Okay, HUS my blood disease is what caused my kidney failure. HUS is a very rare disease process. Prognosis in adults is usually bad. HUS is typically a childhood disease that a child could get from a certain strand of E coli. I had tested negative for E coli and I am not a child??? So, how did I get HUS? They would send my blood to Iowa, where the expert on HUS is at. It would be a few weeks before we would know any results. Since I am an adult I have atypical HUS, which makes it even rarer. The odds of an adult getting HUS is something like 1 in a million. Seriously, why couldn't I have won the lottery? But when you have a rare disease like this at one of the countries BEST hospitals, every doctor wants to see you. So, I had tons of doctors, teams actually. Each team would usually consist of the lead doctor, fellows, residents, interns and whoever else on that team was interested. There was of course the hematology team for my blood disorder, there was the nephrology team for my kidney failure, the immunology team, the general medicine team, the pediatric nephrology team (since HUS is typically in children) the neurology team (HUS can affect your brain). At any one time, there would easily be 5-6 doctors in my room. It was great to have so much good care and attentive health care professionals but it was also scary because you never want to be the person with something rare and virtually unheard of. Luckily for me, Barnes had seen HUS in adults and had experience with the disease, so I knew God had put me in the perfect place.
I don't remember which team of doctors this particular doctor came from, but my mom asked the question.....What is the prognosis here? This doctor was very honest. "At this point, we don't know." she replied. My mom was asking, "We don't know what?" The very sweet doctor told her honestly, she is very critical and at this point we just don't know if she will make it, it could go either way. We will know more as dialysis progresses. My mom did not share this information with me. Anytime I asked her, Chris or Susie if they thought I was going to die, they affirmatively said "NO! You have a 3 year old at home waiting on you" I know Susie and Chris truly believed I would live, but I don't think my mom was as confident. By this time everyone in my family was researching HUS, and it really did not look good for me. We were also wondering, IF I did live through the HUS, would my kidneys regain function? Initially, doctors thought there might be a chance that they could regain function. The docs had either seen or read case studies where after an attack of HUS, the patient would require dialysis for a period and then their kidneys would regain function. So, I latched on to the hope that maybe that would be my story too!
My goal at this point was #1 Live and #2 be on dialysis for a brief period and my kidneys would start working again. I kept telling myself. " they are just on a break, I am 28 years old. I know I wont be on dialysis indefinitely." Because honestly, I believed nothing like this would happen to me. Lesson here.....NEVER think that!
Linda Burke left a comment for Jeff Wilhelm
6 months ago