Guest Post: To Be or not To Be: The Dialysis Decision

Back in May 2009, after yet another funeral, I wrote There are only three Ways Out, about the three choices we have with dialysis.  Around the same time, Robert Longstaff, then a newly nominated BigD club member in Sydney, faced the same decision.  He looked at the alternative squarely in the eye and after much reflection decided to keep going.

Fortunately for us, Robert put his thoughts during that time to paper, and has kindly consented to share them with us and the BigD community at large.

TO DIALYSE OR NOT (more…)

Not rehab, reconditioning

The last six months of hospital stays, bleeds, transfusions, infections and heart stuff has left me pretty scrawny and deconditioned – my enormous abs, legs and biceps are but dim shadows of their former selves.

But over the last few weeks, I have turned the corner.

My infection is under control (with horse-size doses of Clindamycin, a yucky-tasting but effective antibiotic. My bleeding and other mysterious blood disappearances have at last come to an end (mostly because I stopped taking the blood thinner Ticagrelor, which was poison to me). My AF is under control, with fairly large doses of Amiodarone. The almost-blockage in my right coronary artery won’t be stented or otherwise operated on (to remove the calcium lump I have patiently built up over years on dialysis). I am taking aspirin daily as a moderately effective blood thinner and maybe that will be enough. So far this has proved to be the case.

So there’s no need to be skinny anymore. At last, I can walk further than around the bed. This morning Julie and I walked about 3km (1.8m) around our block. It was no speed record, but I have been walking regularly now and as long as I don’t try to run up hills, I feel pretty pleased with myself.

legsBut Julie, being Julie, doesn’t think that this is enough, so I went to my local doctor, got a referral to a rehabilitation centre and made an appointment.

Julie and I went along a couple of days ago. The first step is to be assessed by a doctor, who then nominates a plan for reconditioning (yes that’s what its called) over the next 10 weeks. I imagined the assessment would take 5-10 minutes and I’d be outta there. But no, it took 1.5 hours and was the most thorough (and humbling) I’ve had.

It began in a friendly way, with the usual questions confirming who I was, where I lived, why I was there, my medical history of how my body came to be in such a sorry state. Then a little family history: illnesses and causes of death in the family, etc. All to be expected.

What was not expected was a detailed physical and mental assessment. First the physical: sit, stand without help, checking the level of movement of arms and legs, timing me to get out of the chair, go to the wall and touch it, then return and sit in the chair. Of course, I moved faster than I have for weeks to make a good show of it, but all the doctor said was: 8 seconds, that’s ok. I thought it was pretty slick. But there was more to come.

First, he gave me a pencil and a printed sheet: join the dots in the right order, redraw that cube and others. OK. Now I’m going to say 5 words. You repeat them after me. I’ll say them again and you repeat them again.  Then a little later, I’ll ask you to repeat the words. They were face, velvet, church, daisy, red.

1-IQ testHe then asked me to count backwards from 100 by 7s. Now, this is not something I do on a regular basis, but off I went subtracting and concentrating until I got to 65, when (thankfully) he stopped me.  It was a slow and stumbling performance. (I later asked my 40-year old son to do it, and he raced through the numbers without thinking – his kids do these backward counts all the time, instead of the old times tables we learned at school, and he picked it up from testing them. Not me.

Still recovering from putting in such a poor performance, he asked me to list as many words beginning with f that were not proper nouns (beginning with a capital F). I began like a racehorse, listing the fa’s (fat far fantasy, etc – even fart), then fe’s (feeble fear fellow, etc), the fi’s (fin finance fickle, etc,) then fo’s (fox fondle forest, etc). then fu’s (future fun full, etc. I left a couple of the more disreputable f-words out. I realised later that I left a lot of fr words, like frank frenzied friar, and even good old from.

But of course, that’s all very well when you are in the car leaving the car park. (The French have an expression for it: esprit d’escalier – spirit of stairs, or wit of the staircase: witty responses thought of only too late, on the way home.  Just like me.

Sitting in the back of my mind all through these tests was: do I remember the five words?  When will he ask, because I need a moment to think. Of course, the tests went relentlessly on for another 10 minutes. Then he asked: what are the five words?

1-memorygameMy mind immediately provided the first two: face and velvet, then nothing. He looked at me, I looked at him, then I looked at Julie (who smiled and looked away – thanks Julie!). Then he said I’ll give you two hints and if you still can’t remember, I’ll give you a multiple choice. I got two more with hints and the last with multiple choice. What I also got was a strong dose of humility.

But there was more to come.

In his very next sentence, he said he not only specialised in rehab/reconditioning, but also in Alzheimer’s disease. My immediate reaction was: SO? It was unspoken and followed (also silently) by When does this session end?? Let me out! I came for rehab, not embarrassment.

Fortunately, it ended shortly after. We were taken to the physiotherapy area and I was booked in the start next week.

I must admit I was a little peeved when we left (i’m a sensitive kind of guy), but Julie thought it was hilarious. After a while (and after testing a few friends) I have mellowed. Either we are all lining up for dementia or those results, under those conditions, for people who need “reconditioning”, are pretty normal.

Anyway, that’s what I reckon.

Ask me again in 10 weeks.

Back to ED – but not for kidneys

Just lately I’ve taken to slowing down. Not by choice.

It’s three weeks after my carpel tunnel #2 procedure, and two weeks after I had two units of blood at dialysis, to recover from the blood loss. So my HB should be pretty good and I should be jumping out of my skin.

But I can’t make it around the block. I walked 100 metres from the car to meet Max for coffee and I was a puffing, exhausted wreck. And my heart was beating like a base drum, echoing throughout my chest. It took about 10 minutes (and at least half my coffee) to recover. Maybe this is not just a haemoglobin problem.

Like any red-blooded man, I ignored it as soon as it went away.  Trouble is it kept coming back, from less and less exertion on my part.

I really hate going to hospital. I fight like a trout to stay away. But last night, sitting on the bed with my heart pounding from the mammoth effort of walking from the lounge room, Julie and I decided it would be best to go under my own insipid steam, before I was carried there by a van with flashing lights.

So around midnight, five days before Christmas, we walked into Austin Hospital ED, registered, and lined up for the Triage nurse. I think I’m having a problem with my heart are magic words that get you close to the front of the queue. Into a cubicle: blood tests (what else?), an ECG and, later a chest X-Ray.

By 5am I was admitted to the cardiac ward. My new nurse promptly connected me my new wireless companion for the duration, a five lead ECG monitor, as I sat on my bed.

It was isolation room. Not because my heart problems were infectious, but because I have VRE (Vancomycin-resistant Enterococci). It’s a bug that lives in my bowel that, like the name says isn’t at all fussed by our most potent antibiotic. It’s harmless in the bowel, but if it leaves home and takes up residence in other parts (of the body), it gets all nasty and very hard to kill.

Not that I’m alone. VRE is one of the less attractive and most common side effects of hanging around hospitals. It’s pretty common amongst us BigD-ers, since we have low immunity, are always gathering together, either in hospitals or units and sharing facilities. I caught it a few years ago on one of my previous visits.

But it’s not so common in cardiac wards and they work hard to isolate it. So here I am in this fairly bare isolation room, facing days of tests sprinkled with dialysis…

It’s now Christmas Eve. I’m an old hand on the ward. Three days ago I had an angiogram and found that I have a serious calcium blockage in my right coronary artery, where it joins the aorta. It needs to be drilled out and a stent inserted. The Christmas period is not a good time, so I will have the procedure in a couple of weeks. I am now pretty stable, with new meds and all should be well if I don’t exert myself (which I won’t).

I’m having dialysis today in my room (third time) and if my bloods are ok, I’ll be discharged today, in time for Christmas.

I have written many times that dialysis patients rarely die from their kidney problems. It is almost always from heart attacks, as the constant fluid overloads and general flood of loose calcium and other chemicals into the arteries eventually exhaust the heart and it stops working. And here I am now, living proof.

Luckily, despite dragging my feet, they have found my problem early, and once the stent is in place, things should get back to relative normality. I know now to take these warnings seriously and to stay vigilant for the next calcium problem.  One thing about BigD; it’s never boring.

I’ll let you know how it goes after Christmas.

Meanwhile, enjoy the time with your family and friends. I know I will.

Yet another !*?*?*! adventure?

This time the adventure began when I went to the toilet. When I looked at the result I saw a black mass surrounded by red wine that I don’t remember drinking. My heart fell: not good.  I thought, will I tell Julie and have to go back to that damned ED? Or will I just stay quiet and hope it is a one-off?

I flushed and began to walk away when I needed to go again.

Same result, with more red wine. Actually, all red wine.  Er Julie, have a look at this. She looked at me with just a touch of anxiety, looked into the bowl and said: Pack your hospital stuff, we’re going to Emergency, no arguments.

Blood transfusion Number 1

Blood transfusion Number 1

I hate it when I’m, right. (more…)

Another September medical adventure on dialysis

With my heartbeat restored to normal rhythm by those wonderful people at the Austin Emergency Department, life was sweet again.

Then on the evening of my third day back on BigD, about an hour into the run: crippling stomach pains. What the hell is this? Over the last few weeks, I’d had a niggling stomach ache, which I had attributed to a series of hotter than usual curries from my lunch shop. As you do.

red-curry-riceI’ve been losing weight lately, so I’ve taken to having a hot meal at lunchtime to try and beef up a little. I go to the same place most days, called ThreeAteThreee (‘cos it’s at 383 Camberwell Road, of course). It’s owned by a Chinese couple called Rick and Too-Shy-to-Say. Rick is a great cook. He makes a main meal every day: one day chicken, the next day beef. Usually, it is a curry (more…)

91 years old and not pleased to be on BigD – Welcome to the club!

1-unsureJack added a comment a few weeks ago that is worth re-posting as a separate topic.  It’s a little twist on our most fundamental challenge.

I am a young 91 yr old man who has had systolic kidneys for over 30+ years. 4.5 +- creatinine level. last April (2015) my kidneys finally gave out and after a week in E.R. and another week in rehab. now on dialysis 3 times a week for 3 hours. My last check-up showed my creatinine at 5.9., a little improvement. (more…)

Dialysis and Taking Notice

The New Look

I’ve been fiddling around with my blog design.  Until last week it had been the same format since 2009.  The new look is called Little Story and has a people-sized, community feel about it that seems just right for the BigD club.  We are all part of the same community, working through some fairly common ups and downs.

Gary commented that the font was too light, and he was right. So after a fairly steep learning curve, I changed it to black, and I am much happier with it.  Actually I am still fiddling with all the colours.  The trouble is they look different on different screens, so after chasing my tail for a while, I’ve decided that if it looks OK on an iPad, then that will do.  Either way, I’ve had a great time!

I hope you like it.  Any comments most welcome.

Taking Notice

Its winter here in Melbourne, and all the BigD-ers have put on their winter fur – or at least their cords and sweaters.  Corduroy and woolly jumpers are lovely and warm on a cold wet day, or while you spend hours sitting, at a computer or plugged in to the machine.

The trouble is, extra clothing tends to show when you step on the scale.  And if you aren’t careful, you can be fooled into thinking you have suddenly gained extra fluid that you can’t remember enjoying.  I think my winter weight goes up about a kilo (a couple of pounds). (more…)

Dialysis and another itch to scratch

It’s a cold, rainy, wintery day in Melbourne: to be expected since we are at the back-end of winter.  I met Julie at the local patisserie for lunch.  She had a chicken and avocado wrap and I had a ham and salad mini-baguette.  Each followed by coffee.  Sounds pretty normal, but as usual for us BigDers, there is always a little man in my head saying ”Should you be eating this?”.

He is right to ask of course.  Just about everything we eat has the potential to kick us off the straight and narrow.  (more…)

Another way to ditch the Dialysis itch

Sorry about not posting last week.  Every now and then my real job intrudes more than it should.  But I’m back on track this week.

For the last few months, I have been driven mad with itchiness:  my back, neck, shoulders, arms and even thighs.  I’m not talking about a small itch, I’m talking industrial-strength itch.  The kind that wakes you up at night, and makes you scratch like a crazy person (more…)