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

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

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.