I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: emilyc on August 16, 2007, 12:45:26 PM
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why hello there! i'm emily, 15 years old, and i'm just figuring out that i have kidney problems. my grandpa had fsgs and that's what they're figuring is the problem with me too. not the PROBLEM, but what's going on. he was on dialysis and now that i might have to be on it too at some point, i'd like to learn more about it! this message board is probably the best i've ever seen. thanks for all the information everyone! the kidney problems kind of came as a surprise...i've had protein in my urine for 5 years straight...4+ even and no one said anything to me about it! and i had no idea my grandpa had kidney problems at all...so this is all kind of a shock. i thought it was normal. :oops;
silly me!
well thank you for reading and thanks for all the info it's really great to be here!
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Hi Emily, Welcome to ihatedialysis.com. You will find alot of good and important info here and what you dont find, you can always ask, we are here to help you and support you any way we can :2thumbsup; Have they said if you are a good candidate for a transplant yet? are you on the list? I am sorry you are even experiencing this, especially being so young, but i have learned to just keep living and take it one day at a time ;) Looking forward to hearing more from you soon :clap;
Goofynina/Admin.
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Hi Emily. I am a 42 year old Mom with 4 kids. Some are your age. I had a kidney transplant. I also had FSGS. You will love this site so visit often. I wish I'd have found it before my transplant. You are not alone, so talk. Look forward to hearing from you!
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Hi, Emily welcome to Ihatedialysis.com.
I am 46 years old and have FSGS. Diagnosed only a year ago in May. I keep watching those protein numbers every time I have my appointment with my nephrologist also, it's kind of a drag but guess things could be worse. Only difference is our age. I hope you have a long time before you face the challenges associated with dialysis. If it must come to that it would be nice if it could wait until your out of school. So much to deal with sometimes. Like goofynina said you will find lots of information here and this is the most informative site around.
Enjoy the site, and feel free to post all you want.
Sluff/ Admin
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:welcomesign;
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Hello and :welcomesign;
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:welcomesign; this is a good place to be
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Hi Emily, welcome to this site...Boxman
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:welcomesign;
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Hi Emily . Its great that you found this site. Stay in touch and let us know how things work out. :)
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Hey Emily !
:welcomesign;
Great to see you here, hope you find all the info your looking for, but hey we are here to have fun too so if you wanna join in go for it !
Take Care Tamara xxx ooo :cuddle;
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Hey Emily! :welcomesign;
So sorry your having to go through this at 15, but I am so glad your educating yourself about it and hopefully will be able to better take control of your medical situation.
I look forward to getting to know you. :)
Angela
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Hi Emily, welcome to the IHD Family.
You will find lots of helpful info and lots of support and good friends here for you.
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Glad you found us! I also have FSGS. Welcome to the family! It is a great site for sharing and learning.
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:waving; Hi Emily,
Welcome to IHD! My daughter was 15 when we discovered her kidney problems, she is 21 now and has had a new kidney for 6 months now. I hope you learn a lot here. There's great support from some really nice people too! Good luck to you!!
okarol/moderator
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When things are so overwhelmed, just to remind yourself to step back and take it one day at a time and keep on living to the best that you know how.
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Hi Emily,
Welcome to a great online family. Don't be afraid to ask anything, even it if seems like a stupid question.
:welcomesign;
Chris
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:welcomesign; Emily welcome to IHD.
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:welcomesign; Emily!!!
You have found the best board!! Look forward to hearing from you. :cuddle;
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thank you guys so much :] i just started smiling reading all of the replies. this is such a great place. i'll be sure and check everything out :]
:yahoo;
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Welcome to the board. We have a lot of information to read here. Good for you that you are trying to educate yourself on renal disease. The more you know the more involved in the decisions medical professionals make in your life. Good luck.
kitkatz,moderator
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:welcomesign;
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Welcome to our community, Emily! We are so glad that you found us. This site has become a family, so you have lots of readymade aunties and uncles right here! That means that you have to let us know how things are going with you. I am a teacher, so I also want to know how you are doing in school. There is so much to read here, so get going. As Sophiasmom said, don't be afraid to ask questions. That is what this is for. I am so pleased that you took the initiative to find out about this condition. :thumbup;
Here is a hug from all of us - :grouphug;
Bajanne, Moderator
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I'm feeling pretty cruddy right now but it could be a lot worse! I just had some blood tests and I did the annoying 24 hour urine test so I'm just waiting for all that stuff to come back! the test is really a pain in the butt. I've already done it 3 or 4 times so I'm kind of ready to move on from that. :lol;
I'm really excited for school though. ill be a sophmore and I want to be a teacher. so maybe we can talk college choices ;)
ill definitely post everywhere and you guys will all get annoyed with how much I bug you! I'm quite talkative.
thanks =)
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Emily, You crack me up! :bandance;
I don't think I could have handled everything like you are at your age!
You remind me of my sixteen year old. I think the 24 hour urine is horrible too. Especially for the ladies. The guys have such an advantage.
Keep us posted on how you are doing.
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Hi Emily, When i was 11 they found out i was only born with one kidney. I had many of those stupid 24 hour test along with some other stupid ones. I am now 51 and had one transplant that lasted over 10 years. I lived in Nashville during that time. I am now on hemo dialysis for the past three years. I hate to see someone young being sick it's just not fair. I wish you all the luck. :welcomesign;
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Hi Emily! I have FSGS too...diagnosed in 1990 when I was 27. I started dialysis in April of 2006, and had a transplant in Dec. 2006. I have a 20-year old daughter and a 17 year-old son. Glad to have you join us...we're here to help, share info, and support each other! :welcomesign;
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YAYYY!!! GLAD TO HAVE YOU HERE!!!!!
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:welcomesign;
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hi and :welcomesign;
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Hey Emily, glad you are here! :welcomesign;
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HI Emily,
My son is now 22 but was diagnosed with FSGS when he was 17. As of Feb of this year he is now on dialysis. Ask me anything you want. Hopefully I can give yous ome info along with the ppl on this wonderful site. There are some on here with FSGS also.
Lori/Indiana mom to Dustin now 22 with FSGS and now on dialysis
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Same here, the stupid 24 hrs thing, I did it for 7 yrs and the frustration of seeing your kidney decline gradually.
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G'day Emily & Welcome to a younger member (yes I know I'm a bit late. You know down here in Australia things are a bit slow at times! :) ). I'm sorry to see someone so young and vibrant have to deal with this crap it totally sucks - but on the upside we're all "with" you in spirit and you can have us to vent to when you need to. I've lost count of the numbers of 24 hour tests I've done over the years - sorry to say but you'll be having to do more of them almost guaranteed!! Still - there are worse tests you could do I can assure you!
I hope you manage to stay off dialysis... well totally.. but for a very long time! Concentrate on school and colleage thoughts and above all.. live your life young lady!!! If Kidney disease has taught me anything it's "never wonder..." - so go for it!! I don't mean do stupid things.. but if you have chances to experience things and do stuff.. go for it! You mever know when you might have the chance again!
Again, welcome to our world!
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Welcome Emily! I'm 44 and also have FSGS. I'm not on dialysis yet. I was diagnosed with kidney disease when I was 9, but they didn't know it was FSGS until I was 30. I've always spilled protein and like you, I thought it was normal. I think you'll grow up being better informed than me. :clap; When I was a teenager, I kept waiting to die, but it never happened! I wasted a lot of my life in not living. It sounds like you know better.
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:welcomesign;
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:welcomesign;
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:welcomesign;
Hope today is better than yesterday Emily..and that the tomorrow is even better still!
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Just FYI - this member hasn't posted since August 29, 2007 :lol;
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Hi Emily! Welcome, Welcome :waving;
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Hi Emily,
It was a case of "silly me" as well. My uncle had kidney problems and had to have diaysis. Then at 34 yrs BAM, it hit me too. We had no idea that the condition I have is hereditary.
I've been on dialysis 18 months and am over the initial shock. I try to live a normal life and stay positive about things - I'm still the same person. You have to keep doing the things you enjoy and don't let this thing beat you. You'll get tonnes of support on this site when you need it.
Matty.
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:welcomesign; Hi Emily,
Emily my son was 17 when he was diagnosed with fsgs. His protein was over 2,000! What is sad some Dr's do not take a simple urine test to check for protein. He actually was 12 when the regular Dr did the urine test.
Write me anytime.
Lori/Indiana mom to Dustin 22 fsgs/dialysis
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:waving;