Living with HUS/TTP

After reading J Kennedy’s story, I felt compelled to share my own. At 37, I was diagnosed with Stage II Anal carcinoma. The diagnosis was devastating, but the treatment, which included Mitomycin (which causes HUS in less than 2% of the population), nearly killed me.

In March of 2005, I returned to my oncologist (2 hours from my home) with hopes of being released to return to work. Unfortunately, I did not return home til 6 weeks later. I am an RN, but had never heard of HUS and was in no way prepared for the battle ahead of me. After 30 days of Plasma exchange, dialysis at least every other day and transfusions too numerous to count, I was allowed to return to my home.

To make a very long story short, I was inpatient again for a total of 7 weeks and suffered the following complications: sepsis x3 (my lines always got infected), pancreatitis, liver failure, CNS vasculitis, extreme hypertension CVA, gastris paresis, seizures and continued renal failure.

3 1/2 years after the battle began, I continue to have chronic renal failure with a creatinine of 2.3. Thankfully, I am currently managed with medication, but there is talk of a transplant in my future. I’m 41 years old and Never imagined this for my life, but it’s made me who I am today so it’s all good.

J. Kennedy, I am so sorry that your daughter lost her battle. I can only imagine what you are going through because my mom thought that she would lose me too. Only God knows why we suffer, but I would like to believe that someone besides myself was helped by watching my struggle. My husband, daughter, mother, sister and brother are my true champions and I wouldn’t be here without them. I know that your daughter passed feeling the same way about you.

In Christ,

V. Foley