A dialysis and
kidney transplant story from the patient’s point of view.
Topics include dialysis, transplant, acute
glomerulonephritis, chronic glomerulonephritis, infection, rejection, post
transplant depression and post transplant diabetes.
Always
consult your doctor before using any information obtained from the internet
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A DIALYSIS & TRANSPLANT JOURNEY
Welcome to my Dialysis and Transplant journey. I’ve included a considerable amount of information on Dialysis and Transplant with many links to reference sites in the hope it will help people travelling the same path as my wife and I. However, please don’t take my story as a guide of what to expect from Dialysis or Transplant as each persons experiences are different.
INDEX
DIALYSIS AND END STAGE RENAL FAILURE (ESRD)
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Dialysis
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The Call
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Travel
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Recovery
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OKT-3
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Post Transplant Anxiety and Depression
GLOMERULONEPHRITIS
Acute Glomerulonephritis
When I was 16, a small cut from a piece of broken glass in
an aircraft instrument spray-painting booth became infected
with a very nasty MRSA (Golden Staph) infection. Within days, the
infection spread to the extent I was in 
danger of losing my arm. Until that
time, I had hardly ever even caught a cold. After all, I was the typical
Australian teenager living on a diet of sunshine and fun. Kidney was something
occasionally served with steak and Transplant was something Dad did in the garden.
The most powerful antibiotics of the day, quick action by our family doctor, my own good health, and excellent immune system combined to save my arm. My immune system was soon to work against me though, as shortly after returning to work as an apprentice Scientific Instrument Maker I began to feel increasingly nauseous and tired all the time.
Although I didn’t know it, this was the beginning of my renal failure. My wonderful immune system had begun to attack my kidneys. Apparently, my immune system had not “turned off” once the infection was defeated. I wasn’t to find out there was a name for the havoc it was wreaking until seven years later - Acute Glomerulonephritis and there wasn’t anything ‘cute about it.
Chronic Glomerulonephritis
After a few months, the lethargy and nausea disappeared and life returned to normal. Well, as normal as it can be for a hormonally overcharged 16-year-old. My ‘cute Glomerulonephritis had become the slow and insidious Chronic Glomerulonephritis.
Six years later at the age of 22, while visiting a doctor
for a minor bladder infection, a urine sample showed elevated protein levels (Proteinuria). A kidney biopsy was performed that
showed subtle damage to my kidneys and for the first time I heard the word
“Glomerulonephritis.” Interestingly, the word
“Transplant” was never mentioned. Perhaps 
this was because transplantation was almost unheard of in
1977 or maybe no one wanted to scare the living daylights out of me.
Almost a year later, a second kidney biopsy was taken and the progression of the disease plotted. A verdict of 10 years (maximum) before dialysis was pronounced. Tough stuff to take for a now 23-year-old with a very young family. After quizzing everyone I could about slowing the effects of the disease, I began to watch my diet carefully, reducing my intake of protein and, doing everything I could think of to avoid the dreaded dialysis and extend my life. Whatever I did must have helped because I managed to postpone dialysis for a total of 15 years.
During that time, we lived our lives to the fullest. Every major decision had the ‘What if’ factor applied to it i.e. How would we feel about the decision in five years time - What if we had decided against it, what difference would it have made? Not surprisingly, this method of decision-making was responsible for us travelling extensively and moving across the continent to start our own business. We crammed a lifetime into those 15 years and we had a ball.
DIALYSIS AND END STAGE RENAL FAILURE (ESRD)
Dialysis
When the time finally came to dialyse or die at age 37, I chose Peritoneal Dialysis over Haemo Dialysis simply so I could remain in the little seaside town we’d come to call home. To choose Haemo Dialysis would have meant moving house and home (and two teenagers) over 350km south to Brisbane or Toowoomba. Not an enticing thought.
Most people are familiar with Haemo Dialysis, as it’s visually attractive to film and television producers. As a result, it’s well, although inaccurately publicised. All I need to add is that Haemodialysis usually involves three four to five hour treatments per week and has strict fluid intake restrictions. On the other hand, Peritoneal Dialysis is visually boring and therefore not very well known. In my opinion, it provides greater lifestyle flexibility, greater fluid allowance and has a reduced impact on the body due to its steady nature. However, it isn’t suited to everyone and you do have to take many pills.
A semi permanent tube called a Tenckhoff Catheter is installed
in the lower abdomen through which between one and 3 litres of a special fluid
(Dialysate) is introduced to the internal lining of the abdomen (Peritoneum). The Dialysate washes
against the fine blood vessels of the Peritoneum and impurities in the
blood are drawn into the Dialysate by osmosis. The
Dialysate is drained back out through the Tenckhoff Catheter and fresh Dialysate introduced
repeating the process. While the basic principle of Peritoneal Dialysis remains the
same for everyone, it has many different
formats; each tailored to suit individual dialysis needs.
Peritoneal Dialysis worked for me, but due to my large frame, it couldn’t quite provide the ‘clearance’ required. Simply put, it worked, but not well enough. Regardless of dialysis adequacy, many effects of End Stage Renal Disease (ESRD) can make themselves known.
Once again, thanks to film and television producers, most
people are aware of the tiredness and lethargy ESRD brings. What people usually
are not aware of is the extent to which it affects your life. While it is quite
possible to maintain a job with ESRD, it is equally possible that due to the
effects of ESRD or unsympathetic management you will find yourself without
work. At the very least competing in the
Living with ESRD
The most annoying side effects of ESRD are not work related. These can include unbearable itching, Restless Legs Syndrome (A torture truly worthy of the Spanish Inquisition), Peripheral Neuropathy, highly elevated Parathyroid Hormone levels, reduced analytical capacity, halitosis, and depression.
Let’s put this into perspective for those of you who have no idea of what it is like to suffer from ESRD. Picture a depressed, fidgety person with bad breath and brittle bones, who cannot feel their fingers or toes except when they have to scratch (which is most of the time), who always seems to make poor decisions, and then give them a bad attitude. If you’ve been recently diagnosed with renal failure:
~ DON’T PANIC ~
You can enjoy life on Dialysis!
The first step in living with dialysis is to forget the idea
your life is over. It is just a bit different now. Sure, unaccustomed feelings
and strange symptoms will surface from time to time and that’s expected, but
they can be 
controlled. Don’t
let them ruin your enjoyment of life.
The second step is to take charge of your illness. You and your loved ones have to live with it, so it’s your responsibility to learn as much about it as you can. Knowledge is power. Develop a strong working relationship with your doctors if you haven’t done so already. You should learn to ask questions, writing them down and taking them with you if necessary, and never be satisfied with answers until you understand them fully.
The third step can be the most difficult for some, and that’s simply learning to talk. Talking to other patients may not be your idea of fun but other patients really are a gold mine of information. If you cannot talk to anyone at your renal unit, join an internet support group. My personal favourite is Transplant_Friends, which can be joined by sending a blank email to this address or mailing me here . Further information can be found at their website.
After three and a half years of limited success with Peritoneal Dialysis, a Parathyroidectomy to stem bone loss and reduce my serum calcium levels, two bouts of ‘low grade’ Peritonitis and 5 x 3 litre exchanges per day, a Fistula was fitted and I prepared for Haemodialysis.
Having a Fistula fitted is a relatively simple procedure. Its purpose is to provide a large blood vessel or tube close enough to the surface of the skin to insert the two needles needed to allow your blood to be cleaned by a Haemodialysis machine.
TRANSPLANT
The Call
Four weeks after my fistula was fitted and a matter of days
before I was to begin Haemodialysis, at 12:30am on
Caller: Hello Paul, Dr **** here. How are you?
Paul: Umm, err, Fine
Caller: Do you have a cold?
Paul: Umm, No
Caller: Do you have any infections?
Paul: No
Caller: I’d like to offer you a kidney… Will you accept it?
Paul: (Paul makes the sound of a person who had forgotten a previous decision vitally important to their continued survival)
YES, YES, OF COURSE! WHAT DO I DO…? WHERE DO I GO…? WHO DO I SEE?
Caller: Do another exchange and be at the Transplant
Ward of the Princess Alexandra
Hospital in
Paul: Yes, I will thanks!
(Paul makes happy but somewhat panic-stricken sounds)
Caller: Good Luck!
(Click)
Travel
Getting to Brisbane inside the
time limit was no mean feat. It took on average an hour to do a three-litre
exchange and I won’t even mention the pandemonium
surrounding the collection of all the things needed
for the trip. Everything had been carefully prepared when we were first
informed that I was “on the list,” but during the three and a half years since,
it had scattered itself randomly throughout the house. We met the challenge and
managed to leave at
Driving at night usually has its own special concerns, but
in
Pre Transplant Procedure
I remember very little of the well
oiled machine that is pre transplant procedure. So many things happen so
quickly, everything blurs together. It was only after a marathon of tests,
interviews, injections, final dialysis, showers, and pills that I found a few
precious minutes to collect my thoughts. I found those minutes on the operating
table, waiting for the general anaesthetic.
Besides the usual thoughts that accompany unexpected travel, such as “Did I lock the door?” thoughts of a darker nature worked their way into the brilliance of the operating theatre. “What if it doesn’t work?”; “What if I don’t wake up?”; “I didn’t get to say goodbye to anyone.” Panic took a firm hold as I sank into blessed anaesthesia, “I DIDN’T SAY GOODBYE To V i c k i…”
The Operation
The 3.5-hour transplant operation went well and I received a two-antigen match (the best match is six) from a young man who sadly lost his fight for life after a motorcycle accident. I am eternally grateful to both he and his family for having the courage and foresight to save the lives of people like me - people who they had never even met.
Struggling to free myself of the blackness, I saw the unfocused image of my beautiful wife. She leaned forward and gently whispered, “You’re OK” as if she somehow had read my mind. I desperately wanted to tell her so many things, but I couldn’t even muster an “I love you” before sliding back into drug induced sleep. I regained consciousness many hours later to more find more tubes, wires and machines than I thought possible to connect to one person. Thankfully, all my new ‘accessories’ were to be removed over the next few days.
The operation itself was wholly unremarkable. As with most kidney transplants, my new kidney was placed low, but not inside the abdomen and not, as is popularly believed, near or in place of the original kidneys. While the position of a transplanted kidney sounds awkward and uncomfortable, after a while, it’s hardly even noticeable and if it wasn’t for the scar (which fades with time), no one else would know it was there.
Recovery
I was taken for my first ‘walk’ the
first day after surgery. It must have been a strange sight. There was me, two
stands for drips and drain bags, and two nurses to usher the tangled mass up
and 
down the hall. The most rewarding
part of my epic 40-metre marathon was reaching the halfway mark where
outpatients gather to wait for their daily blood test results. These wonderful people instantly recognised the
effort and coordination involved and broke into
spontaneous applause as I turned for home. Standing alone in my triumph, my only regret was a third nurse had not been available to hold the back of my surgical gown closed. J
As mentioned earlier, I was free of ‘accessories’ after a few days. Shortly after the catheter draining my bladder was removed, I felt a strange sensation. I hadn’t produced any urine for 18 months so it took some time before I realised what it was. Urinating for that first time was a wholly satisfying, yet slightly painful experience. To this day, the simple act of urinating and the sense of satisfaction associated with it reminds me just how lucky I am and how courageous, thoughtful, and giving my donor and his family are.
Rejection and Treatment
Seven days after transplant, I suffered a major rejection episode. Rejection is not the horrific monster I imagined it to be. Highly trained nursing staff noted the telltale signs as effortlessly as a sailor reading a change in the breeze. Doctors were notified and a new course charted. I was to receive an anti rejection drug known as OKT-3.
OKT-3
OKT-3 is not what I would call my favourite
drug. Some people don’t notice any ill effects after
the injections, while others experience strong reactions. For about an hour
after each injection I felt as 
though
a moderately large truck had hit me, and then reversed over me again just to
ensure the right effect.
OKT-3 works by heavily suppressing the immune system; however, it is a double-edged sword as infection can take hold easily. I contracted another MRSA infection.
Post Transplant Infection
There have been many memorable moments in my life; not the least being the phone call to advise me a kidney was available. To be told you’ve been scheduled for surgery to remove your brand new and now perfectly functioning graft due to an infection in, of all places, your ear, that has eaten through bone and is within a millimetre of your brain is beyond memorable, it’s soul destroying.
Thinking my life was over and that living really was not worth all the trouble, my drug assisted sour mood deepened and I sank into a terrible depression to await my fate.
Someti