Monday, Monday, Can't Trust That Day

Yesterday was good last night horrible

Yesterday: Sun 30 May

walked up to the Sunday markets in Rundle St East, then down the mall to buy a jigsaw. Slowly of course with many stops for coffee and toilet ( that problem hasn't gone away)

That problem came back with a vengeance overnight, if you rate pain on a scale of 1 to 10 where zero is no pain and 10 is excruciating agony this is a 12. and it happens every hour whether I need to pee or not. If you see man in gray track suit pants in the mall who confronts you by suddenly playing pocket billiards it may be me.

T0day Mon 31 May

Started well and went downhill. The daily clinic was good, I reported the increasingly belligerent penis and have been given some solutions. One a 'sal vital' like effervescent drink to de-acidify my urine and two a penile injection of local anesthetic gel.

Then they looked at the wound and decided on the spot to remove half the staples (bonus they weren't due out till Wednesday) It a good feeling to think that you are progressing faster than expected - it might all be bullshit but the good feeling remains.

Today was also scheduled for biopsy so back to the waiting room. I vaguely remember the last one just before my nephrectomy as being an overnight stay but I wasn't that worried this would be different. for natural kidneys they dig deep through the back, 'unnatural' ones are in front just under the surface. I didn't feel a thing it all went smoothly and painlessly but then the crunch, I was stay lying on my back in that position for the next six hours

Oh! shit - more correctly Oh! Piss - six hours, that's at least 5 urinations in this position without the ability to get up and dance with a firm grasping the instrument of pain. The routine I've developed to help me through the night. Pity I didn't the solutions earlier.

I rang Felicity to give her the news and she walked to join me fro most of the six hour nightmare sitting in her own chair of pain. It is true, misery loves company. peeing lying down is an art form - doing so, regularly, while peeing acid is a sport for elite athletes - I'd rather have a baby - at least you get something nice to take home.

In the end I was at the RAH from 7:30 to 4:30 - a whole day of what little life I have left shot

But I have the solutions - let's hope one of them works

'Ooroo

The beat goes on.

Today (may 30)

The day is young. 9 am. I usually let the day transpire then blog it but I had a better night, not good mind, but better, longer periods between bouts of pain. The solution was to empty the bladder at each sitting. Until last night I was content to simply ease the pain then get off the pot. I can only assume that what was left exacerbated the irritant. There is a point during urinating when nearly empty that give a sense of well being more profound than simple relief.

so forward to the rest of the past - a long entry

24^th mon Last day chaos -

creatinine 100 now well within the range 60-120

Finally I can sleep on my side and got a good six hours between blood pressure readings. With Felicity gone I have nowhere to walk to but have to anyway. There is conjecture about my release today or tomorrow. The surgeon who did the extraction half of the op came to see me and suggested it but left no notes and now my file is gone. taken for admin purposes which could indicate going home. I have no clothes however and though the catheter has been removed I still have a wound drain and bag attached - I'll place and order for dinner and for tomorrow's breakfast and lunch just in case ,

Miri who is looking after Felicity in the apartment keeps ringing to find out but no-one will make a decision. In the end they turn up anyway. Felicity has to go for a short walk every day as part of her recovery so when they got halfway to hospital they decided to go on and get a taxi back. While they were en route the wound drain is removed and I get my marching orders but they unknowing do not have my clothes. Luckily Errol is coming in. He gets rerouted via the apartment - I may just get out of here after all.

5pm Dinner arrives, the nurses tell me it's unlikely to go this late, may as well enjoy the meal.

After dinner Errol & Kyle along with Miri and Felicity arrive and things happen fast work certificates are signed and I'm released, free at last,

I mentioned having a hot flush rush up my face when I lay down, rationalising it as the better ability of filtered blood to transport heat around the body. Miri, quick as flash said, ‘Menopause, you have Felicity’s kidney. Much laughter ensued.

25^th

I have had some difficulty with nocturnal peeing overnight. It stings and trickles and makes my scalp tingle. It only happens overnight not in the daytime. I shall have to ask what’s going on.

Day 1 at the clinic. Take a card and wait. The doctor sees you first for and problems and asks how you feel (I forget to ask about peeing). First up he writes up a new folder with details of what drugs you take – I of course only had a vague idea and had left my chart home (I’m new at this). Weight and BP get taken and you get two blood forms to take to the nurse who also takes a urine sample. I end up with three holes; two in one arm - one in the other. The bandaged wound drain hole had shown signs of slight leakage when left the apartment to walk the two and half city blocks to the RAH. It was almost running down my leg when I arrived and has been replaced with a drain bag glued over the hole by hand heat. I was supposed to take my morning pills straight after the bloods, which is why you take them with you, but I forgot and no one mentioned it. I didn’t think about it until I was struggling home in the rain. I think they might take better care of ‘first clinic’ people – show them the ropes

Today my daughter Miri who has been looking after us took us home to Strath for the extra things we needed reading lights, and big pillows so we can read in bed, our bedroom HD TV/DVD player (no subtitles on the cable TV provided), and trust me recovery without reading or TV will drive you nuts, the 15 minute walk to and from is about as much as exercise as one can tolerate at this stage, and finally raincoats. While home we collected mail, paid bills online, and answered email (especially those enquiring after our health – they know who they are and they are and their thoughts are appreciated). Other friends phoned and sms'd us. We had lunch there an I opted for a vegemite on a piece of toast left over from our . My brother Ian called in. My other brother Brian can’t. He has a cold and I as an immune suppressed tranplantee need to stay away from sick people, except of course daily, when I go to the hospital.

26^th

It is now one week since the operation and I feel good, almost. Last night was terrible I got up to pee and couldn’t. The problem seems to be clots from the healing junction where the kidney’s out tube has been sewn onto a hole made in the bladder getting jammed in the urethra. It takes the pressure of a full bladder to clear them, which I didn’t think I had; I had emptied before going to bed. I was on the point of ringing the hotline when I felt the tingling scalp of an urgent call and this I stood up for a gravity assist and streamed away. The relief was palpable. For me, the secret is to drink plenty going to bed, hold it and walk around a bit when I wake then stand when urinating. (At night I usually sit so that I don’t need to put on a light).

Day 2 at the clinic

I was reassured by the doctor, my problem was normal and lasts a couple of weeks, the bag was replaced and I managed to take my pills. I took a book for the waiting and despite arriving 15 mins early I was number 6 (not the village); yesterday I was number 2.

Today I’m back to writing this blog, which I will post as soon as I have broad band access, Miri and her husband Jason are out shopping for one now

I'm now up to date though all of the above is subject to change without notice - I can see gaps in the retrospectively written story and I would like it to be as complete as possible with pictures so that anyone contemplating the same journey will have some idea what to expect

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 …….

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.

The Trilogy

G'day

The whole box and die as writ thus far and tentatively titled "The Restoration Legends" is now up on my site under my author tab, through the labyrinth portal to http://www.rob.bleckly.com/Legends/index.html.

Each book has two parts as follows:-

Book 1 "Break" (was 'The Break of Civilization')

• part 1 "Reason" (was 'The Test of Reason")
• part 2 "Faith" (was 'The Test of Faith")

Book 2 "Face" (was 'The Face of the Goddess')

• part 1 "Guilt" (was 'The Guilt of Sanctuary')
• part 2 "Innocence" (was 'The Innocence of Face')

Book 3 "Arch" (was 'The Arch of Restoration')

• part 1 "Love" (was 'The Design of Ancients')
• part 2 "Hate" (was 'The Waking of Sleepers')

home-made covers - book 3's is deliberately blurry -it's not your eyes
I like symmetry. The shortening to one word titles is just the latest in a long line of changes stretching back years. The reasons for the changes I'll leave for another post. Suffice to say it's a work in progress, a long work and and slow progress. I'm not happy with the last two parts - the long titles better reflect where the story has to go but then again none of book 3 is written.

On the site each book has a page listing chapters available and roughly when they where last updated (the dates will become more accurate as I progressive upload new and edited chapters)

The .pdf format chapters, especially in Book 2 "Face", are writing in the raw, unedited first draft straight of the top of the head via the fingertips to the keyboard. I'm a two finger typist and my brain is often well ahead of my fingers. The spelling and grammar checker's do a reasonable job but don't pick up everything.

Enjoy

'Ooroo