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

Getting away: not always easy!

Over the last six months, we have managed to get out of town occasionally, for one or two days around dialysis.

By around dialysis, I mean that leave for our mini holiday accommodation (usually a hotel about an hour away) straight after dialysis on Wednesday night. We spend the night and have breakfast and a leisurely Thursday morning there, then, around lunchtime, we return for my afternoon dialysis. At the end of dialysis, we go back to the hotel (all in all about a 4 hr round trip). We then spend Thursday night and all of Friday at the hotel (no dialysis Friday) and check out Saturday morning in time for midday dialysis.

Basically, this gives us three nights away, with one (shortish trip) to dialysis in the middle.

Works for us!

 

Beautiful Healesville

A couple of weeks ago we did this to go to a flash hotel in Healesville and had a great break.

Just before my big splash

I even went for a swim in the pool! I haven’t done that for about five years when we went to Bali. Back then it was a private pool attached to our room, so there was skinny dipping. But not this time. Lots of oldies there in bathrobes: a naked body may have caused a heart attack – and not just mine.

The other thing I enjoyed a lot was the breakfast: free and as many courses as you like. For me, that’s gotta be the best part of the stay.

Naturally, we are always on the lookout for a mini holiday.

But they don’t all turn out as expected.

About six months ago I was invited to speak a renal conference in Bendigo (about two hours north) on the consumer’s viewpoint of dialysis.  Julie and I thought about it. It would be a great opportunity for a break: we could go the night before, maybe I even dialyse there and stay another couple of extra nights, for a real getaway. So I said yes.

Then. about two months before to conference, Liam (our no.2 son) who was turning 40, sent out an invitation for all and sundry to go to his birthday party, to be held on Cypress, in the sunny Med (he lives out that way). So our daughter Katherine and her husband asked if we could look after the kids if they went too.

Of course, we said yes.

I wasn’t great timing. It meant we were looking after them on the day I was speaking in Bendigo. No mini holiday now.  We would have to get up early with the kids, drive to Bendigo, I’d talk and drive home the same day.

As the conference approached, I spent more and more time working on the speech, which was playing hard to get. Sometimes a little unwell, cursing that I had accepted, and I even considered weaselling out. Looking after the kids was a good excuse. But Julie encouraged me to stick with it (she can be very persuasive).

Then, two days before the speech, I came home from dialysis with AF (Atrial Fibrillation) and was quite weak and useless. Good excuse not to go? No says Julie, let’s wait and see. The AF went away the next day.

As expected, three days before the conference the kids came to stay. About 4am the morning of the conference, I woke up to the kids crying – there was a blackout and their comfort lights had gone out. We lit a couple of candles. Then I checked our alarm – it had reset to 5am. If the kids hadn’t cried, we may have slept in and missed the conference anyway!

Julie and I both set our phone alarms.

Up about 6am. Organising and shepherding kids, we left about 7am. We arrived with 15 minutes to spare. I checked my notes, sat and waited until the previous speaker finished.

I walked to the lectern and looked at my notes. The first page was missing. Great…

Luckily, I remembered most of what I was to say. After a little heart flutter, all went well.  I delivered my speech, left the stage, and called Julie. She arrived with the kids 10 minutes later and we drove home.

Bendigo from the car

Not the break we’d imagined.

But a week after, I had an email from the organiser. They loved the speech. Lots of praise. Would I like to speak at the next conference, to a larger audience, in June? Only thing, it is in Auckland (New Zealand).

Hmmm. Maybe this could be the Bendigo holiday, done right? I could arrange holiday dialysis for a day or two Auckland. I’d need to be a lot fitter and stronger to travel: working towards this trip could be a good incentive. So I said yes.

I started my first gym session in three months today. I walked on a machine for seven minutes, rode a bike, rolled around on the floor, did some pretty pathetic sit-ups and we went home. Sound like a good start to me.

Now I’m looking forward to NZ!

Getting away on a mini holiday is not always easy, but, with a little thought and perseverance, like life, it can be delightful.

 

My itch has a name – and it’s not Scratchie

The dreaded itch is well known to most BigD-ers. Most people I know have a trusty back scratcher. Mine is made of bamboo and looks a little like a monkey’s claw. I’ve had it for at least 15 years – maybe 20. The scratching claws are smooth from much work, but they still do the job.

We all know the pleasure of a good scratch.

Most people will tell me it is a phosphate itch. They say my phosphate levels are too high either because I have strayed from my low phosphate diet, or I’m not using my phosphate binders right (ie, just before I eat). And most would be right – especially in the early years of dialysis.

So, after constant efforts on diet and binders, I managed to get my phosphate levels from a little high to excellent. And mostly the itch receded.

Life went on.

But now, after 23 years of dialysis, it seems that the rules have changed. Over the last few years, my itch has come back, despite my phosphate level being pretty good. And along with the itch, tiny bumps of skin started to appear, mainly on my back. “Little warty dots” my doctor called them (the technical term is lesions). They get very itchy and give off much pleasure when I scratch them. And with the excitement of being scratched, they expand (temporarily) until the memory of the scratch wears off.

Over the last couple of weeks, the tiny dots have also started to appear on my neck and chest. While this expanded the opportunities for pleasure scratching, I really didn’t like how things were progressing, so I asked my doctor for a referral to a skin specialist.

I already go to a skin specialist, but he’s into speed consulting. I go into a room, strip off and put on a gown. A few minutes later he steams in, and it’s out with the LED magnifying glass, looking all over me for skin cancers and brushing other things (including my queries) aside. A quick click at the computer and he’s gone. Wam, bam, thank you Maam.

So I decided it was time for a new consultant.

The new guy (and his wife) have just set up practice. He asked me questions, took the time to listen to my answers, then gave my skin a slow once-over. And then he gave me an answer.

For an unknown reason, sometimes people on long-term dialysis can extrude collagen, in the form of tiny, dry fibres out through their skin, usually on the back and chest. The lesions usually begin about pin-sized and with stimulation (scratching) can get up to 6mm (¼ in) in diameter.

Reactive Perforating Collagenosis

It has a name, and it’s a mouthful: Reactive Perforating Collagenosis. Reactive to dialysis, perforating as in pushing up through the skin, collagenosis as in collagen in fibre form.

The DoveMed link has a good, no nonsense article about it: The majority of the cases resolve on their own without any treatment. In severe case, the treatment may include the use of topical creams and moisturizers, phototherapy, and antihistamines for itching.

Cause

Beyond having chronic kidney failure and long-term dialysis, the exact cause is unknown. But the appearance of skin lesions is triggered by trauma, especially scratching(!). And more scratching and cold weather makes the condition worse.

I think, in my heart of hearts, I knew I shouldn’t scratch my itchy back too hard. And sometimes I wondered which came first, the lesions or the scratching.

Now I know.

Treatment

The big one is to completely avoid scratching the affected areas.

But when it gets crazy itchy, the question is how?

Creams

Anti-itch creams like Antroquoril (a moderately strong rub-on corticosteroid) helps stop the itch. It doesn’t treat the cause (what does?), but less scratching helps the spots calm down and maybe fade into the background (maybe).

My skin specialist prescribed it for me, and it’s working.

Phototherapy

If the Antroquoril cream doesn’t make the grade in the longer term, he suggested I line up for the Phototherapy. There are two types:

1. UVB phototherapy is irradiation with shortwave ultraviolet radiation. To treat the whole body, the patient, undressed, stands in a specially designed cabinet containing fluorescent light tubes.
2. Psoralen Ultraviolet Light A is a combination treatment, where Psoralen (a light-sensitive drug) in cream form is rubbed on the skin to make it temporarily sensitive to UVA (long wave ultraviolet radiation). The skin is then exposed to UVA. The lamps stay on for increasing lengths of time, starting with about one minute and extending for up to half an hour.

It’s been a couple of weeks since I started the cream and I use it twice a day. There is much less itch (though I need a quick scratch every now and then).

Maybe, if things continue to improve, I’ll be able to retire my trusty back scratcher- or at least hang it out of site.

A day out triggers some not so tasty memories

It has been a cold, wet and blustery day here today, with wind and hail coming directly from Antarctica. Just the day to go down to the bay, drink coffee, and check out how the waves and ships handle the weather. We decided on St Kilda pier kiosk, a delightful little café at the end of an about a kilometre of pier jutting out into the bay.

The walk there was like a gym workout, struggling against the blasting wind, hardly able to keep our feet. But we finally arrived and despite our many fellow travellers heading in the same direction, we found terrific seats at a window facing the ships anchored in the bay.

We ordered coffee: Julie a skim milk, decaf latte and (despite me only ever ordering small coffees) I ordered a large flat white (mainly to help me recover my breath and body warmth). And a lamington to share.

We had a lovely time.

When I finished my lamington (I’m not supposed to eat too much chocolate, so I always leave a few crumbs as a sop to my conscience) the sight of the leftovers on my plate triggered a long-repressed memory.

About ten years ago, Keely, one of Julie’s nephews, came to live with us. He had grown up with his mother in Queensland and decided he would move to Melbourne to find a job and maybe continue his studies.

Like every 18-year-old (then and now) he lived on the computer – our computer. One time, after quietly waiting for him to finish whatever he was working on, he logged out and left. I jumped into the still-warm seat and called up my current work. I had been eating a lamington at the time, so I put it (on a plate) next to the keyboard. As you do, I slowly ate the lamington as I worked. When it was all gone, I noticed coconut crumbs on the keyboard, so I started picking them up and eating them. Finally, I picked up quite a large piece and started chewing. It was hard and sharp. It took it out and looked at it. It wasn’t coconut, it was a chewed off fingernail. Keely’s fingernail. I spat and spluttered any trace of it into a tissue and told Julie. For some reason all she could do was laugh.

Which reminds me of another Keely-activated adventure. I was sitting at the kitchen table, about to eat a biscuit and drink some afternoon tea. As usual, I forgot to get my phosphate binders from the kitchen shelf. On the way there I noticed one sitting conveniently on the bench next to the table. So I picked it up, popped it in my mouth and had my afternoon tea.

I thought nothing more about it until Keely came home that night. In front of everyone, he said to me, Hey, did you see the white pill on the bench? Yes… I said, with the start of a bad feeling. Oh good! said he: I put it there. Mitzy (our cat) was trying to swallow it and kept sicking it up, so it I thought I’d put it out of reach. What! said I. What’s the problem says he. I ***ing ate it, that’s what!

Again, no sympathy from the rest of the family, just laughter.

I waited a week or so to make sure I hadn’t got feline enteritis or something before I started to see the funny side.

Ah, happy memories on a cold and wintry day.

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.

But 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.

He 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?

My 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

I hate it when I’m, right.

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.

I’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

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

Jack 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.

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).