The morning of January 19, 1991 started tenuously with my usual bout of morning sickness. I was in my 24th week of pregnancy with my first child. Unfortunately, this particular morning did not get better as was the usual case, in fact it became the worst day of my life.
By noon I was in the emergency room of my local hospital with severe abdominal pain. At midnight I had progressed to a critical state that required emergency surgery. Later that next morning I emerged from the operating room in serious condition, sans 90% of my digestive system, and my son. I had suffered what is known as a malrotation of my small intestine that led to a volvulous. Essentially what had apparently happened was that a small portion of my small intestine flipped over that morning while I was getting sick during my pregnancy morning sickness, which then restricted the blood supply to that portion of the intestine. The swelling from that portion of the intestine then gradually over the next few hours restricted the blood supply down the length of intestine until the surgeon was able to relieve the pressure. Unfortunately, by that time 90% of my intestine had died and therefore had to be removed.
So then how does one eat when they have no intestine? Well, you don't. Any and all substances that actually made it into my digestive system made a fairly quick exit. So for the next 10 years I lived hooked up to an IV for about 12 hours each day in order to receive the proper nutrients and hydration that I needed to live. This is the time in my life that I decided that I no longer wanted to pursue a degree in music education, and instead went back to school to become a dietitian (after a period of recovery). And yes folks dietitian is spelled with two t's not a 'c':) My goal was to work with patients who were like me and could not eat for whatever reason.
Then comes the next phase of my life. Apparently the IV nutrition (called TPN for total parenteral nutrition), can cause liver cholestasis, aka. fatty liver. There are several things that can be done with the TPN to sometimes reverse the disease or at the very least slow down its progression. For me, we were able to slow down the progression for a few years, just long enough for me to graduate. Actually, I still had one class left to take in order to complete my degree, but unfortunately I was unable to finish the class (the school was kind enough to grant me my degree without the class). So in January of 2000 I was hospitalized with severe liver disease. At the end of February, I was sent by a medical jet to the University of Nebraska Medical Center in Omaha in serious condition.
After a bout of pneumocystic pneumonia, and eventual total kidney failure, I was placed on the UNOS list to wait for an organ donor. I have to say here that the hardest part of this entire process was not that I was dying, but knowing that in order for me to live someone else had to die. I still struggle daily with this concept.
Tomorrow I will blog about my organ transplant and my incredible daily life as it is now:) So stay tuned...it get much happier:)