Brady’s
Story
In November 2001, our 3-year-old son Brady awoke vomiting and
passing maroon colored urine. After a long day in the emergency room he was
admitted to the hospital. A series of immediate lab results showed elevated LDH
(~15000), a small rise in Creatinine and BUN, and a
severe decline in Hemoglobin. Brady weighted 36 pounds at his admission. The
diagnosis of Atypical HUS was made and he spent for 5 weeks in the hospital.
Though his LDH level began to drop from the first day, the Creatinine and BUN peaked at 5.6 (normal ~ 0.5) and 128
(normal ~ 15) during the middle of December. It was during this time that Brady
began retaining liquids and was placed on Peritoneal Dialysis. He was also
given a central line to facilitate Red Blood Cell transfusions, Fresh Frozen
Plasma (FFP) infusions and lab work. During his stay he was given three Red
Blood Cell transfusions and two infusions of FFP. His kidney’s stopped making
urine around the 18th of December.
Every day after the 18th, we prayed that
Brady’s kidneys would begin to produce urine again. After about a week without
urine, the renal nurse started to discuss with us the prospects of dialysis at
home. And then, on Christmas Eve, as if a gift, Brady’s kidneys began making
urine. He was subsequently removed from dialysis on December 27 and discharged
on New Year’s Eve with a normal LDH, a Creatinine
level of 1.1 and a BUN of 55.
A follow-up visit four
days later showed all normal chemistries: LDH 150, Creatinine
level 0.7 and BUN near normal.
During this stay, Brady never completely stopped making urine, nor did the urine ever turn red. His Creatinine level peaked at 4.3 and his BUN peaked at 89 at the end of January. He was discharged on 5 February with a Creatinine level of 1.7 and a BUN of 52.
This relapse was plagued with
blood pressure control problems. He was sent home with 9 medications: 6 hypertensives, 2 diuretics, and calcium carbonate to
control his phosphate levels. From his
discharge at the beginning of February to about the third week in February,
Brady continued FFP infusion treatments, on an outpatient basis, three times a
week. After the third week in February until the end of March, Brady’s
treatments were reduced to twice a week. He was further reduced to once per
week for about 6 weeks. After a renal biopsy performed in mid May showed no
signs of HUS, the treatments were discontinued.
It has been approximately one year since his relapse. This
last year has, nonetheless, been very trying for both Brady and his family.
During this period he underwent two renal biopsies, PD catheter removal,
central line removal, mediport placement and removal,
two renal ultrasounds, three cardiograms, and a renal angiogram.
By far the largest issue has been his blood pressure. He is
currently on 9 hypertensives and diuretics to control
an abnormally high pressure brought about by the damage inflicted by the A-HUS.
His average pressures, with medication, are on the order of 120’s over 80’s
(his normal pressure should be approximately 90’s over 50’s). His continuous
high BP has concerned his nephrologist to the point
that he was considering a nephrectomy in order to
save his other organs, specifically his heart. The cardiologist determined that
his heart was not currently in any danger of permanent damage. Unfortunately,
after multiple renal ultrasounds, a renal angiogram, and a Rennin sampling
performed during the angiogram, we are still unable to pinpoint the exact cause
of the high pressure. Will it resolve on its own? Only time will tell.
As far as the cost for his illness, our insurance company
stated that since his first episode, doctors and hospitals have submitted bills
to the tune of about $200,000. This includes about $5000 of out-of-pocket
expenses. In addition, we have accumulated out-of-pocket expenses of about $800
on medicine and diet supplements.
Brady is now 5 years old, and for the most part, a happy
little boy. And when he’s happy, his family is happy. His kidney function is
moderate to poor, and Brady understands that he has problems “in his tummy”. He
is currently 39 pounds, an increase of three pounds over the last 14 months.
Though I don’t think he understands why, he accepts that he has to get an Epogen (EPO) shot once a week, blood work every other week,
blood pressure taken 6 times a day, 23 doses of medication per day, and a
monthly visit to the nephrologist. We remain
encouraged by his strength and attitude.
About once a week, he looks at me and asks, “When I grow
big, I won’t need anymore shots or medicine, right Dad?” I simply give him a
hug, and say one day, this will all be over. I hope and pray I can keep my
word.