It is nice to be home or at least at my Mom and Dad's house, which really is my families second home. I was discharged from the hospital this afternoon. Slept the whole way home in the car. My Mom and I stopped at the thrift store before heading home, something cheery and a change of scenery. Friday is free bread day. I got a cute sweatshirt for $2, a grocery bag full of books for Adelaide for $2 and a mug for a quarter. Also two loaves of multi grain bread, a pack of nummy donuts and a pack of cherry fritters for free. Gotta love the thrift store!
I got to take a nice hot bath when we got back. I was just about finished and Matt and Adelaide arrived. Adelaide climbed into the tub with me and we had some nice family time. Then went outside, played on the swing set, played hide and seek for the first time with Adelaide and did a little walking around the yard.
So nice to be with my family. I have grown weary of the hospital. Three inpatient stays in the past couple months is plenty. Not to mention ER visits, doctor's appointments and lab draws.
They have still not figured out exactly what is going on with me. As far as my heart we have kind of figured out that I operate in a 2 pound window. Two pounds under/dry weight and my kidneys fail. Two pounds over and I go into heart failure. Let me just say that this a very hard tightrope to walk.
They think that something is going on with my lungs that is not caused by my heart. They have numerous blood tests running in the lab. They also have some sputum samples that they are attempting to run. The problem is that what they are testing for, Chyloptosis, is so rare, that nobody really tests for it, not even the Mayo. So they are having to try and figure out the testing parameters. Chyloptosis, if I have it, would also be something caused by the radiation. It is when there is a miscommunication somewhere, a fissure of sorts, between the lymph system and the lungs. The lymph system carries triglycerides and they somehow get in to the lungs. The lungs get inflamed and produce these airway castings, that look like worms. Every so often I cough one out. But the main problem is that I can not stop coughing and have severe shortness of breath. I really hope that they can figure out what it is so that we can move forward and treat it appropriately.
I am trying to focus on the positive. I am home. Now it is just waiting for this round of tests to come through. Praying hard that they find some answers with out having to endure another hospital stay.
I do have to say how incredibly lucky I am. My wonderful, fabulous, amazingly dedicated Mother spends every moment with me in the hospital. She is my friend, my Mom, my punching bag, my shoulder to cry on, my rock. We always laugh and manage to have a good time. Thanks Mom! I Love you so much.
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