My Boxing Day Test

The good news is that, as expected, I was discharged from the cardiac ward on Christmas Eve afternoon, just in time to watch Carols by Candlelight and wrap presents (Christmas tradition). And I was mightily relieved.

The following day dawned bright and sunny, and fairly quiet (at least in our household), so Julie and I had a leisurely Christmas breakfast, exchanged gifts and enjoyed a wonderfully relaxed Christmas morning.

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Diabolical jigsaw

We spent the afternoon with the rest of the family, ate too much, played complex board games with kids young and old, dozed on chairs and generally had a great day. We arrived home pooped, spent some time on our latest jigsaw (the Mona Lisa, a Christmas gift -– diabolical – too many black bits) and hit the hay. It was a great Christmas Day.

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Off to the Austin on Boxing Day

Which was good, because on Boxing Day I got up and went to the toilet and lo and behold, blood. Lots of it.  Groan. After a very short discussion, Julie called an ambulance. Within 30 minutes I was on the way back to the dear old Austin ED.

When I left the Austin on Christmas Eve, I was put on two new meds to thin my blood (Aspirin and a new drug called Ticagrelor [Tie-Kag-gr-law]), in preparation for the stent procedure. They also changed my anti-AF (Atrial Fibrillation) meds from Flecainide to Amiodarone, which is also more amenable to stent procedures.

The blood thinners were a good move from a cardiac viewpoint, not so good for someone with a history of diverticulitis (where small sacs in the bowel become infected and burst, sometimes causing bleeding), like me about a year ago.

About two months ago I had a small diverticulitis episode, without bleeding, and forgot about it. But my body clearly remembered. What seems to have happened is the blood thinners did their job well, also dissolving a clot that was holding back a bleed, and away it went.

They stopped the Ticagrelor immediately. Over the next two days, I had two more bleeds, the effect of which were tracked by ever falling haemoglobin levels. To compensate, I had a couple of units of blood during dialysis.

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The Christmas entrance to dialysis

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Christmas Dialysis elves

(It doesn’t matter how sick you are, there is always dialysis. Sometimes it is a comfort (especially if it is giving me blood) sometimes it is the last thing you feel like. Either way, when it’s BigD time, it’s BigD time, so grin and bear it.  As usual, no matter how I feel, the staff at the CDU are uniformly wonderful.)

On the third day, it seemed to have stopped. Things were less bloody. Then diarrhoea all night. It’s like my bum was cleaning house, like a lawnmower engine that hasn’t been used for a while sputters and spurts when you first try to start it.  Once it starts, all is well. So was I.

Then some interesting news. The cardiac doctors wanted me to re-start Ticagrelor within a week of discharge, so my blood is thin and ready for the procedure. What’s more, I should stay on it for 12 months after the stent procedure.

The blood drained from my face (I don’t know where it went but it stayed inside me). Julie and I are very nervous about this.

I made a rush appointment with my cardiac specialist to talk it through. I went to see him yesterday.

Unfortunately, the night before the appointment, my heart went into AF. The switch from Flecainide had left me a little short of protection and AF arrived like a runaway blender. Combining AF with a 90% blocked coronary artery can be challenging. I felt so weak I could hardly walk to the lounge from the kitchen without my heart beating hugely and me feeling highly collapsible. I wasn’t sure whether it was the AF going faster or the blockage causing a mini heart attack. I’m still not, but I’m still here, so it was probably the AF.

Fortunately, I had this ideal cardiac appointment booked, and AF was the first topic we discussed. He doubled the Amiodarone dose so my stores will be at full protection all the time between meds. (I took two tablets last night and it’s not over, but I’m a lot better today.)

Then he gave me a stay of execution on the blood thinner for 12 days. A scare delayed 12 days is 12 days enjoyed. Maybe any bleeding that was holding off will heal properly between now and the procedure day (19 January – two weeks today) so the bleeding won’t restart.

Maybe not.

Anyway, that’s the state of play. I’m mostly looking forward to the procedure, so I can get fit again, put on some muscle, go walking and generally reclaim my freedom. But I’m mostly dreading the blood thinners. What if I bleed again? Will they still do the procedure? If so, will I need the thinners for 12 months?

I’ll have all the answers soon enough. So tune in two weeks from now for the next exciting instalment.

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.

Hospital holiday

Hi everyone. Just a quick post to let you know I’m still alive and kicking. My silence is due to spending what seems to be my annual few weeks’ stay in hospital due to unknown causes.

I went in with a sore hip, which, together with a fever implied BUG.  After many blood and bug-in-a-bottle tests, together with heroic doses of vancomycin, I seem to have recovered.  The bug defeated, though at some cost: daily blood and bottle tests helped drop my HB from 110 to 74.

I’m home now, but with so little energy, my Nephrologist ordered four units of blood. I had the final 2 units last night on dialysis. So this morning I’m waiting for a burst of energy that will enable me to walk further than twice around the bed.

But things seem to be on the up, except the hip, which is taking its time. Hopefully, I’ll be back to the blog with inspiration and enthusiasm in the next couple of weeks.

Cheers.  Greg

Then there this: more shameful than inspirational

Again, I’m a little late to the party, (this aired in May)  but have you seen this story?

It is a truly shocking report. it confirms our worst fears: US dialysis is in crisis. The most expensive dialysis service in the world has the highest dialysis mortality rates.

Two for-profit giant companies (DaVita and Fresenius) deliver 70% of the care, overwork and underpay staff while making enormous profits. From this report, it is clear that the industry is overwhelmed by bad incentives, poor oversight, and profiteering.

Any wonder why over 70% of the fistula rupture stories on this blog are from US readers.

The one small light at the end of the tunnel is the California Dialysis staffing bill.

But first, have a look at the report (Language warning!).

Medscape has a great article about\ the California bill, (it’s free, but you may need to log in), that has attracted a huge number of comments, all in favor.

For example, one nurse wrote:

…The problem arises when you take care out of patient care.  By this, I  mean that the monetary value of running a clinic outweighs the quality of care provided by the staff.  You can not expect Staff to give the quality of care when they are overloaded with 4+ patients to care for and only have 15 minutes between each patient to rinse back, take VS, close up their access (be it a catheter or a access (graft or AV Fistula)) and put another patient on by doing their VS, quick assessment, cleanse their dialysis catheter/ graft/av fistula, start their treatment, document on the patient and give report to a charge nurse.

And another:

…I was tired of on-call and went to work in-center and my ratios in New Jersey were 3 patients per tech, nine patients/RN.  I had to assess 9 patients and put on 3 every shift and when you have techs they may put the patient on the wrong bath, not do vital signs timely, with no time between shifts if you had a patient hypotensive, it was insane.  A patient died on that unit, but not assigned to me that day because the techs did not do their vital signs and the nurse was busy doing something else. The B/P kept on dropping and no one assigned in that area ever told the nurse assigned there.  You still have to do care plans, monthly notes, give blood, give meds, and get yelled at because you are not doing turn over fast enough.

How the No boosters keep a straight face is beyond me.

One interesting thing from the video: when these companies are sued, they settle.

Food for thought for anyone who has had a loved one die from a fistula rupture in one of their units,

Guest post: Holy Roman Holiday

Lorraine from Melbourne shares her excellent Roman adventure:

I want to share with you my experience after starting haemodialysis at Diaverum Diamond Valley  in August last year.  As well as taking courage to successfully return to my part-time work in a gradual way after a period of depression following my hospital admission  I managed with no hitches to undertake a short overseas trip to Rome.

Even though I was extremely ill earlier last year with a long hospital stay, including nearly two weeks in ICU and with no immediate prospect of overseas travel, I decided with much faith to renew my expired passport. Little did I think that I would need it to travel to Rome in February this year!

I went with two friends to participate in a congress and private audience with Pope Francis for the 25th anniversary of an international network of business entrepreneurs, workers, students, researchers united by a vision of the world and the economy oriented to the common good and the integral development of the human person and society.

With the wonderful help of Chris, our Unit Manager, my dialysis sessions were seamlessly organised with Diaverum in Rome and providentially I was not even charged! But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

Lorraine with Pope Francis

Lorraine with Pope Francis

It certainly does. Thanks Lorraine, you are an inspiration BigD-ers everywhere.

Living well on dialysis? Absolutely!

BigDandMe is all about living well on dialysis.

Hard to imagine when we first hear the bad news: I’m going on dialysis. Then, our life seems to be consumed by shock, anger and not a little fear. But for most of us, that doesn’t last, because after a few weeks, we start to feel well again, and our resilient side comes to the fore. Our life is not over, just different. And dialysis is the price of the ride.

It is always great to hear of other BigD-ers with this living-life-to-the-full attitude.

 

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Wayne Cooper LSBM at DELA

Like Wayne Cooper, a board member of that wonderful South Australian institution, the Dialysis Escape Line Australia*. DELA’s main goal in life is to set up temporary dialysis units at resorts and on cruise ships to allow patients a holiday, without the stress and difficulties commonly experienced when organising treatment away from home. (more…)

Happy Christmas Dialysis

No dialysis in unit on Christmas Day.  So I started nice and early this morning (0530 Christmas Eve), so that everyone who normally dialyses on tomorrow can dialyse today or Boxing Day (St Stephen’s Day).

Home now, wrapping presents, preparing food and enjoying the anticipation of a happy day tomorrow.

Have a very Happy Christmas and I look forward to catching up in the New Year.

Cheers!  Greg