Getting the Needles In – Part 3

Regardless of the siting method you use, the fewer people who cannulate your fistula, the longer it is likely to last, and the less dramas you will have.

Dramas include pushing the needle in so that it scrapes along the fistula wall (painful); taping the needle in place so that it constantly scrapes on one spot the wall (painful and often slows down the flow so the machine alarms constantly); and pushing the needle right through the fistula wall so that the blood pumps directly into the flesh and muscle around the fistula (called “blowing” the fistula).  Blow outs can be painful, they require re-siting away from that area, so you’ll need another cannualtion, and the extensive bruising lasts a few weeks until your body dissipates the blood (and mental anguish and irritation).

The best person to cannulate you is a permanently available friend with a steady hand that goes to your every session, that knows you and your fistula back to front, and who cares deeply about your well-being.  We all know a person like that: it’s us! It is you for you and me for me.

Needling yourself is easier than you think, and once you get used to it, it brings an enormous sense of satisfaction and independence.  Putting in your own needles in also hurts less (or not at all if you buttonhole), because you are distracted by what you’re doing. And, since you can feel both ends of the needles, you have the best chance of getting it just right.

You can get ready to needle yourself in three steps:

1. Stop using local anaesthetic. Usually you are offered local for your first few sessions to limit the overall trauma of the occasion, which is absolutely right.  However, once you are in the production line, stop using it.  It is no great pain saver, since it hurts at least as much as the dialysis needle, and the routine itself is a psychological barrier to DIY.

   How did I get off local?  I cheated.  During my early days, several BigD nurses suggested I stop using local, mainly because it was unnecessary.  My head said yes, but… I just needed that little push.  After about a year Julie and I went overseas to the UK and Europe.  It took a bit to organise (the web and email were in their infancy then) but it was great, and for me it was like a reverse pub crawl, dialysing at a new centre in a new city each time.  I soon found that many countries and centres don’t offer local at all. One nurse at a centre in France brushed aside my request for local with a pitying “Don’t be ridiculous” and stomped off to help more robust French patients for a while.  That told me.  No more local for me!

2. Get some training. Ask an experienced BigD nurse to go through the needling process with you.  Watch maybe three times, taking notice of everything the nurse does before the needles go in (disinfectant, tapes, gauze), and everything after (flushing, taping them at the right angles).  Get to know your fistula, find a good spot for each needle.  Feel the vein layout with your other hand to get a good mental picture of the lay of the land to understand where the veins flow.  Visualise yourself putting them in.
3. Take the plunge! On day four, get the nurse to do everything else (preparation, taping, etc.) but YOU put the needles in.  Don’t just look and hope for the best, visualise where the tip of the needle is going when you put it in, position it right in the middle of the vein, clear of walls, dips, etc.  Do this for a week or so, and then do both the preparation and the needles.  Once you are comfortable with this, do the flushing and taping as well.

Welcome to minimal stress dialysis!  You can now go to any centre, deal with the newest or most distracted or heavy handed dialysis nurse with confidence, and no about dramas.

There’s only one more step to stress free, easy flow dialysis: buttonholing.  I’ll cover this in the next post.

Getting the Needles In – Part 2

Your first few Big D sessions will probably be like mine: a gentle and experienced nurse will put in the needles (called cannulating) and you will have a have short runs, so that your body gets used to the whole deal.  I had my first runs at the Central Dialysis Unit at the Austin Hospital.

While I appreciated the gradual introduction, don’t think I didn’t resent being there.  I was cranky with my body, the situation and anyone who tried to “jolly” me along.  However, as with most unpleasant situations, not venting these feelings tends to lessen their effect, so I just went quiet.  With Julie, my wife sitting with me, supporting me all the way, the sessions were mostly painless, easy and successful, and I was really grateful for that.

After this short honeymoon, you move to the production line.  I went to the newly established Gambro Unit at Diamond Valley, run by the quite amazing Anna Catterall (more about Anna later).  In those early stages, there’s often a strong urge to not want to know anything, and to just hold out your arm for your dialysis nurse to cannulate while you stoically look away.  That’s OK for a little while; it takes a few weeks to come to terms with having to be there, getting to know your fellow dialysers and the general lay of the land.

But you become far happier once you start to take notice.

First and most obvious, you need two needles, one for the tube taking your blood from your body to the machine (called the Arterial line), the other for the tube returning your blood to your body (called the Venous line).  The Arterial needle is inserted pointing towards your hand, so that your blood flows directly into the mouth of needle.  The Venous needle can be placed almost any distance from the Arterial, and usually points in the opposite direction, so that the returning blood goes with the flow.

There are two options for siting the needles:

Site Rotation – At each session the needles are inserted a few cms away from the last sites, in a sequence that goes up and down the length of the fistula. This keeps any one place from being weakened by too many needles, and should help prevent aneurysms (ballooning out of a weak spot in the fistula wall).  I used this technique for about eight years, as you can see from the white scar tissue along the length of my fistula.

My 14 Year-Old Fistula

Buttonholing – At each treatment, as much as possible, the same person puts the needles in the same holes, at the same angle. After about seven treatments, a track forms in the fistula (like in a pierced ear). You can then insert special blunt needles into the tracks.  This approach is nearly painless, and is said to reduce infection and aneurysms.  I have used the buttonhole technique for about ten years, since it was first developed.  I found it counterintuitive, so I first did it as an experiment (suggested by my Renal Specialist, John Dawborn at the Austin Hospital, who was a pioneer in many dialysis advances).  However, once I began, I found that the benefits were real (including less dramas and faster clotting after treatment, so I could leave quicker) and now I would never consider any other method.

However, to do buttonholing right, you really need to have the same person (or people) cannulate at the same angle every time, otherwise the track is constantly damaged by needles going in at the wrong angle and without the track you lose all the buttonholing benefits.

Of course, the very best way to get the benefits of buttonholing is to cannulate yourself.  It’s actually pretty easy, once you get through the mental barrier.  I’ll cover self-cannulation and how to get there in the next post.

Getting the Needles In – Part 1

The thing about dialysis is that you need to clean ALL your blood, not just some of it. The best way to do this is to pump the entire body volume through the dialysis cell several times during each session.

To remove and replace that volume of blood over a few hours takes fairly large access holes – about the diameter of coat hanger wire.  There aren’t too many places on our bodies where you can poke in needles that thick on a regular basis, so medical science comes to the rescue, and makes one. Or a variety of different ones, depending on the state of your veins and how fast your kidney disease has progressed*.

The most common is the fistula (which I have). It is created by joining a high pressure artery to a low pressure vein on one of your fore arms. This is done by a surgeon under local anaesthetic. The pressure of blood in the artery gradually exercises the vein, which becomes larger and stronger, inflating like one of those sausage balloons (well maybe not quite that much), to create an ideal entry point for the needles.

A couple of things:

It takes months for the fistula to expand enough to be able to be used, so, regardless of your belief that dialysis will never happen to you, bite the bullet. Take your doctor’s advice and get it done early, 12 or even 24 months before you need it. That way you can start on your terms, rather than either holding off until you are on death’s door, or having to put in a temporary access, which is even less pleasant, to tide you over until the fistula is big enough.

I found that psychologically, getting a fistula was a big deal. There is lots of turbulence where the artery joins the vein that results in a whooshing noise and a buzz (called a thrill, though I’ve had better) that coincides with your pulse. In a quiet room you can usually hear it clearly, especially if it’s amplified by what you are resting your arm on. The first time I heard it I felt quite low, realising that I was no longer the pristine me I had come to admire, but rather a permanently modified version. Still, the gloom passed, and now I sometimes use the thrill to amuse small (and not so small) children.

So, now we have access points, how do we get the needles in?

As far as I’m concerned, the best way would be to have some kind of artificial valve system installed, that could be connected directly to the lines on the machine. Seems like common sense to me. Alas, nothing like that exists (yet). It seems there are some difficulties with clotting, infection and worse, though I have not heard of any actual tests…

Anyhow, for the moment, that leaves needles. There are two options, Site Rotation and Buttonholing. We’ll talk about them in the next post.

*I don’t know enough about these to talk of them, I will leave it to others (via comments or if none are forthcoming, via guest posts).

Dealing with it!

The objectives of this blog are to help people on or new to dialysis to:

• Deal with (understand and face) the challenges of the Big D
• Live their lives (via hints and techniques) as healthy, non Big D people when they are off the machine.

Where possible, each post will handle challenges and issues in this format.

So let’s stand back and have a look at kidney disease, our kidney disease, from the psychological level. Of all the things to deal with, this is the most important. How we do that determines our quality of life from here on.

We have all heard of the (Kübler-Ross) Grief Cycle. :

1. Shock: Initial paralysis at hearing the bad news.
2. Denial: Trying to avoid the inevitable.
3. Anger: Frustrated outpouring of bottled-up emotion.
4. Bargaining: Seeking in vain for a way out.
5. Depression: Final realization of the inevitable.
6. Testing: Seeking realistic solutions.
7. Acceptance: Finally finding the way forward.

We all go through the 7 stages; some of us go faster than others. (If you think you’re different and it doesn’t apply to you, you are still at stage 2!)

The secret of success is to establish a new equilibrium for your life (again). You’ve done it before: when you left home, when you got a job, took out a mortgage, found a partner, had kids, even grand-kids, etc.  All of those events demanded change and growth, and you’re up to it this time too.

That doesn’t mean you can’t curse, rage, weep and even whine a little (best done in private). It’s part of the process and can be quite satisfying. Just not too much. Move on.

For the time being at least, this is the new you.

The Big D is a moving feast. Techniques and technologies change. Fast. And what you do matters. Get to know the two laws of dialysis: For every action there is bound to be reaction, and nothing good happens quickly (but bad things can).  Too much salt, too much fluid, not enough fluid, how do I shorten my recovery time, get rid of restless legs, sleep, driving after the Big D, travel. Experiment, notice, react. Keep up to date (read and write to this blog!). Find your best operating level and keep tweaking it.

Next post: some specifics – Getting the needles in.

Hello world!

Hi there and welcome to the Big D and Me – a blog about overcoming the challenges of being on dialysis.

In my case, that’s Haemodialysis – pronounced “he-mo-dialysis”, though strangely enough, there are as many women as men dialysing (lame joke). Actually haemo- or hemo- comes from the Greek haima meaning ‘blood’ and dialysis is a chemistry term meaning the transfer of dissolved solids across a membrane. So, haemodialysis removes waste products from blood, acting as an artificial kidney.

It does this by sucking a stream of blood from a needle in a vein/artery (fistula) in my arm, circulating it through one side of a membrane while special dialysis fluid is circulated on the other side. Waste products (such as urea and creatinine that I used to pee away) diffuse through the membrane into the dialysis fluid and are discarded, and my now nice clean blood is pumped back into me via a second needle, near the first one.

Sounds complex, but so was staying in touch until the telephone arrived. Now, with the dialysis machine it’s pretty simple, at least once the blood leaves your body. However there are some human challenges:

• Getting the needles in
• Coming to terms with needing dialysis at all
• The time it takes for a clean (I look at it as a pee that takes a few hours)
• Eating and drinking
• Avoiding complications (jiggly legs, feeling washed out, cramps, etc)
• Keeping you brain up to par
• And a few others…

I have been on Big D for 14 years, off and on, and I’ve learned that regardless of changes in technologies or practices there are some fundamental actions that anyone can take to win back their life.

Over the next few weeks and months I’ll share these things with you. But this blog is a conversation, not a monologue. I want your comments and experience, so we normal people whose kidneys have let us down can make the Big D what it should be:  a restful interlude that punctuates our normal healthy life.