Good Training

It is really important to strive to get the most out of your training to perform haemodialysis as much as possible. I think nearly every home haemo patient does most of their routine automatically but it's when there's a problem that the quality of the training comes through. I had an experience recently that reminded me of this.

I had my anticoagulant regime changed after a serious bout of clotting. I now use Fragmin and administer it similarly to Heparin, that is, a syringe made up to the correct concentration in the heparin pump and then dispensed via a loading dose and then progressively throughout my treatment. It had been working really well until yesterday.

Yesterday the heparin pump alarm started beeping every ten minutes. At first I stared at the damn thing like a kangaroo trapped in headlights. Swirling through my mind were all sorts of thoughts and feelings. Did I do something wrong? Am I in danger? What do I do now? Am I imagining this? After shaking my head like Wile E. Coyote after an Acme anvil landed on his head, I realised it was happening and I needed to do something. That's when the training kicked in.

Look at the messages. What are they? Two messages, "Err" (Error) and "Heparin Pump Alarm". Look at the lines. Are they kinked?  No, but the blood looks a bit dark. Look at the clamps. Are the ones that are meant to open opened and vice versa? No.

Aha. Blood looking dark. Maybe the Fragmin isn't getting into the circuits. So I test whether the flow is getting through. I start it up again and there seems to be blood in the fine line from the heparin syringe to the main dialysis line. Blood will only go in there if there is no pressure pushing it out. Suggests something about the pump not working. After ten minutes I get the same alarm. So I call the after hours nurse. I tell her all that I have found and she suggests resetting the pump and trying again. Sadly, the alarm goes off ten minutes later so I had to disconnect from the machine. Alternative arrangements for me are being looked into.

So the training about looking at problems and working through them helps. It doesn't always cure a problem; it didn't this time, but in many other cases it works well. And another thing, so many times it's a kinked line or a clamp not being open or closed as needed. 

Pay attention to your trainer and work on the problem solving with them. You will feel dumb as an ox, as I did, until that golden "Aha!" moment when you get what they've been talking about and you can't understand how you never understood before because now it's so simple.

A bloody bad year

First, let me apologise for the scanty postings I have made to this blog. This reflects a bad year in my life and a bloody bad year for my haemodialysis. In March I had to put my mother in a nursing home. She had been at home with my father and her health needs were well beyond his capacity to handle. She was going downhill fast. Now my mum is getting professional and appropriate care and she has improved markedly. Adjusting to this new situation has been stressful for all my family members. My sympathy to all those of you who have gone through this experience, including those in nursing homes. My father has deteriorated badly. He forgets things immediately and gets stressed about it. Providing support to both my parents has been taxing. Added to that I have developed cataracts and have zero eyesight out of one eye. I am avoiding driving (doctor told me I wouldn't be covered by insurance) so have become dependent on the kindness of my family to get me around. All this has impacted my dialysis.

I had been dialysing five times a week at the beginning of the year. This dropped to three times a year as the weight of the problems I was facing got the better of me. Worse, the more frequent longer breaks between treatments lead to larger fluid gains which placed an unnecessary load on my heart. No problems yet but touch wood. I could have gone back to dialysing five times a week but my blood started clotting badly, mainly in the venous bubble chamber but also in the dialyzer. I was losing so much blood from clotting that I required weekly iron infusions. So on one hand I would get better results from dialysing five times a week but on the other hand I would become more anaemic as I clotted with each treatment.

Fortunately my anticoagulant agent could be changed. I am intolerant to Heparin so had been using Clexane. My specialist changed me over to Fragmin which unlike Clexane is not administered as a bolus at the beginning of dialysis but rather through the same regime as Heparin; progressively throughout the treatment via the Heparin pump. This has given me great results: the dialyzer is so clean that I joked with my renal nurses that I could recycle it, and the venous bubble chamber is always perfectly free of clotting or "collars". With a reduced loss of blood after each treatment I am feeling better. Now I am at the stage of going back to five treatments a week.

The main thing I learnt through this year? Talk. Always talk. Tell the nurses if you are blue. Tell them about problems. Also tell them about things that work. I just find talking to my renal support team is absolutely critical to getting the most out of my dialysis experience. Don't be scared that the question you have may be stupid; they will be glad to answer it, if they can. Even though my renal team only provided support for my dialysis needs they helped me through a difficult year in my life. Thanks to them. And I hope you will start talking with your team as well.

Needling

There are two techniques for doing needling: rope and ladder or buttonhole. Rope and ladder means you use different sites progressing up and down a "ladder" on your limb. A buttonhole is a permanently used hole that you open up every time you dialyse. You scratch the scab off and put the needle in. That sounds revolting.

I do buttonholing. At first, like most people, I thought it was disgusting but then I relaxed. Here's why. It reminded me of when I was a kid and had a graze or cut. A few days afterwards the idea of picking at the scab was irresistible. It was strange how picking at the scab never hurt and how satisfying it felt. By tapping into this "scabby knee" recollection I easily overcame whatever revulsion I felt and buttonholed easily. I recommend this little mental trick to you.

A Checkered Life

If there is a maxim that I use for HD it is this:

I know I just checked my setup. NOW CHECK AGAIN.I don't remember if I checked my setup. NOW CHECK AGAIN.

Checking HD lines is what saves you from causing real problems for yourself if you're doing HD. Setting up the machine and the bloodlines takes about an hour and is very complex. My hunch that you perform about a thousand separate physical actions in this setting up. I can't remember a thousands things, can you? That's why you need to take every opportunity to check what you've done. It's funny how you can get a sense of knowing something is wrong but you can't put your finger on it. Checking will help you identify what it is that's causing that nagging feeling and allow you to fix it.

Last night I set up my machine and had some spare moments. I just sat staring at it in general. It was then, after gazing at it for about a minute I realised I hadn't placed a hypo full of anticoagulant in the place where I grab it after an hour of treatment. Seems minor but if it wasn't in the right place I would be squirming all over my bed praying that the cap doesn't come off and the hypo stab me. I put things right and last night's session went smoothly.

If you're doing HD then you've been trained in the process in a group of people that are skilled in training HD patients. It's the habits you have to learn and checking is one of them. Check you later.

The First Time

Despite all the preparation, all the support, there is no way to be really ready for the first time you receive HD. It's a bit like travelling on a plane for the first time: you know what to expect, you've spoken to others but none of that prepares you for the feeling when the big jet starts hurtling down the runway then tilts toward the sky. At that moment of take off there is one thought - I have no control over this.

No Control

That is the overwhelming feeling at the time of my first HD. I felt like a bag of meat and blood in a seat with a swarm of nurses prepping me. They told me things but my level of anxiety was too high to take things in. It was just a case of go with the flow. And there was flow. The blood.

Blood

My fistula was virgin. A tender little tube of thrilling blood waiting to be taken advantage of. They say the first time is painful. Well it wasn't. The first local anaesthetic was painful. Why are locals so bloody painful? It was more painful because of the stressed state I was in. And then all that stuff about a virgin bleeds came true. The nurses didn't know my veins. No-one did at that stage. The needling was an educated hit and miss. A lot of blood. More than I had ever seen from a cut in my life. Then it settled. Nurses watched me and the machine and checked constantly.

The Session

It was a short session. I can't remember if it was one, two or three hours but I recall that the nurses told me they always kept the first few sessions short so that people get used to HD. A nurse sat beside me the whole time the first time and tried to keep me relaxed.

Have you ever found yourself in a serious, life-threatening situation where you cope by using gallows humour? That's how I got through that first session. I can't remember any conversation just the feeling that I thought this was my life and it was being determined by a thin tube leading out of me and thin tube leading back to me and all that was in between was a box of stuff made by bored factory workers on the other side of the world.

What can I say?

When you start dialysis it's a personal milestone that no-one else can pass for you. No amount of description, preparation or support will make it completely knowable for you. It's a trip we each have to do alone, but in company, if you know what I mean.

Once you pass that milestone you really are on a new and special journey. And I want to talk about that another time.

Hello

This is just a simple intro to what I hope will be a series of occasional posts about my experience of nocturnal home haemodialysis. I have been receiving haemodialysis (HD) for nine years now and started on home HD four years ago. I live in a suburb of the north west of the city of Brisbane, Australia and am supported by the HIDS unit of the Royal Brisbane and Women's Hospital.

As intros go this is decidedly boring. It's the weather. After a week of glorious sunshine cold, heavy squally showers have come belting across my house and my mood. The only people not upset by this miserable and unwelcome weather are the scrub turkeys, one of which is browsing in the garden outside my window as I type.The purpose of these birds is a mystery. They are less use than a wi-fi sausage. Then again, I suppose humans are pretty pointless too.

Before I go I will tell you this: I do not have a name for my HD machine. In all the HD centres I've been to each machine is named. The names are witty or meaningful or deliberately cryptic. Mine's just "the machine" or after a bad run "that bloody machine". I would not want to share a bedroom with a device called "Miss Muffet" or "Mephistopheles". There's only room for one named thing in my room, that's me.

And that's all for now. Til next time. Bye.