Today is day 2 of the new diuretic, and it appears to be working! I have lost 28 pounds since yesterday at 8:30am. I had no idea how bad I actually felt until some of this fluid has been taken off. I have much more energy where I don’t need to nap in the middle of the afternoon to just make it. We are still waiting on the results of the biopsy, so no news on getting on the better meds to slow the progression down. Some have asked how this will go with the diuretic. Amyloidosis is depositing in my heart, and it makes it stiff, and because it became stiff it has put me in heart failure. Also because of the stiffness it can no longer remove the fluid like its supposed to, this will not go away, but we are hoping with the current meds, and the option of possibly getting on the better meds that we can slow down the amyloid from going into the heart causing more damage.
Right now I am thankful that I can breath, I didn’t know how much I couldn’t just a day ago. I know once I take this medicine I am stuck to the house, right now he has me taking the twice a day. We have a virtual appointment on the 17th, so we will see if its adjusted, but I am still losing a lot of fluid with them so thats good. I am so thankful for a God who hears a small prayer of wanting to stay home with my family. It looks like MUSC and I will not be spending Christmas together and I get to hang out with Brad and the boys and play games and have fun! I am so thankful for all my friends who have checked on me, sent me memes, and are just there for me and let me be me. I try and pretty up this disease, but sometimes I just cant and am thankful for those that let me just let it out. I am hoping we hear about the biopsy soon.
Thank you for all the prayers I appreciate them more then anything! If my legs would work right I would run around, because thats how good I feel! I keep telling everyone I had no idea how bad it was until you feel this good! Since bound to the house just means the boys and I get to watch the grinch and do crafts!