The last few months, I have not been able to keep anything down. I live on watered down pedialyte and crackers, and yet, I throw up multiple times a day. I have been like this since the beginning of April. Because of malnutrition, I am weak, I’ve lost weight, my hair is starting to fall out, and my disease is progressing quickly. I’ve made the decision to start total parenteral nutrition (TPN).
TPN is a type of nutrition that will go through my central line directly into my bloodstream. It contains all the vitamins, carbs, fat, and protein my body needs to function. TPN can have a lot of complications, so it’s not a decision I jumped right into. But my body is starving and can’t last much longer like this. After months of feeling like total crap, I am now excited to start it because I’m desperate for any relief.
On Monday I will be admitted to the hospital to start it. In the beginning, it will throw off my body a lot. I will feel worse, but eventually I will feel better. There are a lot of possible complications though. I will need bloodwork run 2x a week the entire time I’m on TPN. It will affect my liver, gallbladder, and blood sugar. There is also a risk of infection, which ultimately can lead to even worse complications. But I have no choice but to try TPN at this point. My body is falling apart and it’s scary.
I have a lot of hopes riding on TPN- the biggest hope being that my disease progression not only slows down, but I gain some of my movement back. My body is so weak that it’s harder than ever for me to move. Personal care is extremely difficult. Transferring into my wheelchair and pushing myself 50ft to the bathroom and back takes so much energy out of me that I have to rest after. Getting out of the houses to get to doctors’ appointments is the hardest part of the week. It takes so much out of me that I have to rest the whole next day. This is no way to live.
I really think that TPN will be life changing. It will give me the energy I need to live my life. But I wonder if I am hanging too much hope on it. What if it doesn’t live up to my expectations? What do I do then? Honestly, I don’t have a plan B in place. I guess all there is left to do is pray that TPN works.