Undiagnosed for 19 Years.

Disclaimer: I talk about my children, pregnancy, and motherhood usually on my blog. This is a personal post about my health. I get questions often about my blood disorder, so I thought it was time to write up a bit about it. 

I can’t remember a time in my childhood when blacking out was not a normal thing. I remember as a young child, maybe four, being at a playgroup. My vision went black, and I thought to myself, “Ugh, not now” and I sat down on a bench and waited for my vision to return so I could continue playing. I was always tired. I hated having to run the mile at school. I was always the last to cross the finish line. I couldn’t run for more than three minutes without being totally out of breath. I excelled at short distance running because I would do everything in my power to just get the race over with. I wanted to make it across the finish line before I passed out from exertion.

The general consensus from doctors tended to be bad eating. I never thought I ate badly, but apparently I did if I were so low on energy.

When I was 14, I started randomly throwing up. It usually happened after I ate or in the morning. My parents took me to doctors. They did tests. Nothing was out of the ordinary. They put me on acid reducers. Nothing changed. I just became known as the girl who randomly threw up. After a year of daily throwing up, my parents thought maybe I was hiding an eating disorder. I don’t fault them this. I would have thought the same thing. They brought me to a therapist. She talked to me about how maybe it was anxiety-based. I tried anti-anxiety and mediative therapies but the throwing up didn’t stop. I didn’t think I was anxious but maybe it was so suppressed that it was manifesting itself physically. After awhile I did truly get anxiety, but at that point it was really just based on the fear of never knowing when or where I would throw up next. This continued through my teen years.

When I was a freshman in college, things started to get worse. I started to get sick a lot. I had strep three separate occasions and a very bad case of pneumonia within the nine month school year. When the school year ended I went to California to live with my aunt and work for the summer. She was going to Europe and needed somebody to watch her house. Within two weeks of being there, I got a sore throat. I went to the doctor, he looked in my throat and gave me an antibiotic. A few days later, my aunt left for Europe and I got really sick. I left work early, went home, and fell asleep. I slept from three pm to nine am the next morning. I only woke up because I started throwing up. I felt exhausted. I took my temperature and it was 104 degrees. I tried medicine to take it down, but it didn’t touch it. It stayed at 104. I went to the doctor again and they gave me another basic antibiotic without looking at me. California was out of network for my insurance, and so giving them the benefit of the doubt, I think they didn’t want to run up my costs with tests if they thought it was a simple fix. After two days of throwing up and my fever not budging from 104, I called the doctors office. They told me to stick with the antibiotic for two more days. Those two days were bad. I had crazy fever dreams and started to hallucinate things. I tried everything to take my fever down. I tried taking ice baths and then sweating out the fever. The baths helped- just a little. They would take the fever down one degree for about one hour. Not very hopeful at this point, I went to the doctor again. I called my uncle to come and help me. The doctor told me that I had the flu and it would go away on its own. After we got home, my uncle called my mom and asked her to come out to California because he was at a loss of what to do with me health wise. I tried calling other doctors that were not a walk in clinic but they were never taking new patients. People ask me why I didn’t just go to the ER. The answer is, it never even crossed my mind. I was too sick to have much logic and every doctor told me nothing was wrong. I don’t believe I expected anywhere else would be different. The night before my Mom came out, I blacked out on the floor. I remember as I was trying to get up, thinking that I could just let go and die right then if I wanted to. I realized how close to death I was and how easy it was to just give up right then and let go.

The next morning my Mom came. She finally found a doctor for me that was accepting new patients. We went to his office and he was very alarmed about how sick I looked. My skin and eyes were yellow and I was emaciated. He took my vitals and blood and sent me home while he waited on the test results. He told us he would call us the next morning with them. After we left, he was very unsettled about the way I looked and couldn’t wait to send the tests out. He stayed after the office was closed and finished up the test work himself. He called my mom at eight pm to tell us to go to the hospital immediately. I was sleeping on the couch when my mom got the call. I remember being in a very deep sleep. I remember her calling me, and wanting to answer her but I was in a dream like state and couldn’t. I finally did wake myself up. I immediately knew that if my Mom hadn’t woken me up when she did, I wouldn’t have woken up at all. They did tests all night at the hospital. I was admitted at 9 pm to the ER and admitted to the hospital itself at 5 am. They didn’t know what was wrong with me, but they did know that my blood levels were dangerously low. Hepatitis was thrown around because of my yellow skin. When they ruled that out, they thought it was probably Leukemia. I had every test known to man done that night. When they finally admitted me, they let me sleep until they started another round of tests. After a week in the hospital, I was stabilized enough and I convinced them to let me go home. They told me I had to stick around in California for several weeks to monitor me before I could return to Utah. They didn’t want me to fly so when I finally was able to leave California, we drove. When I left to Utah, the doctors still didn’t know what was wrong with me, but I remained stabilized and we were waiting back on the more extensive tests. They were finally able to eliminate Leukemia.

My doctor at the Huntsman Cancer Institute in Utah was finally able to determine that I had Hereditary Spherocytosis. My blood cells were misshapen and fragile. My body had been over compensating my entire life by working double time and making double the cells to make up for the cells that were being destroyed by my body. One day it got sick of it and started shutting down, which was what led me to being hospitalized. My spleen was grossly enlarged from the endless blood cells it was destroying thinking they were sick blood cells. My spleen being eight times the size of a normal one, was pushing against my organs, displacing my kidneys and pushing into my stomach, which was what caused me to throw up for years. I was yellow from the bilirubin which is produced when a blood cell is destroyed. They removed my spleen several months later along with my gallbladder which was irreversibly clogged from the excessive amounts of bilirubin in my blood. This surgery removed most of my problems.

Today there are still things that I need to do to keep up my health, but for the most part I live a very normal life.

I was very curious, as was my doctor who diagnosed the blood disorder, how this could have gone undiagnosed for 19 years. I called every doctors office I had ever been treated at and had them fax over all my records. Every test they had ever done. Every scan.

I looked through them. When doctors take your blood they usually do a complete blood count which gives you your hematocrit (your blood level), your iron levels, your reticulocyte (how many new blood cells your body has), and etc. In every CBC I had since I was born, my blood levels were ridiculously low. Normal for a woman is 39-44. Mine was never over a 30 until after my spleen was removed. I had a few scans done, and in the reports on the scans, it was reported every time, spleen is very enlarged. How did not one, but 10+ doctors never pick up on this? I was lucky that I was okay, but I can’t get over how it was not discovered. I am very picky about the doctors I choose now for me and my children. Mostly, I can’t get over how lucky I am to have survived what I did, and be able to be where I am in my life today. I can never take for granted what I have been given a second chance at.


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