I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Bill Peckham on January 08, 2007, 09:53:57 PM
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UPDATE 9/2011
I some how need to continue this to include these last 16 years, but going year by year doesn't really fit the experience of it being one continuous process. I'll try to bring my dialysis story up tp date by writing biographical essays on a theme, choosing from the thick biographical threads that time weaves together. Working. Volunteering. Traveling. Advocating. Dialyzing. Maybe others.
Dialysis is central to a lot of my story. My volunteer and advocacy opportunities came about because I use dialysis. Travel is kind of a hybrid connecting work and dialysis. Work is mostly the nondialysis part of my life. I work through the Carpenters Union as a Tradeshow Specialist. Day to day it just the job: setting up and supporting tradeshows, conventions and events. Work (http://www.billpeckham.com/from_the_sharp_end_of_the/work/) is going well right now; Work is the first thread I'll write about.
Wednesday marked 21 years using dialysis. My 21st Dialyversary. The only way I can imagine doing it, is one day at a time.
UPDATE 3/2008
I have a blog Dialysis from the Sharp End of the Needle:http://www.billpeckham.com/from_the_sharp_end_of_the/ (http://www.billpeckham.com/from_the_sharp_end_of_the/)
I started the blog right after Christmas as a way to write more. I post about dialysis reimbursement issues and I have found writing about it helps me understand it better. For instance you can read my posts about the current issue of "expanding the dialysis bundle", this changes the way Medicare pays for dialysis: http://www.billpeckham.com/from_the_sharp_end_of_the/dialysis_esrd_payment_bundle/index.html (http://www.billpeckham.com/from_the_sharp_end_of_the/dialysis_esrd_payment_bundle/index.html)
I'm know for traveling. In the 17 years I've been on dialysis (as of 3/08) I have dialyzed on five continents in 21 countries. Since starting dialysis I have visited 34 countries. See the whole list here: http://www.billpeckham.com/from_the_sharp_end_of_the/2010/01/travel-on-dialysis-is-something-you-can-do.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2010/01/travel-on-dialysis-is-something-you-can-do.html)
I continue to travel - the last two trips have been using the NxStage, those posts are here (complete with airline service reports):http://www.billpeckham.com/from_the_sharp_end_of_the/travel/index.html (http://www.billpeckham.com/from_the_sharp_end_of_the/travel/index.html)
Here is a link to a brief personal narrative: http://www.billpeckham.com/from_the_sharp_end_of_the/bill-peckhams-brief-perso.html (http://www.billpeckham.com/from_the_sharp_end_of_the/bill-peckhams-brief-perso.html)
And I do refer to myself as a dialyzor, which I explain here: http://www.billpeckham.com/from_the_sharp_end_of_the/2008/01/i-am-a-dialyzor.html (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/01/i-am-a-dialyzor.html) around me you're free to call yourself whatever you wish, to each their own.
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And so it begins
October 1985
I graduated from Central Washington University and spent the summer backpacking in the Cascades (in other words I was feeling pretty good); moved to Seattle in September and began to interview for my first post college job. I had graduated with good grades with concurrent business degrees and had a good work history. Three or five interviews into the process I received word that my Dad had died suddenly of a heart attack - he was the senior executive at a meeting in Boston and appeared to fall asleep, no one had the guts to try to wake him.
I spent three weeks back in the Chicago area (where I grew up) for the funeral and its aftermath before deciding to return to Seattle by Amtrak at the end of October. In the ‘60s I had gone with my Dad to business meetings in New York by trains - some of my first real travel experiences. Back then, in the ’60s/’70s I had to wear a tie every time I traveled, first by train then later in the ‘70s I use to have to wear a tie when I flew. I was a miniature businessman in training.
Anyway, on this trip returning from burying my Dad I drank the train dry of scotch by the time it pulled into Seattle. I returned to my minimally furnished one room apartment over looking a tire shop. My world had changed in ways I felt but couldn’t put into words. I wondered what would happen next. The very next morning I woke up with swollen ankles.
Swollen ankles? Did I somehow sprain both ankles while drinking and not know? They looked really sprained but how weird they don’t hurt. Now after all these years I think I had declining kidney function for about a year at least if not five (the initial trigger could be the abscessed appendix when I was 16) but at the time I just had swollen ankles, How bizarre, I thought.
I entered the medical system for what has turned into a 21 year run later that day after catching a movie with my college roommate Doug - I believe the movie was Commando - and drinking a few beers. Of course as I drank the swelling continued up my legs. That is so weird. For two and half years I rode a roller coaster of hope and despair, I had good docs and bad but it seemed like I always ended up on the wrong side of 9 to 1 odds.
Late 1986
I tried working, doing anything but before EPO CKD meant anemia. And really I didn’t care. I had decided that if I ever was going to travel it would have to be now or never. With a creatinine of 4.1 and a hemoglobin around 9 I decided to live the dream and take my first trip abroad. I had a year, maybe two, before I would need a transplant or dialysis so I decided to go big and the plan was to follow the sun. Sponsored by a sympathetic Mom I’d head west and go around the world. I wanted to experience a lifetime of travel in one trip – hiking the Milford Track in New Zealand, attending an opera in Sydney (Verdi, “The Robbers“), diving the Great Barrier Reef, climbing Ayres Rock, shopping in Hong Kong and trekking in Nepal. After Nepal the plan was to travel on to Europe and to use Israel as a jumping off point for travel to sub-Saharan Africa. A six month trip in all.
March 1987 Nepal near the Annapurna Mastiff
As I squatted in the wind blown privy, yet again, I invent (or discover?) the Misery Index. On a scale of one to ten, this was a ten: I could not imagine being more miserable. It was in these dark hours of early morning, on a nameless Himalayan ridge with only a piece of canvas between me and a howling sleet storm that I realized: if I lived it could only get better. I could not imagine anything every being as bad as dysentery during an entire three week Nepalese trek.
This was quite a change from two weeks earlier when while SCUBA diving on Australia’s Great Barrier Reef I was pretty sure my life would never be any better. I was young of course (23) and as it has turned out I was only half right, I have never again been that miserable.
I did live of course. I had bought a tape player in Hong Kong and three tapes (remember cassettes?). One of the tapes was So by Peter Gabriel. I listened to one song over and over and over: Kate Bush & Peter Gabriel singing Don't Give Up. Don’t Give Up, over and over. And I haven’t yet and I’m still looking for my Kate Bush and a place where we belong. As I trekked with dysentery days turned to weeks - days of walking nights of, um, eliminating. Finally we came to the rafting portion of the trek which my main memory is that the food was better and there were a lot of monkeys. Three days on the Trishuli River later we floated out of the mountains to spend a couple days in a jungle camp where we were to ride elephants and look for rhinos.
This is what started this whole Nepal detour. When I was like 6 or 8 my Grandparents came through town after one of their far flung travels. I asked my Grandma where they’d been. “Why staying in a tree house, riding elephants and looking for Tigers.” Yeah right. But they had pictures. They had been at Tiger Tops a famous resort; I knew from that moment on that life offered some amazing possibilities. Some day I’d follow my Grandparents and travel around the world.
So here I was, sick as hell in a Nepalese jungle shack (Tiger Tops was out of the budget) thanks a lot Grandma ;) . Rosy had been nursing me for the last couple weeks, she through some shady dealing had scored some ganja. That as it turned out helped a lot (note to self) and the camp did have a shared flush toilet. Things were looking up. Once I got back to Kathmandu I’d go to a clinic and get better.
Back in Kathmandu I went to a clinic recommend by both the American and British Embassies. They treated me for one type of dysentery I had the other, less common version. By the time I got to Thailand I was sick again. There would be no R & R in Phuket. I aborted the trip without ever leaving my Bangkok hotel - flush toilets and room service. I returned to Seattle sick and defeated. I was sure I would never travel again, at least not the sort of independent travel that I had spent a childhood imagining.
At SeaTac airport I was too weak to leave the plane. I was quarantined before being taken by ambulance to the hospital. This part I only know from second hand sources. I was in coma for three days. My Mom was told if I did come out of it I’d be brain damaged but I just woke up. They asked me if I knew where I was? Thailand? No. Evanston? Meaning Illinois where I was born. No. Seattle? Yes. Whew, I made it back.
Summer 1987 to summer 1988
When I left on my around the world trip my creatinine was 4.1; by the time they let me leave the hospital it had improved to 3.3. I joked that maybe dysentery was a cure. I wanted to work but I found it very hard to interview for a job. My life seemed to be up in the air, I was waiting to be sick enough to get a transplant - how could I commit to an employer. That and it all seemed so pointless. I tried working at a pizza parlor - reprising the job I had in high school - but that lasted only a week. In college I had often imagined myself joining the Peace Core something I was sure was now forever out of the question so perhaps that was the appeal of joining VISTA - they billed themselves as the domestic Peace Core.
I was trained to train volunteers to teach adult literacy. I ended up working in West Seattle in the two low income housing projects - High Point and Park Lake. It was a challenge that I wasn't really up to but I slogged along with a preEPO hemoglobin. I was getting sicker and would be getting a transplant soon. My oldest brother is a match and would donate his kidney we just had to wait until i was sick enough to have the transplant.
I was in total denial at this time, I really did not want to hear about what I would be facing. I assumed that not having insurance would mean that I would have to spend down my assets - mostly assets inherited from my grandparents. I decided to buy a house with a rental apartment which in retrospect was about the best financial decision i have ever made. In January of 1988 I bought a house and by February I had rented out a room and the mother-in-law apartment to former college roommates. I didn't know what the future would bring but I figured I could keep the house for a couple years, until I settled into life with a transplant, and then I could sell it and get on with my real life, the life I was meant to live.
The other good decision that I made in this period is I got a dog. In college my house had a dog my senior year - an Australian Shepherd named Tyler. Doug had showed up with Tyler the first day back preempting my plan to get a dog. I picked up my own black tri Australian shepherd, Brainy up as a 9 week old hellion, about a week after getting the house. No doubt I will always have a dog or want a dog. Brainy was a great dog. He saw me through a lot over the next 10 years.
July 1988
My oldest brother and I take separate cabs to Virginia Mason in Seattle. By the next day his left kidney is inside me making pee. But I had woken up during the surgery and tried to sit up, so they had to go back in and then there was a period of rejection. I start OKT3 treatments which are rough but it did save the transplant.
OKT3 made me feel like I had a bad flu bug including a fever. They use what I call an anti-blanket on me - a plastic blanket sized contraption that circulates cold water. It sucked and not in a good way. The nurse asked how I was doing? I scoffed. “This was only an 8 maybe a 9 on the Misery Index.” I was smiling, shivering and sweating - the nurse I am sure thought I was delusional.
They finally let me out. Sore, over medicated and without control of one of my right thigh muscles (due to nerve damage during the surgery) I was just so happy to go home and see my dog. This was before EPO so the energy difference was huge - I sewed, mending a couple ratty old couch pillows. I also was emotional. AT&T commercials made me tear up - that one where the dad talks his daughter through giving herself a hug from him. I missed my Dad. But at least I was home.
1989 & 1990
For two years I lived with a transplant trying to get the slowly diminishing function to reverse but my brothers kidney was being impacted by recurring FSGS. I decided I wasn’t interested in knowing what that implied and that the best thing to do would be to deny there was any problem at all. I bought a boat, a 34’ CHB Trawler called the Eagles Nest and I bought into a small charter company called Nautilus Yachts.
I dreamed of moving from power boats into sail boats and sailing up the Inside Passage to Alaska or doing the Mexico/Hawaii/Seattle triangle one year trip. I was not realistically looking at the situation but the summer of 1989 and 1990 were pretty good. I was selling boats too after a few months, it was now Nautilus Yachts Brokerage and Charter, and with my partner Doug I managed 12 boats mostly owned by other people - from a 22’ Bayliner up to a 50’ Chris Craft. I even had a second boat of my own a 41’ Chris Craft originally called the Helga N.
The name may have been why I was able to buy the Helga N for such a good price but I had to change the name. They say it is bad luck to change the name of a boat but I say I am not superstitious. I renamed the boat the Tacobud which according to a book I had is one of many local native names for Mt. Rainier. As it turns out it may be that renaming a boat is bad luck
My kidney function had been trending down from the first months of the transplant. By 1990 I can understand now that I wasn’t suddenly lazy. I had no energy because of anemia. I had a fistula created in May of 1990. You would think getting a fistula placed would shake me out of denial but no, I pretty much ignored the situation. If you’ve ever owned or been around boats you know that there is an endless list of chores to do to keep them shiny and running well. I was managing 12 boats during the summer of 1990. It was a hard summer. I’m sure I let some people down.
There were some memorable adventures that summer. Calling Mayday alone on a 48‘ DeFever. Seeing a Trident sub breach seemingly right in front of me - because of its size even a half mile away it looked close enough that I had to swerve to miss it. Sleeping on deck under a clear night sky while anchored out on Sucia Island adjacent to Canadian waters. Good or bad, anything was better than being on land.
Land was where the hospitals were. Land was where the doctors were. At sea it was easy to deny what was in my future. I thought about filling the Eagle Nest’s 400 gallon tank with fuel and at 8 knots heading west out of the Strait of Juan de Fuca into the Pacific. I’d just put along, burning three gallons an hour until I ran out of gas. I figured I’d run out of gas on the sixth day. I’d be adrift, thousands of miles from land, thousands of miles from doctors and needles. If I was swallowed by the ocean it wouldn’t matter, the world wouldn’t miss me.
But no. I was still listening to that same damn Peter Gabriel song “Don’t Give Up”. “So many men no one needs.” I was one of those, it seemed clear that I was not needed. My friends lives were proceeding with marriage and families, careers and growing responsibilities; I was playing with boats. Still, the Kate Bush part of the song haunted me. Don’t give up. Don’t give up, for so many reasons but the big carrot - “there is a place where we belong”. To my mind the song had become a literal narrative of my life. I could correlate nearly each line sung by Peter Gabriel to a actual event in my life but who the hell was my Kate Bush? I would listen to her sing, telling me that it was going to be alright, listing the reasons and I believed her.
In the song Peter seems to get resolve when he determines he is ready to “Stand on that bridge”. I had crossed some rickety bridges in Nepal but I wasn’t sure how that part of the song was relevant but I tried to have resolve.
September 1990
It was sometime after my first dialysis treatment that I came to understand that, baring a medical advance, I would need dialysis for the duration. I was told about recurring FSGS (actually at the time I think it was referred to as FSGN). I was told about the odds of it recurring in future transplants. I made the decision to not think about a
transplant - I would be on dialysis for the foreseeable future.
I started dialysis in the hospital at Virginia Mason (where I had received the transplant) because that's what they did in 1990, at least here in Seattle. They were able to use my right forearm A/V fistula for the first stick, my fistula had matured in the four months since it was created. A highly skilled nurse did the first cannulations in the hospital, my Nephrologist stopped by during my treatment and I wasn't deathly ill. I still produced about a liter of urine a day - I didn't need much fluid removed that first year and I had some function into 1994.
After one or two runs in the hospital (I wish I had kept a journal then, these details are a bit fuzzy) I began dialysis in the Northwest Kidney Centers Patient Education Unit (PEU). Back then all new dialyzors started incenter dialysis in a special unit adjacent to the Home Hemo/PD training units (now dialyzors start at one of three or four training
units). The NKC PEU features individual rooms and pretty much one on one care. When you figure that members of the care team - Nephrologist, social worker, dietitian - stopped by each day initially it seemed like too much care.
I resented the people who came in every day to describe some new twist in the increasingly complicated implications of dialysis. I was living with the same people I lived with in college and we did pretty much the same things we were doing in college. Eating pretty much the same diet. How was I suppose to deny the reality of dialysis if I had to change every aspect of my life? I was suppose to be running a yacht brokerage and charter company; by now it had become clear that a life spent half on the water was not compatible with dialysis.
As mad as I was the staff had seen it before and let me be mad while trying to convince me to accommodate the situation. Since NKC is the first outpatient dialysis provider in the world the staff were then and are now some of the most experienced in working with dialyzors. They tried to talk to me about home (they being the staff including Dr. Chris Blagg) but I was not receptive at all. I was determined to keep dialysis separate from my "real life".
Usually NKC keeps people in the training unit for just three to six runs but they kept me there from September to December. I was an angry person at that point, not at all fun to be around and I am sure they just figured the PEU was the best place for me. The low point that I recall was while being dialyzed on I believe Thanksgiving or it may have been the day before.
I had a why me, poor me moment. One downside to dialyzing in the individual rooms of the PEU is that it can accentuate the sense of isolation and increase the sense that you are in this alone. That afternoon I felt very alone with little to be thankful for; I felt totally cut off from support. Even the staff had learned that I was happiest when interacted with the least but that attitude was backfiring on me at the moment.
If I could have posted to the internet that day in November of 1990 I think I would have shared my doubt. I would have had to have admitted that I might not be up to it nor did I really see the point.
January 1991
By December it was time for me to move out of the PEU. With the help of Cheryl Lake (an NKC staff person who helps organize travel for NKC dialyzors on the move and for dialyzors that would like to visit Seattle) I had organized a trip to Chicago for Christmas. When I started I distinctly heard them say that I could still travel so I said I wanted to go to Chicago for Christmas.
At the time everything was so new that I probably didn’t notice the extra blood work and forms to sign. I had a trip planned and that seemed like a big improvement. I had come to dread certain questions: What’s going on? What do you do? How’s it going? It seemed like nothing made sense unless you knew I was a dialyzor and so I would end up telling people way more than they wanted to know. With a trip planned I could talk about something people liked to talk about – travel – and I could make it through an entire conversation with a stranger without mentioning dialysis.
I remember the first time I treated outside of the PEU. It was the Tuesday before Christmas the same day a snow storm hit - I left as soon as it started to snow planning to hang out a friend's apartment who lived close to the unit. No way I wanted to be late the first day in the Limited Care Unit. In the end it took me four hours to make the normal 20 minute trip. Walking the last four blocks I arrived just about on time. Dr. Sawyer the Medical Director was handing out sandwiches and I thought wow up here you get sandwiches. The observation was quickly corrected. I did take several stranded dialyzors home, By the time dialysis was over it was late and the streets were snow covered but passable in my Subaru. I felt fortunate that I was able to drive myself and did not have to rely on taxis and van services. My situation felt terrible but it was not as bad as other people's situation.
I don’t remember the details of that first trip. It must have demonstrated to my satisfaction that travel was possible. I must have not liked having strangers put in my needles because within two months of getting back I had learned to self cannulate. One of the staff – April – kept encouraging me to give self cannulation a try. I said no but April said she knew I would think it was way better and did not take no for an answer.
Finally I decided to give it a try and after psyching myself up I slid the arterial needle right in. It had taken less than 6 months to go from averting my eyes while staff cannulated my fistula, to taking control and doing it myself. I found that by doing more myself made dialysis less of a burden. The clinical consequences of dialysis – nausea, lack of energy - was bad enough without compounding the misery by adding the sense of having no control.
I mark those two events - traveling and self cannulation - as the first milestones along what has stretched to be a long road of comparably gentle terrain. I saw I had it pretty good but really I was only doing the minimum. Between treatments I watched CNN as it covered the first Gulf War live. The annual January Seattle Boat Show at the old Kingdome had been a disaster.
A luxury tax had gone into effect January 1 (that luxury tax squashed all boat sales) and on the day the Boat show opened the air war started – right on the TV. You could have fired a cannon down the center aisle of the Show and not hit a single attendee. There may have been a few non-friends/family of the exhibitors in attendance but I know I did not book a single summer charter – zero for the main selling event of the year. I gave up. I was out of the boat business by March and had sold both of my own boats by the end of the summer – at a loss since I had to pay the luxury tax to get anyone to consider the purchase (note to self people who by boats do not like paying taxes).
I was starting to engage with dialysis but only as much as I had to – cannulating myself made dialysis tolerable and travel simplified. I settled into a routine of TV watching, dialysis and vacation planning.
Spring 1991 - December 1993
These seem like lost years. I sometimes refer to this period as the I hoped it would rain period - because if it rained it would match my mood and I would feel less guilty about not doing anything. I fell into a routine of dialysis, however, never too routine. I liked to try different shifts and days to try and change it up a bit. Eventually I settled on the evening shift. I was self cannulating now and that made dialysis less stressful and more routine. I traveled around the US hooking up with friends and family for golf and relaxation. I wish I had kept a journal - there was a trip to Hawaii, S. CA, north woods of WI, NY NY, Orlando, AZ and several trips back to the Chicago area.
Travel seemed like the only normal thing that I did; it provided an answer when people asked How's it going?. I hated that question because there is no way urinators can relate to the day to day experience of being on dialysis and without understanding the implications of being a dialyzor my life didn't really make much sense. When I wasn't traveling I mostly hung around the house but I must say I remember the house as a fun place to be. I still rented a room to my buddy from college and now my downstairs apartment had two friends, a couple and their dog I knew from college days. We'd take the dogs the park most days, take turns cooking, do routine things together.
I remember it as a live in the moment lifestyle. No real plans or structure, just go with the flow. But it was travel that made me feel normal. Travel gave me something to talk about. I always had an upcoming trip, or a just completed trip to bring up when asked How's it going?, What's new?, etc. I was on Medicare which I learned did not pay for dialysis outside the US but at least inside the US I just had to pay the 20% not reimbursed by Medicare. The US seemed full of travel opportunities and going to new dialysis units added an element of adventure (even danger - there are some sub-optimal units out there. I'm looking at you Palm Desert) to the travel that made it even more appealing.
December 1993 to New Year 1994
Most every year I am expected to spend Christmas in the Chicago area which let me say I love my family but Chicago in December is not an ideal vacation destination. There is always some melancholy but this year it seemed to be worse. I felt like I was in a downward spiral of not eating well, not sleeping well and having little energy or enthusiasm. Reliving the family Christmas rituals only reinforced that I was not living a life I wanted.
Usually I do not make New Year's resolutions but this year I did. It occurred to me that my friends all complained that they did not have the time to do things they wanted to do while I seemed to have nothing but time, so I resolved to do the things they wished they had time to for. For the year I resolved to spend 35 nights sleeping on the ground - basically camping 10% of the year. Play 50 rounds of golf - on average once a week. And spend 10% of every day outside - 2.5 hours a day outside, rain or shine. It wouldn't matter what I did outside, I could sit on a bench in the rain, I just had to be outside.
January 1st I spent most of the day outside - it felt good.
January to Spring, 1994
By 1994 I had seen enough units in the US to have some idea of the variety. Each year I had taken a couple trips that required setting up dialysis as a visitor. By January of 1994 I had been to more than half a dozen units. I had a print directory of dialysis units called "The List". It was organized by country but 90% of listings were in the US; the US section was organized by state and then alphabetically by city. Using The List I could suggest vacation destinations or quickly determine if I could join a trip. Usually there was a way.
There was Daytona Beach two summers in a row '92 & '93 getting weekly rates at under occupied beach front hotels. Golf trips to Arizona with my mom, going to spring training, Vegas with friends, NY NY with the family and dialysis in Yonkers, tagging along on a friend's Hawaii trip. On top of the annual winter trip to the Chicago area for Christmas I usually visited in the summer before or after a week in Wisconsin where my family had always vacationed - Dairyman's Country Club in Boulder Junction. If I couldn't get dialysis in Woodruff 30 minutes away I'd have to drive an hour each way to Rhinelander.
I traveled a lot, I'd never say no to a trip if I could figure out where I could get dialysis. Travel let me feel normal and to be seen as normal. I wasn't working. I was living off savings and rental income from renting out my downstairs apartment and a spare room upstairs. It was an unstructured life other than the routine of incenter dialysis, 3x week for 4.5 hours. The dialysis was the constant. I put in my own needles so the dialysis process was pretty similar place to place but the venues, the amenities and the policies ranged all over the place. This wide variety highlighted things great and small that units could do to make dialysis more or less of a burden.
I visited units with blanket prohibitions against food and/or water and/or visitors. Call buttons at each station were rare outside of NKC units, curtains for privacy, individual TVs (let alone cable). Some units were clearly afterthoughts crammed in the basement of a regional hospital, others were large ward style units with facing rows of stations under bright florescent light. There was the nice ones too that really highlighted how a well run unit could make dialysis easier. Less of a burden.
One thing I would never have considered could be done differently was a unit's scheduling policy. At NKC and other well run units dialyzors have staggered on times. People would show up at their designated time and there would be a recently vacated chair waiting. Of course there could be a hiccup earlier in the day throwing the timing off but if things went as reasonably predicted the chair would be empty. By traveling I experienced another approach: units would have an entire shift come at once and then call dialyzors in by name in no determinable order. As a visitor I was at times last to be called which meant that I had to wait an hour or more after arriving to be called. It created a poisonous atmosphere of resentment between those called sooner and those called later. I can think of no one thing that is worse for how a unit feels.
One result of this exposure to a range of units was that I felt a great attachment to my provider. I'd go on vacation figuring that I could put up with anything for a week and it made me appreciate my week to week dialysis in a way I couldn't have without my travel experience. By now the word of my travels had spread and I would get calls periodically to ask about my experiences going to a certain unit or destination. It was before I had ever heard of the Internet the only way one heard dialyzor travel stories was word of mouth.
By February I was doing pretty well on my resolutions - I had taken a golf vacation and even played some golf in Seattle, taking advantage of unpredictable periods of good weather. Every day I would spend the required two and half hours outside. Walking the dog, throwing a football (later a baseball) with house mates rain or shine. I structured my days around achieving my resolutions. The one area I had not made enough progress was spending 35 nights on the ground. I spent a dialysis weekend camping on Blake Island which is State marine park a short tour boat ride from downtown (dogs ride free). I would need some planned trips if I was going to meet my goal.
I took a National Geographic Magazine map of the United States which showed the states and major roads and tapped it to a large purpose bought piece of cardboard. My dog Brainy and I would drive east to Chicago, camping and or sleeping in my Subaru wagon. How to get to Chicago and where to go once I was there was up in the air. I wanted to go for over a month. I wanted to go on a real honest to goodness road trip. With The List in hand I considered my options and started calling units.
Working
When I started dialysis in September 1990 I was operating a small yacht charter and brokerage business. By January 1991 I had sold my two boats and my interest in the business. I was out of work for the next four years. Towards the end of 1994 I started trying jobs to just get use to setting the alarm clock and getting up and going in the morning. I delivered checks over the holidays. On January 1 1995 I didn't know what I wanted to do; I couldn't imagine myself in any job.
In mid January K called, probably looking for my 'free time rich' friends, hoping to find bodies to fill out a shift installing the Seattle Boat Show in the Kingdome. I said I'd do it. It was a graveyard shift. I said I'd do it. Putting down carpet. I said I'd do it.
The death blow to my yacht brokerage business had been the '91 Seattle Boat Show. The boat show the time I needed to get charter business for the summer and maybe sell a few boats. On the opening day of my big chance to stay in business, bombing operations commenced in Bahgdad, "Operation Desert Storm" was broadcast live on CNN. It was compelling television, so compelling in fact someone could have fired a cannon down the main aisle on any day or time of the 9 day show and only hit an exhibitor or one of our committed friends. Nautulus Yachts had zero business out of the 1991 Boat Show. It was a disaster. Nine grim days. So when K called looking for labor for the 1995 Boat Show, it seemed poetic. And after 1991 how bad could this be?
That first shift was brutal, over night laying carpet. The Kingdome was vast, it all had to be carpeted by morning. Uhg. No wonder the union couldn't fill the crew call, but taking that shift (and finishing it) was my in into the union. If the union can't fill the call anyone willing to work can take a shift, and by taking a shift you are automatically in the union on a probationary basis. Once you're in, even on a probationary status, you can be called out for work. My first call was that Monday, to the warehouse adjacent to the office where my friend K worked. I had no idea what I would be doing.
For eight hours I all I did was watch someone make signs , help the best I could and clean up after she was done. It was an interesting process, but it was the same process again and again, up to thirty times an hour for eight hours. We were making booth signs on a reverse block press. Basically the contraption Gutenberg invented.
Every booth at a tradeshow gets a 7" x 44" cardboard sign with the company name, usually a booth number, sometimes city/state and on occasion a logo. Every booth gets one of these signs, it was true in 1995 and it is true today in 2011. This company set up tradeshows. It was a big national firm, this was the Seattle office. I came to find out that Seattle is a small city by tradeshow standards, but even at the small end of the scale it meant someone had to make thousands of these booth signs every month.
The next day I got to make my first sign. To make a sign I first mixed the ink to the right constancy; I prepared the work surface, a heavy metal platform on sturdy metal legs. It was inscribed with a grid perfectly square to a rolling press on the left of the platform; on the platform's grid I laid out metal bars, one for each line of text. I used strong rectangular magnets to hold the bars in place; on the pars I would arrange letters carved from blocks of hard wood. Each line of text was laid out from right to left in mirror. I used magnets to hold the words together, spacing them to fill each line; once arranged I would ink the blocks with a little hand roller, in just the right way, not too much, not too little; with everything prepared I carefully squared the sign stock and clipped it in place along one edge by operating a foot lever; once the cardstock was down I would pull the roller press to the right then tho the left pressing the inked blocks of wood into the sign. From there the sign went on a drying rack and it was on to the next sign on the closely typed list. With a lot of practice each sign took about two minutes to make.
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Welcome Bill to IHD.
What a fantastic introduction. Good to have you here.
Sluff
Moderator
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Hi Bill, I grew up in Spokane and am trying to move back home where all my family is.
I have relatives in Kenmore and Woodenville.
GO SEAHAWKS!! Yahhhhhooooooooo
Welcome to our site ! :welcomesign;
Rerun / Moderator
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:welcomesign; Bill
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Welcome to our community. Wow! what experiences! We look forward to hearing more from you. Let us know how you are doing on dialysis.
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Welcome Bill, good to have you aboard.
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Welcome, Bill! :welcomesign; Looking forward to more of your interesting story!
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Welcome Bill, a dialyzor and world explorer--or did you say a schnorer? Hooray, Hooray, Hooray!
Good to have you join the IHD community.
:beer1;
PS: Could you start a thread about why you call yourself a dialyzor? I mean you're not a large piece of Polysulfone! ;)
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Hi Bill, I've frequently followed your travel reports on other boards and I am so glad to see you here. Your experiences do not just educate but also inspire. Your solo trip w/ the NxStage was the real clincher in convincing my husband that he can do home hemo and really live his life.
This is a great group of straight-shooters and you are a great addition. :welcomesign;
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Hi Bill, Welcome to ihatedialysis.com. Wow, great intro, I am sorry to hear about the loss of your dad. Looking forward to hearing more from you :2thumbsup;
Goofynina/co-Admin.
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Welcome Bill. What an adventure you had. Wow, if only we all have the resources and opportunities to travel, it would be wonderful to free our minds of our health problems. Back when I knew I was going to be on dialysis, i took a trip to China with my friends. I will never forget those two wonderful weeks there. Oh by the way Rerun, I was cheering for the Seahawks last year to win the Super Bowl and they should have if not for the idiot refs with bad calls. They have a very good chance to make it back to the Super Bowl again. Anyway, welcome to IHD Bill.
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:welcomesign;
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Excellent introduction! I have a friend that travelled the world, that must be an incredible experience. :welcomesign;
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Welcome :)
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Hi Bill,
I too have seen your posts on other message boards & I've read a lot about you so when I saw your name I wondered if you were thee Bill Peckham.
You are an inspiration to everyone on dialysis & you really have to write a book.
Your intro was great, really held my interest & I want to hear more, lots more.
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The first step is to admit your kidneys suck.
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Welcome! I'm looking forward to your posts.
:welcomesign;
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:welcomesign; Bill, glad to have you join us on this board. I, too, took the opportunity to travel before beginning dialysis- to the land of my birth and ancestors- Germany . I also saw Paris, Denmark, and part of the Alps, doesn't travel broaden the horizons beyond belief???!!!! Sorry you were so ill during your travels. Good to hear from you here.
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Thanks for the welcome all. I grew up in Chicago and this weekend the Bears are playing my Seahawks. Go Seahawks - I think my brother will be buying me dinner in Vegas. He gave me 7.5 points.
I added 1988 to my initial post.
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Hi Bill it's me Bill ;D
I just wanted to welcome you to IHD and say I am glad you decided to finally come to the DARK side. You know I was shocked when you joined since you have known about this site for so long and then you really shocked me when you became a "Premium Member" before your first post. :o You know some dialyzors say you are the 2nd most popular DIALYZOR on the net, Lori being the first obviously, well I am coming for that number 2 spot. ;) You may have dialyzed on five continents, but I have dialyzed on the MOON. Beat that. ;D
Anyway I know I already welcomed you in a PM, but I wanted to do it publicly. Welcome to IHD.
Oh and might I suggest you make the DATES BOLD in your intro, it will help people find the new updates faster. :beer1;
- Epoman
Owner/Admin
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:welcomesign; Welcome Bill!!!
EDITED: Fixed Icon Tag - Sluff, Moderator
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:welcomesign; Bill Peckham! You can sure contribute a hell of a lot here with your experience!! :welcomesign; How many videos have you put out so far?? I had my nurses take a look before doing buttonhole on me ;) :2thumbsup;
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The Bold has been added and there are five videos online - two have good production values and three not so much.
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I want to know more about the moon story from Epoman. Welcome Bill!
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Another couple years added. Reading lost sheep's post got me remembering. Writing this is like therapy.
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:welcomesign;
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Hi Bill,
I recall being referred to your webpage a few years ago when I was researching "traveling on dialysis" for
our daughter. We kept postponing a trip for two reasons. One, we were afraid a change in centers,
even temporarily, would introduce an infection. Secondly, we didn't want to be too far away in the event
a call came through with a kidney. In 3 years we never went more than 3 days from her dialysis center.
I hope you will share more about your travel experiences on here.
Welcome!
~Karol :waving;
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hello Bill,
I am just down the road from you, in OR. Lived in wet Olympia before moving to Bend 12 yrs ago. Have ties to Seattle, my son plays hockey up there. I have enjoyed reading your intro. Too bad about the Seahawks, we're fans also. Caught Peter Gabriel's Secret World Tour at the Tacomadome in the 90's, and heard Don't Give Up live. No Kate Bush, but Paula Cole was just as spectacular. Nice to meet you,
Kelli
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WOW!! FANTASTIC INTRO!! I too dreamed of world travel as a young girl, and although I've been to a couple of places, unfortunately, finances limited my choices. Even though finances continue to limit my choices, I still dream of all the places I have yet to explore...SOMEDAY!! I suppose I'll be showing everyone how "fresh outta the plastic" I am, lol!, but I've yet to build up the courage I feel will be necessary to venture far from home as yet... :( ...I am, however, VERY encouraged by your ongoing travels, and am feeling that old familiar antsy feeling about going somewhere...ANYWHERE! Even on a limited budget (pre-dialysis), Hubby and I managed to get in at least 3-4 "trips" a year--I am the QUEEN of $200-300 weekend jaunts!! :) (of course it wasn't China, but the mountains, or the beach, or even a night or two in an upscale motel in a "foreign" metropolis sampling the fair of unfamiliar cuisine, or night life suits us average hicks!! -eating out somewhere besides Golden Corral is adventurous as far as hubby is concerned!! lol!) Finances are worse than ever now that I'm outta work-but I'm thinking with a few MORE frugal budget choices, I may be able to swing SOMETHING!! Welcome aboard Bill, and THANKS for the inspiration!! Please do continue to share your travel experiences so that we may live vicariously through you, until, that is, I get real confident about dialyzing away from home and STRIKE OUT!!
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Thanks for the welcome. Kelli does your son play with the Tbirds? I had Tbird tickets about 20 years ago when I was a urinator. Maybe start a Tbird thread in OTs
melshell I was thinking I would copy existing travel writing into my intro - a entire biography in one place. But if anyone is curious I have posted most of it on the globaldialysis.com blog.
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Sleeping on deck under a clear night sky while anchored out on Sucia Island adjacent to Canadian waters.
I love your writing style - by the time I got to the quote above, I was wishing I could be there, too, and I'm scared of the water! :-\
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Wow, Bill, that was a great introduction! I'm glad you've joined the site, and I'm looking forward to your posts! :welcomesign;
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Thanks for the encouragement. I've added a a bit more - through starting dialysis.
For me the only question is when to stop writing and get on with the story. Just writing it out I've thought of things for the first time in a long time.
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I think it would be so great to have a section on IHD that focuses on "Traveling on Dialysis!"
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I'm going to Aruba a week from today. My epic introduction (I'm trying for 10,000 words) is just getting to the part where I start more elaborate travel - '94: 40 day/11 unit/22 state road trip; '95 3 weeks in Costa Rica; '96 2 months/7 countries in Europe; '97 1 month 6 countries in Europe; '98 2 weeks land in Europe/2 weeks dialysis at sea Scandinavia; '99 3 months around the world in 27 flights; 2000 in Turkey for Thanksgiving; etc.
There is an article that was just posted on kidneytimes that is written by some one I was traveling with this summer
http://www.kidneytimes.com/article.php?id=20071011194103
Different for me to read about one of my trips from someone else's perspective.
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Bill, What do you do about insurance?
I tried to organize a trip to Hawaii (from Australia) and it became evident that I was going to find it extremely difficult to get insurance to cover me in the States. There was no trouble getting my PD supplies, that was easy. I would be crazy to go without coverage, so I have given up.
Queensland looks like the destination now. :)
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Bill, What do you do about insurance?
In 1995 I join the carpenters union.
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Bill, What do you do about insurance?
In 1995 I join the carpenters union.
Does this cover you overseas? I am not familiar with US insurance.
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Bill, What do you do about insurance?
In 1995 I join the carpenters union.
Does this cover you overseas? I am not familiar with US insurance.
The US insurance system is complicated but yes in general Unions have comprehensive health insurance. My union reimburses 90% of overseas dialysis charges. They are prompt payers too. No complaints from me about my union. Again though there is a great deal of variety among policies. I took the attitude that I should avail myself of the benefit while I had it - I am so glad I did ... because of the weak dollar I could not repeat my trips today. The insurance company still reimburses but everything else is 50% more expensive from my point of view. Now would be a good time to visit the US from your point of view - we just need to figure out a solution to the insurance situation.
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Thanks Bill. I do have private insurance on top of the government funded medicare system Australia has, but unfortunately it does not cover me overseas. I could have pushed the travel insurance company further but it still would not cover me for pre-existing. :banghead; I had no problem with my supplies and Fresenius were great. I just would be crazy to travel to the states without cover.
The holiday is to celebrate turning 40 (ahh) I have booked the Gold Coast. It will still be fun, but Hawaii would have been great with the Aussie dollar so high at the moment!
Thanks for your help.