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Old 06-07-2011, 02:37 PM   #11
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Re: prayer request for my husband please...

keeping you in my thoughts.

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Old 06-07-2011, 04:24 PM   #12
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Re: prayer request for my husband please...

praying right now.
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Old 06-07-2011, 10:13 PM   #13
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Re: prayer request for my husband please...

Thank you all, it means a lot, I will update when I hear from him after the appointment. His poor feet look like theyre going to POP! Bringing all those memories I tried to forget right back...
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Old 06-08-2011, 10:03 AM   #14
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Re: prayer request for my husband please...

That's tough! But prayers are sent!!!
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Old 06-08-2011, 10:03 AM   #15
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Re: prayer request for my husband please...

Definitely relapsing, should start chemo again tomorrow. he will be on it longer this time too, so there is definitely a chance he will become sterile, but even if not, it will be a long time before his system is completely clear of the chemo for us to ttc again. Really praying I'm pregnant now, he is hopig I'm pregnant too, especially with boy/girl twins! Lol he has always wanted a big family, and I really wanted my kids to have more brothers and sisters, and we both wanted to keep them all close in age, so it definitely hurts. I would really love to give him some good news and something to look forward to!
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Old 06-08-2011, 10:05 AM   #16
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Re: prayer request for my husband please...

I hope the treatment works this time. Wanted to add, have you guys thought of banking his sperm at all? Might be worth it.
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Old 06-08-2011, 10:10 AM   #17
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Re: prayer request for my husband please...

Thanks. We looked into it last time, but it would delay his treatment too long and we can't afford it.
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Old 06-08-2011, 10:24 AM   #18
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Re: prayer request for my husband please...

Big ! I am just curious (you don't have to share details if you don't want)...but is his diagnosis Nephrotic syndrome? My 5 year old son, Alex, has Nephrotic syndrome and your DH's symptoms sound very much like his symptoms. He is does respond to steroids at this point, but we fear he is becoming resistant to them plus the side effects have been really terrible. It has been very hard on him and we've dealt with numerous serious secondary infections. He actually just relapsed a few weeks ago so we are back on the treatment rollercoaster too.

Anyway, if you need someone to talk to, please feel free to PM me. It is very hard to have someone close to you dealing with a rare kidney disease when most people don't really understand the diagnosis. I will say a prayer that your DH is in remission quickly.
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Old 06-08-2011, 10:44 AM   #19
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Re: prayer request for my husband please...

Thanks! nice to know someone else who understands! It is so hard to believe he needs these treatments and explain it all to everyone else since his only obvious symptom is swelling, and once that is gone, he SEEMS fine, but they don't seem to understand what's still going on inside!

He actually has Glomerulonephritis, A.K.A. nil change disease. Pretty similar. Normally found in children under 8. The steroids were horrible, he lost all his muscle and was literally just skin and bones! The chemo has less side effects, as sad as that is... but the steroids didn't help him at all. Adults have a harder time with treating and relapsing, so I always knew it was a possibility, but happening so soon was a low blow!

I hear nil change is very often overlooked because, as it's name suggests, there is usually no change they can find unless they check the biopsy with a specific microscope that is not routinely used. We were lucky that his Dr. went the extra step in the beginning to catch it. They told him if he had waited a day or two to come in, he would be on dialysis and/or the transplant list... scary! Especially since he was going to wait to go in, but i wouldn't let him!
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Old 06-08-2011, 10:48 AM   #20
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Re: prayer request for my husband please...

and prayers!
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