Some people are born sick and even if the issue is fixed, like mine, there seems to be continued illness throughout their lives… Statistically that is. I was born with Patent Ductus Arteriosus (PDA) also referred to as “blue baby”.

Patent Ductus Arteriosus (PDA) is a persistent opening between the two major blood vessels leading from the heart. The heart problem is present from birth. That means it is a congenital heart defect. An opening called the ductus arteriosus is part of a baby’s blood flow system in the womb.

Mayo Clinic CON-20376123

As you might expect the condition presents many challenges for both the child as well as the parents. I was also very small, so the challenge period was lengthy. The procedure to fix my PDA could not be completed until I had gained enough weight to undergo the surgery. This wasn’t until I was 18 months old!

My poor parents had to keep me from crying, running, yelling and a host of normal toddler activities. My parents accomplished this creatively by doing things like buying me a train toy that was like a roller coaster, because I couldn’t petal. To my greatest benefit, my dad taught me to read at a very young age as well. Even after surgery I was very restricted and had a murmur until I was 12. By the time I was 5 years old I was reading Steinbeck. No complaints, this has served me well in my lifetime.

After my murmur finally resolved I was pretty normal until my junior year of high school. It was then that I suffered my first “crisis” and was admitted to the hospital. I was admitted because I could not stay awake, nor keep even liquids down, much less food. The doctors had no idea what was wrong with me. I had non-viral hepatitis, fevers, vomiting, muscle pain and fatigue. They even had me in quarantine with a big warning on my door and all people entering in full protective gear. Pretty scary. They actually told my parents they were concerned I might not pull through.

This hospital stay lasted 8 weeks. Finally, an infectious disease specialist Dr. Gopal, from Deaconess Hospital in Cleveland came to see me. He examined me and was baffled as well… However, he sent my blood to the infectious disease lab at the CDC in Atlanta. They isolated a virus called Epstein-Barr Virus (EBV), which explained most of my symptoms. They treated my symptoms and I was finally released.

Epstein-Barr virus (EBV), also known as human herpesvirus 4, is a member of the herpes virus family. It is one of the most common human viruses. EBV is found all over the world. Most people get infected with EBV at some point in their lives. EBV spreads most commonly through bodily fluids, primarily saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses.

CDC – National Center for Immunization and Respiratory Diseases

I recovered fairly well, was back to school & the everyday activities of a teenager. Other issues would arise…

Following the EBV I continued to have muscle pain, especially because I was so active in sports & hobbies. A wonderful ortho surgeon went in to my knees and fixed the cartilage in my knees several times, which helped some and I lived a mostly normal teenage life.

Then, another “crisis” landed me back in the hospital, this time in the ICU my senior year. The symptoms were much different including trouble breathing, extreme muscle pain & weakness, fatigue, fever and blurry vision. After 6 weeks in the hospital I was better with no discernable treatment… It just went away.

In my early 20’s the fatigue, muscle pain & weakness had gotten pretty debilitating. During this time I had literally tons of testing, saw 3 rheumatologists, 2 neurologists, a hematologist and of course my general doctor. I was diagnosed during this faze with several disease which I don’t have such as Lupus & Celiac Disease. Honestly, the doctors were stumped.

Even though the doctors were stumped, they were doing their best to treat my symptoms. I was given steroids, joint & muscle injections and anti-inflammatories. These things all helped me, it was not an answer, but it helped me live my life. This continued for about 15 years, then my symptoms starting getting really bad.

In 1994 I had a “crisis” where I could not move. In fact my brother had to come to my house & carry me to the car to go to the hospital. I was hospitalized for 3 days and released when the symptoms subsided. Still no answer, the doctors were baffled.

Then in 2001, I had another “crisis”, this time I was basically catatonic. My husband took me to the hospital. After several hours in the emergency room the catatonia resolved. However, I was now having trouble breathing and a new symptom, I couldn’t see. I was not hospitalized this time and after 18 hours in the emergency room my symptoms finally abated.

During my 20’s & 30’s I suffered through the symptoms of muscle pain, weakness, blurry vision, fevers, digestive issues and more. I really thought is was BAD… But it wasn’t, not yet.

Stop back to read my next post in this series Living Without Diagnosis… It’s way too much information for 1 post!