Thursday, March 31, 2016

Surgery Update--Bye, Alfred!

Today, March 31, 2016 I had my gastric neurostimulator removed. I affectionate a named him Alfred after the butler in Batman figuring he would be my right hand man. Instead, Alfred didn't really help me at all. 

Alfred was placed August 2014 in the hopes of blocking the signal of nausea to my brain which, in turn, would cause less vomiting, which in turn would help me eat more. It didn't. I went into surgery weight around 177lbs. By the time I was entering my most recent crisis on March 1, 2016 I had dropped to 165lbs. Today before surgery began to removed Alfred, I had dropped to 155lbs. Clearly my right hand man had fallen asleep on the job. 


It's always a difficult discion to have a device implanted in you--it's a foreign object, hello!--but it's just as difficult to decide to remove it, even when it hasn't helped you in well over a year. The reason for this is that you feel like a failure. 

You've failed Reglan
You've failed Domperidone. 
Linzess isn't exactly working right either. 
And now you've failed the gastric neurostimulator. 

Internally you know you have ZERO control over it, but it's a blow to the ego, the psyche, your morale. You just want your life back, to work, to have a hamburger...but now you just don't know what to do. 

I know that I just need to keep pressing on. Trusting the process and doing my part by consuming what nutrition I can handle at this point to keep my body running. It's not easy...! But I know that's what I have to do. 

Boost is disgusting and the Boost Breezes are SOOO sickeningly sweet they're hard to drink. Ensure Clear are good, so I try and drink those. But Instant Breakfast in the bottle have a higher vitamin and protein count than Boost or Ensure, so I've been drinking that more. I recommend Ensure Clear and Instant Breatast in the bottle, they taste good. 




I hope that NOBODY has to go through this kind of nonsense. It's not easy and it's not fun. But for those that do, I'm here for you and we all have each other. 






Wednesday, March 23, 2016

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.)