New Member Kansas City, MO

[Eric54]

Introduction: My name is Eric Conard. I'm 33 and from the Kansas City, MO area. I'm a single dad with 2 daughters who are 5 and 7. Former group insurance sales executive ( had to quit work due to esrd ). I was diagnosed with gpa wegs in July of this year. I went into the hospital with what I thought was a bad sinus infection. I ended up with ESRD due to wegs. I'm on dialysis. I've been hospitalized several times over the months due to treatments not working. I was spitting up blood, went into a-fib, acute gi bleeding, coded several times due to blood loss. I went through plasma exchanges, several transfusions, I'm on 60 mg of pred and started Rituxin. Cytox was tried and did not help me. Hopefully things will get worked out with the Rituxin. It's been a really tough go. I'm glad I found this group. I have read some great info.


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[Mas78]

Welcome to the forum Eric.
I'm sorry to hear about your Renal Disease being that acute. I am sure you have been reading through a bunch of posts on here and I hope that some of them are giving you hope that it can turn around. I don't know much about the Rituxin but my understanding is it can help when the Cytoxan doesn't.
Be sure to post any questions you may have as there are a lot of nice, knowledgeable people on here that will respond.

[mishb]

Hi Eric and welcome to the forum.

I'm so glad that you found us but so sorry that you have to be here.

Gosh things certainly went bad fairly quickly for you

I hope you have some help with your daughters. It is very tough going at the beginning of your new rollercoaster ride.

I have not had RTX but nearly everyone will tell you that it is the wonder drug and I hope it proves to be that way for you.

[gilders]

Welcome!
Your dialysis may not be permanent. When first diagnosed I was on dialysis 3 times a week and plasmatheresis twice a week. My kidneys recovered quite well.
Admitedly after each relapse I've had over the last 20 years my kidneys have got damaged more and more. I'm currently close to dialysis and my kidneys won't improve. But hopefully yours will improve and in an ideal world you'll never have a relapse or if you do it might not "attack" your kidneys.

[annekat]

Welcome, Eric! I have no kidney involvement so far and have not taken RTX so can't share much about either of those. Cytoxan worked for me to clear up my lung involvement and I'm now on MTX, with the sinus and ear involvement pretty well stabilized now, but not without a lot of permanent damage to that area. In any case, I'm glad you found us and hope you will be a regular contributor, whether you have questions, answers, rants, whatever. We're up for all of it. This is a most excellent group of people, most of whom happen to be at some stage of having Wegs/GPA, and we are all here for each other. Being involved with this forum has been indispensable to me in getting through each day since my WG/GPA diagnosis. I hope it will be so for you, and my heart goes out to you and your two daughters as you deal with this.

[Pete]

Welcome, Eric. About a year ago, I was starting to have symptoms of kidney involvement (blood in urine and elevated creatinine). I had two infusions of rituximab two weeks apart last fall, and my kidney symptoms were gone within two months. The infusions were non events - the only side effect was very mild fatigue the day after.

[Eric54]

Thank you all for the warm welcome. I really am glad I found this place. The biopsy on my kidneys showed extensive damage with about 10% gfr right now. I haven't given up hope, but, was advised to move forward with transplant when gpa is stable. My lungs started to clear up during my last hospital stay so that was a relief. My family has been a huge support and help with my kids and new condition. They still have a hard time comprehending what this is, but, they see how aggressively this came on so they understand it's serious. Thank you again all. From what I've been reading it gives me hope and understanding.


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[amy.r.kahl]

Eric
I dunno if you believe in God but someone once told me that he gives his hardest battles to his strongest soldiers. Sorry to hear about it affecting ur kidneys that's my worst fear it seems. It affected my lungs I couldn't breathe without oxygen but the rituxan has cleared up my lungs greatly. so I hope it helps you the same. I was wondering who you see in KC? bc I'm wanting an WG specialist and was wondering if your doctors are? Oh and I have farmers insurance....my whole family does lol it's the best.


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[Eric54]

Hi Amy,

I do believe in God though things like this definitely challenge me in my beliefs. I have 2 more Rituxin infusions left. So far my lungs are clearing up. My Kidneys are gone. Things happened so quick. It was scary. I see Dr. Jason Springer. He does specialize in vasculitis. He completed his fellowship at the Cleveland clinic.

Here is some info:

http://www.kumed.com/find-doctor/springer-jason-m


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[Eric54]

Hi Amy,

Yes, I do believe in God but this has definitely had me question my faith at times. I have a couple Rituxin infusions left. So far my lungs are starting to clear up. My kidneys are gone for good. I see Dr. Jason Springer with KU medical. He does specialize in wg. He spent some time at Cleveland clinic. I hope you find a good doc. It was hard for me to not see all of this as a death sentence until I was referred to Dr. Springer. I spent over 45 days in the past 3 months in the hospital between ICU and regular rooms because my nephrologist was trying to manage my wg. That was a bad idea. Let me know if you have any questions.


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