Old Blue Eyes are Back

Gday

One year on
12 whole months
365 days
 

A year ago I was under the knife, or more like several knives (perhaps better described as scalpels)  having my wife's kidney inserted into my lower abdomen.

My internals now look something like the diagram here. (The left one's gone, the right  one's done and wife's is filtering on. - I should set that to music )  the ugly brown thing hanging up the top is what left of my native kidneys - not enough for a decent pie.

 

So what's life like now? 
It really couldn't be  better. 

I still have to take my pills at the same time morning and night, twelve hours apart, and will do for the rest of my life however short or long. But to put that in perspective it's no different than three meals a days and the pills are easier to prepare, consume and clean up after.

The changes are many  mostly to do with excreting bodily fluids...
What did you expect? The kidney seems to run the body's waste disposal system. 

But let me start with something else. The most immediate benefit was 

I get things done.

Writing for example, my second love, has taken off like a rocket. In September 2010, 4 months post transplant, I set myself a target to write "Arch" the final volume of my speculative fiction trilogy in one year. 

The first two volumes took 12 years, the writing slowing down as the kidney got weaker. I'm on track to finish "Arch" in July this year, a month earlier than expected, (I should point out each volume is 180,000 words - not small )  One year on.  In the 139 days of 2011,  I have written over 75,000 words,  11 of those days I wrote over a 1000,  one of those over 1300,  previously that would have taken me a week. (for more see my  writer's blog)

  

A couple of months before the transplant (and because of it) we shifted house. The house was good but the garden  was bare. 

One year on as well the prolific writing the garden has been transformed from above to below

 

At the same time I occasionally spend a few hours making pizza's in the Oakbank Pizza Bar we part own, anywhere between 4 and 6 hours a night rolling bases making and baking pizza, fish & chips, hamburgers,  serving customers and cleaning up afterwards

Then there's our web business  Koala Ridge  In this same 12 months, along with the Writing, the gardening and the Pizza Bar,  I built the Stirling District Hospital website

The thing is,  the last time I was this active was in the 80's when I was 40,  working studying and moonlighting. The decline was gradual  With the passage of time I did less and I accepted this as the natural process of aging. I met and married Felicity in the late 90's and she got the impression I was one of those blokes who talked about what I was going to do and never did.
   

One year on  all has changed.

 

Only in hindsight did we realise the affect my diminished renal function was having on my life.

 

Physically now, let me start with a daily ritual caused by consuming the three meals. (If you have a sensitive nose skip this bit - but it's an important and unexpected plus for me) You eat,  you shit.  One year on  the act itself is much improved. To put it politely, it's as quick and easy as taking the pills and the paperwork now takes one sheet not half the bloody roll.

And while I'm on excremental topics the required consumption of 2L of water over an above any other fluid intake like tea, coffee, milk, cola, beer and wine would ensure I couldn't sit through a whole movie without a break.  One year on that doesn't happen and sleep wise  I can get through the night with only one or two nocturnal visits to the en-suite.  (To be fair this is probably a function of time rather than the kidney - To help the ailing kidney  I was doing 2L  and multi-toilet runs before the transplant - its just taken this long to expand bladder capacity).

One change I could do without is sweat. Now when I work up a sweat  it really does run down my face. This never happened BT, (before transplant) Back then deodorant dried up in cabinet unused, unneeded, unloved.

One year on I now have enough handkerchiefs to last the rest of my life. I stocked up because my nose always ran. I would pocket two clean ones every morning and put fourteen to twenty in the weekly wash. One year on and I still pocket  two every morning (out of habit), the same two often unused are changed when I change my pants. Fourteen plus in the weekly wash is for socks.

Lastly my eyes are  blue  again, they were when I was young but  over the years they slowly faded to grey which I again put down to old age rather than a failing kidney - my lovely donor wife tells me I'm wrong, my

old  blue  eyes are back

Ooroo

re-hospitalisation is not a dirty word

g'day

Three months post transplant (19-8-10) is a significant milestone as these things go. All being well the specialist team begin reducing the high level of anti-rejection drugs. In my case, all was well, I began to feel safe, to relax and enjoy my renewed lease on life. A couple of days later I began to feel unwell, nothing extraordinary; an ache in the knees, an elevated temperature; it felt like the  flu. I duly notified the renal coordinator.

   "What do I do if I get the flu?"  

   "Take a couple of Panadol and monitor your temperature,
    if symptoms persist see your local doctor.

Sound familiar. The symptoms persisted on and off for a week with varying degrees of unwellness (depending on when I last took the Panadol)  Then one morning my temperature reached that magic number considered a fever in transplant patients 37.5C.

Tabasco on the right

Seeing my "local doctor" was interesting -  My normal local GP who'd been with me from the start of the kidney problem was miles away. I had recently moved and  intended to stay a while in the new place. So a new local GP was brought up to speed and on advice contacted an FMC renal specialist. The usual bloods & urine were taken and then something that was new to me; a blood culture. Blood is extracted directly into a small bottle of culture medium which when shaken looks like a bottle of Tabasco sauce.


The results I got the following day at clinic. There were signs I might have a couple of infections, maybe Staph and probably CytoMegaloVirus- CMV

Cytomegalovirus,  a common viral infection. In healthy people, it causes a mild flu-like illness (touché) that passes harmlessly within a few days. In certain high risk groups like ......da da
organ transplant patients, it can be serious.

More tests. If it was important my clinic specialist would let me know. I went home and forgot all about it until I got the call about 5pm, "Please report to FMC (Flinders Medical Center) emergency for admission, we need to put you on intravenous antibiotics."

Oh shit -  I guess it's important. 

FMC emergency waiting room 7pm after a hastily packing an overnight bag. We sat there for the next 4 hours hours before the long suffering Felicity had to go ( a long drive home). I got seen to about a half an hour later to get a Jelco put in and then back to the waiting room along with rows of patience in beds waiting for rooms. The only excitement was hourly measurements of blood pressure and temperature, eventually at about 2AM a bed was found in the EECU ( Extended Emergency Care Unit ) and the antibiotic drip connected.  All this played havoc with my sense of post transplant life;  3 months and I'm already back in hospital on a drip.

which one is the drip

Things were not as dread as they seemed however. The staph result for which the antibiotic drip was a precaution turned out to be a false positive. The CMV, while potentially dangerous, if caught early is easily treated with oral antivirals.

Cut to the chase: I was transferred to the renal ward and enjoyed a couple day of  government hospitality. Enjoy in this sense -  I wasn't half as sick as my fellow inmates, prompt attention by my doctors caught it in time.

I read some, wrote some, talked some, had three, two coarse (well not that course) meals a day and slept soundly. The Jelco stayed in until the last moment but was never used again and when they tried to flush it before removal it had healed/sealed over. I came home  a whole lot better with a varied pill regimen, less of the anti-rejection and  a course of antiviral.

I would guess this will not be the last time I will have to be re-hospitalised. It aint fun but it aint that bad; certainly better than dead. So unless I do a Howard Hughes and lock myself away from life, picking up the odd infection or two is inevitable as is a couple of days back on a renal ward.

Now I'm back to as normal as I'm ever gonna get - until the next time.

Ooroo

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

Nothing surer than Change

g'day

The solutions were a mixed bag some relief but not really enough especially overnight. By the time the need wakes me it's urgent and painful, not time to be playing with aesthetic injections, so it's back to walking the dog.

Despite this, we are both generally better and went for a walk down the mall for lunch. It was both easier and faster. (Aside: An additional reason for our expensive choice was to test if liked city living - i.e. sell up in the outer burbs and move to the city) My son Jason who works in the city joined us for coffee in our favourite bookshop in his lunch hour, a side benefit of city living.

As he was leaving I got a call from the renal co-ordinator at Flinders Medical Centre FMC (my local hospital) saying the RAH (my transplant hospital) was going to release me and an appointment had been made for next Thursday, which I took to be Thursday next week (today being Tuesday)

I was wrong. When I rang for my results (creatinine 98) I was told don't come tomorrow. It seems the doctors are so satisfied with my progress after the biopsy they're transferring me back to FMC for further clinics as of NOW. Next Thursday actually meant this week - two days time. I was original told (as my blog testifies) daily clinics for three weeks to a month) - Tomorrow is exactly two weeks since the operation and neither are supposed to drive until then so this comes as a shock.

Gloriously the FMC clinic only runs twice a week, not daily, so it's all good news; not to mention the fortune we will save ($200 / day ) except we have to give 24 hours to our hosts so I bargained with RAH for one more clinic tomorrow, then FMC Thursday.

Here endeth stage one. I now enter the brave new world of the immune-suppressed transplantee - for life - which was of course the object of the exercise.

'Ooroo

another day - another pain

Today (may 29)
10 days post op - creatinine 96 - kindney function 60%

The weekend clinic is back in the ward (returning to the scene of the crime?) Those further along (about a month post op) have the weekend off.

My bowel an bladder still conspire to give me pain, I have to sit to pee just in case and am rarely disapointed. The whole operation always takes three attempts with a much pacing around the appartment before I get sufficient flow to feedback to the brain that its done.
I've been told it is the stint irritation despite the site of the pain being in the head of the penis

This is not he blog I thought I would writing but I can't concentrate on how it feels emotionally or intelectually while I'm foccsed on the phyical pain. Compared to this transplant the nephretomy was child's play. Felicity would disgaee; in her opinion the cochlear implant was a like a bee sting compared to the nephrectomy which was like be bitten in half by a great white. It's all relative.

forward to the past

I showered this morning standing up, a chair is provided but standing was easier. It felt really good, the best part of the day, just standing under running warm water. Getting in and out carrying a plethora of tubes is less than ideal. Was able to sit up most of the day and able to get out bed to visit Felicity a the other end of the corridor 4 times with a couple of return visits. The first visit had us both crying with obvious relief that we had survived. The risk of not making it are three in a thousand - wonder how that compares with dying in car accident.

creatinine 115

23^rd sun

Bad night, unable to sleep, Could not get comfortable in any position on crinkled sheets, can only lie on my right side a few minutes at a time, then on my back, then left then back again, the constant rolling is more comfortable than lying still. My backside is red from sitting up all day, my elbows are sore and abraded by the rough blankets of which I have to have two to combat the freezing air conditioning I give up in tears of a different sort, lie on my back and begin chanting a mantra (the distraction of watching dvd's worked in the daytime lets see if mediation works at night) om mani padme hum repeated over and over again aloud has a calming effect and I do indeed occasionally drift off. I wouldn't call it sleep but its better than panic and tears.

creatinine 104, the doctors are pleased everthing is going according to plan, but they were not here last night. Able to visit Felicity several times carrying my stuff wearing a hospital gown flapping open at the back. Fuck dignity I'm alive. That afternoon she was turfed out her room by nurse 'ratchet ' to await release in my room. Fine for the hospital, they need the bed, pity the patient has to sit in freezing pain. I'll leave my overall thoughts of the hospital stay to a summary blog when we get home - probably still two weeks away.

Oh! the pain.

today (May 27) creatinine 94

Not to mention the embarrassment of yesterday when I coughed in my rompers.

One of the side effects of all abdominal surgery is constipation and something doctors look to see restarted before they let you out. Perhaps my dysfunctional kidney kept my stools soft, for me shitting was quick & easy. Now although I go through he motions daily, the post op experience is hard and very painful.

I was grateful when the blockage finally seemed to ease but later I had to go again and was hoping it would be all back to normal but alas it was now loose. Less than an hour later a desperate need arose but the one bathroom was occupied. An uncontrollable explosion occur ed. Diarrhea is a worry for a transplant patient often leading to dehydration and kidney damage.

The renal clinic reassured me this was probably just backed up behind the blockage - drink plenty of water and monitor if it persist come to emergency. I'm glad now its only 2 blocks away.

Then last night every hour I had to get up pee, but despite the water intake, couldn't. The pain in the tip that tells me I'm desperate is a lie, I don't need to go, I cant go. At best I get a burning trickle. Something to do with the extracted catheter or the transplant where it joins into my urinary system or irritation from the stint between kidney and bladder has yet to heal.

So now both excremental orifices are giving me a hard time -more so than the cut. I seem to be leaking a stringent burning acid from both.

now back to the past

20^th thurs

Daughter Miri & her husband Jason (I have to specify because my son is also Jason one of three I have, a son and 2 son-in-laws) found me awake and talking to them but drifting off.

My recollections of the first night are pretty much the same, a nurse was always with me, taking blood pressures and temp and measuring an emptying my catheter every hour while I unmoving dozed in and out conscious.

I was told my creatinine levels had dropped to 200 (from in the high fives) in hours. As I understand it creatinine is a waste from muscle use that can only be excreted by the kidney. At ten percent function, I have trouble to get rid of the muscle waste of a relaxing day watching movies. The rest keeps circulating in the blood impeding function and this is not the only toxic metabolic by-product circulating just the indicative measure.

21^st Friday

Creatinine from yesterday’s blood-letting 140, the taking is easy from the triple headed feeder hanging out my jugular. Through one of the other heads they are pumping in fluids a great rate putting back all the weight they told me to lose. I am now carrying an extra 5 kilos all fluid and still drinking 2 1/2 litres as well. It is all counted going n and coming out. The intention is to keep the new kidney flushed while it settles in. The build up of fluid (and weight) will gradually drain away. I am to ensure weighed in a chair morning and night to ensure a steady rate of flush.

I find it difficult to believe I am now carrying a body part from my wife. It hasn't really impacted yet - too many other concerns with lack of sleep, lack of comfort, lack of dignity and all these bloody tubes hanging off my bruised and battered body.

tranplant day

Today (May 26th)

After Clinic, Miri took us to Borders in the mall for a coffee - We drove from the corner of Frome Rd/Grenfell St to the Grenfell St carpark. Things are improving but walking 3 city blocks and back is not yet doable. The wound drain has stopped leaking, the staples are still in and the other problems are abating. The all important measure of creatinine (of which more will said later) is now 94 lower than Felicity's 107 -I got the better kidney.

Now a return to the past - pictures will be added later, I wont have the cord to get them off the mobile phone until we next visit Strathalbyn.

19/5/2010 wed 8:00 am

Transplant day

The waiting is the worst of it, waiting and wondering at the outcome. Today is also my daughter Miri’s birthday ( if I take the time to work it out 2010-1971 makes her one short of 40) where did it all go? I have to say I’ve enjoyed most of it and the best has been the last ten or so years despite ailing kidney. I have no wish to leave it now or ever. I may think differently if something happens to Felicity; the primary reason I’ve been so contented this last decade. Feliciy is two floors below, preparing for surgery. I can assume se hasn’t gone in yet because her son Errol hasn’t returned.

Despite the CVC, which truly is a pain-in-the-neck, I slept as well as I ever do. The usual nose blockage and mouth breathing gave me a dry mouth however for which I could get nothing – fasting including fluids since midnight. I woke at 5:30 and watched another murder (from England’s deadliest county – Midsomer). Felicity and Errol dropped in briefly on her way down.

While I’ve been writing this a doctor ( the face is familiar but I can’t name him) Any last minute questions? Not really. It is probably the case that anyone in my position knows just enough to scare them but not enough to know what questions to ask, not that anything would change if we did. What can't be avoided must be endured

Felicity goes in about now 8:30 I go in about midday. The ward boss and one of her nurses introduced themselves but kept their distance, Sarah suspect she has a cold, Gaye has a sore throat, and I have just taken 3 huge tables of some unpronounceable multi-syllabic immunosuppressant drug. As an after thought I should throw in I have cold feet, no socks, short pants, thin blankets and cold air conditioning.

Of such, is life – long may it continue …….

Retrospective Post operative notes

I got back on the ward 10pm according to Miri quoting Errol. I know nothing, noth-ing as Shultz used to say. Thus it seems to me we we’re both later out of surgery than expected for reasons unknown. Miri’s Jason who use work at the QEH as an instrument steriliser suggest it happens all the time; an emergency beforehand and all the instruments have to be resterilised.

pre operative musings

18/5 /2010 8:45pm

I’m sitting up in bed in the RAH writing this on my laptop for later transfer. I have a central venal catheter (hereinafter cvc) in my neck; right in the jugular. The process was painless but discomforting. A pillow is placed under the shoulders, the head thrown back and the head twisted sideways to expose the neck. Exposed is how it feels; like you’re the victim readied for countess Dracula in a classic vampire movie. Ultra-sound images display the underlying veins and marks are made to guide the placement and angel of the tube about to be inserted under local aesthetic .

Holding that position for thirty minutes is what is discomforting. I took the time to meditate, breathing slowly in blue world and counting the breaths, while hey anaesthetise, prod, poke, insert. The tube hanging out my neck giving my right side a somewhat Frankenstein’s monster look divides into three colour-coded leads: white, maroon and blue – purpose unknown.

One has been used already to take blood samples. It reminded me of the movie Dune - Baron Harkonnen’s playmate with the plugs in his arteries; lots of good material here for a ghoulish story. Except for a certain stiffness of neck that makes it hard to turn my head, I am feeling alright, however my blood pressure is elevated which suggest I may not be as relaxed as I imagine I am.

Felicity came in with me and her son Errol joined us later. Thankfully he is going to stay with her in the serviced apartment we’re renting - she would be frantic otherwise having to wait by herself and come in tomorrow. They left about 7pm to go for dinner (or tea, depending on where you hail from). She will back in the morning and on the table before me (as must happen).

I will be unable to forgive myself if anything untoward should befall her, anything at all, she does not deserve this she has been through more than enough already and though none of that was my fault - this is.

over the next few days (now that I have access again) I will add dated entries (most already written) until the experiental dates match the posted dates.

To be continued …….