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lafounk2
06-27-2009, 12:32 AM
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 :(

Luce
06-27-2009, 02:21 AM
Wow - what an awful journey for someone so young to go through. At 25 I thought I was fairly young to be dealing with this, but at 15 I'm not sure how I would have coped.
Josh's story is similar to most, we all take most of the drugs he mentions and I too had plasmapheresis - luckily for me it worked and my kidney function has returned to almost normal. I am so sorry to hear that Josh will have to face a transplant in the future.

Thank you for sharing Josh's story with us, he writes incredibly well for a 15 year old.

lafounk2
06-27-2009, 03:22 AM
Hi,

Thanks for replying. This was the first time that I have sent information through this site. I am very happy to hear that your results were good with phasmaferesis. We were hoping too that Josh's kidney's would respond better. It's been really hard, but Josh's strength has given us tremendous outlook on things. I will keep you posted on how he makes out.

Thanks again,
Kelly

Jack
06-27-2009, 04:36 AM
So sorry to hear about Josh, he is so young to be diagnosed with Wegener's.
His story is not unlike my own and I'm still here after nearly 25 years! He is much younger than I was and the treatment is now much better so his prognosis must be considered to be good.

Read some of the stories on this site and you will get a handle on how people cope with their disease, but I must emphasise that every case is different. There is not much consistency where Wegener's is concerned!

One of my early posts - http://www.wegeners-granulomatosis.com/forum/new-member-introductions/77-20-years-wegeners.html#post349

lafounk2
06-27-2009, 04:44 AM
Thanks for responding. It is so comforting to know that there is hope after diagnosis. My son is such a good boy. Everyone who knows Josh, loves him. He's very special and is handling all of this with great strength.

I'm so happy to hear that even with a kidney transplant and WG, life expectancy can be positive.

Doug
06-28-2009, 04:28 AM
I can only agree with what's been noted so far. I was near death in January 2004 when I went through dialysis for seven days, then plasmapheresis and dialysis for three more treatments. I came through it very well, at, then, age 55, and have been in remission since circa June 2005. I, too, had a Groshong line installed in my chest (Josh may have had a different kind...), almost from the start. It saved lots of distress for phlebotomists and me alike as drawing blood was a minor hell until it was installed. It served well for 14 or so months. Josh, indeed, writes well, and I join those who wish him well in his journey as a Weggie. Has he seen this site? We would like hearing from him as well. This is a Weggie site, but familiy members contribute as well. We all need to be involved! :)

Dumpy
06-28-2009, 05:07 AM
Everyone of us here hate to hear that anyone has gotten this disease but especialy the younger people. The only comfort that I had when first diagnoised was my ruemy told me that everything happens for a reason and it is very true. It is very hard to see the good out of any of this but there is.
After my diagnoises I really started to look at life a lot different and realized that I needed to slow down and smell the roses before life passed me by and I would then realize that the things that really mattered I had not paid attention to. Two months after I was diagnoised my wife had a heart attack and had to have 4 bypasses. She is doing very well now but the reality that our love for each has grown very much which might not have happened because I was a work acholic before all of this and today I am thankful for everyday that we wake up and can share it together.
Hopefully I haven't rambled to much but enjoy your son everyday.

jola57
06-30-2009, 04:23 PM
Please give Josh my best. To have this awful disease so early is very tough. I can only wish that the meds take hold and get him back on his feet in no time. Maybe even without a kidney transplant

Geoff
06-30-2009, 09:52 PM
Hi Kelly, Josh sounds like a fighter to me to have come to terms with all that has happened in his young life so far. He would appear to be very lucky to have you as his mum as well. Between you both I reckon you can overcome most things. I have to agree with 'Dumpy' and the comments made about looking at life in a different way and not taking things for granted. Cultivating a positive attitude is also a 'wonder drug'. Keep us posted as to Josh's progress.

Doug
07-02-2009, 08:02 AM
Yes, throw good humor, jokes, even gallows humor (as necessary!) into the positive attitude mix, and you can weather a lot. There are other components, of course, but we can't talk about them here. Ha!:) (People don't hit mouthy Weggies, do they?)

Sangye
07-14-2009, 05:03 AM
Hi Kelly,
Your son Josh is quite a kid. I'm glad you recognize that--not all parents recognize when they've got someone so special in their midst. I'm so sorry for what he's gone through from (literally) day 1.

My doc is one of the VF Wegs specialists at JHU. From his research and comments, it seems that they're getting a better idea of when to use which drugs for Wegs. They used to bring out the steamroller (ie, cytoxan and high-dose pred) for everything. Now they're using other drugs with much less toxicity. This is improving the quality and quantity of life for Weggies. I hope he's got a Wegs specialist. Even rheumys who see a good amount of Wegs don't really understand the nuances of the disease and how it can be managed differently.

I also had blood clots due to Wegs. Why is he still on Lovenox? I was on it for 2.5 yrs, but am now back to coumadin for life. Besides being horribly painful, Lovenox causes serious bone loss. Not a good idea for someone so young. Has he consulted a hematologist with experience in Wegs?

PS I went to chiropractic school in Seneca Falls--anywhere near you?

mikebonella
07-14-2009, 02:16 PM
Josh is lucky to have a family that is getting involved and educated. My family helped me greatly when I was first hospitalized in 1996. I was in the ER for 3 weeks and had dialisis durring that time. I was lucky that the drugs worked and I didnt need a transplant. I did lose 30% of my kidney function though. Just remember that there is hope. a lot of people live with and manage this disease. The best news is that you got it diagnosed correctly. I am out of remission now and about to see a rheumatologist that was recommended by the vasculitis foundation. Im seeing her on Friday. I would highly recommend that you contact the foundation. They have support groups all over the country and lists of doctors who are very familiar with WG. I decided to dump my rheumatologist on the last visit when she admitted that Im somewhat of a mystery to her as well as one of her most intriguing cases. Im her only WG patient. Dont settle on docs who dont know this disease. My physician didnt even know to do ANCA tests...