My March Madness

Spending ten days in the hospital is rough...on anyone. You get ZERO sleep because taking your vitals at 12am is of great importance, for some reason. And drawing blood at the crack of dawn is of great importance too. Not to mention the beeping, the buzzing, the patients screaming, and the random medications that get administered at all hours of the day and night. I lucked out in that I got an isolation room, so it was pretty air tight and quiet...mostly. Still not much sleep though. 

I landed in there because my Gastroparesis--and apparently IBS--were out of control. I had been vomiting for 16 DAYS straight and I just could not keep anything...ANYTHING...down. Initially I was in there "for observation" but then it turned in to something so much more. 

The Internal Medicine doctor that saw me that first morning (I was admitted at 12:30 am on Wednesday March 2nd) admitted that he knew nothing of my condition and would defer to GI that would see me later in the day, but he thought I would be going home. I had not eaten the food brought to me that morning, didn't eat that afternoon, and by evening didn't eat either. When GI came, he thought I needed an NG tube and wanted to do tests for auto immune diseases. 

The next morning I turned away food and was visited again by the same Internal Med doctor who thought the NG tube would not help, but said "but your condition is above my scope of knowledge." My thought...then don't give me your opinion on it. A couple of hours later the NG tube was placed. It took three tries to get it in. The first try resulted in a big wad of it coming out of my mouth. The second try resulted in it just hitting the back of my nose. The third try was a success. 

It was slow going at first, but eventually it began sucking stuff from my stomach. It's an odd feeling, to be honest, but the relief you get from it is better. The nurse I had said that the amount of stuff coming out wasn't the problem, but the color. It was an off-putting hue--I'll leave it at that. 

Fast forward a day and a new GI came in and he looked at new x-rays that had been taken of my belly. Potassium pills were just sitting in my stomach like two BFFs. He said I was "FOS" and had a big gas pocket in my stomach. Based on that and my other issues (POTS, migraines, peripheral neuropathy, vertigo) he thought I was having a complete neurological breakdown and needed to have TPN and go to UCLA for better help. 

The next morning I woke up, my nose leaking puss. I buzzed my favorite nurse, Lesly and said "Uh, I think we have a problem!" 

She goes "Oh. My. Gosh!" Runs and pages the doctor over and over. I was having a severe allergic reaction to the bandage holding the NG tube in. By the time he finally came we had to take it off because it was peeling off from puss leakage. 

The doctor decided to put me on iv Benadryl and ointment on my nose due to the reaction. And NO MORE TAPE!! 

About an hour later the CNA comes to take my vitals and it hurt. I look down and my left elbow is swollen. Two days before they had started another IV in my right arm because my left arm was swelling; however, the vein was too small so they kept the left arm open for medications like phenergan and potassium. Seemed like the vein was going, so I called Lesly. Again she says "Oh. My. Gosh!" And takes out the IV. 

Finally they decided to put a PICC (Peripherally Inserted Central Cathiter) line in and give me TPN. When you're on TPN you can't have anything other than ice chips and sips of water, so I was on the yellow bag and ice diet for 4-5 days. 

Then along came the THIRD GI and she thought this whole episode was IBS gone wrong. I had to have GoLitely pushed down my NG tube to clean out my bowels. I will say this:: if you HAVE to have that devil drink, having it through the NG tube it the way to do it. But I spent the evening and night shivering, crying, and in pain. She also gave me some shot that was supposed to make my bowels move--it didn't--and then she decided to try and get me to eat, so it was Apple juice down the NG and then Boost--that was HORRIBLE. But I ultimately was able to get the NG out, food down, the PICC out and then home. 

The directions I got going home were to consume 3-4 Ensure or Boost because it would put me close to 1,000 calories a day. If I could get in some soup too, great. I've been struggling to get in much of anything more than 1-2 Boost or Ensure and a little soup. I've lost more weight (I went into the hospital weighing 165 and now weigh 159) and have trouble with nearly passing out. But I'm trying to stay positive. 

My referral to UCLA went through, but I won't be seen until November. We're hoping that they'll get me in sooner due to the complexity of my condition, but who knows. I'm sure that's how most people feel about their conditions. On the upside, my nose is normal again!

(The progression of my nose. Top left is bandage on [duh]. Top right is when I realized I was reacting to it. Middle left is right after getting the bandage off. Middle right is a couple of days later. Bottom left is 3 days before I went home. Bottom right is the day I went home.)

A Tale of Two Rough Nights

Having one rough night is bad enough. Two in a row...! That's inexcusable! Last night I was wracked with a migraine and stomachache SO bad that I was brought to tears. Home alone, I was forced to call for reinforcements at 11pm. Luckily, my friend Michelle came and sat with me and helped me avoid another trip to the emergency room. 

She grabbed an ice pack and snuggled me into bed and put the pack behind my neck and that calmed the worst of it. I was finally able to doze off for the first time all weekend. She kept vigil by my bed most of the night, which was comforting, and made sure that I was alright. 

Tonight, I lie awake with a HORRID stomachache and throwing up everything...even water. I've taken a melt away zofran, used an ice pack (having that on my tummy did NOT feel good), had my back rubbed, and taken phenergan, all to, so far, no avail. 

Come morning, urgent care will have me reenacting the old Mervyns commercial "Open! Open! Open!" Hopefully they'll be able to provide me with some relief. I can only imagine how dehydrated I am. 

It's aweful being awake in such excruciating pain knowing that there's no real place for you to turn. I feel helpless, my parents feel at a loss, the ER tells me they're not the place to turn to, I feel like urgent care will most likely tell me the same thing--what, then, am I supposed to do?! Live with it? Suck it up like a champ? This isn't a bruise, splinter, twisted ankle, or run-of-the-mill stomach issue...this is serious here, people!!

Do doctors take a course in chronic illness? I mean, in how to deal with them at the bedside manner end of it? If they don't, I think they should. Many of them lack, SEVERELY, the proper bedside manner needed to deal with someone living with chronic illnesses. Pleas don't belittle us. That's the last things we need since, often times, coming in to the ER or urgent care was one of the hardest decisions we had to make that day anyhow.