An Eventful Week

The week of September 21st was an eventful week. 

On Monday, I was commended by my treatment team of doctor's for how hard I have been working and how much progress I have made in this program since my admission. They told me I have been doing AMAZING since I got here: abiding by all protocol, never saying "No" or "I can't," choosing a variety of foods, participating in group sessions and everything we're required to do and truly making every effort to get well.   

I recognized that they are likely not used to hearing anyone say "I'm pretty much lactose intolerant right now, how can you get my body digesting it again because I WANT to be able to eat dairy." I remember the exact words my doctor said when I asked about having dairy again: "you go girl!" I came into this program feeling like I was blindsided. I was told I couldn't stand up, I can't pee when I needed to, I can't rest, and have to abide by to a ton of ridiculous protocols but I stuck to every one of them and it proved to my treatment team that I want nothing more than to get better. 

I feel my body is starting to get stronger; however, I know I still have a long ways to go. It took 4 years for my body to progressively get to the state I was in, so I know it will not jump back overnight. The first time my Mom visited she said she noticed a difference and my face looked so much brighter. I can feel my body is gaining weight and I am confident that it will maintain it =) 

On Tuesday, I had another episode of my heart rate spiking -- it reached over 200 and took longer to break this time. I used the techniques the cardiologists taught me along with lots of deep breathing and it broke after about a half hour. It was scary, but not as scary as the first time. No crash cart or emergency response team in my room this time! I was proud of myself for handling it well and even more proud of Ashley for staying super calm and talking to me through it. The first time I almost sent her into cardiac distress when she saw how high my heart rate got!

On Thursday, I got more incredible feedback from the treatment team commending me on my progress and they told me I would be going to day hospital sometime next week! I am not at my goal weight yet, but they said they are confident I will able to still continue to gain and excel in the program. They feel I am ready for day hospital and I think I am too! 

Day hospital is the next step of the program at Hopkins. The inpatient portion of this program is focused on getting your weight up...and doing it FAST...and getting you medically stable. Until your weight is stable there isn't improvement that can be made. The main emphasis of the program is in the day hospital program. There is a house that day hospital patients stay in about a block from the inpatient unit of the hospital. In day hospital you prepare and cook meals, go out to eat at restaurants, get meals from the cafeteria or fast food places in the hospital, go food shopping, and still participate in the daily program activities, but you have more freedom to go places and have meals on your own. 

The First Few Weeks Inpatient

After the first week I was on 3500 calories a day. I felt like I was eating a house! My body started to adapt to the routine and the schedule. It was still exhausting. After meals I felt like I had eaten a whole buffet of food. Here are a few examples of what the meals consisted of:

Breakfast:

A cup of oatmeal with butter and brown sugar

A Banana

A Muffin

Scrambled eggs

Bacon

Soy Milk

Juice

Dinner:

Roasted Rotisserie chicken (with all the skin!)

Rice with Gravy

A cup of cooked vegetables

Macaroni Salad

A cupcake

Ice Tea

Juice

An Ensure Drink

Within the first few days of eating solid foods again I started having night sweats. I learned this was a normal part of the re-feeding process as your body's metabolism starts to work again. It was a good thing! Although I woke up a few times in a puddle of sweat, I knew it was a good sign that my body was starting to work again. It was working to repair and build tissue and many other functions it had not done in a long time. Along with the increased calories and the night sweats I would get moments of "hot flashes" throughout the day. I may only be 26 years old but yes I know firsthand what hot flashes are like! whew! I would have LOVED to be able to stick my head in a freezer at times.

My abdomen started to feel sore, tender, bloated and achy and I was pretty sure that it was my intestines expanding again and my skin starting to stretch. 

In this program, you meet with the team of doctors each day to discuss any questions you have regarding your treatment or progress. They will not tell you what your weight is - EVER. You will never know what their goal weight is for you or how close you are to your goal weight. They will basically tell you "you're gaining" or "things aren't going well and your weight has plateaued or dropped" and that's about it. 

Each time I met with the doctors they commended me on getting all the food in me and working hard. They reassured me that I am doing the best I can do and that this WILL be a success. In the first two weeks, when the pain was at an extreme, hearing the reassurance from the treatment team and nurses truly made me persevere. I always remember my first doctor told me, "food is the best medicine, and we would not be putting all this food in you if it was not safe for you." Although I was unsure about this approach of overloading my GI system with food, hearing the doctors and nurses assure me that if my body was not capable of handling these foods it would not be keeping the food down made me believe I could do this. This was the first time I truly felt like I trusted and believed in what a doctor was telling me. I believed them and reminded myself that the food I ate before the meal stayed down and if my body couldn't tolerate it wouldn't be keeping it down. I used this as my motivation to get through each meal. 

Each day I met with the doctor's and explained my symptoms and pain, they commended me for pushing through and getting all the food in me. My doctor told me everyday, "you are doing great!" One conversation that will always stick out in my mind was him talking to me about how it felt to be eating all kinds of food again that I hadn't had in so long. One question I remember him asking me was, "so when was the last time you ate a burger?" I told him it hadn't been since 2012 when I was at a barbecue and he laughed and said, "wow, that must be a date that sticks out in your mind." It really was though, I remember eating the burger it tasted amazing, then the next day regretting it because of the toll it took on my GI system, leaving me in pain. 

Although I received continuous reassurance from the team of doctors, for the first few weeks of the program I witnessed my fellow peers in the program struggle with making progress. Having their weight plateau or not reaching their goal weight after a prolonged time in the program. I was afraid and thought to myself, "what happens when it happens to me?" I saw it happening to everyone else. The answer I got from the doctors was, as long as you follow all the protocol, eat all your meals you'll do fine. From my peers, who had prior experience in the re-feeding process, I was told that sometimes your body just starts to slow down even when you aren't purposely doing anything. I was still afraid it would happen to me, and it did. After about 3 weeks in the program I met with the team and they told me my rate of gaining weight had slowed down. They gave me 24 hours to pay attention to how much I was moving around and if I was doing anything "extra" that could be contributed to burning extra calories. If my weight did not go up by the next day I would be put on Inadequate Weight Gain protocol (IWG). It means losing privileges and being monitored excessively to ensure you aren't deliberately doing anything to prevent your weight from going up. That night I piled on as much as I could to my dinner tray (being limited to only a few options) but I managed to choose a giant chocolate cupcake doused in chocolate syrup and icing and the next day found out I did it! I didn't get put on IWG. A few days later, they told me my rate of weight gain was still slowing so they gave me the option of going on IWG or increasing to 4000 calories. I took the calorie increase =) Punishing me wouldn't make my weight go up, but more calories WOULD!

On 9/22 a little over a month since I was admitted I went in to meet with the team and they really spent a good amount of time praising me for all I have conquered. They said from the moment I got here I said I wanted to try and wanted to get well and to this day I have been doing AMAZING. They commended me for taking all that has been put in front of me and never saying "no" or I can't. The one nurse said that despite my concerns of how I would feel physically, I never said No, I always said, "I am willing."

Hearing my peers tell me how brave I am for coming into a program so different from what I thought it would be really helped me stay motivated and continue to fight.