how it all started and my journey thus far

I am starting this blog to keep my family, friends, and anyone interested in whats been going on with me over the past year.

People always say that your life can change in the blink of an eye, but you never think that yours actually would. Well, for me, mine did. It was February 10th, 2015, I woke up feeling very sick and weak, almost as if I had the flu. I hadn’t been feeling good the past couple of days but I just thought that I had some kind of bug and it would go away. My mom decided that I needed to go to the doctor to have them check me out. At my appointment the doctor noticed that my eyes were slightly jaundiced (when the whites of your eyes turn yellow). She had asked me if I ever noticed this happen when I would get sick and I never did. She decided to draw some blood, run labs, and send me home with antibiotics. The next morning we got a phone call from her saying that we needed to go to the hospital immediately because my liver enzymes were very high. I was scared shitless and so many thoughts about what could be wrong were running through my mind. I had no idea what liver enzymes being high meant. The only other time I had ever been to the hospital was for a broken wrist in fifth grade. I spent the whole day having test done. I ended up being admitted and stayed there for what seemed like eternity but was really just 2 weeks, but the worst 2 weeks of my life at that time. I was spiking fevers that were up to 103, had the worst headaches, couldn’t stay awake, and could barely eat. The doctors eventually diagnosed me with Mononucleosis, aka the kissing disease. When a person gets mono their liver and spleen get enlarged and usually recover once the persons mono goes away. Mine never did. It only got worse and worse.

Once my doctors realized that my liver was not going to recover from this they tried to figure out a plan as to how they could help it. I was probably put on a few medications. I honestly don’t remember much of the beginning of all of this. I was in denial and tried to blur a lot of it out. The meds weren’t helping.

It’s now summer going into freshman year of college. I was at a routine liver checkup when my doctor told me, my mom, and my dad that he thought it was best that I be put on the liver transplant list because my liver was so bad that there was no way of healing it or fixing it, only keeping it stable until I could get a transplant. This was the hardest thing that I had to ever hear. I never thought in my life that I would have to go through something like that. That night my family and I had a discussion about it and decided that it would be the best thing for me to do. So, we went through the process of being put on the list and about a month later I was listed.

When you get put on the liver transplant list you receive a MELD score. This score determines where you fall on the list and is based on lab scores. The higher your MELD score is, the better the chance you have of getting an organ sooner, the lower the score, the less likely chance you have of getting one. Scores can go up to 40 and mine started out at a 16 so I didn’t crucially need one and fell pretty low on the list. I continued on with my life as I normally would have and attended my freshman and sophomore year of college, although throughout this time my liver got worse causing my score to increase.

Fast forward to my junior year of college. I had just moved into my sorority house and was so excited to be living with some of my closest friends and to start the school year. It was about 2 weeks into the year when I had noticed that whenever I would walk up the stairs or to class or from my car to Kappa that I would get so winded so fast. I just thought that I was really out of shape. But then I started to not feel well. I told my mom who then told my doctor and I was told to go get labs drawn right away. The labs came back a couple hours later and they were critically high. I was admitted to the hospital that night, September 7th, 2018. I remember the doctor who was on service that night came and saw me and said “We are going to figure this out fast and you should only be here for a couple of days.” That was false, I ended up being there for a couple of months. The doctors couldn’t figure out what was wrong with me…again. They ended up diagnosing me with Pulmonary Cryptococcus, an invasive fungal infection in the lungs. It got really bad. I had to completely withdraw from school. During the two months in the hospital I spent most of my time in the ICU. I was put on a c-pap machine so that I could breathe, couldn’t get out of my bed…even to go to the bathroom (yes, I had to use a bed pan), wasn’t allowed to eat or drink anything at all because of the c-pap machine, and I even had my mom and nurses brushing my teeth for me because I was too sick and weak to do it myself. There were times that I thought I was actually going to die. I had lost all of my muscle and now only weighed about 80 pounds but things ended up getting a little better. I was taken off of the c-pap machine, was able to eat and drink again, and was even taken out of the ICU and brought back down to my normal floor, A4 North. After another week or so I was starting to feel a lot better and in my mind was ready to go home. The doctors thought otherwise. They still thought I was too weak and sick and didn’t think going home would be the best thing for me. They thought that I should stay in the hospital until I get a transplant. I absolutely did not want to do this because you never know how long you are going to be waiting for one and I had already been waiting for over 2 years and at this point my score was like a 27 or 28. Well, it’s a good thing they didn’t send me home because I started to get really sick again. My kidneys started to take a hard hit from how sick I was. I was started on dialysis in hopes that they would recover so that I would not need a kidney transplant as well. They were not getting better and I was sent back up to the ICU and my MELD score ended up increasing to a 35 and I was now listed for a liver and kidney and was told that both surgeries will happen at the same time and both organs will come from the same donor.

October 10th, 2018, 10:30pm, my mom and I had just turned off the TV for the night. Her phone started ringing and she answered by saying “Hello it’s Andrea.” She never answers the phone like that unless its a number she doesn’t know. I had a strange feeling about this phone call and for some reason was scared but still had a smile across my face. I kept trying to mouth to her “who is it??” But she just kept ignoring me. She hung up the phone and said “You got a liver but they couldn’t get the kidney.” I broke out into tears of joy. I just thought “Wow! I am going to be healthy again and be able to go back to school and everything is just going to go back to normal.” The next thing I know all the nurses are in my room hugging me and saying how excited they were that I was finally getting transplanted and then they started prepping me for surgery. I went into surgery at about 6:30am on October 11th, 2018. Going into surgery I was so scared because this was the biggest thing to ever happen in my life and I had absolutely no idea what to expect when I got out. The surgery lasted about 8 hours and everything went smooth. When I finally slightly woke up I was back in my room and my whole family was there. I wasn’t able to talk because I was very drugged up and still had a breathing tube in. I tried to communicate with my family and nurses in sign language because that was the language I took my freshman and sophomore year at UC but obviously none of them knew what I was trying to say. I remember getting super frustrated with them because they didn’t understand what I was saying. I somehow managed to tell my sister that I wanted a piece of paper and a pen so that I could write down what I wanted to say. She got a pen and paper and the first thing I wrote was “are my eyes white yet?” Over time, as my liver got sicker, my eyes and skin got more and more yellow and by the time I was transplanted they were extremely yellow. She just laughed and said “no, not yet, but they will get there.” The next thing I wrote was “I’m bored.” I mean how could I be bored and frankly want to do anything? I had literally just come out of a liver transplant!!

After just a few days I was feeling like a whole new person. It was the best feeling ever. Although, I was still on dialysis and hoping my kidneys would soon recover, I felt better than I had ever felt in a long time. It was just 9 days after transplant and the plan was for me to get discharged. I had dialysis that morning and when I was going back up to my room from it, the patient escort was asking me and my mom how long we had been there and if we had plans of getting discharged soon. We were both so excited to say that we were going home that day, considering we had been there for a little over a month now. We got back up to the room and one of the nurse practitioners walked in and had bad news…we weren’t going home. She told us that throughout the night my blood pressures were really high which can be signs of complications that can come after transplant. The plan was to start me on a blood pressure medicine and watch me for few days. I started that and my blood pressures got better but then I started feeling sick again. I had more tests done to see what wrong and they found that my hepatic artery leading to my liver had closed off so my liver wasn’t getting all the blood it needed. Doctors told us that this could happen and that sometimes the liver can find other ways to get the blood to where it needs to go. They also saw that some of my bile ducts were narrowed causing bile backup which made me nauseous, febrile, and just feel like shit. They said that they could fix that by placing stents in the bile ducts to help widen them but they would have to be exchanged every couple of months. I ended up going through with this surgery and it was helping for a little bit but then I started to get sick, throwing up, feeling nauseous, weak, and having a lot of pain. Doctors told me that the other options were to keep putting in new stents, but that meant more surgeries and more often, or to have a PTC drain placed. A PTC drain is basically a drain that goes into your liver and comes out on your stomach and is connected to an external drain bag that collects bile. I absolutely did not want that. I just kept thinking about what it would look like and couldn’t get past the thought of having a bag hanging off of me. I eventually decided that this would be the best option and that I should go ahead with it and if I got no relief I could have it removed and go back to the stents. So far the drain has given me some relief but I still continue to go from being in the hospital to being at home quite often just due to other liver complications that can’t be fixed until I get a new liver. The longest stay I’ve had at home since September is 3 weeks.

Right now, I still go to dialysis on Monday’s, Wednesday’s, and Friday’s and then have home health care visits every Thursday and Sunday. I’m hoping to go back to school in the fall but will be doing all online classes. I’m changing my major from speech pathology to nursing. After being in the hospital as much as I have, I think I could bypass the nursing exam and become a nurse now. For now I am just patiently waiting for the call that they found a liver and kidney for me.

I will try to routinely update this with how I’m feeling. I wouldn’t be able to go through all of this without the support of my incredible friends and family. Feel free to leave comments or questions on the “about” page and share my story!

Remember to always be brave and donate life!

XO,

Katie