Last Post

G'day

It is now two months, one week and two days since Felicity and I went under the knife and things are pretty much back to normal; we work, we play, we eat sleep and ..... A month ago I felt so good, I started thinking about this post, but I was too interested in other projects to bother and time just slipped away.

Felicity still has a little bit of pain, rising after extended sitting but I was back to normal at one month, and better than normal at two.

Better than normal?

Perhaps that needs explaining :- my kidneys gradually failed over a decade and my body gradually adjusted as toxins I couldn't excrete - you guessed it - gradually built up in my blood. I didn't notice any change (and I'm not the only one) By the time of the op I had serious doubts about the necessity of having the transplant at all. Why go through all that pain and put my wife through all that pain when I felt no different than I had yesterday or the day before. The blood work however said I was on the cusp of renal failure.

That all changed on the 19th May - the new kidney cleared the toxic backlog in a matter of hours, not that I noticed immediately but as recovery proceeded the changes became obvious; I had more energy, I began doing long neglected jobs around the house. For me personally the biggest change is in my writing. Pre-transplant I would struggle for hours to write 300 words. Post-transplant I can sit down for a couple of hours and churn out 600. It always astounds me when I do the count.

When you think about it, it stands to reason. One of the biggest arteries goes to the brain. What does a big artery full of toxins do to one's mind? Obviously a helluva lot. Again I stress that the gradual toxin build up led to a gradual decline in mental acuity that went unnoticed: the sudden restoration however, of good clean blood to the old brain box, did not go unnoticed.

Now at two plus months I'm already down to a once a fortnight clinic and I feel better than ever despite that my lovely donor wife sees me as just a growth on her kidney.

This blog will now fall into disuse. Unless/until something goes wrong I will concentrate on writing and my writing blog where I hope to chronicle the process of turning this wannabe into a published author. See you there http://ozwritersblog.blogspot.com/

Rob

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."

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.

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.

Out from Under the Knife♠

It's done. I'm a kidney short of the full person.

I'm writing this sitting up in a big leather chair, in my bookshop, looking out the plate glass window at old gums and cattle pastures, logged onto blogger, typing directly into the create page on a wireless laptop; ah the wonder of modern technology.

The cut is long: from just left of my belly button across, back and up to just under my left armpit. It is now 19 days old, healing nicely but bloody painful whenever I walk for too long, sit up for too long, cough, sneeze, or laugh. Turning in my sleep wakes me every time.

* * *

Friday 13th March 2009
(that this is posted on Friday 13th is entirely ...)

The above though written at the time indicated, was for reasons unknown, never posted. Only now when I again feel the need to blog do I see that a couple years have slipped by unremarked. Again my kidney problem is the return prompt; function is down from 23% just after the op to 17% - a trigger point to start thinking about some sort of replacement therapy. There seems to be some sort of unconscious direction here. why do I only make the effort to blog when my kidney problem threatens to disrupt my lifestyle? I have no idea but have decide to go with the flow and, contrary to intention or expectation, chronicle of my journey through approaching renal failure.