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.

Use by Date

I/we have been given a date, 19th May 2010 - coincidentally my daughter's birthday, for the extraction and transplantation of my wife's kidney to me. The magnificence of her gesture overwhelms me. Though routine it is not a trivial operation but more than that I will be no condition to support her when she revives.

There is a slight chance that she may not have to go through with it, if a cadaver with a suitable kidney appears between now an then. This puts me in the morally invidious position of hoping someone kills themselves to spare my wife the operational risks and the loss of her kidney.

A cadaver donor's kidney however has an average life span of 15 years whereas a live donor's kidney has a life span of 20 plus. A second moral dilemma occurs to me. perhaps I don't want some to die and save my wife from the knife after all; perhaps I want the extra years.

In 15 years I will be nearly 80. If I feel as I do now with any further deterioration in health I will welcome the extra years. Unfortunately that isn't going to happen. During the final assessment last week with the renal coordinator, nephrologist and surgeon I was told I already show signs of osteoporosis and the immuno-suppressant drugs I will need to take to prevent rejection will exacerbate this condition.

The drugs (transplant medications) in the supplied guide are frightening. There are 5 pages of them in this small booklet. I wont have to take them all but the possible side effects of any appropriate cocktail is the stuff of nightmares here's one example:

1. increased hair growth
   
2. swelling of the gums
3. hypertension
   
4. diabetes
5. impaired renal function ( they have to kidding?)
6. nausea, vomiting, diarrhea ( all the old favourites. )
   
7. Burning sensation in hands and feet
   
8. weakened bones ( osteoporosis )
   
9. Acne ( and I thought my teen years were over )
   

That's just one drug - other possible side effect of other drugs include: nose bleeds, mouth ulcers, anorexia, hair loss (maybe if I take this with the one above I come out with my hair intact ), joint pain, difficulty sleeping, mood swings and of course susceptible to infection - an obvious result of suppressing one's immune system; stopping T-cells from becoming active in the blood and attacking the transplanted kidney. Most of the drugs to be taken twice a day at the same time each day (yet another reason to get rid of daylight saving time - before some transplant recipient dies of an ill-timed dose)

Assuming everything goes according to plan I will be out of action for a month after I come out of Hospital, with daily early-morning visits. then alternate days etc, etc. This is not going to be possible from where I live so we will be forced to rent accommodation close to the hospital. For the first two weeks we will both be laid up and relying on a roster of relatives for home help.

As Australia's former Prime Minister, Malcolm Fraser, once famously said "Life was not meant to be easy."

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.

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.

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.