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:crying:

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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[kaysee]

Welcome to the forum Eric,
When I was diagnosed with WG my kidneys were down to 25%. After the first four rituxan treatments my kidneys went to 50%. But I relapsed two weeks after stopping pred and ended up in the hospital. It was too soon to do a second round of rituxan so I was given pulse steroid treatments and had rituxan again 3 month after the first treatment. I am now being tapered off pred again but things are looking stable. My kidneys have not gotten worse. Don't give up hope on the kidneys. You might get back some function. In the event you don't I will pray that they find a new kidney for you.

Karen

[amy.r.kahl]

Hey Eric54
I was looking at him but will he take MO Medcaid and Medicare ? I was wondering cuz he's at KSKU not KSMO. Did you have to get a referral ? I got put on disability and got Medcaid.
Thanks for any help
Amy


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[Eric54]

Hi Amy,

He is in kc kansas. I'm not sure about the insurance set up he has regarding mo/ks. I did not not need a referral. I still have commercial insurance through cobra right now.

E.


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[Eric54]

Karen,

I love to hear things like this. I just had my third txt treatment today. Amazingly some of my kidney function numbers have improved as well. Not overly improved, but, it's been a decline for months and felt good wen my labs came back and they showed improvement even being as minimal as it was.

E.


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[RudiK]

Hello Eric, and welcome to the forum. The WG patients on this forum are the most knowledgeable and supportive people when it comes to WG I got to know since I was diagnosed about 4 years ago. I'm sorry to hear about your kidney problems. I too have kidney involvement, but luckily the docs caught my WG in time, I lost about 60% of my kidneys, but the rest is good enough so that I don't need dialysis. Earlier this year I relapsed, after the docs and I decided to get off the Immuran and Prednisone and was hit in my left lung and just about all my joints. I'm just now back into remission and hope to stay there. I do, too, believe in God. Believing in God and the help and support from all the other patients on this forum, especially the few that past away during the past two years, have helped me get through this nasty illness.
Good luck, and I will keep you in my prayers.

[Miranda]

I know this has been a while but welcome! I am from the Kc area as well so it's nice to see someone so close. My sister in law is a doc at KU Med and she says Springer is really good! She tried to get me to see him but I love my doc too much[emoji3] hope things have started looking up for you since these posts!!


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[mrtmeo]

Hi Eric,
I don't want to give you false hope, but many do have kidney function improve to dialysis independent over time.
Usually improvements occur thru out 1.5 years following treatment.
It is important to keep the disease in check with either rounds of rtx and the right maintenance drugs.
Here is a graph showing typical kidney function after ctx.
View Image (http://www.sjkdt.org/viewimage.asp?img=SaudiJKidneyDisTranspl_2012_23_2 _301_93162_f3.jpg)

For reference serum creatinine 355 umol/l is approximately a creatinine of 4 mg/dL.
A serum creatinine of 118 umol/l is approx 1.33 mg/dL.
Note: big spikes are flares, so it is extremely important to check for flares to conquer this disease.
Urine dipsticks can help show if there is blood in the urine to warn u if it is time to get things checked further for disease activity.

study here
Clinical features and outcomes of ANCA-associated renal vasculitis Seck SM, Dussol B, Brunet P, Burtey S - Saudi J Kidney Dis Transpl (http://www.sjkdt.org/text.asp?2012/23/2/301/93162)

Here is a creatinine units converter
Creatinine mg/dL umol/L Unit Conversion -- EndMemo (http://www.endmemo.com/medical/unitconvert/Creatinine.php)

With the kidneys, it is ultimately important to keep blood pressure and blood sugar down.
I pray you get your kidney function back.