Dialysis: a Heartfelt Journey

Without dialysis, I would have been carried off long ago. With dialysis, I’ve been able to draw out the carrying off bit for 23 years and still counting. It’s a constantly changing situation;  one that keeps me on my toes.

That’s not to say there aren’t challenges.

As I’ve said many times here, it’s rarely the dialysis or kidney failure that kills you. It’s usually your heart, gradually weakened and damaged by the constant (and sometimes very large) changes in fluid volume it has to deal with between dialysis sessions.

Now, true to form, after my last prolonged stay in hospital in December, my heart is giving me a bit of stick. However, it’s not so much weakness as blockages in my arteries. And not by any old cholesterol plaque; oh no, my blockages are calcium, slowly deposited in my veins and arteries. This happens after years of the ongoing battle between calcium and phosphate, caused by my missing kidneys. The last doctor I saw put it succinctly; he said I have crunchy veins and arteries. Nice mental picture.

Anyway, the blockages are slowly growing, and for a range of reasons, I’m not a good candidate for either a bypass or a stent. So my heart is being managed medically, with a range of drugs designed to slow or minimise further blockages.

One of the side effects of this new, weakened heart is that I get puffed quickly, and when stressed, my heart feels a little strange. So I have my trusty Glyceryl Trinitrate (GTN) spray. A quick spray under my tongue relaxes and widens the crunchy veins and arteries in my heart and the rest of my body, making it easier for it to pump, and I’m ready for more action. I don’t use it all the time, just if I’m exerting myself, walking up hills or in the gym or trying to keep up with the grandkids when we walk to school.  

But just recently I’ve noticed a couple of new twists, that need new thinking and acting on my part.

Breathing vs Sleeping

For the last 6 months, if I’m more than about a litre overweight (say at the end of a morning dialysis day, or a full non-dialysis day), when I go to bed, I wake up around 2am gasping for air. It seems that when once my heart would brush off the effects of a litre or more, now it can’t handle it so well. During the day, instead of being distributed around my body, the extra fluid goes to my legs and at night after I’ve been horizontal for a while, to my lungs.

I mentioned it to my Cardiologist and he put me on GTN patches, to wear at night. Mostly they work a treat and I sleep like a baby.

Mostly. There are still a couple of nights, after my two days off, that I put on more than a litre, and the GTN doesn’t cope. I wake up at 2 am or 3 am out of breath. On these nights I go to the living room or the office and sit up for an hour or so until my legs fill up again. Then I go back to bed. It works pretty well, but it’s a drag.

There are a couple of things I’m trying to get back to a full night’s sleep. Firstly moving most of my dialysis times the evening, so I’ll be dry most nights and sleep well. Also, if I limit my fluid intake on my days off, to less than a litre, I should make it through those nights too. This seems to be working.

A stronger patch may be another option. I’ll talk to my cardiologist at my next appointment. It could be a simpler answer, hopefully with no extra side effects. With my current patch, when I first wake up, I feel a little weak and lightheaded and it takes me a couple of hours to get my energy back.  If I go to a stronger patch, these side effects may get worse.

Base Weight and AF

Again over the last 6 months, in what is obviously a related problem, my heart began slipping into AF (atrial fibrillation) when I was on dialysis. Like after last Wednesday’s run, I felt a little strange when I came off, but thought little of it.

When I got home and sat down, my heart jumped into AF so violently that it felt like a heart attack, and Jule and I went to the Emergency Department. After blood tests, they reassured me that it was only AF. They contacted my Cardiologist, who changed my medication to make it harder for my heart to go into AF. I spent the night in the Short Stay Unit and went home around lunchtime the next day.

Still, this was pretty scary. Rather than keeping me healthy, dialysis was giving me AF, (which can take hours or sometimes days to revert). I quickly realised that if I didn’t want to have to choose between dialysis and AF, I needed to take some action.

After experimenting, I think I have worked out why and how to stop it. It’s all about making sure I don’t strain my heart, by going too far or too fast below my base weight during the run.

It seems to happen only when I have a small amount of fluid (less than a litre) to take off. (I have been deliberately low on fluid so I could sleep at night.) When the nurse adds my drinks and washback allowance, the UF rate means that sometime during the second hour I have taken off more fluid than my base weight. This continues until the end of the session when I get my washback.

My heart doesn’t like any of this and reacts by going into AF.

So now if I’m taking off less than 1 litre, I either run in (where both lines are connected at once and I get about 300mls of extra saline before the actual dialysis/UF begins) or I add 300-plus mls of saline after the first hour and add the same amount to the UF remove, so they cancel out.

Either way, adding more fluid helps keep my weight above or near my base weight, which ensures a gentler UF and my heart is happy and unaffected.  

So now, mostly, I come off healthy, relaxed and ready to rock.

(Of course, since these problems are related. I could simply arrive with a litre or more fluid on to take off, and eliminate the AF problem, but that may make it harder to sleep at night. It’s trial and error. If I can sort out the sleeping/gasping problem – with patches or whatever – I can also solve the AF.)

It just goes to show that healthy dialysis and a trouble-free heart are the result of constant vigilance.

User Review: AliveCor Heart Monitor App

Heart attack is one of the most common reasons we BigD-ers shuffle off this mortal coil.  Not because the kidneys have anything to do with managing our heart chemically, but because without kidneys we fill up with fluid and raise our blood pressure, putting stress on what is usually a pretty reliable ticker (heart failure is often the cause of death for people who decide not to go on, or give up dialysis).  Constant fluid overloads over a long period gradually wear out hearts, they get tired and emotional and without regular maintenance, become unreliable, or worse. (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…)

Dialysis and Blood Pressure (and AF)

Without fail, we all have our blood pressure measured before, during (usually hourly) and immediately after dialysis.

Before dialysis

There are several reasons for this.  It’s taken before starting to see what effect the fluid we are carrying is having on our blood pressure.  High blood pressure is usually caused by too much fluid, so it is a good indicator for staff that we need to lose some. (more…)