The Countdown

I/we now have an official R.A.H. schedule of appointments leading to my kidney transplant

Donor and Recipient Pre Transplant Appointments
Robert Bleckly (recipient ) and Felicity (Donor )

Date of Transplant: 19th May 2010

I'm pleased to see they got the give 'n' take the right way round - that's a good sign - we've just done the first item - the final cross match.

The rest of the schedule looks like this:

This is the scary part of the journey especially the last two items, I would much rather get my drama vicariously from an altogether different theater - where I'm in the audience and someone else is in the spotlight upon the stage


But since I believe, and believe in, my doctors this is the best choice I can make. I am in fact extremely fortunate to have this option.

1. I have a partner willing to donate.
2. said partner is compatible, and
3. passed their rigorous set of tests (any failure would have put paid to the deal.)
   

If all goes well I will then the proud bearer of my wife's kidney a curious reversal of the usual transaction between husband and wife only I wont be giving birth, I'll be carry her donation for life.

The operation is, as they say, routine but not trivial. Hell, no operation is trivial, accidents happen, complications arise, people die. Not that I'm scared of death. If I don't wake up I'm not going to know about it. The scary bit is everything in between death and the best outcome.

Things like, losing Felicity, rejection leading to dialysis, one or other of us being permanently incapacitated or left in pain.

It will be especially hurtful if Felicity has anything other than a full recovery because she doesn't have to do this. I do and I cant do it without her but what it might do to her really scares me.

My next post will post operation or post mortem.

Testing Times

G'day,

Recently in my pursuit for a kidney transplant I've had lung and heart tests which confirmed what I already knew; I can breathe and my heart beats.

Breathing

The breathing capacity test took a while to get used to. I had to close my mouth around a rubber mouth piece. (much like I imagine scuba divers do - though I only ever seen it in the movies) Then with a rubber peg clipped on my nose to seal that off, I was told to "breathe normally." I have to say, this is not the way I normally breathe.

Once I had that right I was to take a deep and blast it out. Exhaling forcefully is simply not good enough. This process was more strenuous than I imagined especially when I was told to keep going well after I had run out of air.

That was the easy bit. For the strength/pressure I was placed in a clear telephone booth; same mouth piece, same nose peg. This I'm told is to exclude any changes in external pressure on my chest.

The test is sufficiently sensitive that if a door opens in the outside room even though I'm the booth, I have to start again. OK I'm all set. I have instructions coming through a tiny/tinny speaker in the upper corner.

"Breathe Normally." I do - then the air is shut off.
"Keep Breathing." Gasp! my mouth comes off the mouthpiece.
"No, no, you must not let any air in, try again."

Pardon? What part of breathing don't they understand? Obviously the part that talks about taking in air.

Heart stress

The heart stress test was almost pleasant by comparison. Mostly it involves lying flat on your back in a darkened room for fifteen minutes while the machine does all the work. There was of course a brisk walk on the treadmill while wired but I'm getting ahead of my story. This took a whole day and then some.

24 hours before I had to stop taking one of my hypertensive drugs (those meant to keep my blood pressure down to assist my kidney) and stop with any coffee, tea or chocolate. What no coffee? I'm F.U. Iced Coffee addict, I require one a day or I'll die. I was scheduled for two test 8:30 am before the treadmill (heart unstressed) and 1:30pm post workout. That was the plan. When does anything go to plan?

The first part involves getting injected with radioactive tracer. They leave the access point in so they do it again when your on the treadmill. While I was waiting I was given a glass of milk - I'm not sure what this does but its part of the procedure. Another woman in the waiting had the same thing a few minutes before me. When mine came she followed it and we exchanged a knowing glance - someone else in the same boat. Salute'.

In due course I did my fifteen minutes on the table with the machine incrementally creeping around me, my arms uncomfortably stretched above my head out of the way.

"Sorry, we have to do it again, we missed the bottom of your lungs. Have you had a chest X-ray?"

"Er- no."

"We'll get that done in between."

While they set that up I slip out and tell the wife not to wait. The plans we had for the time between appointments is shot. The x-rays also required two attempts, I must have long lungs they can't seem to fit them in a single picture.

Back on the slab I use the time productively dreaming up where next to go in my novel. The fifteen minutes is over too soon for my mind but not for my stretched arms; they ache.

Arriving at treadmill I spot the woman who preceded me. She is sitting in a wheelchair. "You don't actually need it" she says as I pass and the nurses chuckle. This is not a reassuring start.

Now I get shaved, little circular patches on my chest and abdomen ready for the electrode patches. One part of the monitor is belted around my waist and multiple leads attached. I'm wired and ready to run. The music starts and I begin to walk, big strides uphill (the bed of the ever rotating treadmill is tilted to about 15 degrees) after a couple of minutes the pace picks up, and again a couple of minutes after that. The target is to last seven minutes without collapsing in a heap or getting pulled backwards off the infernal machine.

"Tell us when you think you can only last another minute"

What? How the hell can I know how long I can go before I get there. I nod and say nothing, anything else is waste of breath, breath I now need.

There is a reason for the question. The doctor is standing alongside with the syringe plugged into the access ready to inject me with the tracer one minute before my heart reaches maximum stress. Fortunately I'm doing alright, it's my kidneys that are stuffed my hearts OK.

I reach the six minute mark and they inject. 60 seconds to go. I'm breathing heavy, my heart is pounding, my legs are surprisingly fine, the monitor is showing heaps of red lines (which is apparently good) 10 seconds. Im struggling but having come this far I ain't gonna quit.

The machine slows, I am helped to wobble over to the bed and sit awhile. Unplugged and re-dressed I sit with relief in the wheelchair. She was right I don't need it but ... I'm wheeled back to the scanning bed. This time it is difficult to stay focused on plotting, I doze instead.

Ultrasound

There is yet another test a few days later, an ultrasound of my heart. Lying on my side in the darkened room watching the monitor I get a sense of what it must be like for a pregnant woman looking at her unborn child. Within the trapezoidal section of bluish light is a pulsing hole, part of my beating heart. Measurements are being taken of the size of the hole as it opens and closes. The beat goes on.

All this to see if I have the stamina to be the recipient of donor kidney

What if I don't?

Peri - what dialysis?

Hands up who knows what peritoneal dialysis is? Probably only those who have had to confront renal failure have any idea. I'd never heard of it a couple of weeks ago when my wife and I went for dialysis counseling. What I did know was that Dialysis, in saving my life, was going to ruin it.

After the kidney removal op we did a last chance three month world tour on the assumption that overseas travel would out when I went on dialysis (in 2 - 5 years.) Dialysis would tie me to a hospital 3 days a week 4 hours at a time. Its actually worse than that. There is travel time to and from, waiting, setting up and recovery time. In reality I will lose three whole days a week.

This is Haemodialysis. For this to work a shunt is created in my arm by joining an artery to a vein; back pressure swells it so they they can get the twin needles in. (inlet & outlet). I started to faint just looking at the pictures. How the hell am I going to cope with that. Pass me another jelly-bean.

Then we were shown the graph of what will happen in my blood, the build up of waste and pressure which may make me feel lousy until just before dialysis. This up down cycle is not really good for me and it's worse on weekends because they only dialyse on Mon, Wed and Fri. I may well feel like shit on Monday and it will probably take longer. After a while my kidney will dry up from lack of use, I will stop peeing and have to go on a restricted fluid intake.

This was the first option presented to me. It was also the only dialysis I was aware of and to say I was not impressed is putting it succinctly. It seems to me they told about the worst option first so I would feel relieved when I heard about Peritoneal Dialysis. PD for short.

Trust me, I was incredibly relieved - no needles - do it at home - 15- 20 minutes - 4 times a day.

That last gave me pause; I knew there would be a catch. Then again three meals and supper is four lots of 15 minutes in a day. That dost not sound so bad dost it? Very few diet and fluid restrictions, less ups and downs and its portable so we can still travel. Yippee! I cant wait --- uh? Hang about, this is still serious. I'm still dying here and being kept alive by this artificial procedure.

And of course nothing is ever quite that simple. I have to be fitted with a permanent catheter ( I just knew they'd find a way to let the surgeons in on this) and I'm going to be two kilos heavier from the 2 litres of fluid I have to carry around in my abdomen, to be precise in my peritoneal cavity - the bag that holds all my organs together. I have to have a storehouse for the boxes of 2 litre bags, a work area for the exchange and I have to bloody careful.

When they told me there was a risk of infection I assumed they were talking about the exit site of the drain pipe hanging out my underdaks - where the tube meets the skin but no, the danger here is internal infection; something getting back down the tube into my PC (that's peritoneal cavity not personal computer). Apparently if I so much as drop my catheter on any surface when its uncapped I have to report it immediately and I will be given antibiotics - it's that bad.

Still it may well be worth it because once I have mastered this procedure I will be given a machine that does the whole lot overnight; plug in - go to sleep - wake up - unplug - get on with life - now we're talking the same language. Oh! and they supply the bags anywhere in the world anytime free of charge.

There is of course another even better option - Transplant
I'm looking into it.

Under the Knife

In a couple of days (Thursday 1st of February) I go 'under the knife', a title I borrowed from an HG Wells story which begins "What if I die under it? ..." This unwelcome thought has crossed my mind too.

Death is such a waste of life.

My cutting is to remove a kidney that according to a bevy of specialist has a not-so-benign growth attached to it. They call it a tumour, a Renal Cell Carcinoma, RCC for sort; CANCER. It is oft said that Cancer is just a word, not a sentence; this I thought a fine pun until they applied the word to me.

I been told that RCC is not amenable to chemo or radiation therapies, the only treatment seems to be removal of the kidney before it metastasises (spreads beyond the kidney). Removal is supposed to be a complete and permanent cure. Notice how cleverly I couched the above - 'I've been told ...' , '...seems to be...', '...supposed to be..' Nothing is certain.

The real problem is this: no one can tell me at what point it metastasises. The last test I had, showed it hadn't. Left alone, some time in the future it probably will. So the sooner it comes out the better, however, it's possible it could metastasise in the period between the last test and when I go under the knife. What then?

Well that's just bad luck, or god's will, which ever you prefer. Not that I'm scared of the actual dying only of leaving an unfinished life.