Letter to Employer / Staff - (Late July)

Another overwhelming factor has been the support from my MD, the directors and management. Not only is it a huge burden lifted, to have their support, but a source of encouragement. Below is an email I sent senior management:

"Esteemed Colleagues!By now, you will all have been informed of my recent health developments and I wish this quick note to be a closing of this informative stage, whereby you are all brought up to speed news-wise. I shall thereafter endeavour to keep you up do date where relevant for work purposes only. Having said that, I am not shy and personal on the matter and will happily discuss progress with anyone interested.

This week I am being treated as if the problem were a mere temporary kidney rejection, but this is really just to eliminate the possibility that it may be a rejection...the diagnosis remains in all probability, full renal failure.The greatest impact to date has been the emotional one, but as each day passes, I accept that I cannot change anything and must make a choice on attitude. I am blessed, much to the detriment of my wife's sanity, with a natural positiveness in life in general and while I am certainly depressed about this, and suffering the physical ills and symptoms daily, I will take this on chin up! It has, and will continue to be a trying time for Lee-Anne and I, and my biggest worry and concern was how the news would be received by my 'employer of only two months'!

This biggest worry has subsequently become my biggest source of encouragement and we are now overwhelmed by the care and support received, firstly by Andrew and his directors, as well as the rest of the bunch. Thank you all very much, from us both.This whole matter has a double-edged sword cliche attached, in that I have been down this road before, I know what it entails, I did it once and I can do it again. The flip side...I know what it entails! But, with the support of friends, family and colleagues alike, I am better enamoured to tackle this situation as best I can so that it impacts as little on my life as possible, both on the home and work fronts. As I mentioned to Andrew, I demand no sympathy nor do I expect special favours, I ask only for your understanding and support. In return, my goals are ensuring that down the line I am perceived as a valued asset to this organisation in spite of the Achilles heel and hopefully, will become an inspiration to others.

A Quickie

Hi all, from the nethers of morphine-land! Thanks to my wifey, Lee, for getting this site up and running! I am still in the ward now but look forward to adding and editing it with time.
Thanks all, for all you have done to help, an all.
Chat later,
T.

News as at 5 August 2009

Hi All

Thought it would be a good time for a quick update of health developments. As you may know, I have been into the hospital the last three mornings to sit on a drip for an hour. It was basically a 'Red Bull' of steroids treatment and was more of an elimination process than a real hope of improving anything. They just wanted to rule out a simple rejection as the cause of these current problems, and this treatment would then have reversed the recent high (bad) numbers. However, as expected, there has been no significant improvement and they can now say with certainty that I am in end-stage renal failure as a result of IGA re-occurrence.

I now have an appointment with a surgeon on Friday, which will I think, will just be a consult on preparation for CAPD dialysis catheter insertion. I will most likely be admitted to hospital on Monday, knocked out for op on Tuesday, where they fit the abdominal catheter, then hopefully out on Wednesday. They then leave me alone, thankfully and hopefully for a week or so for things to settle and see no probs. Then they will initiate the CAPD training process...not too sure what the regime or time demand is there but as CAPD is done by the patient, we need to be fully trained on the ins and outs. While neither heamo-dialysis nor CAPD are very welcome intrusions in ones life, we are led to belive that CAPD is definately the lesser of the two evils in terms of health, diet, flexibility, independence, medicines and general well being. It does come with daily baggage though and I will need to do four fluid changes a day.

Lee will most likely come to the surgeons meet on Friday, as we intend to see the transplant coordinator as well. We want to be pro-active about this and not sit and wait for the process to run its lethargic course. We will ask her all our transplant questions, whats new, whats changed etc. and what should we be doing in preparation. We are also working on a blog site where I will update my progress, furnish information about renal issues and keep everyone updated.

I must add at this point, which may come as a surprise to some of you, but I have found a new and overwhelming faith in God, actually before all this started. I never had this relationship the first time around, nor did I have the support and prayers of a church congregation, nor those of a home-cell group. I have all that this time around and I tell you it counts for a lot - not in a funny way - just by feeling supported and cared for. Even though I still have to weather the storm ahead, one cannot deny the possible divine intervention of the position I have been put in to better handle it.

Anyway, that's the update for now. Will keep you in touch as things progress.
Love,T.

Peritoneal Dialysis: How does CAPD work?

Peritoneal dialysis uses the peritoneum, a natural membrane, that lines the cavity of the abdomen. The membrane has tiny holes and acts as a filter. Waste products and fluid flows through this membrane allowing the wastes to “clear’ from the blood. A catheter is inserted into the abdomen during an operation. About 15cm of this tube remains outside the abdomen providing a means for attaching the bags of dialysis fluid during a ‘bag exchange’.

A CAPD exchange consists of 3 stages:

• The peritoneal cavity is filled with approx. 2 litres of dialysis fluid (glucose solution)


• The dialysis fluid is left inside the peritoneal cavity for approx 4-6 hours where water and toxins from the bloodstream pass through the membrane into the dialysis fluid


• The ‘used’ fluid, containing the water and toxins that the kidneys would normally have passed into the urine, is drained out of the body and discarded.

The full ‘bag exchange’ process takes approx. 40 mins and has to be performed 4 times a day.

747899 - My Short Story

My sister only smiled during my third rendition of “Old McDonald”. That it took so long for her to react, was the same reason I was even singing. Nerves. I remember thinking of a Vietnam War movie that starts with a soldier lying in bed sweating, staring at a wobbly ceiling fan above, which becomes helicopter rotors in his mind. Well I wasn’t in Vietnam; there were no ceiling fans and no breasty nurse heroines for me to fall in love with. Nonetheless, I lay flat on my back on a gurney…or perhaps, a journey…and the ceiling was moving. I guess the pre-med did help with the nerves but I know that my bravado was more a façade to convince my sister that there was nothing to worry about, than bravado itself. She may have agreed - if she were not at the time also on a gurney alongside mine, and soon to part with a kidney.

We reached a point in the corridor where we had to part. The moment of truth and the final move against fate, despair and fear on the checker-board of life’s trials. Seeing tears in Jo’s eyes nearly broke my resolve and I could only resort to humour in the hope of avoiding either one of us from losing it.
“Hope we aren’t in the YOU magazine tomorrow.” Another attempt at humour. I still hope I said something like ‘I love you Sis’, but I can’t remember. The ceiling dissolved into one big bunch of lights as I was wheeled through another set of double doors.
“Wow…am I dead?”
“No Terence, you’re fine,” smiled a theatre nurse from the outer periphery of light.

I remember my first day at Addington State Hospital in Durban. It was a cold drizzly autumn morning and I was lost and alone in the crowds. I stood in a queue for an hour before I got to the front.
“No luvvy, new patients to counter six. Next!”
That set the scene for the next couple of years. Counter Six stamped Terence Clarke out of existence and replaced him with file 747899.
“You must go to the Poly-clinic tomorrow at 6.00am.”
“Sorry...where?”
“Poly-clinic…around the corner. Next!”

My second day was worse. Arriving at the hospital on the prescribed hour, it took another thirty-five minutes to discover that the Polyclinic was indeed ‘around the corner’. In fact it was a separate building altogether, around the corner and down the road. Inevitably, this delay put me near the back of an already bloated and distorted queue. We sat en masse, on the grass, the concrete corridors, the windowsills and dustbins, waiting. Always waiting. The morning passed. The mass of coughing, snorting and sniffing bodies around me murmured and stirred but never seemed to thin out. By mid-afternoon I was indoors, and could see the final zigzagged home ‘straight’.

In turn, the person sitting on the end of the front bench was called to one of the curtained cubicles. 747899 got there at about 4.00pm. A nurse shoved a thermometer down my throat and wrapped a blood pressure bandage around my arm. I almost turned instinctively to receive my branding on my rump. She asked some questions, made some notes and told me to join the queue outside to see ‘Dokota’.
The lucky ones leave at this point. If you need anything more than a Panado, you join the queue to see ‘Dokota’.

At 6.00pm ‘Dokota’ deduced that I had bigger problems than just a headache. He was the guy who determined whether you had a quick-fix ailment, or whether you took your chronic illness back to the main hospital. A sort of thinning and elimination process, much like any cattle ranch would conduct prior to the next auctions. His analysis condemned me to further diagnosis, assessments and medical tests. File number 747899 now had an appointment with the Medical Registrar of the main hospital, at 6.00am the following day.

Day three and I felt like a veteran already. I breezed through the security frisking at the door, found the correct registration line straight away and within three hours was looking for the Medical Registrar’s office. It was closed when I found it, temporarily moved due to a viral contamination. I found the new rooms and joined the queue. I had reached a level where intern doctors saw to us, and mine was a rather pleasant fellow with not so pleasant news.
“Indications do seem to point to kidney problems. Your creatinine is exceptionally high, your blood pressure is also…..” His words drifted into the void that reality opens in the mind so as to deny the information coming in. “….your next appointment is with the Renal Clinic.”

Doctor Madala was a tall woman. She was pleasant, friendly and sympathetic. She even called me ‘Terence’. But, she was also a professional; she had a job to do and news to share. This combination of professionalism and sympathy allowed her to break it to me gently.
“You have chronic renal failure. Your kidneys are barely functioning. It is not curable. A transplant buys you a chance at a second chance…dialysis keeps you alive until then.”
What to say?
“How long do I have before they go completely?”
“A week, maybe six months. We just monitor your bloods and see.”

Dialysis started in August 1999. Every Wednesday and Saturday from 6.00am to 10.00am spent on the machine. Twice a week, four hours at a time, for nine months, I watched my blood filtering through the life-support filters. I can write chapters on dialysis: diets, nausea, sub-clavian catheters, medication, monotony, family, Bold and the Beautiful re-runs, weakness… I never did complain, and I won’t. There were patients who had been on dialysis for years before me, and are still there now.

I was lucky. Tests were done on my family to assess donor potential. Live Related Donors, (L.R.D’s), offer the best compatibilities and thus improve chances of long-term success. Both parents were medically discounted by the strict conditions required, but my sister Leanne was given the green light. This light turned red when she ended up receiving treatment for a cancerous sarcoma that sprang up the same week! With that she opened the door for her twin, my other sister, Joanne. We got the “GO” for April 2000.

I have been prodded and probed in every fashion, manner and orifice. Some I didn’t even know I had. But this op, in theatre, was a first for me and add to this the fact that it was a government provincial hospital…I was scared. I raised myself to my elbows to look around. A smaller theatre than in the movies but with the standard array of lights and gadgets behind my head. There must have been about six nurses scurrying about, green cloaks, green booties and latex gloves, flicking this and tugging that but ignoring me.
“Hi, I’m Terence.” Probably my pre-med talking again but I let it speak.
“Yes we know, it’s on your wrist-band Terence.”

Right. Forget the names then. The important stuff first.
“So you also know then that I am here for a kidney transplant, not a hysterectomy or say…an amputation of sorts?” It was a serious question disguised as a joke. I mean how often do we read of these horror stories in reputable magazines?
A giggled reply came from the left, ”Don’t worry Terence, we have all the cards, you’ll be fine.”
“Ah, so then you will also know that in this case I am the recipient. My sister Jo is the donor and she’s the girl next door.”
Just a smile and a nod from one of the nurses that I could see. Still not convinced, I sat upright, a non-verbal demand for attention.
“Right! All of you stop what you are doing and repeat after me. Kidnee… traaansplaaant… recipieeent. Get it?”

With that I collapsed onto my back once more and continued to mumble lines from ‘Old McDonald’. By this time, they were already sawing off Jo’s rib to get to the kidney she was parting with. They always start with the donor first as there is more to taking a kidney out than putting one in, apparently. Jo was sliced from lower belly to middle-back, had a lower rib removed and accidentally had a lung punctured for good measure. I was to receive a simple 15cm lateral cut from mid-groin to just short of the hip-bone, where they drop the kidney in, redo the plumbing, and stitch it up. All in a days work for some!

I was still in my dreamy song mode when a pair of hairy sleeveless arms appeared above my head twisting their hands into a pair of surgical gloves.
“Hello Terence. I am Professor Naidoo..Dlamini..Smith..Fandango..Sanchez,” I never got the name really, “how are you doing?”
“Oh hi Doc, I’m just great thanks. Short back and sides please.”
“Ah nice and chirpy then, dat’s good,” he paused briefly to place a mask over my face, “just the anaesthetic, no worry, good.”
“You know that I am here for a renal transplant hey Doc? The recipient of a kidney from my sister who…”
Anaesthetic worked as fast then as it does now.

My wife’s contractions started as Jo and I lay anaesthetised in the Durban theatre. We put this ‘immaculate timing’ down to stress. My second son was born in Richards Bay in the early hours of the 12th as I lay in a morphine induced sleep. As unpleasant as it was for us to be apart at a time like this, the irony of two new beginnings was not lost on us, and we had so much to look forward to. Conversely, Jo who now lay painfully across the ward from me, could only ponder upon the year it would take before she was allowed to start her family. This sacrifice had indeed been a major upset for her but was something she bravely shelved for me.

A year after the operation, my wife and I met Jo and Daniel for dinner. She had announced her pregnancy some weeks before so it was a double celebration. As a thank-you to them both, for their emotional and physical scars, I thought it fitting that my sons ‘write’ a verse to their unborn cousin. Accompanied by a photo of the boys, we framed the following ode:

Dear Little Cousin

You may be a little bundle now,
A stranger to the land.
But, one day in years to come
You will read this and understand.

Your Mom and Dad gave up so much
To help my Dad get through,
They had to wait a little longer
Before they could have you.

Your Mom and Dad gave up so much
Never faltered, muttered nor moaned.
Even when, to help my Dad
They had their hopes and dreams postponed.

You may be a little bundle now
Wondering what could have been so bad,
Well memories fade and scars may heal
But in time, you will know the gift my family had.

To us your Mom and Dad are special too…
‘cause they gave us back our Dad.


End.

Kidney failure

The term 'kidney failure' means that the kidneys are becoming less able than normal to perform their usual functions.

When kidney disease starts, it is likely to get worse in time however it can take years or decades

When kidney failure is so advanced that you would die without treatment (either dialysis or transplant), it is called Established REnal Failure (ERF)

What does a Kidney do?

The Kidneys play an important role in your health. Most people are born with 2 Kidneys - one on each side of the backbone just below the ribcage. Shaped like a kidney bean, each kidney is about the size of a small fist (12cm) and weighs about 150 grams.

Normal Healthy Kidneys

• Clean waste products form your blood and remove extra fluid to form urine
• Keep minerals (sodium, calcium, potassium and phosphorus) in balance
• Help control blood pressure
• Help to make red blood cells
• Produce vitamin D to keep bones healthy and strong