Posted by juliebernal | Filed under Chronic Illness/Rare Disease, Digestion & Nutrition, Feeding Tubes & Total Parenteral Nutrition (TPN), Gastroparesis (Delayed Gastric Emptying), Malabsorption/Dehydration, Nausea & Vomiting, Power Port/Central Venous Line
Aug. 13, 2014
Sadly, I have hit a decline in my health. Have been very tired and weak the past few weeks. Dealing with starvation pain and muscle wasting in my legs. Very low energy levels. Low food/liquid intake, been vomiting and dehydrated. Saw dr yesterday and he said I am clearly very ill and our last option for me is TPN (liquid nutrition received by IV thru my port). We are hoping to start in a few days. Also ordered home health and daily home IV saline infusions. This means I will have a needle in my chest and be hooked up to IV bag everyday for most hours. TPN is used as a last resort because it can come with risks, like blood infection/sepsis, clots, organ failure, metabolic imbalances. The dr said since I have tried Meds and feeding tube in past, and pacer not an option for me, I am left with needing TPN to help get my nutritional state more stable and to give my GI track a rest. Sadly my progression is part of the complications of a devastating condition I have called gastroparesis. And also from not being able to absorb properly thru my GI track because of past abdominal surgeries. Luckily, there are some people who are on TPN for months and have no complications. I have been on TPN once in the past, and got sepsis after a week. Was not good. But I’m hoping this time around I will be better because it will be thru a port instead of a PICC line. And my port has been working great thus far for fluids. Hopefully the TPN will only be for a short period. We shall see what happens. I am feeling both scared and hopeful. Could use some good thoughts. and hopefully I will turn a corner for the better soon.
And please forgive me if I have not seemed like myself lately or if I am too tired to reply to comments or have conversation. My energy has been low and I have been resting often. Hopefully once I get some nutrition I will start to feel a bit better. Thanks for checking in on me and for taking time to read this. It is always a pleasure to hear from friends and family and I am thankful for all the encouraging words and support. I will keep fighting the best I can.