During this part of my story I have ended hemo and will be beginning PD. So, I still have a perma cath in my neck and the tink off cath in my stomach. I am quite the mess!
Kidney failure and/or HUS has affected every single part of my body from the top of my head to the tips of my toes. Here are some examples. My hair began to fall out, my vision was affected badly by the HUS, my blood pressure is unstable, I passed out a lot, I puke daily, my parathyroid is over active, my colon is lazy, I am covered in bruises, I can only eat a handful of certain foods, I can only drink 32 oz a day, I have to wear clothes a little loose because of the tink off cath, I couldn't wear certain shirts due to the perma cat, couldn't shower for awhile, couldn't bathe for awhile, constipation, poor circulation in which there are times my toes feel like they will freeze off, must be in bed by 8 o'clock with PD, cannot stay out late without paying for it, body image issues, not feeling pretty or sexy for Chris, being unable to drive at one point, feeling like a lousy mother and wife, and feeling useless to society job wise. I also am not allowed to get pregnant, cannot take birth control, or ever get another vaccination. And I should TRY to not get sick. Because any of these 4 factors could potentially reactivate HUS. I still have HUS, always will, it is just in a sort of remission state. One thing change drastically, my personality. I have become a fighter! At times I don't even feel like Jill. And I guess in someways I am a new Jill. When you have to fight with your doctor constantly to just get mediocre care, it wears you down physically. So kidney failure and the HUS has taken a toll on me physically, emotionally, financially and spiritually. It also impacted my husband, my parents, my brother, my baby, my family, my friends, my coworkers....anyone close to me.
Linda Burke left a comment for Jeff Wilhelm
8 months ago