Thursday, May 31, 2007

On being considerate...

Please allow me to rant for a moment. The subject of my rant is in regards to people being considerate of other's whose situation may be different. I consider myself a tolerable person in that I am aware that I may not know all the factors in regards to an individuals decision process, therefore allowing for some reasonability in what seems to me to be an idiotic decision. I am also aware that most people do not do the same for whatever reason, although I do believe the primary reason is selfishness (oops, there I go being judgmental and assuming).

Case in point, the guy with TB. Granted he made the decision to continue his honeymoon plans based on his assumption that he was fine because he did not feel sick. Sure, this healthy young man did not feel sick, but what would someone like me who is immune compromised feel like if I contracted the disease because I sat close to him on the plane? I'm guessing here, but considering that I and others like me are not "healthy", we would likely get sick rather quickly, and possible die as a result.

There is question as to whether the type of TB he has is transmittable, but if it isn't then how did he get it? And does it simply seem as though it isn't trasmittable based on the fact that his young, healthy bride, who had the most contact with him, did not also get sick? Could he have possibly transmitted it to someone less healthy?

Whenever I fly, I always wear a mask, from the time I set foot on the plane until I disembark. Yes, I may look a bit odd, and I do get a few glances from the other passengers, but I do it anyway because it keeps me healthy. I do admit to being a little on the side of the "germ-aphobic", but it is for good reason. I am aware that there are other people who do not take into consideration that there is a possiblity of transmitting their disease to others, and I'm not really sure they care. Sure, its just the flu, cold, TB, etc. everyone gets it, so what's the big deal right? I have to go to work, school, the store, on my honeymoon, etc., so what if someone else catches it, big deal? They don't even think about the fact that someone else's situation is different. Some of us aren't healthy enough to fight off these "bugs", and as a result our lives are in jeopardy.

One time a few years ago I caught the flu. I spent three weeks in the hospital, 10 days on a ventilator, and another month recovering at home. Why? Because a simple case of the flu turned into another bout of pneumocystic pneumonia because my immune system could was too weak. Pneumocystic pneumonia exists all around us, but 98% of the people who come into contact with it never develop symptoms because their immune system is able to fight it off. Contracting the flu weakened my immune system even further than it already was, thus providing an opportunity for the pneumonia to multiply and spread.

So the lesson for today is to be considerate of others. People are different, they have different situations going on. Be respectful. Just because you are sick and will get better, doesn't mean that the person next to you in the grocery store, or at work, or wherever will do the same. You don't know what that other person has going on. Just because my immune system isn't very good, doesn't mean that I should stay locked up in my house to stay well. I take precautions, I wear masks when appropriate, I was my hands many times a day, I use hand sanitizer, I don't touch my face, etc. But it is my right to be out in public without risking my life. And really, how bad would you feel if you found out someone died because you spead your germs?

Wednesday, May 30, 2007

Second Chance - Part 2

The morning of May 1, 2000 started just like usual, or so I thought. Unbeknownst to me, in the early hours of that morning two of my doctors had flown to the east coast to retrieve the organs that would save my life. Around 10 a.m. I woke from a nap to find all of the nurses assigned to floor I was on, plus others from other parts of the hospital and some that worked other shifts, surrounding my bed. I could see that many of them were crying, and immediately I knew why. My new organs had arrived.

It sounds a bit odd, but instead of being excited or even scared, I was actually quite calm at the prospect of surgery. I was so calm that I managed to return to sleep rather quickly. A few days earlier a content, soothing, confident feeling had come upon me, and I knew that I would survive whatever happened. So this particular morning was of no real surprise for me, I had no doubt that it would happen, and no doubt that I would survive for years to come.

The surgery didn't go totally as planned. At one point I lost blood pressure for several minutes, but my surgeons kept going. I had one of the best transplant surgeons in the country heading up the team, and he was able to work past several obstacles in getting the new organs situated and working. Although he admits that it was a little disturbing for him after he had removed all of my abdominal organs, seeing the open cavity, and realizing that the space he had to work with would just barely accommodate all that had to be put back in. But, with skill and a little creativity he managed to get the job done, and by early morning of May 2, 2000 I had the liver, kidney, pancreas, and ten feet of small intestine from a six year-old little girl that had died just the day before.

I have no memories of the two weeks following the surgery, which is a good thing. They decided to keep me in a drug induced coma because of the suffering I would have encountered from the surgical pain, and the side effects of the massive doses of immunosuppresants and steroids that kept me from rejecting my organs. Although, when I did wake from coma, I still encountered the worst pain I had ever experienced in all the 10 years since the original bowel resection. Just imagine the discomfort of a bad case of stomach virus complete with cramping and nausea, then magnify that by 10 times and then you have an idea of what it was like. And on top of that, I had the shakes caused by the immunosuppresants that was so bad that the bed I was laying on would vibrate across the hospital room and had to be moved back into place every few hours. Although I was so grateful to be alive, I felt like I was living in pure hell.

We eventually began to look for things to celebrate. I had been down to the depths of hell, and now I could finally see the light at the end of the tunnel. Each little milestone was a step toward that light. The first step was the small amount of urine that my new kidney had made. I never thought that I would celebrate being able to pee again:) Then my gut started moving gas, again I never thought I'd be so happy to pass gas:) We even called my friends to share the good news:) A major milestone was the day I was able to sit up in bed unaided for one minute. Keep in mind that I'd not been able to do so much as use the tv remote for months, much less be able to sit up by myself.

So little by little I got better. I had to learn how to do things all over again. Just simple things like feeding myself, walking, writing, etc. had to be re-learned. Through it all, my Dad stayed by my side. In the seven months we were in UNMC, Dad left only twice for a total of one hour. He slept in a chair beside my bed with his hand on my bed so that all I had to do was move my hand a few inches to touch his if I needed anything. He left my bedside only for short periods of time, and only if I had a nurse or someone else he knew that would care for me and call him if anything happened. He learned how to program the IV pumps, the dialysis machine, and the ventilator. At one point, after another surgery to wash out an infection that had developed in my abdomen, I accidentally sneezed and ruptured the large wound in my belly. Then Dad had to learn how to pack the wound and change the dressing on it two times a day for the next year while it healed from the inside out. He also learned how to care for and change the ostomy bag that the surgeons had created so that they could easily check on my new gut. He took care of me and never questioned his place in it all. It was a responsibility he took totally upon himself and never asked for help from anyone. I think I have the best Dad in the world:) I am not ashamed to say I am a Daddy's girl, but how could I not be? :)

I just celebrated my seven year anniversary this past month. It is hard to believe that it has been seven years already, where did the time go? I have had a few more surgeries, including having the ostomy removed, and having both hips replaced two years ago due to osteopenia that resulted from my poor nutrition and lack of weight bearing on my hips during my illness. It has been a long and difficult journey, but I am finally at the point where I can start to live a relatively "normal" life. I still have problems with short-bowel syndrome, and I have to eat a huge amount of food in order to maintain my health. Most adults have close to 30 feet of intestine; I have only 10 feet, so I must eat a lot of food, drink at least a gallon of water each day, and take large doses of vitamins each day in order to stay "healthy".

This time last year I was contemplating the meaning of my life. I just felt like I was still alive for a reason. I had spent the last five years waiting to die, but never did. There are just a small handful of people who have endured a multiple organ transplant that included the small intestine that have lived beyond five years. (The transplanted intestine is very susceptible to sudden unexplained rejection, more so than other organs because it is so heavily involved in the body's immune regulation.) But more than anything else I felt that I needed to do something with my life that would be worthy of this wonderful gift that had been given to me. So, I made the decision to go back to school with the idea that I might try to eventually go to medical school.

Going back to school with the goal of medical school seemed like a ridiculous idea at the time, but I felt motivated to push myself to the limit and try. This past Spring semester I tested myself by enrolling full-time taking three of the most difficult courses in the pre-med curriculum; physics, statistics, and organic chemistry. In all my years in school, this was the hardest semester I have ever had, and I actually had fun and did well. So now I am convinced that becoming a doctor is what I am supposed to be doing. It just feels right. And guess where I plan to apply? UNMC of course:) ! Where else would I go? Omaha has become my second home, I really like it there. Plus, it is a good place to move forward with my life while still being close to somewhere that can care for me if I should become ill. The only drawbacks are that medical school is expensive and I don't know yet where I'll get the money, I'll be moving away from my Dad (he's nervous about the idea of me moving 600 miles away), and now after so many years of being alone, I have a special someone that I don't want to leave. But I know that things are never easy in this life, and the "big picture" is what really matters.

Tuesday, May 29, 2007

Second Chance

Birthdays are special events for me. To me, another birthday means that I've lived another year, and that is definitely special because I never thought I'd live this long. I celebrate two birthdays, March 5th is my birth day, and May 1 is my second chance day.

It's hard to talk about my organ transplant sometimes because the memories are so painful. But I think it's important for other people to know what it's like to be on the receiving end so that they can understand why it's so important to commit to being a donor at the end of their life. There are currently over 96,000 people listed on UNOS ( as waiting for an organ transplant. In March of 2000 I was one of those people.

My liver had been gradually getting worse since the summer of 1995. Still, I managed attend most of my college semesters full-time. In December of 1999 I finished my last full semester and was looking forward to the following semester with just one class left for my degree in Dietetics. I was already suffering the effects of severe liver disease; jaundice, swelling, exhaustion, etc. Then one night in January after I had brushed my teeth before going to bed, my gums started bleeding and wouldn't stop. I tried for several hours to stop the bleeding myself, even falling asleep for a little while, but when I started throwing up large amounts of blood that I had swallowed I knew that there was no way to avoid the inevitable. When Dad and I left the house in those early morning hours I had no idea that I wouldn't return for eight months.

I spent the next month at the local hospital where I knew most everyone on staff. On one hand I wished that they would release me so that I could go home and sleep in my own bed with my cat, but on the other hand I knew enough about what was going on that I was terrified that they actually would let me go. But I missed Remi terribly, he was my comfort amidst the pain, and he was alone with only an occasional visit from Dad and my neighbor who was feeding him and keeping an eye on him and the house.

My condition continued to get worse. My kidney's began to fail. One funny thing in all of this is that the night before they diagnosed me with kidney failure some of my friends "snuck" me out of the hospital in a "stolen" wheelchair to attend the Lynard Skynard/ ZZ Top concert. We had purchased the tickets months before, and I didn't want to miss what we all thought would be the last big fling of my life. I had so much fun even though I was in pain:) Do I have great friends or what? :)

Then just a couple of days after the concert, my doctor stuck his head in the door to my room and told my parents it was time to go. What?!! Go Where?!! He had arranged to have me flown to Omaha, Nebraska to be admitted to the one of only two hospitals in the country that could perform the type of transplant that I needed to survive.

The University of Nebraska Medical Center was definitely a culture shock to me and my parents. We came from a small hospital with a staff that we all knew, to a very large hospital where we knew no one. My immediate thought was that I just wanted to go home, but they wouldn't let me go because as one of my doctors later told me, they knew I would not live long enough to see my home again if they didn't make me stay, I wouldn't survive the trip.

I don't remember too much of the first few weeks at UNMC. I not only had severe liver disease and kidney failure, but now I had pneumocystic pneumonia. I do remember waking up sometime shortly after I had arrived, and I was laying flat on my belly with a ventilator tube stuck down my throat. I was in severe pain, and scared, and I cried because I wanted to go home so badly. My nurse tried her best to calm me, I still remember it all so vividly. But instead of calming down, I just got mad. And I stayed mad, and as a result I stayed alive through it all. I got mad at being sick, mad at the world, mad at God, and mad at myself. Within the anger I found strength.

My days at UNMC before the transplant were spent enduring endless tests, physical therapy, psychological therapy, numerous IV changes, dialysis, and doctor after doctor after doctor. I can definitely say that I wasn't ignored, in fact I was never alone. Oh, how I longed for some peace and some rest. Unfortunately, the only time I was given some peace was at night. Then came the endless nightmares. Liver disease causes some people to see things that aren't there, say and do things they wouldn't normally do. For me, it gave me horrid, vivid nightmares, so I began to hate the night and the peace that I longed for during the day. During the times when I was well enough, the night nurses would wrap me up in either a wheelchair or a gurney and Dad and I would roam the halls of the huge hospital until I was sufficiently exhausted. Those were fun little excursions:) Just me and Dad:)

The days eventually added into months, and I progressively got worse. Because of the knowledge afforded me by my education as a dietitian, I knew just enough to know exactly what was happening to me. I knew I was dying, and I could see my parents dying inside feeling helpless to save me. The liver disease had progressed to the point where my skin and eyes were not yellow from jaundice, but purple and brown. I never looked in a mirror to see my face because I didn't want to see the creature that I knew would be staring back at me. It was enough to see my purple hands that were swollen to the point that I could no longer flex my fingers. My skin was stretched to capacity with the 100 lbs. of extra fluid that I carried. I was no longer able to hold my head up, or even use the remote to turn the channel on the tv. Living had become exhausting. I was not far from death and I knew it, yet at the same time I wasn't willing to give up. I somehow knew that it would all get better.

Sunday, May 27, 2007

The "Accident"

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 get much happier:)


Saturday, May 26, 2007

My very first blog!

Since this is my first blog, I should probably say a little something about myself. Well, and if I don't explain my history you may be confused about why I blog about certain topics.

I am a nearly 40-year-old woman who has just returned to being a full-time student. My first "almost" degree was in music education, but that got derailed when I had an "accident" that caused me to lose 90% of my digestive system (more on that later). A few years after the "accident", I returned to school and actually did receive a Bachelor's of Science in Nutrition and Dietetics. However, immediately upon graduation I had to have a four organ transplant (again, more on that later), and so I never got a chance to use my education in the field of dietetics. So now, with the myriad of medical issues that I have been blessed with, I feel the intense desire to return to school yet again, this time pursuing a degree in medicine. Actually, to be more specific, my goal is to be a Gastroenterologist working specifically with people who have short-bowel syndrome and also those who are pre/post organ transplantation (mostly intestinal and liver transplantation).

My plans for this space are to blog about my crazy, hectic, and slightly masochistic life; as well as nutrition (which has now become something of a hobby), and medicine. You can expect to see a lot about organ donation, and my life as an organ transplant recipient. Did you know that the easiest way to become someones hero is to sign an organ donor card? My hero is named Zoe, and it was her parents that made the choice that saved my life.

I'll post more about me later, getting more specifically into the "accident" and what caused me to need a multiple organ transplant. Thank you for joining me in my new adventure:)