I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: julian230 on September 25, 2008, 05:00:03 PM
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First a very quick introduction. My name is Julian , 24 coming up on 25... I was born with renal dysplasia, a one in a million chance of getting kidney disease. Had a seizure when I was 6, mom donated. That kidney rejected! And got another kidney from a cadaver! That kidney also rejected due to undiagnosed hypertension! I've been on dialysis for 10 months now (not long at all) and my doctor just introduced the idea of IVIG (my pras are probably about 95 %)
My big question is , has anyone had experience with this stuff? I'm also getting it with conjunction with rituxan (sp?) . My sister has said that she would donate . She initially got tested , but unfortunately wasn't a match (and it might've been due to my high anti bodies) So what is the effectiveness of IVIG? the drawbacks? chances of working? I'm extremely nervous, seeing how i'm on dialysis and I love water! :urcrazy; I know, what a great thing to have when you have kidney disease! Anyways thanks for posting!
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:welcomesign; to a great place.
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thank you! do you enjoy nxstage?
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Welcome julian. Do you know what your pra is or are you just thinking it must be high? I had a cadaver transplant for just over 23 years and am now working on another one. I thought my pra would be like what you said but it turns out it's 0%. I have no experience with the IVIG but some here do and you might want to do a search on that on IHD. I'm sure they'll chime in eventually too.
All the best and welcome to the best place for ESRD support and information.
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Its been confirmed awhile back that my PRAs are around 95 % . I've talked to some good people , including Soraya (who is the most friendliest person) if you don't know who that is , she has a website at sevenluckystars.com , and truly does give hope. Of course , with everything , sometimes the IVIG protocol doesn't work. I try to remain optimistic! NOT TOOOO optimistic , I will continue to research till my hair falls out about IVIG! :Kit n Stik; (I had to use that icon! It seemed really cool) Anyways thanks!
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:welcomesign;
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:welcomesign; My husband is on Nxstage and loves it about as much as you can :sarcasm; he does love not going in center. Otto(my husband) also has high pra 100% but we are waiting for a "perfect match" without IVIG. Good luck
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Hey Julian,
This area is for introductions so please post additional questions under Transplants or General Discussion.
You may be interested in reading Jill's story "Positive Crossmatch Transplant" http://ihatedialysis.com/forum/index.php?topic=1319.0
:welcomesign;
okarol/admin
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Welcome to IHD Julian,
I hope your sister can donate now. I don't know much about IVIG, and just wanted to introduce myself seeing how you took the time to introduce yourself. I hope you find the answer to all your questions and at the same time you will make many friends. I am one of the Admins here at IHD. I have FSGS and am pre-dialysis. I have been a member here for about 28 months. We are more like a family here than a message board, in fact many of us are going to meet in Las Vegas in 2 weeks just to get together. Maybe someday we will get to meet you face to face. Until then post as often as you like and we will see you in the forums.
Sluff/Admin
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Hi Julian, Glad you joined this incredible site. You will find lots of answers here. In the Transplant Section, Vandie has talked about her experience with IVIG therapy and her transplant. My PRA is 100% and my center has just started this therapy this year. I am waiting for them to accept me into the program. Keep asking questions--people will answer. There is so much knowledge here. And great support, too. Looking forward to hearing more from you. Welcome!
Paris,moderator
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Paris keep me posted on how you do , and I'll do the same for you =) :waving; I start mine in December (maybe , if insurance covers it) I'll keep ALL of you posted on how I do with it. I hear its good (the IVIG). Thank you guys for the welcome ! I'm sure I'll be posting my rants about "grrr! I can only have 4 glasses of water a day!". Thank you all , and I look forward to reading and posting about dialysis !
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Welcome aboard Julian. I am pretty much like Sluff....I know very little of IVIG, have FSGS, and am pre-dialysis (at least for now...we are getting close!)
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Wayne , IVIG is for people with high anti bodies and basically have a very low chance of getting a kidney , about a 10 % chance of getting a kidney or less. IVIG doesn't lower the anti bodies, you will still have them , but it will deactivate them and therefore ensuring your chances of getting a kidney higher . Its a godsend for people like me ;D I've had 2 previous transplants , some good old blood transfusions , and therefore PRAs are high. Here is a website http://www.uspharmacist.com/index.asp?show=article&page=8_1242.htm
Good luck with the dialysis , I have to say I'm experienced and I do NOT like dialysis . Thats the truth of it, with that being said... I have gotten use to it and have made some very good friends out of it. My lab reports are better than ever (but I take my pills religiously) and I semi learned to control my fluids (there are days I bring too much) and I haven't had any real problems.... during the days of dialysis, I bring in water and I weigh myself with the water. There are tips and tricks on how to be better in dialysis. I rather much have a kidney of course, as I have lost about 10 - 15 pounds on dialysis and I liked being "fluffy" as my girlfriend would put it. Anyways, good luck with this turbulent time, and a welcome to you too.
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Welcome Julian , good to have you aboard.
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Wayne , IVIG is for people with high anti bodies and basically have a very low chance of getting a kidney , about a 10 % chance of getting a kidney or less. IVIG doesn't lower the anti bodies, you will still have them , but it will deactivate them and therefore ensuring your chances of getting a kidney higher . Its a godsend for people like me ;D I've had 2 previous transplants , some good old blood transfusions , and therefore PRAs are high. Here is a website http://www.uspharmacist.com/index.asp?show=article&page=8_1242.htm
Good luck with the dialysis , I have to say I'm experienced and I do NOT like dialysis . Thats the truth of it, with that being said... I have gotten use to it and have made some very good friends out of it. My lab reports are better than ever (but I take my pills religiously) and I semi learned to control my fluids (there are days I bring too much) and I haven't had any real problems.... during the days of dialysis, I bring in water and I weigh myself with the water. There are tips and tricks on how to be better in dialysis. I rather much have a kidney of course, as I have lost about 10 - 15 pounds on dialysis and I liked being "fluffy" as my girlfriend would put it. Anyways, good luck with this turbulent time, and a welcome to you too.
Thanks for the link Julian, I will check it out. You can never have too much knowledge, at least I can't. :) Thanks for the "good luck" wishes as well.
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:waving; Hi Julian. Love your name. I am here for my mom who is predialysis. So sorry you have been sick most of your life. I'm praying that you will have more good days than bad and that you get 'fluffy' real soon. Mom has had a lot of blood transfusions. Didn't know PRAs get high due to that. I am going to check out the site you posted. take care
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:welcomesign;
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:waving; Hi Julian. Love your name. I am here for my mom who is predialysis. So sorry you have been sick most of your life. I'm praying that you will have more good days than bad and that you get 'fluffy' real soon. Mom has had a lot of blood transfusions. Didn't know PRAs get high due to that. I am going to check out the site you posted. take care
thanks!
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:welcomesign;
and a welcome to you too!
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Welcome Julian. Come on in and make yourself at home. I am pre dialysis, too. Good luck
on your hernia problem.
Mimi
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Welcome Julian. Come on in and make yourself at home. I am pre dialysis, too. Good luck
on your hernia problem.
Mimi
Word travels fassssst! :) thanks!
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A belated welcome to our wonderful caring community! At first it seemed as if you guys were speaking another language. And here I was considering myself fairly handy with languages - IVIG, PRA????????? anyway, I am so glad you joined our IHD family :grouphug; I can be of no help to your situation since i am totally in-center hemo - no other alternatives exist in our territory (British Virgin Islands), but I can assure of my caring thoughts and a ready cyber-shoulder when you need it. Keep reading, keep posting!
Bajanne, Moderator