“What if I’m an exception?” Larry quizzed, studying her expression closely.
“Truth be known, I’m not aware of any true exceptions. Maybe some cases are more challenging, but we work things out and do what it takes to make the patients comfortable during infusion therapy.” Chelsea was making Larry feel better, and her manner was so convincing he could not help but gain a sense of confidence.
“Okay, so the treatment works well enough. How long do I continue with it?”
“If you mean how long do the treatments continue, they pretty much go on for the rest of your life, unless someone discovers what it takes to restore your immune system to a point that you don’t require infusion therapy any more. That has not happened so far, to my knowledge. You know, these are all good questions, but you should really be asking Dr. Weiss,” she cautioned.
“I’ll be seeing him in a few minutes. I’m curious, though, what you make of this illness, if that’s what you might call it?” he probed.
“Well, I’m happy to share my impressions, but your doctor is the authority. Much of the care in the United States is managed through medical school clinics, but you will probably be treated in your home area over the long haul.
“Cases involving infants place heavy burdens on family members responsible to assist their little ones (and older ones, too, many times) with scheduled appointments as well as hectic emergency visits to health care centers where treatment to ward off threats of pneumonia and other opportunistic bacterial and viral infections is available. The Immune Deficiency Foundation, a charitable nonprofit organized to support patients and their families, maintains a website and publishes a magazine. There’s lots of information on the Internet, if you get real curious sometime. Any number of specialists may become involved in the proper care of a single patient. Regardless, treatment will continue indefinitely, since there is no expectation of full recovery.”
“So, you’re saying that I should get used to treatment?” Larry concluded.
“That’s correct. It appears your immune system is broken, and medical science has not, thus far at least, found a cure. This is not meant to suggest that the medical profession is in any sense insensitive or uncaring. Quite the opposite. Treatment consists of replacing some of the missing immune system parts that such patients’ bodies do not, or no longer, make for themselves. Obtaining the needed immunoglobulin for treatment is a very complicated process involving harvest of the missing antibodies from healthy persons willing to share theirs.
“Remember, you have a condition, not a disease as such. You probably know your care is preventative, but if you fall ill, we’re here to help you through any crisis. In fact, the biggest feature of your future may be in seeing a lot more of us here on Parnassus, so that we can keep you healthy as possible for a long time to come. No reason why you can’t enjoy a pretty ordinary life and live for a long time, besides,” Chelsea concluded with a sigh.
“I hope so,” Larry answered, with very little enthusiasm. “You’ve been very helpful today. I hope I didn’t bother or offend you with my comments.” He added as his voice trailed off.
“Not at all. It’s all my pleasure. I wouldn’t be in this profession if I didn’t love the dickens out of the people I meet. There are many truly wonderful and brave patients out there doing the best they can. I’m very happy to give them the best I’ve got, and that’s a promise to you, too,” she said with emphasis, looking Larry straight in the eye.
“I think the world of Dr. Weiss and know that we’ll be a good team. I feel as though I almost bit his head off once or twice, but he’s obviously a professional and handled everything well. He kicked me out his office for a few minutes. I should be heading back up there shortly,” Larry mumbled mostly to himself.
“That’s right. He’s looking over the CT scan that evaluates your lungs and their breathing capacity. I believe he’s checking for evidence of bronchiectasis, if there is any. You’ve had lots of colds over the years, and you may have this problem, too. It’s not that uncommon, just another part of the landscape, as we like to say,” Chelsea offered, “but you need to discuss all this with Dr. Weiss, please.”
Larry took to this nurse and almost thought that at another time and place, something might just click. But tonight he was exhausted, an emotional wreck, only wanted to finish up with Dr. Weiss and return to his hotel.
“You’ve been a big help to me, Chelsea. Is it okay to call you, Chelsea?”
“Absolutely, yes, please do. Just from our short discussion, I’m confident you’re going to make the most of the situation.”
“You know, you really have given me a lift. I’ll be happy to come here for my care. And, it’s a good excuse to come to the city, regardless,” Larry pondered as his mood improved markedly.
The route back to Dr. Weiss’s office was indirect. Maybe there were no short routes around this institution. Once in the office, Larry and his doctor discussed the latest test results. Yes, he did have the condition known as bronchiectasis. Dr. Weiss explained the usual causes in these cases: numerous head colds and maybe a sinus infection gone untreated over the years resulting indirectly in wear and tear on the bronchia that are air filter devices at the entry to the lungs. He said that it is a chronic condition now, since these tissues do not replace or restore themselves easily. The patient loses another component in the body’s defense mechanism that, in return, requires further precautionary measures.
Dr. Weiss continued by explaining that Larry should avoid extended exposure to the sun since he was now at higher risk of skin cancer. This was good advice for anyone, to be sure. Be careful to avoid dust and other forms of air pollution. Well, this would be difficult in Larry’s farming business, and the Central Valley was already gaining a deserved reputation for poor air quality. The locals liked to blame polluters to the north and the south, but the reality was much different. High volumes of trucking in the Valley contributed to the problem, and the geography of a gigantic encircled and nearly nonventible ecosystem made any comparison to the Los Angeles basin impossible since LA’s territory was relatively midget sized; besides, LA had an outlet to the sea. Finding a new way to make a living in a completely different environment was not an appealing nor available option for Larry, so he reconciled himself to do the best he could without moving away from the Valley.
“Will I have to change my diet, doc?” Larry asked, somewhat pensively.
“Not because of your immune problems, particularly,” Dr. Weiss said, affording some reassurance. “If you’re a smoker, you must stop immediately; otherwise, we’re wasting our time and resources. You might have some bad habits that should change, regardless.”
“Well, specifically, am I permitted to have dinner at Kuletto’s at Union Square tonight, maybe enjoy a cocktail and some wine with dinner?”
“No problem with that kind of diet. Nothing to excess, naturally, but that’s good advice for anybody. No, your immune system problem does not require a drastic change in living patterns, although as we begin your treatment we may find that you have varying levels of tolerance for what’s happening to you. In a few cases, patients develop reactions to the treatment regimen, but there’s no sense in anticipating problems when they haven’t been identified. Most of my patients make a decent transition to treatment, but I do have some folks that have a difficult time of it, and not because of their doing, if you understand my meaning.”
“What, exactly, is my treatment going to consist of?” Larry questioned as the enormity of this life-changing diagnosis began to sink in.
“You will be started on an intravenous delivery of what’s called IVIG, or intravenous immunoglobulin G, and we start at a rate of delivery that takes a minimum of three hours to complete the process. We’ll start on a twenty-eight-day rotation. A few cases require twenty-one-day intervals or even shorter periods. We’ll watch your body’s reaction and will, if need be, administer meds to counteract any symptoms like rashes, headaches, and the like. Ironically, your imm
une system is weak and won’t be tempted to react overly much to the infusion, yet allergic reactions are not all that uncommon for many of the patients. We’ll begin your treatment here for six months or so, and thereafter, if we can find a facility in your local area, we’ll transfer your care. After that occurs, I’ll expect you to come see me once or twice a year. We’ll see how it works out.
“We’ll be checking your immune system levels by testing your blood before and after treatments to evaluate the levels of your system’s peaks and troughs. These terms refer to the amount of immunoglobulin G in your system at any given moment of the testing. We know what the range of normal is, and our purpose is to bring your system into that range, if possible. The lowest value we encounter is called the ‘trough’ and the highest the ‘peak.’ To illustrate, if we use a scale of say 600–1200, we’ll expect our treatment to keep your values within these limits from the highest figure following treatment to the lowest one just before the next treatment begins. Hypothetically, in your case, and for purposes of example only, if we see peaks of 1000 or even 1050 and troughs of 650, we’ll be delighted, since that certainly beats the 87 you’re walking around with at the moment.
“We will check the trough value just before treatment starts. The peak value is the term applied to the greatest strength of the immune system that occurs immediately upon completion of treatment. Thus a patient is subject to a continuing journey from peaks to troughs during which times the immune system loses its viability due to the gradual loss of IgG. If a patient is undergoing intravenous infusion every four weeks, the trough is much deeper than if the same patient were treating weekly. It stands to reason that a higher incidence of infection occurs at lower trough levels, thus a strong case may be made for any form of treatment, especially that which is self-administered, over shorter intervals, which assures patients of the opportunity to maintain the highest levels of good health. Such a result works for patients as well as the community, since fewer infectious processes are striking the community population taken as a whole.”
Larry sensed that Dr. Weiss had finished his work for the day, and not wanting to delay the man, he nevertheless asked yet another question before leaving. “I’m sorry, Doctor Weiss, for overstaying my welcome, but I just have to ask you one more question. Most of us farmers fancy ourselves half-assed veterinarians, at the very least, since we wind up caring for farm animals and giving meds when they’re in our hospital pens. I confess I’m curious about the biology involved in my situation, if you get my meaning?”
“Immunology, perhaps, Mr. Martorano?” Dr. Weiss replied, trying to assess how much microbiology his inquisitive patient could manage.
“Why, yes, of course,” agreed Martorano, starting to become concerned about taxing the doctor’s patience.
“To categorize and attempt to reach some understanding and organization of this complex field, our research suggests these disease processes and disorders involve T lymphocytes acting alone, B lymphocytes alone, interaction of both T and B lymphocytes, and phagocytic cells as well as the complement system. Corollary theories involve investigation of abnormalities in early cell maturation, differentiation, regulatory and enzymatic functions, and cytokine responses. In seeing patients, we observe decreased synthesis of immunoglobulin in association with systemic illnesses. Shall I continue, Mr. Martorano?” Dr. Weiss inquired good-naturedly, realizing he was about to shove his patient over the edge by sounding too scholarly or technical.
Martorano suddenly became humble if not a little contrite as well. He thanked Dr. Weiss for his thoroughness and assured him that his own farm-cultured education concerning equines and bovines seemed of no particular help to him at the moment. Larry promised to respond promptly in the future to the nurse’s calls about treatment schedules.
“Are you able to come back in ten days or so?” Dr. Weiss inquired. “We’d like to get moving on your IVIG treatment program. The sooner the better!”
“I’m certain I can make arrangements for coverage at work. I have many questions, although I promise to learn as I go. I’m just uncertain how all this will stack up in time. That’s really my biggest concern at the moment,” Larry said, betraying his sense of near hopeless inadequacy at the moment.
“I have great confidence that you will do just fine. We know so much more now than ten years ago, and our knowledge is growing at a furious pace. We even have studies from time to time that many of our patients participate in to help advance medical science. If things work out well with your treatments, I hope you will consider participating in that way if you feel you can,” Dr. Weiss explained hopefully.
“You can count on me, doctor, to help in any way you think I can be useful. Studies, whatever. Do you need me for anything else this evening? I think I’m going to drop by Scoma’s and have some swordfish after a stiff martini. Then I’ll have my bearings, for sure.”
“I thought you’d be eating downtown tonight, after your earlier comment,” Dr. Weiss chided ever so slightly.
“I did say that, for certain, but something seems to have refocused my appetite. Many thanks, Dr. Weiss, for your concern and great care. I’ll be waiting to hear from your staff,” and after receiving an approving nod, Larry let himself out of the office. He eventually navigated back to the street and hailed a cab for the ten-minute ride to Fisherman’s Wharf and dinner.
***
And so Martorano spent the years after his diagnosis faithfully taking treatments and coming to a new and different understanding of life’s meaning to him. His horizon broadened, and he actually felt blessed for having experienced this difficulty as it gave him a sense of compassion for others who suffered for all kinds of different reasons. Until he realized he was afflicted, he had not thought of the health troubles that many other people faced, not to mention the unlimited number of other causes of human suffering. Mysteriously, as his empathy expanded and he showed consideration for the plight of others, his sense of “self” improved, and his charitable instincts expanded.
Life was challenging no matter. Armed with his diagnosis, Martorano learned to deal with the complications and challenges of treatment and the inevitable aging processes. He became acutely aware of the limitations placed on the infirm and elderly. Not that such challenges should be seen as insurmountable—quite the opposite. With his improved attitude and renewed fortitude, he faced the uncertainties of the future and made them his personal challenge.
8
Treatment Begins
June 1991
Martorano continued his visits to San Francisco by automobile and simply trusted his navigation instincts to find the UCSF medical center on Parnassus Street. Bad idea. But how could he have known any better, since he routinely found Union Square, Neiman Marcus, and the Mosconi Sports Center without instruments? Simply driving to the Union Square underground garage and taking his bearings from there was no longer an acceptable approach. At least he knew enough to deadhead for the avenues on the western edge of the city.
Soon enough, though not today, he would learn to approach the medical center on the 280 and forget the 101 completely. Fortunately, he had allowed a full hour for contingencies, and as it turned out that was a conservative guess. Cresting the hill in front of the medical center, he began to look for parking. Then it hit him: there was no visible parking, anywhere. Perhaps at that moment, Saint Christopher, the patron saint of travelers, intervened and Martorano found a public garage dedicated to people like him in need of a parking space. Nearly dizzy after driving the lengthy screw ramp downward several levels, he found a space; he now was challenged to gain access to the upper street level and continue his search for the treatment center.
Gradually, he became accustomed to the feeling that in every office he looked into, he found people who seemed to have just moved in. He had to find the infusion center, and he was already twenty minutes behind schedule. Thankfully, everyone he questioned about the whereabouts of his destination was willing to give his or her best guess. Someh
ow, he found the suite, but now he was thirty minutes tardy. He checked in with the receptionist, who asked him to take a seat. His nurse would be with him shortly. He made his way into a large room, most of which was occupied by recliner chairs and portable infusion pumps. Along one wall was a bench where he found a chair and sat down. Close by was a well-read copy of a year-old Field and Stream magazine.
Good enough, he thought, and treated himself to his first deep breath at the beginning of what was to become a very long afternoon.
He waited only ten minutes before a nurse approached and motioned him to follow her. Over her shoulder, she asked for confirmation that he was Lawrence Martorano. He confirmed and continued behind her in procession to yet another room.
Larry was led through several corridors and at last reached a small room with a single bed. He would become familiar with these surroundings since he was destined to have infusion therapy every twenty-eighth day for the rest of his life. He was shown into a private space and asked to stretch out on the bed. He had not anticipated reclining in bed for treatment.
“Hi, my name is Madelyn, and I’ll be in charge of your first infusion. Am I correct that you have not started your infusion treatments yet?”
“Yes, that’s right, so far as I know, ma’am,” he responded.
“Good point. We nurses tend to take so many things for granted about what our patients know or understand. You’ve never been given an IV from an infusion pump like this one, correct?” and she pointed to a rather small device attached to a vertical stainless steel tree with several hooks on it.
“No, ma’am, don’t believe I ever have. I stay away from doctor’s offices and hospitals unless I’m visiting a friend or relative.”
“Well, that’s going to change, Mr. Martorano. Am I pronouncing that correctly?’
“Beautifully,” he complimented her.
(2012) The Court's Expert Page 11