On the Cusp

Yesterday the bad news.

The remaining functionality of my single kidney has dropped 3% in the last 4 weeks from 15% to 12%. The sudden drop seems to be a feature of my progressively failing kidney. It has been stable at 15%-16% for the last six months after a drop from 23% with the removal of other kidney.

I haven't felt any change. My appetite, weight, and blood pressure are all good. Every visit to the specialist which showed no change in the blood work encouraged an optimistic view; that the daily cocktail of drugs had halted the decline, that this benignly stable state could go on indefinitely.

Yesterday was a wake up call

For starters, I'm six months older. That might not seem like much but it shortens the window of opportunity in which have a transplant from seven and a half years to six. At my age every month counts. Then again maybe that's my particularly dire circumstances talking. 10% kidney function is the cutoff point (transplant, dialysis or death follows) and I just dropped 3% to 12% in 4 weeks. It may stabilize again but I wouldn't count on it. It is more likely I'll be under the knife sometime soon.

There is sense of urgency now that wasn't there before. My next appointment with the skin specialist to check the treatment I had for Bowen's disease has been brought forward from March to this afternoon. The treated ear has been a problem ever since treatment; it itches, feels hot and can't strand the sun. I can sense it now in a way I never could before and can't for the untreated ear.

This could be because the treatment spurs on the immune system to heal the disease. (one reason why the treatment has to be finished before transplant because transplant requires the suppression of the immune system). Equally it could be that I can feel it because I know I have it. In the same vein, yesterday's startling drop in function convinced me I could feel the pain in my kidney.

So here's fate that's worse than death - contemplating it. Young healthy people never give it a thought.

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."

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.