Thursday, July 16, 2009

A piece of your Ear

Last week I went to the dermatologist with the expectation of finding something out about the recurring skin eruption that result either from the failing kidney or the heart pressure medications (I was going to say drugs but would be politically incorrect; drugs are bad, medication is good)

I have eruptions aplenty: the backs of my lower legs, two spots on my back (precisely placed to be unreachable to scratch), a spot on my belly where the catheter was after the operation to remove the kidney, a warty like spot or two on my left torso, a couple in unmentionable places, the outside of both ankles and a lump on the back of my neck.

None of these concerned the dermatologist, he was much more interested in my ears (eat your heart out Spock), in particular a spot on my right ear. This lead to an instant biopsy under local anesthetic - a piece of my ear removed - leaving me with the fashion statement pictured; very Spock like.

Today the results came back
(by email as requested )

Hi Rob,
Just a brief note to follow-up on your biopsy result.
This has come back showing a condition called Bowen's disease, which will unfortunately need further treatment.
Although this condition is not cancer, these spots have the potential to change into a certain type of skin cancer.
Therefore, we need to treat it to ensure that it does not transform into something nastier.

What? Nastier than a single dysfunctional polycystic kidney?

As I said earlier about all the work up tests for a transplant "...but what if they find something we didn’t know about and probably don’t want to know about." Now they have I think I'll rephrase it. " ...but Murhpy's law says if they go looking they're bound to find something I didn't want to know about."

Tuesday, July 7, 2009

spiralling down

Yesterday 7/7/09 (ignore the posted date. I'm in Australia, we are ahead of the world. It is already 8/7/09 here) Yesterday was another visit to the specialist not much has changed except as expected a decrease in overall kidney function. I'm at 14% (down from 17%, 6 months ago) so approx 6 months left before something has to be done, peritoneal dialysis or a transplant.

At the moment My wife and I are still being worked up (is that work over) for a live donor transplant. In addition to the test already mentioned I have had a course of Hep B shots (2 down 1 to go) a flu shot, some more time on the treadmill this time in combination with an echo cardiogram, live action video of my heart doing its thing before and after and 8 minute increasing brisk walk uphill.

I have two more items left to complete before being considered ready, willing and able for a transplant.

  1. Tomorrow I see a dermatologist. This is apparently because some of the drugs I will have to take post transplant may cause a skin problem ( I was an eczema baby. Whether or not that's relevant, who knows?)
  2. In about 5 months I will have the last of the aforementioned Hep B shots.

Meanwhile my lovely wife will be seeing a separate kidney specialist next week to check out if she can safely donate.

Crunch time is coming. A decision to proceed or not to proceed with the transplant will have to made.

One of my wife's concerns is if we're both out of action for weeks with no money coming, how do we pay the bills. We will be well fed and comfortably housed while in the hospital but there is also a long recover time at home( I know this because I've already had a kidney removed) I doubt the hospital will take care of our mortgage payments while we can't work.

Monday, March 30, 2009

Testing Times


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.


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.


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?

Sunday, March 22, 2009

Wanted Dead or Alive: A kidney donor

According to all I’ve heard a transplant preferably from a close relative & live donor is best option for replacing my ailing kidney function.

My lovely wife who by the merest chance has the same blood group has offered to be the live donor. She and I are being worked up (worked over) to see if a preemptive transplant is feasible. This is preferable to starting on dialysis and transplanting later and we've been told couples have the best outcome.

It does present me with a problem however. What if after all the pain and suffering my body rejects her kidney. How will I feel about the possible shortening of her life for no gain; more importantly how will she feel? What if it only works for a year or two before throwing in the trowel? Will it still seem worth it then; will it affect our marriage?

One always supposes it won't but that's easy to say while the event is only academic.

The test themselves are another threat. Anything wrong with either of us will kill the idea, stone cold dead in the market.

The doctors are of course looking to see if we are healthy enough to undergo the procedures but what if they find something we didn’t know about and probably don’t want to know about. I for instance might not have known about my failing kidney’s if I hadn’t been a regular blood donor. A blood pressure spike sent me to the doctor then to a heart specialist then to a kidney specialist, that spike was the only symptom I had at the time.

As of this post I’m ambivalent about the results of the work up. I hope my wife is healthy enough to donate but I’m not sure I’m prepared to take it from her. A bridge yet to be crossed - we are not there yet .

Organ rejection is another problem, and the chance of it remains as long as you have the ‘not you’ kidney embedded in you. The body’s defence forces (curiously called anti-bodies - perhaps they should be called pro-bodies) will try to exorcise the organ they see as ‘not you’ To counteract this I will have to take immuno-suppressant drugs daily which will give me ‘greater susceptibility to illnesses' as it says in my glossy "take control" brochure.

As I understand this, I’m allowing foreigners to set up an embassy within my borders and giving diplomatic immunity to anyone who comes and goes therein leaving me open to invasion.

The benefit is that life, after a successful operation and recovery period, should resume as normal. I should feel better than I have in a long time and have more energy. This I find difficult to comprehend. I don’t now, nor have I ever, felt as unwell as I’m supposed to with 17% kidney function. Apparently the slowness of the failure ( years in making - cast of one ) allows the body to adapt until it reaches a tipping point, and then suddenly you will feel very ill.

I am lucky to be ahead of the game.

Monday, March 16, 2009

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.

Thursday, March 12, 2009

Life, the Kidney & Everything.

In recent years I kidded myself my life wasn't yet half over, that the best was yet to come, It's harder to do now. It presupposes I would live to 124, and that life would go on pretty much the same. The operation to remove a kidney and the potentially malignant growth attached should have been a wake up call.

I ignored it, I hit the snooze button and went back to sleep.

It is I suppose human nature to forget the pain and the fear. The growth on my kidney, predicted to be 95% cancerous, turned out benign. The relief brought tears to my eyes. I was not going to die. I felt saved, in total ignorance of the salient facts:
  1. I was left with one kidney
  2. It was polycystic.
  3. My post op function was 23% and decreasing.
My specialist had predicted (even before the operation as I remember it) I would need dialysis in 2-5 years. I ignored that too. It wasn't going to happen to me I told myself - but I knew it was bullshit. The ache in my side which led to the discovery and removal of the growth never really left me. Pain from the operational scar disguised it. As I got further from the op the ache receded became so gentle that any other minor pain or mental distraction could hide it. I can now sometimes convince myself it has gone or that it is unrelated to my failing kidney or that it was never there except in my imagination. Such is the power of self delusion.

I have at the same time become sensitive to every nuance of health, wondering if this or that slight change is a sign of the coming end for without doubt the end is coming. At 17% function I have been counseled to look at the future scenarios, transplant, dialysis or death. The last is not negotiable - I haven't finished my novel yet.