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Josh's story
Hi, I'm Josh's mom, Kelly..
Please read Josh's story (15yo) from a report he wrote from school which summarized the sequence of events leading to the diagnosis of WG.
When did my disease start? by Joshua
I started getting sick back in January 2009. The first sign that something may be going wrong was a bump that appeared behind my right ear. Upon noticing, my mom brought me to the pediatricians the following day. From there, a CT scan of that area was done and was diagnosed as being a "swollen lymph node." Additionally, my doctor issued CBC (blood work) to rule out any issues. At that time, my blood work appeared normal. Approximately 1 week later, my right ear starting hurting. My mother brought me back to the pediatricians where they noticed that I had an ear infection and was prescribed amoxicillin. After that 10-day course of antibiotic was finished, I still had an ear ache, and I was starting a sinus infection. I went back to the doctors where cefdinir (Omnicef) was prescribed. They put a refill on that antibiotic as they anticipated that the sinus infection may be stubborn and my require a second round. By end of February, beginning of March, my sinus infection seemed to be getting worse. My mother brought me back to the pediatricians where they referred me to have a CT scan done of my sinuses. The diagnosis from that CT scan was "chronic inflammation." Being dissatisfied with my lack of recovery, my mother took me to an ENT in Plattsburgh where he didn't do anything for me. From there, my mother brought me to CVPH ER and another ENT (in Burlington) for another opinion. Each time, we were told that I had a "chronic sinus infection" and that it would take a while to go away. My family and I had a vacation planned for Florida (4/3-4/14). One week before our vacation, I started with a low-grade fever and sleeping all the time. I had no energy and did not feel well. My mother brought me back to the pediatricians twice within the week before departure and was told that I may have allergies and that I was ok to go on vacation. On 4/3, my family and I flew to Florida. In Florida, I was very sick. I slept most of the time, blew red blood out of my nose, had two days of dizziness, and started with my leg hurting. One day before returning home, my mother noticed the leg that was hurting was swollen. My mom and dad took me to the ER in Orlando, Florida where they told us that I had a DVT (blood clot) in my left leg and that my creatin level in my blood was elevated. Your creatin level shows your kidney function. My kidney function was not doing well. From there, they transferred me to Arnold Palmer Children's Hospital where I stayed for two days. Knowing that I may require lengthy testing and hospital stay, they agreed that I would be able to be sent to our local Children's hospital (Fletcher Allen in Burlington, VT) via air ambulance. On 4/15, I was sent to Fletcher Allen via air ambulance. I stayed at Fletcher Allen for approximately 10 days. During those days, I had multiple tests and saw many doctors to rule out the problem. A blood test called "ANCA" was done to determine if I had Wegener's. The test came back positive and from there I had a kidney biopsy to determine the extent of damage. I recently underwent surgery twice to fix the blood clot in my leg and am being closely monitored to have my kidney function checked. My mom gives me injections twice daily for blood thinner and I take antibiotic, acid reflex, blood pressure, and steroids medication. I have received four bags of chemotherapy drugs and will continue to receive treatment until this disease is in remission.
Since his story was written for a school report, he had a port placed in his upper chest a few weeks ago so that he could receive 5 plasma feresis treatments. His kidney doctor hoped that the plasma feresis treatment would improve his kidney function, but it didn't. His last treatment was Monday. He just started on chemo pills. His creatin in his blood work Monday was 2.9. He has been staying these days in the 2's, low 3's. We were told that it's inevitable that he'll need a kidney transplant ~1-2 years. I have type AB+ blood and Josh is B+. He will need a donor with type O or B. We have to wait at least a year, however, until Josh is in remission before this could take place. Fortunately, we are born with 2 kidneys and only need one....
Please let me know if anyone has any advice or have had similar issues relating to WG.
Just a note that my boy had open heart surgery when he was 10 1/2 months old due to a hole in his heart (VSD). He's an extremely wonderfully, sweet, angelic child who doesn't deserve all that he has been dealt with so far in life.
Thank you,
Josh's mom,
Kelly
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