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Friday, January 6, 2017

Allergies,Immunology Issues And Hospitalizations

I was hospitalized approximately six times in 2016 for various reasons, all interrelated.  I was admitted through the Emergency Room having arrived via ambulance (called by the nurse several times at my job), sent from my doctor's office and driven by a family member from home.

I was admitted due to infections in my leg, breathing issues (allergy/asthma attacks) and kidney failure.  My longest stay was about six days.

It is difficult to be hospitalized.  It is more difficult with allergy/immunology issues to foods, medications and chemicals.  I was hospitalized in Stony Brook, St. Charles and Mather during 2016  I was in the Emergency Room of all and also Brookhaven. None of these hospitals were able to handle my allergy/immunology issues as far as food goes.

Stony Brook chose to put me in a private room and got approval from my insurance carrier.  If you are concerned, ask for a private room, get the doctors or social workers to get approval.

I could not be fed anything in any of the hospitals as they could not serve all organic foods or guarantee there would be no cross contamination.  I need foods without antibiotics, sulfites, and preservatives, as well as, gluten free, nut free, soy free, egg free and corn free.  Therefore, all my meals were brought from home.  It makes things more frustrating, and brings anxiety to the medical staff and patient.

The nursing staff in every hospital was phenomenal.  They went above and beyond, speaking with Pharmacy and Pharmacy speaking with manufacturers..  They made sure to check my allergy band constantly and had signs posted.  Even so, I still reminded them every time they walked into the room.

My advice is to have a written list of all your issues and also keep a list in your phone. Also, make sure someone other than yourself has this information,  Do the same with medications.

Constantly remind all medical staff  of your allergies.  DO NOT WORRY ABOUT BEING A PAIN IN THE BUTT.   Being a pain can save you and the staff from a life-threatening situation or worse.

The tech who did one of my tests could have been a comedian. He had me laughing and calmed me down.

Tests requiring medications can be scary when you aren't sure how you will react.  Each time, they had emergency personnel on call in the event they needed them!

Ask detailed questions. You have the right to refuse if you are uncomfortable.  I refused a test because of the medication they needed to use. The doctor agreed and ordered a different test without medication.

My anxiety level was on overdrive every time I was in the hospital.  I tried to keep a sense of humor; it's the only way to get through.

I keep my laptop with me.  They offer free internet so I stay in touch with people through Facebook and Skype when they aren't visiting.  I watch movies, YouTube and sometimes I write.  I get through it and you can too,

Below is an Essay I wrote during one of my hospitalizations.  True Story.

The Time-Censored Light Switch

I’ve been here since Saturday, in the hospital, and I keep telling everyone that something is wrong with the light in the bathroom. They say it’s timed censored so if there’s no movement, it will automatically turn off. It is timed for 10 seconds!!!!! They put in a call to maintenance, so far, I’ve seen no one resembling a maintenance person enter my room!

They gave me the prep the other night to prepare for my colonoscopy which was yesterday. Ahhh, fun. But apparently it wasn’t fun enough on its own. You see, Henry is attached to me, that’s my IV pole, whom I’ve affectionately named Henry. He comes everywhere with me. No matter how personal the situation, trusted Henry is by my side. I’ve found like most males, Henry is not always cooperative. The prep makes one run to the bathroom, however, I’m not capable of running very quickly on my own, with Henry by my side, it’s near impossible. He needs to be unplugged, then he isn’t the fastest, he gets hung up on wires and stuck on chairs and beds and the bottoms of tables. Once we make it into the very small bathroom, there’s not much room for both Henry and I, but, we make it work. That’s when the fun begins. I realize, I have 10 seconds only to accomplish the task at hand in light. After that, I’m doing everything in the dark. Motion is supposed to turn the light back on. Ok, I’ll keep that in mind.

Henry and I got through the prep; I was a bit cranky through it all I will admit. He bailed on me for the actual procedure, they took just me down, he stayed up in our room and relaxed. But he was right there waiting when I arrived back.  I was apparently drugged out of my mind. My husband, mom and sister got some good laughs so I’m told. They gave me Benadryl in the IV on top of anesthesia, so I was fruit loops for a while. I have no memory of said incident and deny it all and luckily my sister didn’t film it, so there’s no proof. 

I’m told the nephrologist came to see me yesterday after my procedure. He found it pointless, as I was fruit loops, and said he would come back this morning. However, he did place orders. I am to pee into a hat for 24 hours straight. Oh, more fun! We started this new marathon at 6 a.m. this morning. Henry and I stumbled into the bathroom, we both looked so lovely, and I tried to situate myself over a hat on the bowl all in 10 seconds. The rest is done in the dark. And so, not only am I peeing into a hat, but I’m frantically waving my arms in a vain attempt to stimulate the light. It looks like I’m waving goodbye as I leave on a cruise ship on an exciting journey, but alas, my only destination is back to my hospital bed with Henry. So far, he’s been a gentlemen, he knows his place at the side of the bed and stays there.

Today, they let me take a shower! The nurse wrapped up my arm with the IV in it in plastic and used a lot of tape to keep it in place. I was freed from Henry for a short while. I was told very emphatically not to get my arm wet, even to keep it out of the shower. Now, the IV is in my right arm; I’m a righty. I strip in lightning speed and of course, the light goes off just as I’m almost done. I click it back on, turn on the water and hop it. Now… in order to keep my right arm outside the shower, I need to face the water. I’m trying to pump soap into my left hand using only my left hand. Bam, the light goes out. I am now in a pitch black shower stall, facing the water, trying to wash in the dark with my left hand no less and my right arm extended outside the shower stall. I think to myself, this would be so romantic if only Henry were here, but they wouldn’t allow him in, so, I was on my own. I come to the conclusion even I’m not supposed to see me naked.
I stumble out of the shower in the pitch black and click on the light. Now I have 10 seconds to dry and dress. I didn’t make it. I click the light back on about 6 times and finally think to myself, ok, I will finish dressing by my bed, I’m alone in the room. Great idea. So out I come with a towel wrapped on my head and a tiny towel covering my front, the door to my room was closed, at least when I went into the bathroom. Well…. Guess who was awaiting my exit from the bathroom! The maintenance man. Yes, he was standing in my room with tools in hand tinkering with my air conditioning/heating device and waiting to gain access to the bathroom.
After we both said some ridiculous comments to one another that I can’t actually remember and I “ran” back to the bathroom, I got a knock on my door. Now, I’m again in the dark trying to balance myself to put on panties, because I don’t want to upset the hat that is sitting on the toilet bowl, so I’m standing up to do everything. The maintenance man yelled through the door that he is going to speak with an expert in bathroom lights. I had no idea bathroom lights were an expertise. You learn something new daily.
We have made it through. Henry and I are as close as ever. He was a bit jealous of that maintenance guy, I could tell. We had a long talk and I reminded him, who is it I’m attached to? You. Did you see me take off with the maintenance guy, no, so you have nothing to worry about.

I’m now dressed in a gorgeous gown and I’m awaiting visitors and food, the highlight of my days other than the next time I have to go pee into a hat in the dark while waving frantically to no avail!

Update:  Henry and I are still going strong!  :)

DISCLAIMER:  It was over a weekend.  It was difficult to get someone over the weekend to fix the switch.  The hospital did a great job and I'm sure had I asked, a nurse or aide would have helped me.  As has been suggested previously, I see no reason to write a letter of complaint or sue anyone for anything.  They took great care of me.  I found it humorous and wrote about the experience. 
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