the changes

Sorry it has taken me a while to post another blog. I’ve been in and out of the hospital quite a few times so I haven’t been able to write.

Growing up I never would have thought I would be where I am today…I don’t think anyone would. Over the past year I have endured A LOT of changes both physically and mentally.

THE PHYSICAL CHANGES

My whole life I always played sports and was very active. When I started to get sick, my junior year of high school, a lot of that changed. I had to quit playing volleyball, was not allowed to snow ski due to my liver being enlarged, and was tired, literally all of the time, making me not want to do anything although I was still strong and capable to do most things. When I went into the hospital in September of 2018 I weighed about 105 pounds. After spending some time there I noticed that I was losing a lot of weight and muscle and fast because I wasn’t getting out of bed much or doing much activity. I worked a lot with the physical/occupational therapy department to try to keep the muscle that I had left. Then the really bad times came. When I was in the ICU, I was pretty much bedridden. I was too sick to get up to even go to the bathroom and didn’t want to eat anything. My weight started to decrease drastically. Suddenly, I weighed about 90 pounds. I was put on a supplement called TPN and lipids which is basically just calories and fat given to you through an IV. I was on this for 24 hours a day 7 days a week. It wasn’t really making a difference but I was kept on it so I didn’t dwindle down to nothing. After transplant, I was doing great! I was eating on my own, walking around the halls, and gaining weight and muscle back. Once I started having complications though, everything changed. I started to feel shitty again making me want to sleep all day and not eat anything. The days kept passing by and I eventually weighed only 82 pounds. I was skin and bones. I could hardly do anything on my own. For the most part, I was only able to get around in a wheelchair. Although, there were some days where I felt strong enough to walk with a walker.

I started working with a dietician and she told me that I needed to be eating at least 3,000 calories a day. If you asked me to do that a year ago I would have no problem doing that but at this time I thought it was nearly impossible. She was having me drink these shakes 3 times a day and they were each 425 calories. They were the grossest things I had tasted. I knew I had to drink them so I just tried to get over the taste. Eventually I just couldn’t stomach them anymore and refused to drink them. The only other way for me to keep getting the calories and vitamins from the shakes was with a feeding tube. I was totally against it. I did not want to have a tube up my nose. I just knew how many stares and questions I would get and that’s something I wasn’t ready to handle but I was eventually talked into it. I was doing feeds every night for a few months. They were really helping me gain weight but I still hated having a tube up my nose. It was one of the most uncomfortable and annoying medical devices I’ve had but luckily it’s gone now!

Today, I weigh about 92 pounds. Although, I do feel myself getting stronger every day, I still struggle doing a lot of simple things like getting up the stairs, walking long distances, and lifting things more than like 10 pounds. I actually fractured my back a few weeks ago lifting a baby!

I’ve also noticed changes in my appearance. Dialysis puts a lot of stress on your body. One side effect of the stress is hair loss. Let me tell ya….I have lost a ton of hair. I used to have extremely long, thick, and luscious hair. My hair has started to fall out rapidly and I now have short and extra thin hair. It’s so thin now that I can only wear it in a bun to cover the bald spots and spottiness. I’ve also lost all the muscle in my legs. My legs are little chicken legs. My thighs are about the same size as my calves. I also have a little puffy belly, that I think makes me look like I’m 5 months pregnant, due to fluid build up. Since my kidneys don’t work anymore my body cant process the fluid I intake so I don’t pee, therefore, I get fluid build ups, hence why I need dialysis. Because of all these changes I’ve become really self-conscious. I’m always worried about how I look. Do I have bald spots showing? Does my distended stomach make me look fat? I hate that this has become such a problem for me but I always try to remember that all of this is just temporary.

THE MENTAL CHANGES

Being in the hospital for a long time gets really boring and depressing. The hospital tries to do their best to try to keep you happy and entertained with activities like crafts, board games, and just chatting with you. I often found myself in times of depression. Going from living a mostly normal life of a 20 year old college student to living in a hospital in the blink of an eye is not something I knew how to handle. I started missing out on things like Greek life events, going out, and just hanging with my friends all the time. I think social media played a large part in me becoming depressed. I was always seeing my friends post instagrams and snapchats of them having fun and living a normal life. I started to become unhappy, sad, bored, and lonely. Even though someone was constantly with me at the hospital, I still felt lonely. I never wanted to talk to anyone, get out of bed, or be awake. I often cried myself to sleep because I never thought I was going to be better, that this nightmare wasn’t going to end. During times like this, I wondered what the world would be like without me and if I was just…..gone. I have never told anyone that. Wow. My doctors and family noticed these changes in me and decided to put me on Cymbalta which is an anti-depressant. I took it for about a week and started to notice that my mood was way better and I was kinda happy again. I started having bad side effects from it so I stopped it and my mood started to slip again. I didn’t want to take any medicine to try to help me because of how the first one made me feel. I tried to just think about the light at the end of the tunnel and that all of this would be over soon. Once I got home, my happiness was starting to come back. I was able to get out and do normal things like going to the grocery store, out for food, and just outside in general. Since I did not like taking the anti-depressants, I somehow convinced my dad to get me a puppy….I know, crazy. I told him I would make him my therapy/emotional support dog. So, in February we drove to Alliance, Ohio and picked up my new best friend, Noodle. He gets to come to hospital when I’m inpatient and he acts like he owns the place. Although he is not very well trained, he is the cutest little boy and you cant get mad when he does something bad.

I always try to think that I am still extremely blessed even with the hardships I face everyday. I am lucky enough to have a roof over my head, food always in the fridge, and family and friends who love and support me. I now always remember that there are people out there who have it far worse than me, both medically and in general. Always be thankful for everything you have, even if it’s not much, and stop taking the little things for granted.

Currently I am still waiting for a liver/kidney transplant. I am still working on getting stronger. I have started classes again and even changed my major to nursing. Someday I hope to be as good of a nurse as those who are treating me everyday.

Noodle comes for a visit!

Remember to always be brave and donate life!