Basic text. Black on white.
Sometimes things are that simple. Sometimes they aren’t.
I’ve complained here before about medical stuff. The summary: I leak, at the tissue level.
My lungs leak: I mean here respiratory mucosa generally and lungs specifically. Allergens enter that shouldn’t be able to. My lungs are so sticky, I have never been able to breathe through a face covering, and they are so sticky, when I got my third lifetime CPAP machine last year (note: I use them until they die, and was first diagnosed with sleep apnea in the late 1990s), I had to bump the pressure up to 17 cmH2O until I could breathe, and when I put it that high and laid down, I actually felt my right lung reinflate. It was the weirdest sensation ever.
My gut leaks: I have gotten increasingly intolerant to some foods. It’s like the gut lining is supposed to be wall to wall post offices, that package nutrients and send them off for processing. But with the leaking, stuff gets tossed unpackaged into alleys between the post offices, which is then inspected by the immune system and sometimes declared hostile. And while at first the immune police see, say, bright blue boots, and attack when you eat them until you stop, maybe next it’s pink pillows. Then you stop eating “that” and then the “police” attack yellow canaries. And so on until your diet is limited to what you can eat safely without your immune system reminding you how much doesn’t make it into the “system” packaged and processed properly.
My endometrium: Menometrorrhagia wasn’t fun. Postmenopausal bleeding and oozing isn’t fun either, and if I survive the next days, we’re already talking about hysterectomy. Problem is my alternate anatomy, my ectopic urethra coming out the left vaginal side wall, and my overall poor condition because… I leak. It didn’t help that 25 years ago when my son was born (happy birthday, love), my cervix tore, which means it’s mostly scarred over now, and when they tried to do a D&C and get the endometrium out to examine, they couldn’t. They could barely sample it.
Which brings us to vascular leaking.
Oh, the tales I could tell. Dependent edema from a young age, legs looking like melted candles after shifts on register (Bradlees department store, summers when I was in college, only allowed because I argued I needed to earn money for books). Sudden drastic increase in the left leg in November 1998, which led to me being taken off all my medications including the hormone pills that kept the menorrhagia in check for fear of blood clots. Pregnancy in the summer of 1999, childbirth in 2000. Increasing problems with edema until the hospitalization in December 2014 with cellulitis in the left leg, with hospitalization again in February 2017 for the same damn thing. Wound Care screwing me up further. I still say had they left the toes alone instead of removing the naturally formed hard compressing caps, my first and second toes on the left wouldn’t look so grotesque. But maybe that was a blessing because those toes and the scarring on the leg helped my disability case in 2016.
But suspiciously, even before that, when I was in med school. The bouts of dizziness, the fatigue, the cloudy mind that led to the Neuro residents clinic doing a thorough workup including a head MRI so normal that a radiologist who never ever used the word “normal” used it for mine (a surprise since I have known inner ear damage from childhood infections that still affects my balance – another evidence of things leaking where they shouldn’t have been able to go, even when I was very young). The problems even when I was still working in house at the hospital because blood and fluid would pool and my head never seemed to get enough… something. Oxygen? Flow? Getting up and walking around wasn’t ever quite enough to clear my head. Walking to Outpatient Surgery with H&Ps for the next day – back in the days before Y2K when we did stuff manually – and still feeling (and probably looking) like a zombie.
My body tried. It really did. I got diagnosed with high blood pressure early and put on medications. And more medications. Because my body tried so very hard to keep fluid in the vessels, and the first thing it tried was clamping down. But medicine stopped that. Then it tried the renin-angiotensin signaling system, and another hypertension med shut that down too. I was already dealing with pain from arthritis and the disaster that happened when we tried to put me on steroids for asthma. We discovered that the steroids may have told the “local police” in the immune system to stop being so sensitive and triggering, but that just meant the “armed forces” and the “nuclear weapons” were brought into play, and I was having allergic reactions to just about everything, even though we had PAs saying it was “impossible”…
How many meds am I on at this point? Three for blood pressure alone, tackling three different systems. Two for pain, one an opioid and one that helps keep the opioid in my system longer because I metabolize things far too quickly. Side effect of being a redhead, likely – we have the genes for it, unfortunately. One for my gut, because when unmedicated I have bad esophageal reflux. One mild antiinflammatory to try to calm my joints down since I can’t tolerate most of the “really good ones”. That was seven. The eighth was a high dose progesterone to try to tell my postmenopausal endometrium to cut it out and get its act together, which only worked somewhat (measured from 19 mm down to 12 mm when postmenopausal endometrial stripe is supposed to be only a few millimeters thick at most).
It’s the ninth one likely to kill me.
So where were we? Trying to keep intravascular volume with a body determined to try every trick in the stinking book to do it while medicines stop it.
There is an important concept here: Oncotic pressure. If you have a vessel and put water in both sides, put a semipermeable membrane in it to divide it into two compartments, and then add “stuff” to one side, water will flow from the side with less “stuff” to the side with more “stuff” to equal out the “pressure” exerted by the presence of the “stuff”. Like, say, add some salt – the salt side will eventually equilibrate with more total fluid in it than the non-salt side.
So what does a desperate body do to try to pull fluid volume back into a leaking intravascular space? Increase oncotic pressure. Keep in mind here that I don’t have lymph return – I have potential spaces where lymph vessels ought to be. It’s part of the reason why the edema never really resolves. So you have all this leaked fluid that has zero motivation to return to the intravascular space for recirculation, and the body tries to make the intravascular space an oncotically desirable place to be. First it tried messing with the cholesterol/triglyceride system. I never got medicated for that, but as my desire for food has lessened over the years, my lipids have sort of evened out in a place where they don’t deem it necessary to intervene. But pushing more “stuff” into the vessels that way wasn’t sufficient to bring fluid in/back.
As an aside, regarding diet: I only eat two meals a day, breakfast and dinner. Breakfast happens at the end of my “day” in the morning before I go to bed, and when my husband is here, consists of three scrambled eggs with shredded cheddar cheese and cut up lunchmeat ham, plus three strips of bacon. I’m on team bendy, not team crispy, by the way. Suppers vary but are from a more or less range of “safe” things like spaghetti with meat sauce, burgers, sauteed vegetables, alfredo, and a weekend two-day meal that varies from broccoli/cheese/tomato/ham casserole, some kind of beef or pork roast, tenderloin, whatever is cheap at the supermarket that week usually, and a veggie side. I’m not much of a starch person, so I don’t go for potatoes usually unless it’s mashed potatoes from the box (because most of the allergenic stuff that upsets my gut is removed in the processing process). I will sometimes have a snack in the midpoint of the night when I’m awake – lately it’s been my doctor-ordered “piece of fruit” which I interpret to be at least a serving big enough to rival an apple or banana, but has been either sugar-free cup fruit or cut fruit from the produce section. Plus a Little Debbie Fancy Cakes pair, because it’s a peace treaty with my gut flora: I give it something and in return I don’t stay nauseous 24/7. That and drinking classic/regular Coke keeps me from throwing up all the time.
Ah, yes. My body trying to push more “stuff” into the vessels. The potassium leaving is either following the fluid leaving or encouraging it to leave, but that’s a chicken and egg question at this point. Just know that my potassium tends chronically borderline to low, and boosting it temporarily before procedures does nothing to stop the main process going on, i.e. the leaking.
Then my body has tried making more and smaller blood cells. This phenomenon is common in dehydration and is sometimes actually called anemia of dehydration. Yes, dehydration – despite how fluid-overloaded I am, I am also technically clinically dehydrated because my intravascular volume is chronically low, because I leak. Always comes back to that. I leak.
In even greater desperation, running out of tricks to pull out of its metaphorical bag, my body has resorted to releasing glucose in an attempt to attract fluid back into my blood vessels and regain/ensure perfusion of vital organs. You can see where this is going, I bet – yeeeeep, I’ve now earned a diagnosis of non-insulin dependent diabetes on top of everything else. Last A1C was over 8, which under normal circumstances would definitely meet one criterion…
…except, Houston, we have a problem.
A note about pathophysiology is important here. The normal person with diabetes has as lock and key problem: Cellular locks require hormonal keys, in this case insulin, to unlock and allow passage, in this case of glucose into the cells. In type 1/”juvenile onset” (though there ARE adults who get this also) diabetes, there is a loss of “key manufacture”. The islets of Langerhans in the pancreas produce insulin, but if the factories shut down, you need exogenous insulin to go in and do the job. In the meanwhile, glucose “backs up” in the system, and (more importantly) begins to “sugar coat” things that shouldn’t be sugar-coated, in the process ruining their function. The answer is to give the system more cellular “keys”.
In type 2/”adult onset”/non-insulin dependent diabetes, there is a key-lock mismatch. The keys aren’t formed correctly, or the locks warp, and it becomes more difficult for the cells to intake glucose. It’s as if there were a 100-unit apartment building, and suddenly one by one the tenants’ keys stopped letting them in to their units, and they’re all sitting outside with their groceries, unable to put them away. Then the perishables start melting and spoiling, and soon the environs around the building are drawing pests and bugs and animals because the groceries aren’t making it into the units because the tenants can’t unlock their doors, and there aren’t enough locksmiths to keep replacing the locks with ones that work. By the time you get to most of the tenants’s keys failing, you need exogenous skeleton keys (aka insulin) to force entry.
Either way, type 1 or type 2, common symptoms are the same: Excessive hunger, as the body’s cells shout out for either the tenants or Uber Eats or just Emergency Services to bring-them-some-glucose-NOW; excessive thirst, as normal people’s vessels being flooded with sugar makes them pseudo-dehydrated, and the thirst centers are triggered; sluggish feeling and foggy mind, as things start “sugar-coating” that shouldn’t; excessive urination, as the kidneys desperately try to offload the extra “stuff” that shouldn’t be there in the circulation, including spilling sugar and ketones in the urine; and a higher risk of infection as invaders see the extra nutrition just lying around for “anyone” to take as being too much to pass up.
Except I don’t have most of those. If anything I eat even less now than before, I only experience moderate thirst because I’m so fluid-overloaded, and if anything I urinate less than most people because what is coming to the kidneys is so “dehydrated”, the kidneys would stop peeing anything at all if I didn’t have the hydrochlorothiazide explicitly demanding them to in order to offload waste. The foggy brain from low perfusion of my central nervous system long predates the misguided attempt to offload sugar into the circulation, and so does the infection in the edema fluid.
Which brings us to why I’m making this summary post to begin with.
I was prescribed metformin. Now, there are lots of classes of antidiabetic meds with different mechanisms of action, and while my doctor wanted to try Farxiga, one that works by giving the kidneys standing marching orders to offload the sugar in the system, it’s a second line med, which means insurance won’t cover it unless you “fail” a first line med first. Metformin works by telling the liver to stop sending sugar into the bloodstream…
A note about how the liver works. Remember those packages that get sent from the gut post offices through the circulation? The liver is a big factory that not only makes bile and some of the enzymes required to digest food (the pancreas is a big contributor to most of those btw), it also takes “big” molecules like starch and breaks them down into “little” molecules like glucose. That’s part of why when you eat “high glycemic foods” you get a sugar boost/high, because they require little to no processing to make the energy available, while when you eat “low glycemic foods” you get a more sustained energy level, because the liver is working hard to take those “big” molecules and break them down and repackage them to be sent out as energy supply to the rest of the body.
Another aside: Go check out the manga/anime “Cells At Work” if you haven’t. It’s good. They depict this transport of oxygen and nutrients by the blood as the humanoid “cells” carrying oxygen canisters (which they actually do via hemoglobin) and baskets of food (which the red cells really don’t do directly, but hey let’s go with the imagery) to cells stationed in the rest of the body.
Back to the liver. The liver is both a factory and a storehouse. The factory side is processing what you eat into smaller units the cells can actually directly use. The storehouse part keeps sugar in holding, so that when you are between meals your blood sugar doesn’t drop too far. Glucagon is insulin’s sister hormone, that tells the liver to let some sugar out of the storehouse when needed. Simplified, I know, but bear with me here. Other organs and storage spaces are involved with other molecule types, like fat in adipose tissue etc.
Metformin is acting like a security guard telling the liver he’s not going to open the truck gate and let them out. It tells the factory to stop processing so much, and it tells the storehouses they aren’t supposed to let the supply out so fast, no matter what the rest of the body is shouting for it to do.
This would be a sensible thing to try if the locks and keys aren’t matching, and it takes a lot longer for the supplies to get inside the end cells – you don’t want trucks backing up everywhere, spilling their sugar loads all over the place while they wait.
Problem is, that’s not what’s happening here. The sugar trucks are being released in an attempt to encourage the osmotic transfer of fluid from the surrounding edematous tissues into the intravascular space – after most of the other attempts to preserve intravascular fluid have failed spectacularly over the last three decades of medical intervention.
I have plenty of keys for my locks. If anything, the cells are plenty full and don’t need more nutrients flooding their way. The cells pretty much plan on ignoring both the sugar trucks beyond their needs and the spilling of said sugar trucks. They don’t really care. There is so much extracellular excess fluid, it doesn’t matter to them anymore.
The reason I titled this “maybe the last” is because once I take the first metformin doses, it is only a matter of time before I experience catastrophic vascular collapse. It may be the first dose that does it. It may be the first week. I don’t know. But telling my liver to stop putting sugar trucks out into the system, and telling my liver to stop “making sugar” to store, when my liver is already under distress from the perfusion situation and my kidneys are slowly losing function because of the lack of perfusion, can only lead to disaster.
I don’t know if anyone will ever read this. Maybe it doesn’t matter. I just wanted to document what is happening and “what happened” if it is read after I die.
I know. Everyone dies. But it’s different when it’s pretty imminent.
I want to go on record as saying the ones I love most are Jesus, my husband and son, my family (yes, including my father’s new wife that he married after my mother passed away in 2021 from stage IV metastatic breast cancer), and my church family. Music ministry for the win. Choir light side and instrumental dark side both. Even the ding-a-lingers (yes, I was once a handbell player so I get to say that).
Jesus knows. He loves. He loved so much that He chose the only way to deal with the sin situation that separates us from Him. Sin required death, and only an innocent person can die for a guilty one (aka all of us). So He came, died, rose from the grave, conquered death, and went back to heaven all so He could make a way for us to be with Him in eternity. All it takes is us putting down our pride and repenting – agreeing with Him about sin and how guilty we are and how offensive it is to His holiness – and believing that His sacrifice is the only answer to solve that problem. Because the alternative is eternal separation from Him in hell, and nobody sane wants that. I certainly don’t want that for anyone reading this.
Okay, time to finish up. Didn’t expect it to take this long to “summarize” a lifetime of medical woes. Oh well.
I am “Satscout” – “Saturn’s scout” – it’s a Sailor Moon reference combining my favorite senshi with the North American ’90s dub name for them, “Sailor Scouts”, compressed into eight characters because Bellsouth had an eight character limit for usernames back then. Yes, I’ve been Satscout for over 30 years. I also adopted a catchphrase back then, “just a shadow passing through”. I admit stealing the line from a Clay Aiken song. Busted. But it’s apt. I like being in the background, just a shadow passing through. And life is so ephemeral, it seems justified that way too. Especially as I near what is likely the end of it. Hopefully someone will fill in the gaps once I’m gone. Probably.
Goodbye.