No Pressure....

 I'm pretty sure that most of you are already aware that dialysis is not a fun game.  But in case you weren't completely convinced of this:

Part of homeostasis is the management of blood pressure.  Normal is a range, with 120/70 typically being a happy number.   My dad's pressure typically ran 90/50ish, and it never bothered him at all (although given the number of times he traumatized his body with power tools, this blood pressure frequently traumatized his ER team). I often tell patients that there is no such thing as blood pressure that is too low unless it is causing symptoms. 

High blood pressure is one of the top three reasons that people end up on dialysis.  Keeping blood pressure under control is a huge part of the dialysis regimen. Abnormally (symptomatic) low blood pressure is typically triggered by blood loss, dehydration, other fluid shifts or autonomic dysfunction (a sadly increasingly common issue in Long Covid patients). 

Dialysis is all about shifting fluids and electrolytes from on place to another.  So symptomatic hypotension (low pressure) is a common occurrence. When hemodialysis is being done at a center, there are people there to immediately respond to this issue. They can add fluid, or reposition the patient to improve the pressure issues. 

Oh, yes.  And hypotension symptoms? Sweating. Nausea. Loss of consciousness (syncope is the fancy medical term for fainting). 

Babygirl is doing her hemodialysis at home, unsupervised and frequently alone. Hypotension is an issue for her on a fairly regular basis. Her chair is designed with a bar above her head that can be grabbed as soon as symptoms appear.  Pulling the bar immediately tips the chair into Trendelenburg position - rapidly taking her from sitting in a normal recliner to almost upside down. Usually this is followed by about 10 minutes of retching and vomiting as her system struggles to pull out of the hypotension. 

Whild all this is going on she is supposed to decide whether to add additional fluid (which is, of course, not preferred when you are in the process of mechanically REMOVING the excess fluid from your body, or whether to terminate dialysis early (also not preferred for obvious reasons), or whether to just ride it out. This brings up the question: How long should you hover on the brink of consciousness trying to make this type of decision?

Thus far she has not lost consciousness during any of these episodes.  She has had to terminate her sessions early a few times, usually 30-45 minutes off of a four-hour session, which means that she has lost about 15% of the time needed to clean toxins out of her blood. 

And to add a bit of heart-stopping silliness to this entire story, Babygirl is SHORT.  Her chair is a one-size-fits-most contraption. That bar she has to grab to go upside down has got to be grabbed AGAIN to get her right side up.  The challenge is to reach above your head to the BACK of the chair, grab the bar with ONE hand (since the other has needles sticking out of your arteries), pull the bar and attempt a sit-up WITH YOUR ARM ABOVE YOUR HEAD from a head-down-toes-up position. The leverage is all wrong for her body size, and she ends up staying upside down longer than she needs to, and from that position she cannot easily reach the buttons that allow her to power down the machine. She looks a bit like a hooked fish during this process. I've been there to rescue her a few times, but I'm not always home.

This situation terrifies me more than a little. 

I've given it some thought.  I'm working on adding a strap to the bar so she can pull it from the front of the chair. This means that she will have to be mindful to place the strap within reach before she sets up.

We'll see how it goes.

DeeDee

It's a Fine Balance.....

Homeostasis.  

It's the balancing act your body does every minute of the day to keep you alive, basically the baseline status quo.  

Acid/base balance. Potassium/sodium/calcium levels. Hormone regulation.

And fluids.  To maintain "status quo" the amount of fluid IN must equal the amount of fluid OUT. Everybody understands the "fluid in" part.  The "fluid out" is more complicated.  

Fluids exit the body in two ways:

1) Sensible losses.  This is the "out" that you are aware of, like urine, tears, and sweat.

2) Insensible losses. This is the "out" that you generally don't notice, like exhaling, bowel movements and, well, sweat. 

Insensible losses can dramatically increase with acute illness. Coughing blows an entire lungful of water out. Fever increases respiratory rate to do the same. 

All of the other balances are similar, and much of homeostasis is managed by the kidneys. 

Babygirl has been fortunate in a way.  Her native kidneys produced a lot of urine despite their failure, and Jorge's kidney has been continuing to get rid of water and potassium. Before her first transplant, we had to collect a 24 hour urine sample.  Her bottle was nearly full, but the other kids, barely any.  The difference this makes in terms of quality of life is dramatic.  REALLY dramatic.  Imagine being allowed only 2 cups of liquid a day, or less. Imagine trying to figure out if you are sweating enough to justify a few extra sips of water on a hot day. Imagine that you always need to remember that fruit, veggies, and other foods have variable water content that have to be considered in the fluid balance.

A gallon of water weighs 8 pounds.  Imagine THAT settling into your legs and feet because your kidneys are not getting rid of any of what you take in. Many if not most of the people on dialysis do not urinate AT ALL. 

Babygirl is VERY self-aware. And she is VERY careful.  She recently found a cute little pink mug at the thrift store.  It took me a while to realize that it wasn't the cute part or the pink part that attracted her to it. It was the "little" part.  It's easier for her to go easy on the fluids if she has smaller servings, smaller containers. 

She did a 24 hour collection recently.  I noticed that the amount of fluid isn't what it was a year ago, perhaps down by half. I've noticed she hasn't been running to the bathroom as often while we are out-and-about. This gradual decline in what remains of the transplanted kidney's function will ultimately have a big impact on her quality of life. 

Fortunately, home dialysis can be done every day if needed to get the retained fluid out.  Unfortunately, home dialysis takes an hour for set up/clean up and 4 hours to run. Add in 1-2 hours a week to move heavy supplies in, and sort things out. Patients on home hemodialysis need to stay awake the entire time, so unlike peritoneal dialysis, one cannot sleep through it. Babygirl looked at me the other day and said, "This feels like a full time job."

Five hours daily at 4 days a week currently? Grimly time consuming but not quite full time.  Add three additional days and it will be.

DeeDee