Elizabeth Farrell's Page

My eldest daughter, Amy, was diagnosed with AHUS 2 years ago when she was 12. We had been home from a holiday in Egypt for just six days when Amy was taken ill. She had gone to stay at a friend's house for the night and I got a call the next morning to say she had been sick during the night. By the time we went to collect her she had vomited several times and continued to do so very violently for the next 24hours. When her eyes turned yellow we knew there was something seriously wrong and took her to an emergency clinic. The doctor there suspected hepatitis, as we had been abroad, and sent us to A & E in the local hospital. In the hours there, the vomiting decreased and she passed the darkest, smelliest urine I have ever known. Several bloodtests were done before I was taken into a the doctor's pffice and told that Amy's kidneys and liver were not functioning properly. We were then rushed to the renal unit at Great Ormond Street Hospital in London. We were given a diagnosis of HUS immediately and told of the possible progression of the condition and need for transfusions and dialysis. Amy was obviously very lucky and escaped the need for either of those procedures. Although her creatinine levels were soaring and her anaemia worsening she continued to produce small amounts of urine. On the 4th day of her hospitalization, just as I had reached the lowest point, her bloods showed an improvement! Amy was discharged for homecare from a nurse after a week and took folic acid and iron for her anaemia, plus a fortified drink to try to help her regain some of the lost weight. (Interestingly, once she was able to drink, she was encouraged to drink sugary drinks in the hospital as this helps break down the urea which had built up.).
We left the hospital believing Amy had suffered HUS as a result of an e-coli infection contracted whilst in Egypt and that although the recovery would be slow she would return to normal and never be able to contract the disease again. It was, therefore, a total shock when we found out a few weeks later that no evidence of e-coli or any other known bacteria had been found. and Amy was firmly in the Atypical HUS camp. She has been genetically tested for the 3 main known component mutations and we just found out the results were all negative. So far Amy has remained healthy and has not a recurrence, for which we are all truly grateful, but every runny nose or sign of lethargy brings fresh anxiety.This site has broken my heart with some of the stories I have read but also offered comfort. That other people understand the issues involved and are interested in the same questions as myself and my husband provides enormous relief. Thank you.