Preventing Fistula Ruptures: training course for patients

DV Poster 99DesI have just returned from the Renal Society of Australia’s annual conference, held on June 20 t0 22 this year at the Gold Coast, Queensland.  The conference is for renal professionals, nurses, clinicians, doctors and consultants. I went along because I was a co-author on one of the presentations.

The other author and presenter was Julie Tondello, a renal Associate Nurse Unit Manager at my Diaverum dialysis clinic in Diamond Valley, Victoria. The paper was called “Can your fistula rupture?” and was triggered by the ongoing posts, comments and queries about fistula rupture deaths on this blog. (more…)

Fistulas and fatal haemorrhages: what to do

1-Snapshot_3In February 2010, I wrote Dialysis: death via a damaged fistula, which was about Maya’s father, who died when his sore and swollen fistula burst in bed and he bled to death.  At the time I asked some of the experts I knew about this and all said it happens, but was very rare.

However, over the following 18 months I had a steady flow of posts about other people who had died or came close to death from a leaking or haemorrhaging fistula, and it started to look a lot less rare. (more…)

e-Patients: being our own guardian angel

1-IMG_1532I am now in week 5 of the eHealth MOOC I wrote about in my last post.

It has been a revelation.

The most eye-opening subject was covered in week 3: eHealth for patients and citizens: all about e-patients.

Before we go further, meet e-patient Dave deBronkhart.  His story cuts to the chase: it saves me writing and it saves you reading.  It only runs for 16 minutes, and its great! (more…)

More on fistulas and fatal haemorrhages

Infected 1This post is about fistulas, the dialyser’s lifeline.  It’s about how and why they can haemorrhage, signs and symptoms that indicate a potential problem and action to take to prevent it.

We BigD-ers need a fistula to make it easy to insert dialysis needles.  The needles are reasonably large, and cannot be inserted into normal veins.  If you don’t have a fistula and you need to go on dialysis, you usually get a Perm Cath (permanent catheter) or central line that is connected directly to one of several large veins in your neck.  If you can’t grow a fistula on one or both arms because the vein has too much scar tissue, (more…)

Dialysis: death via a damaged fistula

Yesterday, I received this comment on my post on fistula blow-outs from Maya in New Zealand, which quite shocked me:

hi my names maya from new zealand. my dad passed away 1 years ago aged 44. he had been on dialysis for about two years. he had been complaining about his sore and swollen fistula for months but nothing was done. my mum woke up next to him to discover him dead, he had put pressure on it and it burst as he did not feel it he bleed to death. his autopsy showed all his body organs were 100% healthy apart from his kidneys. we are angered by his treatment, resulting in his death. nothing has been done even though a full investigation was meant to take place. could you please give me some advice on what i can do, how i can bring this to the attention of others that might do something, and is this very common? i would appreciate any feed back. thank you…maya cassidy

Here is my response (with additions on 22 Feb). (more…)

Getting a kidney transplant from a loved one

I’ve had kidney problems since 1972, when I was 20.  Through some luck and good management (by Dr John Dawborn, my renal specialist), I hung on to my free and easy life style until June 1995, when I finally joined the BigD club.  Julie and I had been married for 21 years and we had three children.  Neither of us was happy about the BigD and me, and after much thought, Julie conceived a cunning plan to get me out: she would give me one of her kidneys if she was compatible. 

She was!  So began the long workup process: blood tests, counselling, psychological interviews, physicals, transplant workshops, the lot.  At this time, living donor transplants were rare (donor kidneys were mostly from cadavers), and we were the Austin Hospital’s first husband – wife transplant. 

Then, in November 95, after only six months on dialysis, we found ourselves in adjacent trolleys, being wheeled to theatre, first Julie, then an hour or so later, me.  We went in to the operation with high hopes and no thought of failure.  It was to be a real life fairy story, with me off dialysis after receiving a unique, life-changing gift from Julie.  It was an exciting time.

Apart from the family trauma (our children were then aged 15, 17 and 19 had the worry of both parents in hospital for serious operations), the operations went well.  Julie recovered quickly, as did I.  

However, within two days my body rejected the kidney.  In spite of massive doses of drugs (and the harsh side effects), the toxic kidney was removed after a very unpleasant roller coaster ride, three months later.  As part of the closure process, we asked to see it.  It arrived a few hours later in an otherwise empty Styrofoam six pack cooler.  It was small, black, sad and quite dead.  We said our goodbyes.  It was a difficult time for both of us.  

I went back on dialysis.  

But take heart, this is not typical.  Failure rates at that time were around five percent, are less now and continue to fall.  And I have since had a successful transplant. 

So, what are the lessons from my experience? 

Firstly, while no two people are alike, expect rejection.   Some of us reject right from the outset, others breeze through the first few weeks/months.  But either way, don’t think you are in the clear once you leave the hospital.  On average, heart transplant patients have 2.5 rejection episodes in the first year.  Kidney transplants are no different.  

Secondly, expect infection.  Your immune system will be heavily suppressed.  While you take as much care as possible, you should also expect some kind of infection during that early period, typically one that your body would normally brush off.  

Chances are you will experience both rejection and infection in the first year.  Their severity will vary depending on your personal make up and any random factor you care to mention.  But, if you are mentally prepared, and something happens, you are ready.  If nothing happens, well that’s one of life’s little bonuses. 

Thirdly, persevere.  There may be days when you wonder what the hell you have done.  You find you are in limbo for hours, sitting and waiting; sometimes in pain, sometime not.  I called these days donkey days, where you keep going, even when you are unsure why.  But take heart!  Things improve eventually, either with the kidney, or without it (but mostly with it).  

So, if you take home one thing from my experience, it’s this:  a kidney transplant is another form of treatment, effective, but with side effects; it is not a cure. 

If you can think of it like that, you are ready to start your transplant journey.

Next post: Dialysis and holiday travel