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Monday, January 21, 2013

My Medical History Story & Patient Rights

I want to take a moment to tell you about some of my medical history. I know that a lot of my entries are about present events, but there were a lot of events that led up to where I am now.

It all started when I was in high school, in 2000. I was sixteen years old and I was very, very ill. The illness just sprung on me, like a tiger waiting to pounce. It started with a fever, and I remember being in so much physical pain. I remember riding the bus to school and vomiting on the bus. The bus driver made me wait in the seat I vomited in until everyone got off of the bus. I remember being ashamed and embarrassed as all of their judgmental eyes passed over me as they left the bus, one by one. After everyone had gone, the bus driver gave me paper towels and cleaner and told me to clean up my mess myself and that she wasn't touching it. Sadly, I didn't know enough then to challenge her or just get off of the bus. I remember other mornings where I would walk to class with my best friend Paul, and just start vomiting. This one instance stands out in my mind. We were walking to class and had to pass through a breezeway outside, when I felt the urge to vomit. There was no where to run, I had to get sick then and there so I ran to the side of the high school building and vomited into the grass. I remember Paul holding my hair back for me and telling everyone who passed by that I had bad Chinese food the night before. He stayed with me until my episode was over and walked to the office with me so that I could call my mother.

I vomited up everything I ate and slept for three days. My mother, when I wouldn't get out of bed, felt my head and realized I was running a fever. I remember wrapping my comforter around me and getting into the car while she drove me to the ER. When I got there, I kept vomiting up bile, pretty much constantly. The doctor pressed on my abdomen and I vomited more. He thought that since my pain was on my lower left side that I might have appendicitis. I was admitted into the hospital when he finally reached my doctor.

I don't remember much after that. I was in a haze of pain medications, nausea medications, and just exhausted. The doctor that I normally saw came in to see me in my hospital room a few times and I went in for emergency surgery. They did an EXPLORATORY LAPAROSCOPY on me and took pictures while the doctors were looking for the causes of my sudden illness.

When I came to, in recovery, I was taken back to my hospital room. They gave me more pain medication because my belly was very swollen from the gas they pump in during the surgery and the surgical incisions. The doctors went in through my belly button and my lower left side. I remember being really angry because my aunt had the pictures the doctors took of my abdomen and I remember yelling at her and reducing her to tears because I wanted to see what had made me feel so miserable. Did I mention that I am really mean on pain medication? I don't know why I have that side effect, but I do. I apologized to my aunt later and now everyone laughs about it.

The doctors found that I had ovarian cysts. This can be normal in women but mine were pretty big. They removed some of the cysts and some had ruptured, leaving fluid behind that caused an infection. I also had endometrosis. I was utterly shocked because I was only sixteen. I didn't realize that my vomiting and pain could be something like that, because I remember thinking that it must have been some sort of virus. I had never seen anyone else that sick in high school. The doctor also informed me that he took out my appendix anyway, just in case.

My classmates from Chemistry came to visit me while I was in the hospital, bringing me a card signed by everyone (which I still have), and wished me a speedy recovery.

From then on, I would vomit and get really ill on and off, for years.

I became really ill in 2005. I had abdominal pain and my symptoms were the same as they were before. I went to the GYN and told them about my history. They ordered another exploratory surgery and found a few small cysts, but nothing out of the ordinary. They found a few lesions that were removed but nothing to explain my symptoms. Eventually, I was fired from work because I couldn't come in due to vomiting and missing too many days. I stayed miserable for the next few years with the abdominal pain and vomiting.

I went from doctor to doctor, only to be told that there was nothing wrong with me and that what I was experiencing was in my head. After a while, I started to believe them, but I never gave up. That's the important part of all of this - NEVER GIVE UP! You know your body better than any doctor does.

In 2010, a friend of mine suggested that I see another GI doctor. I had been blindly following what doctors had been telling me for five years previously, so what would be the harm in getting another opinion? This was the first time I became my own advocate. I didn't realize that patients had rights. How could I? No one had ever told me. So, I started doing research and found a GI doctor covered by my husband's health insurance, close to our house. I made an appointment and started doing research online about my symptoms. I began to take down questions to bring with me to ask the doctor. I didn't get all of my medical records together because there were scattered in so many different places. My doctor in my hometown had hundreds of pages on me alone, my file was the size of a textbook!

So, I went to my new GI doctor and brought questions, my symptoms, and what I had eaten/gotten sick. He listened to me and poked around my belly for a bit. He looked at me and told me that I needed a HIDA SCAN to confirm his suspicions. He thought that my problem was my gallbladder but wanted to make sure, first. This seemed reasonable to me, so I went to the hospital for my scan. The procedure HURT SO MUCH! I cried during it because of the pain when the dye hit. This wasn't a normal reaction. Usually, the scans are supposed to be painless.

After the scan, I reported back to my doctor. He looked at my results and told me that my gallbladder was functioning at only 15% and sent me down the street to the general surgeon. The surgeon was amazing. He answered all of my questions about the surgery, and took the time to examine me. Upon further examining, and realizing I hadn't eaten in a week, decided to hospitalize me. I waited in the hospital for a few days while he gave me medications for pain and nausea, as well as re-hydrating me. My fever ran close to 105. So, I had the surgery.

The OR staff came and wheeled by hospital bed down to the operating room. They waited for the doctor to come in before they gave me the medicine to relax me. When the doctor entered the room (and OR's are freezing), and they gave me Versed to relax me while the surgeon prepared for my gallbladder removal. I remember, after they gave me the medicine, that I told him that I hoped that it wouldn't be like the scene from SPACEBALLS where the alien pops out of me and does a dance across the OR. The surgeon cracked up as the anesthesiologist put me under.

The surgery itself wasn't too bad. I was up and walking around the next day. I remember that the surgeon came into my room and told me that my gallbladder was the nastiest thing he'd ever seen. As it turned out, my gallbladder was NECROTIC. So, I'm glad that I got that second opinion and didn't listen to the other doctors.

After that, well, as you well know, I've had nerve damage and more complications. In March of 2012, I was hospitalized for what the doctors thought was a terrible stomach virus. I received every test under the sun. I was vomiting up everything, even water. They decided to do a Gastric Emptying Scan on me, which I had never heard of. The doctor told me he was testing me for Gastroparesis, but I had never heard of it. My scan came back saying that after four hours, my stomach was only emptying at 36%. My GI diagnosed me with a mild case of Gastroparesis and discharged me after he did the ERCP procedure (which can be found in another blog entry of mine).

I went home and researched Gastroparesis, but aside from Stephanie's and Crystal's blogs/websites, and Mayo's of course, I couldn't find anything else on it. I decided to start my own blog and I helped start a facebook page that I'm no longer a part of, but I helped it grow. I've started my own facebook pages and groups, and they have been pretty popular online. However, my stomach, even with medications and a botox injection, has quite been the same.

I vomit daily (6 to 8 times, if I'm lucky). I'm seeing a Mayo Clinic Specialist, but I'm still my own advocate.

I want everyone to be aware that they have RIGHTS as a patient. They are but not limited to:

The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives.

The right to make decisions regarding the health care that is recommended by the physician.

The right to courtesy, respect, dignity, responsiveness, and timely attention to health needs.

The right to confidentiality.

The right to continuity of health care.

The basic right to have adequate health care.

Don't EVER let any doctor tell you otherwise. If you aren't getting the care you need, don't wait like I did. Don't be miserable for five years, almost destroy your marriage, and friendships. Keep searching until you find someone who will take the time to listen to you and give you treatment. No one should have to suffer when there's so much that modern medicine can offer. <3 More about patient's rights and what they are can be found HERE, HERE, and HERE.

Also, Valentine's Day is coming up. There is a movement going around in the Gastroparesis communities to wear green on the 14th of February. This image was made by one of my fellow Gastroparesis fighters. I know that Valentine's Day is a celebration of love. People normally wear reds, pinks, and purple hues, but how about showing a different kind of love and support this year? Will you please wear green to show support and love to those of us with this illness?

We are asking that you stand with us in unity to show support. It's a small thing to ask to support me as well as other GP fighters out there. We can't eat the Valentine's candy and most of us can't even sit in a restaurant because the smells make us ill. It would be appreciated so much. If you could take a picture, we can compile them to make an awareness video to show people that GP is out there and people know it exists.

No awareness, no research, no cure.

This picture was made based on the Spoon Theory:

These images can also be found on our PINTEREST PAGE.

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