Author Topic: Lois' Story--From The Stones to Dialysis (part a)  (Read 2546 times)

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Lois' Story--From The Stones to Dialysis (part a)
« on: August 31, 2009, 05:56:13 AM »
jfwag



Joined: 11 Jan 2003
Posts: 140

 Posted: Sat Apr 12, 2003 11:51 am    Post subject: Lois' Story--From The Stones to Dialysis  

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From the Introduction to ?Lois? Story-From The Stones to Dialysis?:<
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>With all of the above said, this is a story that does not begin in Luke 14:2 with Jesus and his lawyers; it is not a story about the forgotten father of hemodialysis, Georg Haas, and the first human dialysis treatment in 1928; nor is it about the beginnings of the United States public health care system or Social Darwinism and survival of the fittest. No, it is not about Albert Einstein, John Jacob Abel, Fritz Pregl, King Frederick William IV or the first Medicare recipient, Harry S. Truman. It is a story of a small period in time in which I lived with a woman who survived for many years?whatever one might determine as many?all three modern modalities of dialysis and a chronic disease that is suffered by over one million people worldwide.<
>        It is a story from the perspective of an eventual caregiver who?with his all many faults?fell in love with a person and cannot describe her in simple terms. So, he had to write a story because he couldn't find clear-cut words as her sister and friend has. It is a story about "...her wild antics, her love of gardening and animals..." and a woman who was "...loving, dynamic, mouthy, interesting, honest, smart (maybe even
illiant), kind, thoughtful, demanding, persevering, inquisitive, humorous, and many other adjectives?in all a most unforgettable woman..."<
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>Chapter One<
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>24 Hours<
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>"Vengeance is mine sayeth the Lord. And he can surely have mine. I want seashore and dreamy warm days, starring into the horizon and taking the salts of the ocean." ?Lois <
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> ?You know, I'm not going to see you or Jeff again."<
> <
> These were the last audible words declared to me by a friend, lover, and soul mate of nearly fifteen years. Lois endured kidney complications and failure for almost twelve of those years. Seven of these joyous and sometimes turbulent years were prolonged by in-center hemodialysis, peritoneal and home hemodialysis. <
> Having heard similar utterances like this before; ("...you know I'm not going to live, much longer...I don't have much time left...") this premonition flew right over my head like...<
> I gave her a peck on the cheek and said, "I'll see ya' in the morning."<
> Through a maze of streets on the eastside of Attleboro Massachusetts I drove home from Sturdy Memorial Hospital. Approaching a main road running north and south in this small city of 44,000 people I analyzed the previous five hours. It was a mild March early afternoon and Lois finally agreed she needed some oxygen. She had avoided this for several weeks because?as we knew from previous experiences?when you call 911 for oxygen they just don't
ing the tank and strap a mask around your face. The medics, after hearing ronci rattling around in her lungs, according to protocol, transported her via ambulance to the emergency room. There, she was diagnosed with a small amount of pneumonia in her lower left lobe and admitted to the hospital for observation and a regimen of antibiotics. <
> "If she'd only flunked the bleep oxygen saturation test required by Medicaid, we could have had a tank in the house," I thought.<
> ?Yeah, but then we wouldn't have caught the pneumonia," I rationalized. <
> I glanced downward at the vinyl, three ring binder, notebook we called the "Red Book," sitting on the passenger seat. Once again it became invaluable at these times as inside, it contained all relevant and up to date medical information on Lois. With about a mile to drive I started thinking about what needed to be done. Already I had called her son Jeff from the hospital and left a message as to where his mother was. I would call Charlotte and Cheryl, to again inform them that their sister was in the hospital. Then in the morning, Lois? dialysis prescription could be phoned in for the regularly scheduled session; or maybe driven back the five minutes to the hospital, and issued to whoever was performing the treatment. <
> The treatment was not unusual. The length of the run was four and a half-hours, with a 400-mL/min-blood flow, a 2K (potassium) bath, 10,000 units of Epogen and maybe a sodium profile?in step two or three. Lois should not have gained too much fluid because I had performed an extra weekly treatment on Saturday; her dry weight of 64 kilos would easily be achieved. Why the extra treatment? Well, we'll get to that later.<
> Also on the list of things to do would be a phone call in the morning canceling an endoscopy appointment, scheduled for Tuesday. During the last month or so Lois' hemoglobin had fallen seriously low; and we couldn't conclude as to where her blood was going. Up from 10,000 to 15,000 to 20,000 units of Epogen three times per week her red blood cell count wasn't rising. At one point the count dropped to 7.2 Hgb and she became extremely anemic, lethargic, and depressed; which in turn set off daily panic attacks. Her nephrologist had ordered a blood transfusion; and although the hemoglobin and hematocrit levels rose, why the blood was vanishing became a mystery. Stool tests proved negative and there were no visible signs of bleeding. The Dr. asked us if the artificial kidney was sufficiently rinsed after treatments; and it was. Because I had administered Ferrlecit iron therapy about a month earlier, her transferrin saturation rate was up to par. After the transfusion we tapered the EPO back to 10,000 units.<
> I parked the car in front of the blue vinyl sided, two-story cottage we had resided in since 1986. A couple of bureaus and a queen size bed were now downstairs in what had been a living room; since Lois could no longer ascend the stairs due to an above the knee amputation. Standing in his familiar corner, was the F2008H hemodialysis machine we had affectionately named Dracula. His IV poll nearing the ceiling, he became an every other day companion, when rolled over for fluid removal and blood cleansing of its victim. About five feet high and three wide, when in use, a twenty foot hose was connected to the downstairs shower head and another wedged between the toilet seat and bowl for drainage into the septic tank. <
> I wandered across the hard wood floor slightly stained with a whitish tinge of dried bicarbonate to the telephone. Making calls to Jeff and her family over the years had become methodical and sometimes, as now, there was a good stretch of time in between hospitalizations. Resulting in what started out as a severe bout with peritonitis; an earlier admission had lasted a year and a half. And yes we will also get to this later. Outpatient visits had become a common affair. <
> Jeff stopped by before long to pick up mail and ask what had happened. I explained to him the
eathing difficulties, the pneumonia, and her parting words to me. I don't really remember his response, if any because we had become, or at least I had, immune to these events.<
> Exhausted, I fell asleep on the couch thinking I'd have a couple of days off from operating Dracula. Emergency rooms, hospitals, and admitting procedures can be engaging and extremely hectic or laboriously boring. Either way, afterward I'm always tired. This particular time it was the latter. The waiting during blood pressures, the administering of oxygen, chest x-rays and answering questions about Lois' overall medical history had become tedious. <
> Invariably accompanying us on ventures like this was the "Red Book." Inside, were daily nursing notes recorded for Family Services Inc., of Fall River. Instead of prattling off all the medications Lois was taking, I could simply hand a sheet of paper to the attending nurse or doctor. It stated that she received dialysis treatments three times per week at home. There was a decubitus ulcer that was cleaned with normal saline, packed dry with 2"X 2" gauze dressings twice a day. 5-7mg. of Coumadin alternated every other day and she also could take in .5 mg Ativan or 2 mg. Valium every four hours or as needed and 7 mg. of Zoloft. There were of course enormous amounts of Phoslo and Renagel to control her phosphorus and calcium levels. The horse pills we dubbed them. The list did not include any medications administered during dialysis?these were separate. <
> Always at the forefront of my
ain was a quick verbal medical history: In 1990 Lois was treated for calcium oxalate kidney stones; she had a stroke (R-CVA) in 1996, peritonitis in 1998, and an ectopic kidney removed shortly there after. And yes, there was the obvious above the knee amputation of her right leg. There had actually been four or five of these including a third of her remaining foot. "Whittling of the limbs" we termed this.<
> In the morning I awoke to the last hour of the ?Today? show with Katie Couric and Matt Lauer. This is usually the lighthearted segment featuring human and pet makeovers or the latest diet fad on the

 market. Never before though had I seen a renal diet promoted. Just not marketable I guess. <
> Not aware of what time the hospital would schedule Lois' regular Monday dialysis treatment I phoned her room just before nine o?clock. I had extracted the treatment plan from her home dialysis chart the night before. Four and half-hours, 10,000 units of EPO, 400 mL/min blood flow, etc. <
> The telephone rang through, and a woman answered, "Lois' room."<
> "Hi, this is John," I said.<
> "Oh, hi, how ahh ya? I just started Lois, but..." she continued. <
> Lois must have told her I'd be calling because I'd never met her before<
>yet she answered as if she knew me. <
> "Oh, okay, so you don't need the treatment plan. Waddidya talk to Pat?" I asked.<
> Pat was our nurse from Fresenius Medical Care who in the Fall of 2001 trained us to perform home hemodialysis. Tall, slim and happy go lucky; she specialized and trained clients in peritoneal dialysis for about twelve years. For the last five years or so she also doubled as a hemodialysis nurse. <
> "Yeah, she faxed it to me, but I have a question."<
> "Okay," I said.<
> ?Does she usually lie on her right side?"<
> "Well not always but-yeah that should be fine. On either side, but usually the right," I answered, visualizing the room, the machine, bed, and Lois' Tesio catheter. Her central line access was located directly above her right
east and connected to her heart. <
> She then told me that there was a problem maintaining the flow at 300 mL/min. "Yeah if it drops to a hundred I'll be concerned." <
> Hmm? in a hospital, not at home, lying on her right side and the pump speed lower than usual. What could it be? I wasn't overly anxious at the time but enough so that I'd go right in, assess the situation, and if needed give her a hand. <
> Hastily I packed a Winston gym bag. Of what I haven't a clue. I probably crammed in a book or two knitting items and most definitely some puzzles. <
> Lois was a puzzle peculiarity. She wasn't so much into crosswords as she was the ?Fill In The Blanks? and Cryptaquotes from the Boston Herald. We could always ascertain where her hemoglobin levels were by the speed at which the Cryptaquotes were solved. The higher the numbers the quicker they were deciphered. This was often in minutes if her red blood cell count was twelve or higher but if the number fell to ten or below the decoding could take days if at all. When the little pieces of newspaper accumulated around the house we knew it was time to increase the EPO. (I am jesting of course. The Boston Herald did not dictate the Epogen dosage but it might as well have.) <
> The Chevy Cavalier that Jeff gave us had a seized water pump and dead alternator so it would limp just far enough to the hospital before overheating. With the gym bag packed I set out on the five-minute drive to Sturdy picturing what lay ahead. The pump speed of Dracula?s cousin was at 300, maybe. I'd heard Lois in the background and the nurse's voice sounded slightly strained and jittery with concern, yet not alarmed. I drove down Orange St. to avoid the Maple St. traffic lights. The sun was sparkling along this street lined by old colonial single and double Decker houses with maple trees. At Karen's Kozy Kitchen I turned and headed down the long straightaway passed a bar, the Waste Management Depot, contrasting streamlined and antiquated factories of Attleboro's yesteryear and a row of vacant lots. On the horizon stood Sturdy Hospitals' burgundy smoke stack and four floors of gold
ick and silver window frames. I turned into the main entrance parking lot and hunted for a space. <
> Sturdy Memorial Hospital is a small, state of the art, community facility founded in 1913. Ellen A. Windsor, through a clause in her will had bequeathed her parent's hilltop Victorian Mansion to the Town of Attenborough. It initially opened with fifteen beds before expanding to what is now today, a National Top 100 Hospital, with another expansion in the works. <
> The parking lot was near saturated at this time of morning so it took a good five minutes to secure a space. I did and meandered toward the front sliding doors, through the lobby, down the gray wall-to-wall carpeted hallway, and passed the gift shop to one of the two stainless steel elevators. I remember looking at the watch Lois had given me on my last birthday, so as not to strain my neck, when looking at the clock and taking her pulse. It read 9:20 A.M. Stepping in I pushed the number three button. There was a game I played in my head on these dark wooden paneled, double door elevators where I'd try guessing which one opened first and was always wrong. Reaching the third floor, having guessed wrong again, the door opened and with a quick right turn I started walking toward the patient rooms and nurses? station. About twenty feet ahead of me were some hospital personnel moving in, out, and around a doorway. An elderly security guard with thick, black-rimmed glasses stood across the hallway against the navajo white walls. Heading to the room I'd left Lois in the previous night I didn't think much of all the fuss as I came upon the guard, said "good mornin'" and looked to my left at all the commotion. <
> "Oh @#%$!" I yelled, "That's Lois!"<
> I could see the lower half of her body lying belly up on the bed as a man standing over her rhythmically was pumping her chest. Immediately I dropped the bag filled with books, knitting, and puzzles. I attempted to get inside the room but the guard grabbed me on the shoulder and informed me not to go in. <
> "What the hell is goin' on?" I asked vehemently.<
> Believe this if you will or not, but I didn't get the standard, "Don't worry she'll be all right," response.<
> Within moments a small woman with a dark complexion and jet-black hair to her shoulders asked me to follow her. As we hurried down the hallway a man in white held open an elevator not utilized by the general public. I had a good sense as to why he stood there. The two of us sat down in an unlit waiting room, over crowded with turquoise vinyl cushioned armchairs. Seated directly in front of me on a wooden coffee table she said her name was Dr. something or another. <
> "I dunno know if you know what is happenin'," she stated flatly.<
> "No I don't," I replied, although I was rapidly forming an idea in my head.<
> My mind was now spinning, thoughts racing out of control. What the hell was going on? Not this again! Emergency rooms, rehab hospitals, strokes, peritonitis, amputations, and catheters on the TV room floor! Add to these, hypertension, hypotension, and panic attacks! @#%$, I was on the verge of a panic attack!<
> "Okay," I thought to myself, ?I?ve been through events like this before; stay calm, everything?ll be fine.? But everything wasn't all right, and I knew it! ?You know I?m not going to see you or Jeff again,? ricocheted inside my cranium. <
> "Can you tell me something about her?" the doctor asked, interrupting my panicked reasoning. Apparently she didn't even know Lois' name yet. "I'm not her docta' but I happened to be on the floor. There're two or three others right now assisting her."<
> Once again my professedly rehearsed lines leapt to the fore
ain. "I have been doing her dialysis at home since early December. She was treated for kidney stones in 1990, a stroke in 1996, peritonitis in 1998 and came in here yesterday because of some
eathing difficulty and told there was a small amount of pneumonia in her lower left lobe." <
> "Well they maybe transferring her right now to ICU, I really don't know. Does she have a health care proxy or living will?" Her eyes were filled with fright, sympathy, bewilderment, and genuine concern all in one. Almost in a whisper she said, "They might have to put her on a respirator."  (continued in part b)
"Like me, you could.....be unfortunate enough to stumble upon a silent war. The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing,becomes as political an act as speaking out. Either way, you're accountable."

Arundhati Roy