I'm allergic to gluten, nuts, soy, corn and eggs. I'm also allergic to penicillin and have serious problems with chemicals - bleach, drain formulas and much more. I spent 8 hours in the ER once when sternos where lit at a Ladies Night gathering at my sister's house. Not fun. (see Ignorance is Bliss. But, It Could Mean Life Or Death.)
I went to the Gynecologist for my routine annual. No biggie, right. Wrong. They discovered I had a urinary tract infection. I received the phone call while I was out at the farms with my sister, niece and daughter.
For most, a call like that is no big deal. The doctor will send a script to your pharmacy, you will take the medication, take another urine test and all will be fine. NOT FOR ME. (For a more thorough understanding of my issues, check out my Category Life Stories and Inspiration)
Check out my categories Gluten Free Baked Goods and .Gluten Free Pasta. I have the same problem with food as I do medication.
My anxiety goes through the roof at news like that. Why you ask. Well, because I know the HELL I'm going to go through.
My doctor called and spoke with my pharmacist and asked about medications to treat me. When I received the text that my prescription was ready for pick up, unlike other people, I didn't head to the pharmacy. Instead, I called them. I asked for the full name of the medication, the manufacturer, and the NDC number.
Next, I looked up the phone number for the pharmaceutical company because the pharmacy can't always give it to me, waited on hold at least 20 minutes and finally spoke to a representative. My question to them is always to ask if the medication contains gluten, nuts, soy, corn or eggs. Generally, I don't have to worry about nuts, and eggs is rare in my experience. However, most medications will contain gluten, soy, corn or all of the above or any combination thereof.
My doctor and pharmacist chose Nitro Furantoin 100 mg capsules to treat me. Sounds simple. For most people it is. For me, NO IT'S NOT. I spoke to the manufacturer and, as suspected, there was corn in the medication. Then the circus began. It consists of literally HOURS on the phone. Both myself and my doctor. made many phone calls.
My doctor spoke to the pharmacist again. No other medication would work for me with my allergies. They looked into other manufacturers. All used corn starch as a filler.
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I don't like Stony Brook ER because it's crowded and huge. However, I often use Stony Brook doctors, such as my Gynecologist and Breast Surgeon, and I use the breast center, as it's more intimate and separate from the hospital.
Next I called the compound pharmacy. What is a Compounding Pharmacy? I asked if they could make the medication for me minus the corn starch. They could not. They didn't have the active ingredients and couldn't get it.
All of this was a 6 hour process of phone calls, conversations, and anxiety levels through the roof.
My doctor called me for the third time and said the dreaded sentence. "I'm sending you to the ER." I knew it was coming. I'd been down that road before. Most people catch a cold and it goes away. Not I. It NEVER goes away. It turns into bronchitis then pneumonia. Hence why I run to the doctor immediately. Because I know that unlike the normal routine, if they give me Z-Pak, (Zithromax) it may take several days (while I get more and more sick) for the pharmacy to find a manufacturer of Z-Pak that doesn't use ingredients I'm allergic to. That means many phone calls, and then waiting to receive the drug for me. If they can't find a safe medication for me, I'm sent to the ER.
I packed last night. I packed clothing, my medications (yes they let me take my own because of my allergies - only after the hospital pharmacy inspects it, puts a sticker on it and puts a nurse in charge of distribution to me) So all my medications are turned over to the nursing staff and they keep them and then give them all back upon discharge.
I remembered my cell phone charger, toothbrush, toothpaste (I only use my own as other brands may contain gluten) and even took my laptop and some food (my cereal, packaged peaches, baby food bananas.) Late at night, they can't get me food I can eat.
I took a quick shower and at around 6:30 my son drove me to the ER and left me as he wasn't allowed to stay. COVID rules. This made things even MORE stressful. Now I was alone, no family with me. Normally, family is all around me - my husband, kids, siblings, taking turns coming and going.
They know me by name in the ER This is no joke. They truly do KNOW me by name.
I was prepared to be admitted by Infectious Disease and to be monitored while on IV antibiotics. I've had kidney failure before, so they would probably contact my Nephrologist as well. They were afraid the urinary tract infection would spread to the kidneys creating more havoc.
I endured the routine - urine test, blood work, starting an IV, COVID and flu tests - I HATE that swab up my nose - and I was given a bed in the hallway as it was crowded. Not with COVID patients, with sick people and injured people.
I opened my patient portal on my phone through my app and showed the ER doctor everything my Gynecologist found - the results of the urine test and her notes and concerns. The ER doctor took a picture of it with his cell phone to send to the Infectious disease doctor. They couldn't get into my portal because it's two different hospital systems. I love my Gynecologist, but HATE the huge hospital she's associated with. I only go to Stony Brook if I have no choice. It's literally like it's own city - this is no joke. I prefer small and intimate.
As a side note, doctors, nurses, and other hospital staff must walk a marathon every night. God bless these people.
I had my cell phone to keep me occupied and I also watched the comings and goings of paramedics and police bringing people into the ER. One guy came in in cuffs and was fighting with them as they tried to put a mask on his face. Lord I could NEVER be a police officer, a Medical Person - I have NO PATIENCE for these people. Then there are the drunks. They are sometimes entertaining, sometimes frightening. The night is never complete without a heroin overdose, victims of drunk driving and elderly with heart issues. I know this routine well.
I got lucky last night. The ER doctor told me that I didn't have to be admitted per Infectious Disease. In fact, Infections Disease didn't even have to come into the hospital to see me. They had spoken to one another and pharmacy and decided it was safe to treat me with a ONE DOSE medication that they felt didn't have anything in it I was allergic to. Of course, they would monitor me.
They gave me Fosfomycin (dispensed as Monurol) It was a small packet that was mixed in water, stirred up and tasted fruity. I had brought my own bottled water - as I know I can drink it safely - no added minerals or vitamins or other ingredients. They used my water to mix my medication. I drank it down and luckily had no problem. THANK the stars up above.
Yes, one time I drank a bottled water and my lips swelled. I thought I was losing my mind. Who is allergic to water. As I was freaking out, my husband grabbed the bottle and read the ingredients. Ingredients in water? Yes, the water had minerals and other "ingredients" and that's what caused my reactions.
After monitoring me over an hour, I was released and home by about 11:30 p.m. What a relief.
I must contact my doctor today to let her know what was done last night. I have to follow up with her as well with a visit and a urine test.
Remember, you are not alone. You can feel alone. You may be the only person your friends and family know with these issues, but thousands suffer.
Remember, you are your own best advocate or your child's or family member's advocate. Don't let them brush you off, don't allow them to make you think you don't know best. Be firm. Explain in detail. If the medical people think you are being dramatic, a hypochondriac, exaggerating, or you are just an anxiety ridden nut, let them think what they want, but stand firm.
The doctors and nurses know me now. But I ran into a problem in the beginning when all this started. I was even told it was "all in my head" and once accused of being a "drug seeker". (see At Last)
The majority of medical personnel have been WONDERFUL, but I've also dealt with some who just refused to believe my issues where as real and severe as they are. (see The Day My Life Changed)
Today I feel beat up. Anxiety does that to you. But, I'm home, I was medicated, and I avoided an admission and IV antibiotics. Life is good.
Thank you to the WONDERFUL medical staff who cared for me yesterday.
To end on a happy note, here's an adorable picture of my new Grandpuppy.