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.