The first time

scared-womanWe all remember our first dialysis session. I certainly do. At the Central Dialysis Unit, just down the stairs from Ward 4, the kidney ward. It was a super emotional time. Julie walked with me into the unit, my heart thumping, my mind racing, looking everywhere, taking in everything. I kept my face blank, hiding both fear of the unknown and anger that it was really about to happen. Everything was new and unfamiliar. Nurses moving briskly about. Patients on dialysis machines in all directions. And there, across the room, an empty chair next to a humming and flashing machine, just waiting for me.

Luckily, the Unit Manager was an experienced and sensitive soul. She knew it was my first session and made sure I knew she knew. “I know you’re not too happy about being here, but we’ll do our best to make today a gentle start to your time on dialysis. *Heather will be putting you on today. She is one of our best cannulators, and you’ll just have a short run today – a couple of hours.”

My mind went blank: what’s a cannulator? And relief washed over me at the same time: I wouldn’t have to sit there for four hours – this time.

Heather arrived. Hi (nice smile, didn’t look too fierce or incompetent). “Please wash your arm at the basin, then have a seat.” I washed, sat in the chair and waited.

Heather began examining my fistula “good size, nice and soft, with a good pulse and thrill” (I knew about the thrill – in bed, when my forearm was on the pillow next to my head, the roaring, pulsing sound had woken me up more than once). More pressing and examining, all the while explaining what she was doing.  Would you like local? It stings a little, but it helps with any cannulation pain.”

Ah, cannulation is needles! Yes please.

All ready to goEverything lined up on the table: two very large needles with tubing attached, a very small hypodermic needle with local anaesthetic, tourniquet, strips of tape. Ready. She fits the tourniquet, wipes my arm with disinfectant. OOWH! The unexpected sting of the local.

 

Taped in placeHeather picks up the first needle. In it goes, smooth as you like, into my virgin fistula. No pain to speak of, but a little uncomfortable.  She tapes and flushes. We both smile. A minute later she has the other needle in. Intrigued, with two needles sitting quietly in my new fistula, and relieved that all went well, I relax for the first time: it’s awful, but not so bad as I imagined.

Heather connects me to the machine (with a fairly gentle blood flow of around 200ml/min) and I watch my blood snake out of me, through the filter and a few little holding tubes then back into me.

I look around: I’m just one of the crowd now.

I don’t know if I was lucky because I went to a unit with great management and experienced staff, or if the unit had systems in place to ensure great service, but that was my experience, 21 years ago.

And it should be every new dialysis patient’s first time experience.

Not the worst time

Unfortunately, based on a new patient in our unit’s first encounter in a Melbourne hospital, it is not. No need to go into detail beyond that whoever put her first needles in made a botch of it., *Kate’s first two runs resulted in blows that rendered her soft, young fistula virtually unusable. She was traumatised and terrified of trying again. Her husband took weeks off work to support her and their young children.

Luckily, Kate is now in our unit and on the mend, though at present her fistula is still only able to handle single needle dialysis.

How this could have happened is beyond me. First-time (and any-time) dialysis patients struggle enough without poor training and slipshod procedures further endangering their lives. Quality procedures and systems should be part of the DNA – fundamental building blocks – of each dialysis organisation, and each clinic.

For example, my unit has several detailed cannulation procedures, including one for mature fistulas and one for new fistulas. All are reviewed and renewed regularly to keep them effective.

Another way to keep them current is to track and respond to incidents like Kate’s, so changes can be made to minimise the chances of it happening again.

For example, a couple of years ago after a transplant, I was given the wrong dose of a very expensive and powerful antirejection drug (all at once rather than in 10 doses over 10 days). I became quite unwell and Julie rightly complained, loudly. As a result, several people apologised (including the hospital in writing), but more importantly, procedures were changed and additional training given to staff.

I will certainly urge Kate to provide feedback on her incidents, for her peace of mind, and so that other first times at that hospital are like my dream run, and not like her nightmare. The unit should have a written incident report for each blowout. Once she is up to it, she should follow up and find out what, why and what they are doing about it.

Suffering in silence helps no-one

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…)

What’s it like to be on dialysis?

What is it like to be on dialysis?

In my last post I asked for your help in preparing a video for people who have just been told they need dialysis.  It’s a scary time and the first thing most people look for is information they can trust. Who better to provide that information that the BigD community?

I was asked for the video by MaryAnn & Rajiv in Bangalore, India.  They are putting together a range of videos covering dialysis and transplantation.  The video I have prepared has a short introduction then a series of 1 – 2-minute interviews where we asked a broad cross-section of people on dialysis four questions: (more…)

Dialysis Briefing 3. From Shock to Acceptance

Here is the third Briefing module.  As usual, it is not quite as I expected.  It was to cover two aspects: Physical, how you may feel before the session; during the session; after the session; when you get home, effect on sleep; and Emotional (Mental): dealing with the new reality; the grief cycle.

I received several very valuable emails and comments on both topics, but especially on the grief cycle.  As a result, each turned out to be bigger than expected.  So I decided to write one sheet on each topic, beginning with grief: coming to accept life on dialysis.

So here is Briefing 3. Dialysis – from Shock to Acceptance

Special thanks to Devon Texas and Carl from Winnipeg, Canada for their valuable input.

 

While researching the grief cycle, I found that there are several versions.  The 5-Stage cycle is the most popular, but I think the 7-Stage cycle is more appropriate for BigD-ers.  However, I found a wonderful summary of the 5-Stage cycle in Wikipedia from The Simpsons, which is well worth repeating:

Dr. Hibbard: Now, a little death anxiety is normal.  You can expect to go through five stages.  The first is denial.
  Homer: No way!  Because I'm not dying! [hugs Marge]
  Dr. H: The second is anger.
  Homer: Why you little! [steps towards Dr. H]
  Dr. H: After that comes fear.
  Homer: What's after fear?  What's after fear? [cringes]
  Dr. H: Bargaining.
  Homer: Doc, you gotta get me out of this!  I'll make it worth your while!
  Dr. H: Finally, acceptance.
  Homer: Well, we all gotta go sometime.
  Dr. H: Mr. Simpson, your progress astounds me.

Next Dialysis Briefing Sheet

The next dialysis briefing sheet, Briefing 3 will be titled: Dialysis: from shock to acceptance.  The sheet will cover two aspects:

  • Physical: how you may feel before the session; during the session; after the session; when you get home, effect on sleep
  • Mental: dealing with the new reality; the grief cycle.

Before starting, I would be very grateful to receive any ideas you may have on this topic: what you experienced; things you think could help others; what you would have liked to been told; things you did to get by, etc.

Please email them to me at greg.collette (at) gmail.com, or post them as comments on this post.

As usual, the result will be a two-page Briefing which I plan to post next Friday.

I look forward to hearing from you!

Greg

 

Starting Dialysis: More things You Wanted to Know But Were Afraid to Ask

1-Briefing sheet 1 picIn my last post I wrote about preparing some training materials for BigD-ers everywhere to learn a bit more about dialysis and how to get the most from it. I started writing the first module this week, and realised that I’d missed an important topic: answers to those questions that flood in when you first find out that you need dialysis. So that’s the Briefing module I am putting up today.  It’s called Starting Dialysis – Everything You Want to Know But Were Afraid to Ask. (more…)

The Big(D) questions: How to keep going; PD, HD or a transplant?

Last week was a big week for questions, and rather than answering them in the Comments area, it seems like a good idea to discuss some in a post.

First, Dan wrote:

Hi Greg, I’m 30 years old and I have PKD, I’ve had a transplant which unfortunately failed in January 2012. I spent a few months training to do haemo myself so I could do it at home (thinking that would make it much better) how wrong I was!  I’m not sure if it’s my age and the need to stay active but dialysis is driving me mad! I get very fidgety and agitated especially when I’m on the machine and sometimes I get so angry when I’m on there I just want to smash the bloody thing up! (more…)

Starting Dialysis

1-StartingOver the Christmas holiday time both Peter and Armand left comments about their nervousness starting the BigD, Peter for his soon-to-be wife and Armand for himself.

They are not alone. Everyone gets nervous about starting something as dramatic and alien as the BigD: the needles, being a patient, the machine, watching your blood go round and round through the dialysis kidney, the time commitment – it is a big life change.  Also, most people feel very unwell by the time the starts dialysis, so unwell that they can no longer work or play.  Things feel bleak.

But after a few weeks on the BigD (more…)

Starting Dialysis – answers to questions you were afraid to ask

dialysis machine in useLast week I received this moving email from Emily, describing how she and Edward (not their real names) felt when Edward eventually began dialysis.  I am sure it will strike a chord with BigD-ers and their partners/carers everywhere.  She also had lots of questions, like we all did when we started but were too embarrassed or didn’t know who to ask.

I think Emily’s email, and maybe my answers, will be relevant to many other members of the BigD club, not the least because they will realise that they are not alone. (more…)