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…)

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…)

Holiday Dialysis in Mainland China? Not yet, but maybe soon

I’m keen to go to mainland China to immerse myself in the language and get more fluent. The problem is: how reliable is dialysis over there? Here’s what I’ve found so far.

Like me, you’ve probably heard stories about poor quality water, not using new consumables (eg reusing [your own] lines and dialysis cell in subsequent runs, injecting with used needles), and more. (more…)