Posted by juliebernal | Filed under Digestion & Nutrition, Dysautonomia/Autonomic Dysfunction & Neuropathy, Ehlers–Danlos syndrome (EDS), Feeding Tubes & Total Parenteral Nutrition (TPN), Gastroparesis (Delayed Gastric Emptying), Malabsorption/Dehydration
Sept. 15, 2014
Finally! A new normal.
I have been learning to cope and adjust to being on TPN and being hooked up to a tube and needle in my chest every night now. I was very worried in the beginning as I started my life on TPN. The protein and fats part of the TPN were making me very sick to the point I thought I was surely feeling death within me and knew I would not be able to live a life of being in a constant state of sleep and confusion. Within 24 hours of having lipids removed I began to feel more like myself. What a relief. Now the worry has been how are we going to get enough protein and fat in me; enough for my body to remain functioning. My prealbumin levels have been dropping over the last few weeks. I have been dealing with some facial swelling and fluid retention. When my prealbumin levels have gotten severely low in the past, it has never been very pleasant and it down right scares me. I fear getting to that stage, so I am working as hard as I can, my body allowing, to keep my health as stable as possible.
Overall, being on TPN 12 hours a day is a new normal for me. It is like second nature now. And I have become comfortable sleeping at night and have been doing well with not getting tangled up in my tube. Or remembering to carry my bag which contains my bag of fluids and the pump. It is kind of heavy, but I sleep most of the time I am hooked up to my TPN. I have become a pro at doing flushes and even removing my needle from my port in my chest. My husband has been amazing at preparing my TPN, adding the vitamins to the bag, putting my needle in and has been amazing as a caregiver. He is my world and I would be lost without him. He is the one who helps with giving me my morning Meds and he stays on top of my overall well being.
I am feeling thankful for being able to adjust and for being able to enjoy the simple moments. I have been able to eat some. But broth soup right now is the only thing which has not been causing pain. But getting some nutrition and hydration I feel some of the pressure has been taken off of me. Like a heavy weight has been lifted. I can sleep better at night and feel like I am getting a bit more energy back during the day. I am still queen of naps. I tire easily and the days I push myself, I can spend days recovering. But I am finding peace with my new life. Adjusting to a lifestyle that once scared me to my core. As taking in each new change, I am like a baby bird learning to fly. Now my wings are taped, I can enjoy the view around me; even if for only for a few. Until it is time to rest, recover from a day of adventure. I see so much beauty.