My wife’s kidneys failed when she was a teenager, and therefore she was getting hemodialysis for a good part of her life. The kidneys filter the blood to remove excess fluid and a wide variety of toxins. Hemodialysis replicates some of the kidney’s function when a person’s kidneys fail. In hemodialysis, your blood is cycled through an artificial kidney, which means that you have blood taken out, cleaned, and returned back in. Therefore, at any given time during treatment you have about half a liter of blood in tubes, outside of the body.
Access to the blood usually comes in two ways: via a chest catheter, or via needles. The needles are inserted into a surgically prepared fistula, which is a vein looped back into an artery. The blood is taken from the arterial side, cleaned, and returned back via the veinous side. The blood is cycled through over a period of hours, and during a dialysis treatment, quite a lot of fluid is removed from the body, anywhere from one to four liters, sometimes more. A person on dialysis loses anywhere from two to ten pounds during treatment.
A person on dialysis (my wife liked the term “dialyser” instead of “dialysis patient”) has this done anywhere from three to six times per week, for as many as four to eight hours per treatment. Usually, things go well. But, when you do anything at least one hundred fifty times per year, things sometimes happen. And when things happen on dialysis, they usually involve blood.
People don’t like seeing blood. They especially don’t like seeing blood on themselves. Some people faint when they see it, some people get queasy. If they cut a finger, or get a bloody nose, the blood-soaked bandage or rag or towel can freak them out. Blood is not an everyday event for most people.
That’s not true with dialysis people. Dialysis in a way is like controlled bleeding – you bleed into a tube, and you get it back. So, every single treatment they are seeing their blood in a tube. And when they are done, there’s at least a little blood when they pull their needles. Because the needles have direct access to the bloodstream, they have to hold the bandages against their access points for a good five to ten minutes just to ensure they don’t bleed out. Then they tape up a bandage and it stays there for a few hours.
When anomalies happen, they can be quite dramatic. And by dramatic, I mean lots of blood. They are dramatic, but as dialysers and their support people find out pretty quickly, dramatic doesn’t usually mean dangerous. Not usually.
My wife started home hemodialysis in 2008, and I trained to be her caregiver. As a caregiver, my job was to support her, to help set up the machine, to monitor progress, to help her start and end treatment, and to aid in emergency situations. Jenny was a pro at this. By the time we started dialysis at home, she had already had about fifteen years of hemodialysis experience. I wasn’t such a pro.
Most of the time things went well, but there were a few times when things went hairy. One time I was downstairs when Jenny was running, and my son ran to me screaming “Mommy needs you, she’s bleeding!” When I got to the room, there was a lot of blood, and Jenny had a bloody towel jammed on her arm, and it was soaking through and dripping, and she couldn’t get to new towels to put on top. I was freaked. She was not – she was cussing pissed.
“Get those paper towels. Put them over this. Help me press down. Harder!” And then, she was fine. The bleeding stopped, we swapped out the bloody mess with clean bandages. And there was blood on the carpet, on the chair, on her clothes. I still have the chair, and there are still blood stains on it. Not big ones – but they are there. She lost about a pint of blood all told, which is doable, but when it is spread all over, it’s dramatic!
Jenny put her own needles in. The process is to push a needle into the access point – the fistula – and you know you have it right when blood pops into the attached tube. You then let the tube fill, attach a syringe with saline, get rid of the air, and then push the saline into the tube. Then, do all this again with the second needle. The dialysis lines are later attached to the tubes.
One time Jenny developed an aneurysm, a bubble-like swelling, on the blood vessel in her fistula. As a result, she’d have to push through the aneurysm to get into the actual fistula properly. The aneurysm made it difficult to find the real vein. The result was that the access would gush blood from the aneurysm as she was poking the needle in trying to find the right access. As usual, she was all business. My God she was brave! I admit to being flustered, but for her, she had no choice. It was dialyze or die, and in this case the hospital was not an option. So, blood was pouring out as she stuck herself. My job was to keep the blood from dripping and to quickly put bandages on it when she found the vein. And to swap out bandages during treatment, because the aneurysm didn’t quite fully stop bleeding until after the treatment was done – several hours. This is obviously unsustainable, and yes we did indeed take a trip to her vascular surgeon to get it fixed up.
You go onto dialysis when you lose your kidney function. But really, dialysis is not about kidneys, it is about blood. It is about what the kidneys do, which is to clean the blood. Everything you do in dialysis is about your blood; it’s never about your kidneys. As a result, blood is the key component of daily life in dialysis. People on hemodialysis get used to blood. If they see some blood oozing from an access, they don’t freak out, they just deal with it. If a needle pops out, it’s not good, but, you deal with it. You can’t stand there getting queazy when blood is dripping down because that is what is dangerous: freaking out.
This post was prompted because someone posted a picture of one of their bleeding incidents on Facebook, complete with spilled blood and soaked bandage, and when I saw it, I thought “what a dialysis picture!” On any other forum, there would have been cries for deletion, for violation of rules, etc., but for dialysis people, it was a picture of something that happens all the time.
And then a few days later, someone else posted that someone in their dialysis unit died during treatment because their access was covered with a blanket and no one noticed the venous needle dislodged and that the patient had bled out. That made me extremely sad, and angry, because dialysis is hard enough without having to worry about bleeding out. But that worry is the price of the life dialysis gives.
The functions the kidneys provide are not meant to be exposed. The kidneys are located deep in your body and are not easily accessed. You have two kidneys: in technology terms, it’s a redundant system. You can live on 10% to 15% of your total kidney function. When you lose your kidneys, you are replacing that nice and protected functioning with pulling the blood out of the body and into the room. You are going from a safe situation over to one which has serious risks. It’s no wonder that events will happen, and it’s no wonder that people will get inured to them. People on dialysis are in a similar situation to soldiers at war. Their lives are constantly on the line. For dialysis people, they are in that situation for years, many times for the rest of their lives. The term “dialysis warrior” is used a lot in the dialysis forums, and indeed they are warriors, except the enemy is not an external force, but the failure of their own body.
And as in war, blood plays a big part, to the point where a pint of blood soaking the carpet is not that big a deal in the overall scheme of things. She was alive! And no little blood spill was going to change that.
So informative. Well documented. Written. My heart cannot comprehend your lives. Then and now. And I know the ♥️ That certainly propelled your family. Bless you and keep your memories alive. Thank you for sharing.