How Kidney Failure Enhanced My Life

This blog post was made by Henry P. Snickelsnorter on December 24th, 2015.
How Kidney Failure Enhanced My Life

G'day! My given name is Vic Johnson and I have, for 20 years, used the sobriquet Henry P Snicklesnorter in my contributions to on-line forums. I'm a 65 year old West Australian and my kidneys gave up the ghost about 7 years ago.

Although my first love is the Australian bush, I was living in Perth, as it was a convenient base and I could fly to various work locations. Life was good.

In between work projects in the bush, I could indulge myself in things I loved to do. I had bought a sailboat which I loved to take out in heavy weather, a twin cylinder cruiser for weekend rides, a couple of old Mercedes coupes to tinker with, a workshop full of woodworking tools and machinery, and the time and money to enjoy them. All the toys. Yet somehow, something was missing. Perhaps I needed another challenge. I was feeling jaded, losing interest in things I had previously enjoyed, weary at the end of each day. At 58, I felt old, tired and worn out. Unbeknown to me at the time, my deliverance was at hand.

I was doing a stint as an operator at a quarry an hour's drive from the city, working a 12 hour shift, and had to push myself to get up in the mornings and get to work. My appetite was poor. Operating loaders and excavators all day in a high-pressure environment became exhausting. I was becoming very short of breath. Finally, on climbing into the cab of a loader one morning, I was so breathless, I was unable to answer a call on the two way radio. The foreman came to check up on me and we decided I probably had contracted a 'flu virus and had best go see a doctor. On the drive back home, I had to stop and take a nap. My GP's reaction was immediate: “Go to this medical centre, have the tests done that I will arrange and come back and see me immediately when they are completed. I think your kidneys are failing.” And so they were.

Within 3 days I was in hospital, had received three units of blood, had surgery to fit a chest catheter and been to the hospital haemodialysis (HD) unit for my first session. My partner and I had been together for about 6 years, and this was traumatic for her. Me? I hadn't felt better in years. I could breath again, my appetite was back, and I suddenly felt 20 years younger! They dialysed me every day for a week, 4 hours at a time to get the excess fluid off, then reverted to 4 hours every second day. I returned to work and my employer was most accommodating in giving me two afternoons off each week to dialyse. The third session I did on Saturday afternoons. According to my workmates, I looked like a new man and that is how I felt.

After a few weeks, it became clear that my kidneys were not going to recover and that my future lay with dialysis. My partner and I were given an in-depth explanation of the options: HD at a satellite centre 3 days a week, or peritoneal dialysis (PD). For me it was a no-brainer. I could see that PD, particularly manual exchanges, would give me a freedom and flexibility that I couldn't get with satellite based HD. I had a stomach catheter fitted and continued with HD while the incisions healed and the catheter was flushed. After 3 or 4 days, my stomach was quite tender and consensus was that it was just post operative soreness. The flushes were showing a lot of fibrin but I was told that it was not uncommon. In another 3 days, I had peritonitis and was in agony. My catheter tip had migrated up into the shroud surrounding my liver and I had, according to my nephrologist, the highest bacterial count he had ever seen. Back into hospital and I hadn't even started training yet! That was sorted out and I went back home as a fully fledged CAPD user and returned to my job at the quarry.

After a short time getting used to it all, I headed north with a caravan and two months of PD supplies to take up a job as a plant operator in a remote location about 1,000 kilometres north of the city. That went really well and I returned to Perth after 6 weeks, re-stocked and headed off again. It all went without a hitch. PD was working well, the hot environment meant that I didn't have to limit my fluid intake, I was passing at least 1500ml of urine a day and eating well. To the horror of my care providers, I had been doing my exchanges in the cab of the machines I was working in. It was perfectly safe as long as I kept everything spotlessly clean, used the disinfectant materials I normally would, and turned off the air conditioner fans while I connected and disconnected. That work was completed without any hitches and I started driving road trains for my nephew, who had just commenced his own transport business.

Toward the end of a 2 week break in Perth, I noticed stomach discomfort and a small infection at my exit site. I went to emergency, had tests taken and they they started me on an infusion of Vancomycin and Gentamicin. Unfortunately, no senior nephrologist was available, and a less experienced doctor was responsible for prescribing. The symptoms disappeared within 2 days, but the antibiotics continued for a month. One week after the last infusion, I was returning from a trip to the south of the state to pick up a tanker and noticed when I stopped for fuel that I was having some difficulty walking a straight line. The morning following, when I got out of bed, I felt like I was on the deck of my boat in a rough sea: I had to hang on to something solid to stop from falling over. Back to hospital again.

It took several days but the final diagnosis was vestibular damage from Gentamicin toxicity. I couldn't walk unassisted, had severe oscillopsia (bouncing vision) and tinnitus (ringing in my ears). A rehabilitation process was commenced, consisting of having me turn my head from side to side while holding my gaze fixed on a still object, alternating with moving my eyes from side to side while holding my head still (which made me nauseous to the point of vomiting), then walking while being steadied between two nurses and trying to repeat that eye and head process while moving. Lots more vomiting. It was like having permanent motion sickness! The rehab people discontinued that and said they would investigate alternatives. I never saw or heard from them again. I was discharged in a wheelchair with the suggestion that I might wish to use a walking frame or a pair of crutches, and the hope was expressed that it might improve with time. Unfortunately, any improvement has been minimal.

I have, however adapted, spending months learning to walk unassisted, training my body to use my eyes and the soles of my feet to maintain a vertical position, and learning to accept that the world I see is still the same as before, it just appears to move up and down around me as I walk. If I'm careful and focused, I can walk almost normally on flat ground. If I lose concentration, I wobble off course and walk into walls. To some at times, I appear to be severely intoxicated. I cannot stand upright in darkness, so I always carry a torch. If I'm in a room and the light blows, I get on my hands and knees, crawl to a wall, and work my way along until I find something solid I can hold on to and stand up. Uneven ground and slopes present a challenge, but can be negotiated with care. Walking is the major problem. Running or jogging is not possible. The sail-boat and motorcycle had to go. The woodwork shop lay idle for a year before I had the skills to venture in there and start using power saws and other dangerous equipment. Thankfully, most of these symptoms disappear when I am seated, so in time, I was able to test myself driving again.

That was 4 ½ years ago, and through unrelenting practice, self motivation and determination, in conjunction with the amazing capacity of the human body to adapt, I was able to resume working and safely drive again.

But wait, there's more!

Three years ago, while on PD, I developed a rapid and severe stomach ache overnight, which by the early hours of the morning had me in absolute agony. I got myself to hospital (again) had my PD catheter removed, and antibiotics were administered while I was fitted with a chest catheter to dialyse. They found a perforated duodenal ulcer and septicaemia (sepsis). For 2 months, I lay on my back with various tubes draining noxious substances from various parts of my body, being tube fed and suffering a heart attack. At one stage they replaced the chest catheter, wondering if that could be the source of infection. I was losing weight and muscle mass and the medical team seemed at a loss as to what to do next. Relatives and friends had all come to pay what might have been their final visits. Most of this time I was in intensive care.

About that time, I was asked if I wanted to go on. I decided through a haze of pain killers and sedatives, to keep fighting. Miraculously, after what seemed to be almost daily surgical interventions and enough CT scans to make me glow like a neon sign, I began to improve. The infections started to be controlled, the tubes were gradually removed, and I was on the way to recovery after almost 3 months. My weight had dropped to just over 50 kilo's from over 90 on admission and I was skin and bone with muscles that hadn't been used for months. The feeding tube was taken out, then my oesophagus decided it didn't want to be disturbed after all that time and I was unable to swallow food.

Back to the surgical team, a balloon device down the throat to expand the recalcitrant muscle and then it was frozen in place with…botox! Yes ladies, I too, sing the praises of botox. It was thought that I might have some problems with reflux and the procedure might have to be repeated, however, it seems that the indignity of being injected with botox and threat of a repeat caused that lazy muscle to start work again within a week. It's been fine ever since.

On my discharge, I was too weak to dress myself, with no muscle strength at all. So the nurses dressed me and even put my socks and sneakers on. Back into a wheelchair and off home once more to start the process of rehabilitating this poor abused old body once again. Did I say something about challenges earlier on? This, dear reader, is what happens when you tempt the gods. It all gets better from here on, I promise.

I began to eat and exercise and slowly started to recover some muscle and body weight. That is still a work in progress today. Building muscle is a slow process when you're over 60 and your internal organs have been ravaged by the malevolent attentions of sepsis.

Back to dialysis. I was quite happy using the Hickman chest catheter and we were not having any success with fistulas. Three attempts failed, the best of them lasted a week. The scans all showed I had poor vein structure with a lot of collaterals. I decided to stay with the catheter, although this has not been with the approval of my long-suffering nephrologist. After 6½ years, we have this arrangement: He gives me his best advice. I take that on board and determine what I will do in accordance with my needs and lifestyle. He cautions me on what he sees are the pitfalls in my intended path and I go on from there. I consider it to be a good relationship. One of the things we have agreed to disagree on is transplant. He has always urged me to consider it. I have, for a couple of good reasons which I won't detail here, decided against it.

I broached the subject of home HD with him and he was cautious, but supportive. Fresenius Home Therapies in Warwick were willing to train me with the catheter, which involved 10 weeks of rigorous training, 4 to 5 hours a day, 4 days a week, under the hawk-eyed gaze of a highly trained dialysis nurse. An example: I was about to change the Tego connectors. I had scrubbed and laid out the sterile field dressings, connectors, and sterile gloves. I was masked. I scrubbed again and donned the sterile gloves without touching the sterile surfaces. I picked up one of several gauze swabs that were soaking in chlorhexadine/ethanol and wrapped it around one of the ends of the Hickman catheter to sterilise it. As I picked up the second swab, my glasses started to slip down my nose and I automatically used the back of my right glove to move them back up. I went to continue on and was told to stop as I had just brought my sterile glove into contact with a non sterile object. Contamination. Everything had to go into the waste bin and I had to start over. This lesson has stayed with me ever since. That was the standard of training I received in every aspect of home dialysis in those 10 weeks.

In the 3 years since, I have never had to call the helpline to deal with a problem. Two years of home HD followed, with five x 5-hour sessions in the evenings each week for 6 months, followed by nocturnal for 8 hours every alternate night, which I have continued through to the present day. During those 2 years, I continued to rehabilitate myself and my strength slowly recovered to the extent that I felt I could try returning to work. I was frustrated at feeling so well and missed the freedom PD had given me. My partner couldn't understand that I needed that freedom to feel whole again. Her great fear was that I would end up back in hospital. Given the events of the previous years that was a justifiable fear. We agreed it was best we go our separate ways, which meant that I needed to relocate my dialysis machine. I had read of the NxStage machine and in conjunction with my nephrologist, approval in principle was given for a trial. Sadly, the logistics of training and service and cost for a single unit made that impractical. I was disappointed, but not disheartened.

Lying in my bed dialysing a couple of nights later, I began mentally measuring up the full-sized Fresenius 4008B alongside my bed and to formulate a plan to install that and the associated equipment in a bus or a large caravan. Logic told me there was no reason why it would not work…

How Kidney Failure Enhanced My Life.

I started this article with the above headline because of the positive experience overall that the events of the past 7 years have had on my life. While there certainly have been some lows and traumas, I have also experienced many wonderful highs, met many wonderful people, stretched my mind, challenged my abilities and achieved so much. Best of all, I have been able to share my experiences to help others. …Oh, and I'm back in the bush. It's been a wild exciting fulfilling ride—and there's so much more to look forward to. Thank you for reading this.

To be continued!

Comments

  • stephanie

    Dec 28, 10:31 AM

    great article

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  • Lance Daly-Holt

    Dec 27, 9:15 PM

    Great attitude (surely it's everything).
    Good outcomes after overcoming mountainous adversity.
    Inspirational stuff, mate!
    I'm a West Aussie living in Victoria now, on HDx for last 14 years. A bloke I've met from an Aussie Dialysis support group, an ex coach driver, has had a series of specially adapted caravans fitted with his Fresenius machine and traveled where he wished,with his wife prior to a transplant several years ago.

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  • Beth Gordon Gumble

    Dec 27, 7:18 AM

    Henry,
    You are a true testament to how one can live with ESRD. I enjoy reading all your posts and information that you have researched. God Bless you!!

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  • joanne

    Dec 27, 6:15 AM

    Cant wait to read the next one! Incredible.

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  • John Agar

    Dec 26, 5:45 AM

    Henry ... your courage under fire is an example to all ... well played.

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  • John Agar

    Dec 26, 5:45 AM

    Henry ... your courage under fire is an example to all ... well played.

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    • Henry P

      Dec 28, 10:20 PM

      Thanks John. I had a lot of help from some amazing people along the way. What underpins all of this, is my continuing search for answers, - 'a better way,' - along with a refusal to accept limitations without exploring every possible alternative. That search led me to Long Slow Gentle Low UF Nocturnal Dialysis, which I have been practicing for almost three years now. Without that, there is no question that I would not be where I am today.

      I am a living endorsement of of the success of the dialysis regimes that you unceasingly champion. We just need to get those who are not yet up to speed to listen, understand and practice what you have demonstrated.

      Hopefully, there is a groundswell of understanding that is gaining momentum

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  • Steve Wimer

    Dec 24, 3:47 PM

    I've been through trials and tribulations on dialysis myself so I took your story to heart. I've had a cake walk compared to you.

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