ around here. It’s always: ‘See you in four weeks!’ Sounds like a promise, doesn’t it?”
Without waiting for an answer or one of Larry’s sometimes cogent observations, Madelyn vanished from the cubicle. Larry fell asleep and was only roused by the sound of a beeping signal coming from the infusion pump.
Seconds later, Madelyn was back inside the cubicle. “That’s a sound we all love to hear. Your treatment is finished for today. How do you feel, Larry?”
“Great, I guess. I had to get my bearings there for a second. I feel fine. A little different but I can’t say why,” he added.
“I call this a great success, then. No problems and lots of good conversation. Not a bad day,” Madelyn said, with genuine gratefulness in her voice.
“Then why don’t we celebrate. I’ll meet you at the Wash Bag in an hour, okay?” Larry said, and he flashed his major-league grin of the day at Madelyn.
“Very tempting, but no can do, cowboy. My mom came to town this morning, and I already have a date with her tonight. She can be a real grouch if her plans get disturbed, know what I mean, Larry? But thanks for thinking of me,” she offered, busying herself with the procedure of detaching her patient from the infusion pump and disposing of the supplies in proper receptacles. She withdrew the line from Larry’s arm and wrapped a piece of gauze over the small wound.
“Take that wrap off before bed tonight. You don’t appear to have any coagulation problems, but don’t be in a hurry to remove the little bandage I just installed. It will remind you of your big success today at UCSF. We’re proud to call you one of ours, now!
“And here is your appointment card. I scheduled you back here in four weeks. If something comes up, we can reschedule, but don’t wait until the day of the appointment to call us to cancel. We mix your treatment product. It’s unique to each patient. If you don’t use it, it’s wasted, and this stuff ain’t cheap, mister!”
“I’m curious about the cost. I’m glad you mentioned it. What am I looking at, if you know?” Larry asked.
“You’re still seated. That’s good. Pricing is complicated, and I certainly know very litt
le about it. At today’s prices, my guess is that you or your insurance company will be paying twenty to twenty-five thousand dollars for a year’s treatments. And I’ve never seen a price reduction for this product. The good news is that, so far anyway, there’s been no shortage, and the patients who truly need it are getting it,” Madelyn volunteered. “But I can’t say what might happen in the future about pricing and reimbursement.”
“Is it possible for my immune system to get back on track and heal itself after a few treatments?” Larry asked with some optimism in his voice.
“You’d better put that question to your physician next time the two of you get together. If that happens or could happen, I’m not aware of it. Aside from a miracle, you’re going to be living with this situation for the rest of your life. You see, you and other patients like you are at higher risk to experience disease because of your broken immune system. Nonetheless, if our treatments are successful, while you will be at greater risk than average, you won’t have any illness until such time as you’re clinical. Comprende, amigo?”
“I think so,” Larry answered pensively. “You’ve been very helpful today. I hope I didn’t bother you with my questions,” he said, his voice trailing off.
Then Larry went on his way, hoping to reduce his fretting over the different lifestyle he faced.
9
Tragic News
December 1994
Martorano had tolerated his continuing years of infusion treatment well enough. This morning he was up early running errands. By eight o’clock, he had been busy for a couple hours and decided to have breakfast. Since he was in Tulare, he stopped by one of his favorite old haunts. Even though it had been at least a year since he had last eaten there, he drove straight to Nielsen’s Restaurant on the west side of the city park.
Family cafes like this one had been present in every Valley town before the proliferation of chain restaurants on the freeways and were a great resource for motorists passing through the Valley from one end to the other. With just a little ingenuity and some luck, the traveler with no foreknowledge could normally locate the local restaurant of choice by looking for a cluster of parked cars in the area, a certain giveaway of the favorite eatery by consensus of the residents. The food was not prescripted according to a home-office plastic menu, although the choices were similar from one restaurant to the next. Reliable traditional fare of the region was pervasive. Visitors were well treated by staff since they represented a source of information from the outside.
(2012) The Court's Expert Page 12
