Going to dialysis last night was a warm fuzzy.
My primary nurse, Jane, greeted me good naturedly with “You can come right back, Miss Celebrity Star.” Other nurses joined in with similar comments. Jan said “the story sounded just like you” and told me the nurses that were off duty and most of the patients who were on treatment during the midday news broadcast had tuned in to see the TV interview. “You really represented,” one nurse said.
Fellow patients and family members took the time to compliment me on the first person newspaper story. Simply put, I was touched.
There were only a couple of down sides to the treatment: I gained too much fluid over the weekend; my blood pressure was too low at the end of treatment so the nurse gave me back 300 cc of saline solution and it took about 15 minutes extra before I felt I could stand and walk without toppling to the floor; and, of course, my butt felt numb before it was all over.
I have to find the key to keeping my fluid intake below what it has been. I haven’t strayed far from the 48-ounce per day allotment, but it seems my body is retaining every drop of that liquid. My target Tuesday was much too high, over 7 kilos that translates to over 15 pounds. We went for 6 kilos and would have made it if the nurse hadn’t had to return 300 cc to bring my blood pressure up.
That liquid restriction is tough, as most of my fellow patients know. It’s a total of a quart and a half of liquid per day. That allotment includes all liquids — soups, coffee whitener, anything that melts at room temperature.
It may sound more than adequate, but not for me. I’ve always loved a big, icy glass of water or iced tea and I’ve spent a lot of years in newsrooms which usually means you have a cup of coffee in front of you at all times. I love my liquids. Also, I am diabetic and diabetes can cause increased thirst. I love my liquids and I thirst for my liquids.
Of course, several years ago when the “popular press,” TV doctors, etc. were touting the health benefits of drinking lots of water, I trained myself to drink at least … that’s at least … 8 full glasses of water a day. That was in addition to the other liquids I consumed.
So, how do I handle it now? I’m trying. When the pre-treatment question of “excessive thirst” is asked, I generally answer: “I don’t know if my thirst is excessive but it certainly is obsessive.”
I start obsessing about my liquid intake as soon as I get up in the morning and take my handful of meds: “OK, that was 4 ounces … that leaves me 44 ounces. How much can I drink at breakfast and still have enough to quench my thirst during the day?
I cram a 16-ounce glass full of ice which leaves about 8 ounces for liquid and I don’t refill it but I do chew the ice after the liquid is gone (too soon, too soon). I figure the ice trick saves me at least 2 ounces and probably closer to 3.
I try to monitor the liquid I drink during a meal, but I now know I like to include lots of liquid as I eat. So even though I start the morning thinking I’ll not drink much at breakfast, just save the liquid for later in the morning, I look at the glass at the end of breakfast and ice is about the only thing left.
I’ve abandoned the 20-ounce pop machine for the 12-ounce and only go there at lunch time. If I go to a restaurant I ask them to cram the glass with ice and even tell the waitperson I’m on a liquid restricted diet and not to refill my glass even if I beg.
I try very hard to stay within the restrictions and I think I do fairly well, but the weekend leaves me feeling defeated and hanging my head at the Tuesday weigh-in.
I daydream about once again about being able to chug a glass of icy tea without a second thought instead of sipping and wondering “how long can I make this last?”
Last night, Trista, in the recliner next to me, was expressing similar feelings to her nurse. “I think about every drink I take,” she said in an exasperated voice. “And feel guilty about it,” I added silently. I think we all do.
Water is one of the necessities of life and to deny yourself a necessity ain’t easy.
The day the first person story appeared in The Gazette, I was asked to appear on KCRG-TV9’s midday newscast to talk about the story. Take a look.
And while you’re at it, if you missed the story, here’s a link. Eventually, I’ll post this in the sidebar.
I’ve received a number of nice comments about the story, especially from other kidney patients. My landlady even said she’s going to check her blood type — one of the first hurdles in matching kidneys. That was unexpected and certainly a generous offer.
A commenter yesterday said she’d like more information on what led up to my kidney failure.
It was Type II Diabetes, not unlike most kidney failure patients. The research I’ve done says nationwide 45% of kidney failure is directly attributable to Type II Diabetes and here in Iowa, according to Cedar Rapids nephrologist Fadi Yacoub, that’s more like 50-60%. Because Iowa has such a large aging population the incidence of Type II is higher and therefore the incidence of chronic kidney disease and kidney failure are higher, too.
I was diagnosed with Type II diabetes midyear in 1998. It was no surprise to me because I had been telling doctors that I thought I had diabetes for several years. Why it took so long for one of the them to test for diabetes, I have no idea other than they were not my primary physician and the attitude must have been, “it ain’t my job.”
I had been having problems with recurring yeast infections — ding — and my gynecologist called for a blood sugar test then told me the result was so high no further testing was necessary. I had diabetes.
At the time, I had no health insurance and, of course, no primary physician. Not a good thing, but it happens to too many these days. I had just started working at the newspaper and lucky for me there was no “pre-existing condition” in the insurance coverage to contend with since I’d never been diagnosed with diabetes before.
When I think back, I think my first symptoms of diabetes had occurred in 1990. I had been stripping wallpaper — standing on a ladder — and the spots on my shin where they rubbed against the ladder took forever to heal. I also was having problems with recurring yeast infections then, too.
That story was not atypical then nor is it today. Estimates indicate there are 54 million people in the US who are pre-diabetic and of the 20.8 million with diabetes, 6.2 million don’t know they have it.
So, by the time I had an official diagnosis, diabetes had already begun its corrosive work on my system. Proof of that? Within three months of the diagnosis, I had a mild heart attack and 2 stents — I call them my internal reinforcing rods — were placed in my heart.
I dropped weight mainly because of the fear factor a heart attack causes, but it crept back and more with it, my typical pattern with weight loss. I consider myself an expert at dieting because I’ve done it most of my life. I think in total I’ve probably lost the equivalent of at least 11/2 normal-sized adults over my lifetime of dieting. What I can’t seem to accomplish is keeping the weight off.
And even though I was overweight, I had taught myself new eating patterns. Things that are good for you: whole grain foods and breads; drinking lots of water; cutting sugar out of food; lots of salads and vegetables.
I’ve also had a problem with fluid retention for most of my adult life, heightened by a career that often meant working many hours past 8 and most of those hours parked squarely in front of a typewriter or computer screen. Not the best thing to lessen leg and ankle swelling.
Oh, yeah, and the stress level in a newsroom is always nearly palpable, also not good for your health.
By the time 2006 rolled around, I had a number of complications directly attributable to Type II Diabetes: heart problems and congestive heart failure (astounding water retention there, too, which causes stress on the heart); hypertension; dental problems; Lichen Planus and Lichen Planus oral; vision problems including macular edema; brawny edema; slowness to heal.
My “primary care physician” and his office became one of my regular visits. I have great respect for Dr. J as both a knowledgeable physician and one of the most caring doctors and people I’ve ever met. He had — always — my best interests at heart and is so sincere that at first I wondered, “is he for real?” But he is.
I also have some medical problems I don’t think are connected to diabetes though who knows for certain. I have arthritis, sinus problems, sleep apnea, restless leg syndrome, a history of migrane headaches and some thyroid issues.
Lord, maybe I should go lie down …
I felt lousy. I felt worse than lousy. I was so concerned that I started – gently – to “prepare” my son with the idea that Mom wasn’t going to be around forever and forever might come sooner than he believed.
I was drowning in my own fluids. My weight gains were incredible and I remember telling my GP, “if I were sitting where you are listening to me, I wouldn’t believe it when I said, ‘Dr. J, I’m simply not eating enough to be gaining weight this way.'”
I thought it was congestive heart failure again. I’d had a bout a couple of years earlier that sent me to the hospital where they drained over 50 pounds of fluid off my body in about 10 days time. Sounds incredible, I know, but true.
Dr. J prescribed higher doses of lasix and added a “turbo charger” of metolazone (Zaroxolyn). It helped, some. Over the next few months we monitored my weight and my creatinine. He sent me to my cardiologist for more testing and a new nuclear stress test. I hate those, but I knew it was necessary.
I still felt lousier than lousy. My creatinine levels were leaping, not creeping. In six months, they’d gone from a high normal of 1+ to at the edge of 6.
Finally, in January, he admitted me to the hospital for extensive testing. He called in a nephrologist who said my kidneys were functioning at less than 15% of normal. I was knocking on the door of End Stage Renal Disease.
In about three weeks, the door opened wide to ESRD and closed firmly on anything near “normal” life.
What were the symptoms leading up to it? Really, other than the water retention, there seemed to be little or none other than a general fatigue and feeling lousy, sort of close to collapse all the time.
Of course, between diabetes and all the complications I already suffered, it was nearly impossible for me to compare how I felt to “normal.” It had been so long since I felt normal I could no longer relate to what that was.
I still can’t. I feel 75% better — at least — than I did last year at this time. But I know I don’t feel normal.
Hello, if you’re here after reading today’s story in The Gazette or on GazetteOnline, welcome!
This is where you’ll find the background and personal reflections on this reluctant journey I’m making. To get the story in a more or less chronological order, read from the bottom up. You may want to grab a cup of coffee because I’ve got a lot to say. 🙂
If you have questions you’d like me to try to answer or find the answers to, please leave them in comments. I want to make this blog work for me and for you whether you’re a kidney patient, family, friends or just curious.
I was in the hospital a full week, returning home on a Monday afternoon thanks to the help of long-time friend and coworker Mary S. She went shopping for something for me to wear home since I told Paula to “burn” the nightgown I’d worn into the hospital and the robe I’d worn was somehow lost in the laundry.
But before I leave the hospital, let me say a few things:
St. Luke’s where I was hospitalized is among the Top 100 hospitals in the United States. They strive to do things right and in most areas they do. But, this I know to be true …
- You are your own best advocate
- You have to be an active participant in your own care. Watch like a hawk but don’t be a bitch
- You have to ask questions, listen to the answers and ask more questions if the answers aren’t clear
- If you don’t understand — jargon or procedures, whatever — say so. It certainly helps to demystify things
- Don’t assume all staff are all knowledgeable about your case, they have many different patients to deal with
- Be honest — even if it hurts to admit you’ve not been following the program — medical staff need to know exactly what they’re dealing with to give you the best treatment. And you know what, they’re human, too, so they do understand what a slip is.
- Don’t under report, the mantra of my best-friend nurse, should be taken seriously. Tell the doctors and nurses everything even if it seems totally unrelated.
- Try to be tolerant — of interrupted sleep, longish waits for treatments, lots of needle sticks for lab work, etc. — You may feel crappy, but taking it out on the staff isn’t fair or productive. I for one don’t want any staff member reluctant to answer my call light.
- If you have suggestions about how patient care might be improved, make them in a positive manner. They really do want to make you as comfortable as possible.
- A sense of humor helps. After all, laughter is the best medicine.
- Don’t leave your false teeth out for an entire week. You may not be able to get them back in your mouth.
I thought alot about quality vs. quantity while I was hospitalized, a captive audience of my own thoughts, you might say. I also was starting to feel better as my blood became less toxic. There were some things I wanted to change in my life, practical, immediate things.
I wanted to find some help to get life back into order at home. In fact, I wanted to find a new home, too. As soon as possible. That would be no easy task.
Actually, just getting the laundry done at home was no easy task since the washer and dryer were down a steep set of stairs in the basement. I shouldn’t be lugging laundry down and up stairs and the basement, always damp and moldy, was not the best place for me.
I needed to talk with the hospital social worker to see if by some chance I could qualify for homemaker/health aide assistance at home. The answer, of course, was no. I’m too young for Medicare and even though I work for a newspaper (certainly not the most high-paying career), I make too much money to qualify for assistance in paying for the services. The best he could offer was a list of agencies in the area who provide such services.
I took the list with me when I left the hospital determined to do my homework while I was recuperating for the next week or so at home.
But Tuesday, I had to go for my second out-patient dialysis treatment. The hospital dialysis treatments were and are still kind of a blur. I dozed through most of the three treatments there, mostly from medication, I think.
That Tuesday treatment was interesting to say the least. The machines at the Mercy Outpatient Dialysis Center, where I receive my treatments, are sensitive to miniscule blood clots, clots that might never cause a problem in the human body set off alarms in the dialysis machines and that first treatment, my dialyser clotted three times. “I’ve never seen this happen before in the seven years I’ve worked here,” Kent, a technician said.
Oh, good. Somehow that’s not a comforting feeling. Being on a negative medical (b)leading edge is not one of the things I wanted to experience. The other major problem (that still remains about twice a week) was butt numbing. Sheesh. Four hours is a long time to sit in virtually one position.
During that first week of dialysis treatment I experienced another of the side effects of dialysis. Cramps. Actually, there should be a stornger, more intense word for what you can experience when the machine pulls the fluid too swiftly or too much from your body.
Cramps signify something you can “walk off” or rub out. These respond to little else than adding some of the fluid you worked so hard to take out back into the blood stream. They don’t hit just one area or one muscle. At least not in my legs, they cramp 360-degrees aroun the midcalf and move down over the foot, either on the top of arch or to one side.
When the muscles start to pull in, you have no control and the pain can be intense, again a weak word. I hurt so badly that I could not not verbalize. I was doing well just to keep my language in the realm of acceptable. I could feel, too, and know from experience how hearing someone nearby in medical crisis can trigger a similar crisis. I was panting, hurting, in a cold sweat, trying to stretch to get the cramp to release. The nurses were forcing saline back into my blood through the umbilical cord.
Just as the cramp begain subsiding a smidgen, someone else went into distress and their alarm started beeping. The flock of nurse by my side, of course, flew to that patient. I waited as long as I could before I called someone back to my side because I knew I was going into shock from the pain. I was shaking uncontrollably and felt faint.
Yes, dialysis can be hard on the body. Very hard.
It seemed for the following week as some complications subsided, others cropped up, and others just sat there brooding and mystifying. The most troubling being my sensitivity to light … well, that and the fact every time I tried to walk I felt I was reeling like a drunken sailor.
My body was full of fluid and full of toxins. If you’re of delicate constitution, you may not want to read the next few sentences. My first few bowel movements — as my body flushed some of the toxins away — were foul, to say the least. I was happy I didn’t expect visitors and apologized to the staff who had to monitor my urine output. They, of course, said they’d smelled worse…I don’t know how.
The sensitivity to light seemed to puzzle even the doctors. I’d tell them that I felt I was walking around in a constant camera flash, and like inquisitive dogs they’d tilt their heads and mumur, “hmmmmmmmm.” I never did get an answer as to what was causing the daze, but I’m glad it’s gone. It does seem to return to some extent with my low blood sugars or optical migraines.
The drunken sailor question was pretty well answered the Friday before I went home on Monday. The physical therapist helping me get ready to return home said she believed it was probably because of the excess fluid in my body, some of which, she said, was still sloshing around in my center of equilibrium.
It made sense to me and explained why when I tried to walk a straight line I couldn’t seem to control where I’d end up. I also felt like I was listing to the right constantly.
By Wednesday, I was jonesing for a shower so bad. It had been the Thursday evening before when I’d last been in a shower. I had been cleaning myself as best as I could by using the moist bath towelettes the hospital supplied and taking Grandma’s advice to “wash down as far as possible and then wash up as far as possible.” You can guess where possible is.
I also was in the same nightgown I’d been admitted in. I was too sick to pack for the hospital when I called the ambulance and Mom was unable to get to the hospital to bring me anything. She had a knee transplant that became infected and has had a fused, unbendable right knee for the past decade or so.
Paula, an aide and one of those little dynamo type people, came bustling into my room Wednesday afternoon and asked if I’d like a shower. The answer to my wishes and wants.
She got some latex gloves and moisture-proof tape and created a protective covering for the perma-cath and walked me — careful not to let the drunken sailor collapse — down the hall to the open shower room where she turned the sprayer on me as if I were a mooly cow. She sudsed my hair and scrubbed my back and let the water simply run over my body. We sang a couple of choruses of “Singin’ in the Rain.” About that time I turned to her and said, “Paula, there’s no one in the world I love more than you at the moment.”
Dialysis, again. Downstairs in the in-patient dialysis center. A sturdy young woman comes with a wheelchair to transport me to the center. Once in the chair, I’m wheeled briskly through a multi-level maze of hallways. We’re going so fast I can feel the breeze against my face.
There are cave-like cubby holes in the walls, pale yellow curtains acting as barriers. My transport guide helps me into a cubby hole where a bed waits. The nurse introduces herself and asks if I think I can stand to be weighed. A portable scale is brought and tucked under me so all I have to do is stand for a wobbly few seconds until my weight can register.
I’m then transferred to the bed. Flanking me on my left is a bank of machines, each about the height of an adult, the row extending the length of the bed. A televison is set high in the doorway above the curtain barrier directly in front of my bed. A large display digital clock to the right silently announces the time.
The nurse brings me a warmed bath blanket and another pillow to raise my head a bit.
My umbilical tubes are attached, the machines start whirring and gurgling, beeping now and then and the nurse, now masked and wearing a pale yellow disposable gown and gloves, changes the dressing on my perma cath.
It’s all so surreal to me — the shrouded area, the ritualistic preparations, the whirring, burbling machines blinking and beeping at my side.
It starts me thinking the more advanced medicine becomes the more mysterious it is and how all the scientific equipment can be frightening because it’s so unknown. “Like witch doctors,” I thought or maybe more like witches brewing up some eye-of-toad tail-of-newt concoction.
I almost expected one of McBeth’s witches to pop her gargoyle mug through the curtain, cackle and whisper to the nurse, “Where hast thou been, Sister?”
Meanwhile the nurse, oblivious to my wild, wandering thoughts wheeled a portable cart with a computer atop to the foot of my bed. She sat and began entering information. “Why not just plug the cable into my ear and drain the information directly from my brain,” I thought.
I fell into a fitfull sleep, probably an apt visual description, too, since I have restless leg syndrome and my legs twitch and jump — sometimes enough to wake me — while I sleep.
One down and a lifetime to go.
I feel weak when the treatment finished. And hungry, though I’m not certain I want to try food on my still-touchy stomach, but it’s been three days since I’ve had solid food. I am profoundly hungry. I also know that the erratic food routine has to be very — that may not be strong enough — highly detrimental to my diabetic routine.
My blood sugars are like a big-time roller coaster: Heart stopping highs and lows so low they can throw you into a coma. I’d never really dealt with low blood sugars but I know pretty much what to look for now: My eyesight goes funky; light starts to hurt my eyes; I break out in a cold sweat; I start to shake; my thinking gets a little befuddled.
If I’m asleep, the first warning is waking covered in sweat.
The solution is to get some glucose into the system pronto.
Early the next morning — about 3 a.m. — I woke in a sweat, felt strange and put the call light on. When the nurse got there she could tell I was in the middle of a low blood sugar. I remember hearing the number 48 (normal is around 100) when she tested and I remember her telling the other nurse to go get something.
Then I started moving away, it didn’t feel physical, it just felt like I was removing myself from the scene. I faintly heard the nurse call my name a couple of times. She sounded like she was 30 or 40 feet away from me. I know now that what they did was the equivalent of mainlining glucose into my blood stream to pull me back from slipping into a coma or worse.
I told a friend afterward that if that wasn’t a near-death experience, it was the closest I wanted to come to one for a long time. That’s still true today.
Our small living room filled quickly when the ambulance arrived. Cedar Rapids sends police, fire truck and rescue vehicles when they receive an emergency call. There were at least six crew members and officers circling me asking questions, taking vitals and preparing me for the collapsible gurney.
When you’re full of toxins and sick as the proverbial dog, that much action and urgency can be confusing to an already befuddled brain. I wasn’t out of it, but I knew my brain wasn’t firing on all cylinders either. I just wanted everyone to slow down so I could focus.
They got me on the gurney without incident (read that without my retching my empty guts out) and plopped my bag of meds on my belly. Mom lent me a polar fleece robe to keep me warm. I asked for my sunglasses because my eyes were so light sensitive I felt I was living in a world lit by a constant strobe light.
My teeth, I realized a couple of days later, were still in the denture bath on the bathroom shelf at home. I really didn’t care.
The only way out of the house with the gurney was out the front door and down the slope in the front yard. It was tricky for the crew and for me. I felt safe, but sick, once inside the ambulance.
Why are there no shock absorbers on ambulances? Or was it just me? The short three or so miles to St. Luke’s Hospital felt rougher than a jetliner experiencing major turbulence. It also seemed hours instead of minutes long.
There was no ER screening since my doctor had called ahead. I – holding my upchuck basin — was admitted straight to a nursing floor and the processing began. High on the list, though, was a shot to help ease the nausea. It did begin to help in a few hours though the nausea returned spasmodically, literally, for the next few days.
I sat, propped up in the bed, side rails firmly in place, wearing my sunglasses in the darkened room and clutching the basin. I was miserable.
When my doctor came in that evening she told me first that my “friends had snitched” on me referring to the phone call from my friend’s physician husband. I said I hoped she wasn’t offended by his call.
“Not at all,” she said. I actually was more than a little touched to think he would take it upon himself to intercede in what can be very delicate territory and grateful he did.
Dialysis would take place in the hospital the next morning, the doctor said.
I have to admit I was a bit fearful at the thought of a second treatment considering the effect the first seemed to have on me.
Aunty Em, Aunty Em! Please stop the world from whirling around me!It was, too, every time I stood up.
I was so weak and disoriented that Mom, who’ll be 89 in November, pulled out her second walker so I would be more safe traveling the hallway to the bathroom. It seemed one of the longer journeys of my life to shuffle from the living room to the bathroom clinging to the walker for support.
It was a long, long night, too, as I drifted in and out of a restless sleep. Finally morning came and I was on the telephone talking with a friend and nibbling at some canned peach slices when it hit. Nausea. Big time nausea. Nausea so strong I broke into a cold sweat.
I stopped eating. I stopped drinking. I stopped taking my medications except for the insulin I administer through shots. Moving wasn’t necessary to trigger the nausea, it was there all the time. For 32 hours before I called the ambulance to take me to the hospital.
At one point I’d managed to make to the bathroom and sat on the stool. My mother came to the door saying, “let me help clean you up a little. Maybe you’ll feel better.”She came into the bathroom and moistened a washcloth with cool water. Mom used to be about 5-feet-5 tall, but age has shortened her stature and bent her back. But she was still trying to care for her child as best she could.
She took the cloth and tenderly started to daub at my face. Up close her skin looked like rice paper but her face and her stance, oddly, looked like a concerned mother chimpanzee. I remember in the mentally altered state I was in thinking: “Bonobos…we’re like chimpanzees, the mother caring for her child” and how there seemed to be little difference in the cherished care tendered.
That mother-child bond truly transcended species for me in that moment. Of course, as poisoned as my body was, it was only the first of many odd observations I explored during the next week or so.
The friend I was talking to when the nausea struck is a nurse. She’d been telling me for weeks that I was “under reporting” my symptoms. Her husband, a doctor, unbeknownst to me or my friend, after hearing my symptoms, did the unthinkable: He called my nephrologist to tell her he thought I was sicker than I knew and perhaps she was unaware of the fact since I was a new patient. Bless him.
I had called the nephrologist Sunday to tell her how sick I felt and she asked if I thought I could tough it out until the next treatment on Tuesday. What did I know? All this was new to me so I said I supposed I could.
On Monday, the nephrologist had the dialysis charge nurse call me to ask how I was doing. “Do you think you should be in the hospital,” he asked. “Yes,” I said and told him I had been just about to call 911 for an ambulance when he called. “I’ll call the doctor and have her arrange for you to be admitted right away,” he said.
Finally, about 4 p.m. that Monday, I was in a hospital bed with a shot for nausea and the side rails up to keep me from falling out of the bed. About midnight, about 40 hours after the nausea began, it started to subside. I was in the hospital for a full week as they monitored me and adjusted medicines, etc. as my body struggled to rid itself of the toxins in my body.
Add to that my blood sugars soaring from highs in the mid 200s to sinking so low I started to go into shock. I was so light sensitive that I sat in my room with the blinds drawn wearing my sun glasses and my eyes still hurt.
Enough for now. I’ll tell you more in the next post.