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

Collections....

Well, no matter how bad things have been in the Great Insurance Wars of 2022, we have hit a new low.

Babygirl hitched a ride to my office a couple of days ago so she could walk to the dialysis center to drop of a box of, well, blood. Not the same as the last one, mind you. A whole different thing.  Or maybe it was dialysate, to make sure the water doesn't have, say, arsenic.  I don't know.

However, she spent half an hour in my office playing with her phone until it was time to go, which was how I happened to overhear The Phone Call.

I could tell that it had something to do with a bill.  After a minute I asked her to put it on speakerphone, which she gratefully did.  To be fair, I missed the caller's identity.  But he was asking for payment of $1600 toward her emergency room physician's bill from 12/31/21.  You know, the day she almost died, what, nearly 15 months ago? 

He was offering to help her set up nifty $25/month payment plan. 

At this point I took the phone.  Apparently only $455 of this bill had been paid by her insurance, so she owed the rest.

Except she DOESN'T.  She has Medicare and Medicaid.  It is illegal for them to sent her a bill for the balance, even if the balance wasn't fully covered. I pointed this out to him, strongly, and let him know I'd be checking with her insurance to see who FUBAR'd what THIS time.  (Maybe that should be DUBAR. I don't know.)

Yesterday I spent 65 minutes on hold with my insurance.  They paid in July, the $455.  They say the bill was resubmitted in September and rejected.  Well.

So I spent half an hour on the phone today with an honestly delightful representative of the ER doctor's billing office.  Turns out they NEVER call, and the bill was in collections. They had my BC/BS listed TWICE, once as BC/BS and once as SmartHealth (the biggest oxymoron in history, but it is our flavor of BC/BS, with the same exact ID#). Once the second BC/BS (same as the first, of course) rejected the bill, they failed to rebill to Medicare and Medicaid.  

She could see where I'd called before, given the correct information, and that the actual patient screen was not updated to match.  Yes, she agreed, it is not only illegal to bill her, but also illegal to send her to collections. 

"Ignore collections, we'll have it rescinded 'after a review.' "

I'm pretty sure she knew what she was talking about. Not so ducking confident about the reviewers.

DeeDee

So Much Water....

Super Bowl Sunday.  While the technologically challenged among us are still trying to figure out how to access this years' game (yeah, last year we used Peacock. This year, not so much LOL), I'm thinking back to the 2012 game.  I have no idea who played, who won, or what the best ad was.  I only know that we were finally out of the ICU, off dialysis, and on the road to what we thought would be a normal life. 

There's been a lot of water under the bridge since then.

The kidneyversary was last week.  February is full of things to remember. My grandson's birthday, a host of other family days. The anniversary of Mom's death. Remembering Jorge and his family, their loss and their gift to us. 

I still, more than a year after the loss of the kidney, can't think about that day like I did the previous 9 years.  

And yet, that gift, however temporary, DID buy us a more normal life. Beach trips, hiking, camping, Complete freedom from the dialysis machines. Every moment of freedom, every unconscious lack of worry, ALL of it, from that gift given at great cost.  

I remain incredibly grateful, endlessly grateful for all of those gifts.  None of the struggles of those years outweigh that gift. 

Gratitude remains the best defense against that ducking squirrel.

DeeDee.

Letting Her Grow Up.......

 Babygirl is 23.  

At 23, I had 2 college degrees, and had been working in cancer research for 2 years, actively prepping for medical school.  The sickest I had ever been my life was a case of strep throat in 5th grade, and the Russian Flu in my sophomore year. I almost never missed school. 

I have no real way to relate to her life. She's missed YEARS of school. She can't see well enough to learn to drive. She's tied to a dialysis machine at home for 4-5 hours 4 days a week, unless some frustrating SNAFU happens that makes her have to start the hour-long set up over, or delay for another day (which makes her feel like crap since she has to let all the toxins build up in her system for an extra day). 

I've been her mom since she was 2. I've been her support system since she was 11. 

I've been quietly trying to let her take on as much of own her care as has been appropriate at any given time.  She's been in charge of sorting her medications forever. She  takes care of ordering her medications, mostly. I'm no longer able to access her medical portal. She communicates with them on her own (I confess I miss the access. I have to search my soul and admit that perhaps I miss the control). 

Letting go of the details is extremely difficult for me. So when the details fall behind, like late refills and, well, unmailed blood, I want to snatch it all back and make her 11 again. Because if I do, then....what exactly?

This is one more run of magical thinking.  This entire last year has been...challenging. Difficult. Horrible. Exhausting.  And the squirrel that runs rampant inside my head periodically stops and yells at me about how I should have somehow prevented the transplant failure.  Paid better attention. Noticed how quickly she was getting sick. Ridden in on some kind of ducking flying carpet and kept us from landing in this quagmire. 

Two good friends have died of kidney disease in the last few months, and a third has had a kidney transplant. Of the ones who died, one opted to not do dialysis. One opted to do it.  The one who had the transplant is struggling through the horrors of the first year:  Infections, hair loss, fatigue. Granted, these astonishing women were/are all older than me, each bravely fighting kidney disease in her own way. And ultimately, advanced age notwithstanding, proved that this disease is the biggest bitch there is. 

In the end, nothing I do is going to win this. She's the fighter.  In all this time, she's done whatever she needed to do and complained damn little about it - certainly far less than I have, and do.  But....in the end....

Nothing SHE does is going to win this either. Life expectancy for a 30 year old with end stage renal disease on dialysis is about 15 years. Successful live donor transplant lasts about 25 years, and as we know, deceased donor transplants 10-15 years, typically. Clearly, statistics do not apply to individuals. Even more clearly, I have no access to a crystal ball. 

Borrowing trouble before it's due is as pernicious as magical thinking. In either case, I'm making myself anxious and crazy to no avail. Taking note of this does not, in any way, kill the ducking squirrel. 

DeeDee

Boxes of Blood.....

There is already a post about this.  But this is a different box.

Babygirl is supposed to draw her own blood during dialysis to follow her potassium and phosphorus levels, among other things. She is supposed to draw additional specimens to send to Rochester.  This has to be done every month, and the tubes are supposed to get boxed and FedEx'd to the tissue typing lab. Every. Month.

Without those samples they can't crossmatch her tissues and antibodies to an incoming kidney to confirm a match.  So if the blood isn't available, she could miss opportunities for transplant.

I really can't recall the last time we were in Rochester, but that is the last time that one of these specimens went to the lab. It's been.....months.

It isn't that Babygirl hasn't tried.  Our local hospital used to do this when she was listed at CHOP.  And CHOP (have I said how much I MISS CHOP??) provided us with a labeled mailing box for the hospital to use, along with an appropriately coded order.

All of that is missing. We have boxes, with no labels for the blood tubes and no mailing labels. The first order wasn't signed by her provider. Now we have a signed order but no codes. 

We got as far as having the blood tubes, hand labeled with Babygirl's name and date of birth. No order was needed as she drew it herself.  Per the new instructions from the dialysis team, we drove to the local FedEx office. 

This is the story they told us:  "We can't take that here because of the warning on the bottom." It is clearly labeled as a biologic specimen.  According to them, people at the store "lack the necessary training to handle that." They also would not print a label for it so we could put it in a drop box (which is apparently emptied by people who have the "necessary training"?). Not one word of that made any sense to me.

They told us to go online and get a label, email it to them, and then they would print it for us. We already travelled from our town to the next one over. So they want us to go BACK home, email them, and go BACK to them, and then back home?  

I went online. One full frustrating hour later (much of it spent trying to find a contact number and go through the endless "if A/press B" menus to get to an actual person), I finally downloaded a file for the label and emailed it to MYSELF so I can print it at the office and get the sucker mailed. Then I can stuff it into a drop box, which is thankfully located in my own neighborhood.

All home improvement projects have what I call a "swearing and screaming phase." Keeping your kid on the transplant list by mailing 2 tubes of blood to her hospital should NOT have that phase, but I'll admit that there was crying in addition. 

Just....why?

DeeDee

Did You Remember....

"Did you remember to bring the box for the blood?" "I don't think we need it."

I'm sure that every family with chronically ill members say things that sound, well, peculiar in other settings. 

Today Babygirl and I left the house for the first time in over a week.  I'd have stayed in, but until Babygirl learns to drive, options are limited. She has to draw her own blood periodically before and after dialysis (okay, peculiar statement #2). We have a centrifuge to process this, and then it goes into the fridge until we can get it to a lab. She drew the blood yesterday after 5.  We had 5 tubes of blood in a cup on the top shelf for about 20 hours, until we finally worked up the energy to leave (I mean, changing into cleaner pajamas seemed important even if I wasn't getting out of the car). 

The cup went out the door in Babygirl's hand.  The mailer box remained on the table.  I grabbed it, and made her take it into the lab with her. She came back without it, so I assume I was correct about the box.

All beside the point. There is so much of this stuff. SO much. 

DeeDee