Hyponatremia and Central Pontine Myelinolysis

What is hyponatremia? Information regarding CPM and EPM.

My EPM Story: the middle (part 2):

Thank You for your patience. It took me a few days to locate my notes regarding my hyponatremia stay, and even after locating them, I’m still fuzzy regarding the details.

To be honest, it is hard for me to remember if I remembered correctly. For instance, I wrote in my notes that they gave me potassium via IV, but I really thought I had to take potassium tablets. I know I had potassium tablets when I was at the hospital that treated me for EPM, but I can’t remember how I was treated for low potassium while being hospitalized for hyponatremia.

You might be wondering; really, what does it matter? Well, it raises doubts as to what I wrote back then. Was I remembering things correctly even a few weeks after it happened? Can I accurately tell you what happened to me?

I know there might be some information in my posts that contradicts something I might have posted for certain (I hope not), but that’s usually because I find a new study or new information that contradicts what I have found in research previously.

I am trying desperately to keep everything I write accurate and informative, and I want that to be extended to how I was treated and how my story took place.

That said, I remember waking up in the ICU. At the hospital I went to, the ICU rooms were vast and private.

I thought it was a Sunday morning. It felt like I had been unconscious for awhile, but it turned out to be a Saturday.

The nurse questioned me regarding, the day, the year, the current President, where I was.

I answered everything correctly, except the day, but she told confirmed my mistake that it was Sunday, when in fact it was still Saturday.

I realized this when the next nurse or doctor came in to speak with me, which was pretty quickly. (I believe there were two doctors. One I know was a nephrologist. The second, I believe, was an endocrinologist.)

They explained the seriousness of the situation. They explained that I could develop seizures, delirium, go into a coma, or die.

The nurse had explained the same situation to me before the doctors, but the gravity of it really wasn’t sinking in.

Don’t get me wrong, I felt like I was dying. I had a hard time staying awake, but I was fighting to stay alert and aware. I will stress, I was fighting. My head was splitting. It wasn’t a classic throbbing pain, but an intolerable pain from the base of my neck that radiated through my head. I would have to explain it in what I would think it felt like, and that is as if someone had pierced the base of my skull with an ice pick.

I felt as if I fell asleep that I wouldn’t wake up, but I couldn’t stay awake.

When the doctors (I believe there was more than one that saw me initially in the ICU) and nurse left, I really had to use the bathroom.

I’m incredibly stubborn, and the doctor had told me that I was going to have to stay in bed, complete bed rest, but I didn’t want to use a bedpan, so a few minutes after they left the room, I stood up out of bed. I felt weak. I felt nauseous and light headed. I knew I had to act quickly, so I started unplugging things.

I got the pulseoxomiter unhooked. I couldn’t figure out to how to unhook the leads to my EKG monitor. I felt so bad, and I knew I was losing time. The nurse was going to be back any time.

When you’re that sick, you just don’t think clearly. I had unhooked these monitors dozens of times before when I was in the hospital, but I couldn’t figure it out this time, and if I pulled all of the leads from my chest, then they would know I had been out of bed.

My efforts were in vain. I stood there in my hospital gown as guilty as a kid stealing a cookie before dinner, the nurse walked in.

Chastised and defeated, I climbed back into bed, as she put on the pulseoxomiter. She reinforced that if I had to use the bathroom, it would have to be on a bedpan.

This was an atrocity that I had avoided for 32 years. (I’m accounting that I had been potty trained before the age of two).

If you have not had the embarrassment of using a bedpan, if you have to use one, you are usually in a position where you don’t care if you use one or not. However, this is not always the case, and it wasn’t in mine.

I contemplated holding it until I could attempt another break for it, but I couldn’t and using a bedpan was a lesser evil than defecating in my hospital bed.

So, in came the nurse, bedpan in hand,  she instructed me to roll to my left side.

Now, I know you weren’t anticipating this little bit of knowledge, but I figure it’s better if I tell you then you’re surprised by it in the end.

If you’ve ever used a bedpan, they’re one size fits all. There aren’t any xs or xl bedpans. I would totally need the xl. My a$$ is plentiful, so as I was positioned on it, I felt for certain, I was going to need clean sheets despite having a pan underneath me.

I’m sure if you’re an xs, it probably feels as if you’re sinking down into it. I don’t know which feeling would be worse.

Here’s the other thing you should know: it is unbelievably difficult to use the bathroom flat on your back. It gives me a whole new appreciation for babies.

I guess, once you figure out how to stop from using the bathroom while lying on your back, there becomes a conscious muscle control that prevents you from doing it.

As I was trying to overcome my conscious muscle control, I was totally regretting eating over a quarter of a watermelon the previous day. Yes, drinking caffeine (iced tea) and eating watermelon, along with having low sodium levels, leaves you fully loaded in the intestine department.

I apologetically informed the nurse as to what was in store, and I suddenly had a whole new appreciation for their job. If I was her, I would have tossed my cookies.

I guess, they become accustomed to the gruesome because she didn’t hurl.

That said, when the first major incident was 20 minutes in the past, I had another date with the bedpan.

Relieved, when all the urges had passed, I was informed of the next plight. I was going to be on an all liquid, high sodium diet. What does this mean? Soda and broth..oh and jello.

I haven’t mentioned this previously, but my culinary tastes don’t routinely include broth and jello. I do drink a Pepsi a day usually, but I don’t usually drink more than that, so I wasn’t a happy camper. I really didn’t feel very well, and I didn’t think that chicken broth and Pepsi was going to make me feel better.

Truly, I was concerned with what I was eating.

Yes, even being near to the  closer end to death, I was concerned with my dietary options.

(Woohoo, I just want to break to say, I’m extremely pleased with my ability in writing today’s post. After struggling for months to complete my thoughts, today is going pretty smoothly 🙂 )

I remember meeting with the doctors, I believe there were two of them that met me both at once, but it might have been one just after the other.  Both of them expressed the seriousness of the condition.

Tom was unaware of my situation. He was still at home by early afternoon. I really didn’t care at the time if he was there.

At this point in time, most of the day, Saturday, I felt like a human pin cushion.

I believe I was having a new lab drawn every 3 or 4 hours. (It might have been every 8 to 12. I know at one point, they became less frequent.)

I had already been in the hospital from June 10 to June 16th for my pituitary surgery. They had also been very generous in poking me full of holes, so I’m afraid my continuous disappointment in having lab work done was evident.

When I was admitted to the ER, my sodium levels were 118, by the next afternoon, my levels had dropped to 110.

At this point in time, I was awake and aware of what was happening despite the drop in sodium.

(This is why I believe, I had the chronic form of hyponatremia. I believe my levels were probably dropping while I was in the hospital for pituitary surgery, but were still in the normal range at the time I was discharged. I think that over the course of Wednesday evening, Thursday and Friday they continued to drop. This would explain why my brain stem didn’t rupture or why my CT scan didn’t show any evidence of cerebrum swelling.)

I was sending out texts and making calls to my family and friends requesting prayers as soon as I could Saturday.

I remember watching a ton of TV. I remember spending a lot of time going in and out of consciousness. I also remember having an UNRELENTING headache.

By Saturday night, my potassium was also too low, and I believe I received IV potassium.

They did place a PICC line. I think that was when I first arrived; however, they didn’t use it except to administer medications.

They were concerned that since they flushed the PICC line with saline solution that the labs would be invalid, so every time I had my blood drawn, I had to have a puncture. That led to a LOT of punctures.

Sunday, I was still experiencing the extreme headache. I was still experiencing the nausea, and I still felt like I was dying.

I had talked with my Aunt, who is an opthamologist. She stressed the importance that they raise my sodium levels very slowly.

Every doctor and nurse that I spoke with said the same thing, so I really thought they knew what they were doing. Since they told me that it had to be raised slowly, I thought they knew how to raise it slowly.

What I wasn’t told: what exactly slowly meant. The doctors told me that it would probably take 5 days or more to get my levels back to normal.

I was already on IV saline, and I was receiving liquids only on Saturday. On Sunday, they continued the 3% saline IV, but they allowed me to start eating a “normal”, non liquid, diet. Yay!

Sunday afternoon, they started to enforce a fluid restriction.

I was not exactly happy about this. I was really thirsty. It wasn’t just dry mouth.

My neurosurgeon who performed my pituitary surgery was cautious to inform me that I would need to be careful about distinguishing between thirst and dry mouth, so while I was hospitalized for the hyponatremia, I brought hard candy  and chewing gum to keep my mouth from drying out.

By Sunday night, I was begging for water from the nurses. They told me that I could only have 4 oz in an 8 hour period.

I remember after Tom left Sunday night, the nurse brought me what she called the “magic” pill. She told me that this is what they used when someone’s sodium level wasn’t rising fast enough with IV saline. She called said when sodium levels were being “stubborn”.

I thought, this will make me feel better.

I turned the TV off and went to sleep.

I remember at some point after that, I requested to use the bed pan. I was still on strict bed rest, and I really had to use that bathroom.

I think I had tried to use the bed pan, but couldn’t, so the nurse told me that she would come back later.

Apparently, shortly after this,  I became delusional.

The next thing I remember, there were trying to insert a catheter. The first nurse made several attempts. Then another nurse tried to make several attempts. It didn’t work.

Trust me. I was sick, but I could still feel pain.

At this point, I said, I’m going home. I’m not doing this. I had gone from being completely out of it, to completely aware of what was going, to I don’t care what’s going on because I feel like I’m dying, in a span of 5 minutes.

They called another nurse from the OB/GYN ward to insert the catheter. He said something I’ve heard before; you’re anatomically abnormal. Then he followed with, you’re ureter curves at a weird angle. I had never heard that before, but I’ll trust him on it.

He was able to get the catheter in it’s proper place, and I apparently wasn’t lying when I said I had to go. If I’m correct, the nurse told me that I had emptied two turns, which if I’m correct, corresponds to two liters.

Apparently, I had also soaked my bed because she spent the next 15 minutes changing the sheets and my gown, and cleaning up.

In other words, I wasn’t kidding when I said, I really need to use the bathroom!

The next morning, I was SO thirsty. I remember they gave me my 4oz, and I couldn’t help but guzzle it. They gave me fluids with my breakfast too, and I guzzled that. I really couldn’t help it.

As I was “enjoying” my breakfast, the nurse was discussing why I was restrained. Yes, I had the belt around my stomach.

Now, I really don’t remember doing this, but she told me that when I became delusional, I apparently got out of bed, pulled out all of my leads and strolled down the ICU hallway naked looking for a bathroom.

Given my previous dissatisfaction with using a bed pan, I can’t say that I absolutely did not do this. However, I had a PICC line, and as out of it as I was, I could not imagine pulling out all of my leads, but not pulling out the PICC line.

Maybe, I had the foresight to grab my IV bag from the stand and stroll down the hallway naked, but considering how much of everything else that I remember, I believe this was lore for the sake of inserting a catheter so she wouldn’t have to clean a bedpan.

I don’t know. Really. Maybe, I’m way more skilled in delirium than I am fairly conscious. Guess, we’ll never know for sure.

Anyway, when the nurse told me that I drank through my ration of liquids in about 10 minutes, I sent an emergency message to Tom: you need to sneak in some water and Pepsi. Please, I’m dying of thirst.

I swear, I had just finished sending that text, when the nurse came hurrying in. She stated: they think your sodium went up too quickly. We’re stopping the saline. You need to drink as much as you can. What can I get you?

She was changing my IV fluids at that point in time.

I thought: Thank God! I requested water, and then sent the text to Tom, saying what they had just told me. My sodium levels went up too quickly. They’re worried that it’s going to go up too high. You don’t have to bring any water. I still want the Pepsi.

I knew what they said, but I didn’t know what it meant.

At this point, my sodium levels were 137. By Monday afternoon, they were 145. The range for normal is 135 to 145.

So to recap, I was admitted with a sodium of 118 on Saturday morning at 1am. By Saturday afternoon, it had continued to drop to 110. By Sunday morning, it was 118. That was 8mmol in about 30 hours. If you compare it from Saturday evening to Sunday evening, it raised by 9 mmol.  From Sunday morning to Monday morning, it went from 119 to 142. It was more than 23 mmol in 24 hours.

From everything I posted in my blog to date, it shows that this was too quickly.

I thought that I was going to be fine because I was doing fine.

I didn’t realize that it could take up to a week or longer for CPM or EPM to develop.

On Tuesday afternoon, my sodium levels had stabilized, and I was released from the ICU.

This further escalated my belief that I was extremely lucky and that I was going to be completely fine.

I spent the next few days in the hospital without incident.

By Thursday afternoon, I was ready and willing to leave. I was looking forward to getting back home to my kids, to sleeping in my bed, to eating what I wanted to eat, to not being awoken every 3 or 4 hours to have my vitals checked or to take medications.

The doctors who worked with me, NEVER gave me a hint that something else could happen after the hyponatremia. They NEVER told me that it could take a week or longer for this new injury to develop. I had NO clue what was going to happen next.

Because of that, I am writing this blog. Because of that, I am injured, possibly for the rest of my life.

I really hope that you will read my story and realize that this could happen to you. This could happen to someone you love, but if you forward this information, you might be able to stop it.

This is by far my longest post to date. There might be a few errors, so please bare with me as I work on editing it in the next few days.

If you have questions or find something lacking, please let me know.

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