Hi there fellow kidney people...

[kidney4traci]

Hi there, I would like to take a moment and introduce myself.  I just turned 40, married with three children (14, 9 & 7).  I have Alport's from my father, although I thought I was only a carrier, I ended up in kidney failure at the end of October 2005.  Realized I was in trouble as I was having terrible leg cramps at night.  My husband is a chiropractor and we don't like traditional MD's.  So it took alot of pain before I went to the dr.  They took my blood pressure and it was crazy - like 210/180.  The doctor knew of my family history and took a lab, then called me to see a nephrologist the very next day.  It was then I learned I needed a transplant.  I tried to treat this with a naturalopath who just about killed me.   Within a week I was so weak I had to go to the hospital.  Now reading epoman's story, mine seems like whining, but I was scared at the time.  Thankfully I have a supportive family and now feel like my life is running as well as can be.  I am on hemo.  I have a fistula that has been working great.  (Thank you Lord.) I am now scheduled to start home training on nxtstage May 7th.  I can't wait!  I am nervous about sticking myself, but figure others have done it, so I will get over it.  Watched a good video about button holes and it actually made me mad that the center hasn't been trained to do that all along since they say it is better for the fistula and also less pain after it is implemented.  Anyway, I found this sight after researching the nxstage machine.  I can't believe this is the first time I have seen this sight.  It seems great and supportive, which we all need at times.  Thank you for keeping it going and I look forward to reviewing it.  I m not a big poster, I am really a newby at this.  Thanks for your help!

[Bajanne]

Hello there!  We are so glad that you have joined us. This is just the place to be.  That was a great intro.  Epoman liked people to start with a nice long intro.   This is a very supportive site.  We have really become a family.  You are going to find that when you are going through stuff.  And the great thing is that people here know exactly what you are going through.   
I hope that you are going to be a big poster.  We want to hear how you are doing with the NxStage.  So you will have to be filling us in.
 



Bajanne, Moderator

[Joe Paul]

Welcome Kidney4traci, good to have you aboard.

[Wattle]

  Glad you found us.

[Sluff]

Welcome to IHD Tracy,

IHD is the the most comprehensive website in existence when it comes to kidney disease and dialysis. There are a few web babies here so you will fit right in, once you get to know us you will be fully experienced  when it comes to posting. IHD is proud to be responsible for introducing many newbies into adult posters, as I am one of those people.

Thanks for sharing an intimate part of your life with us, it is a beginning of what I hope to be a long union. Thanks for entrusting us and for becoming part of our family because we are glad to have you here with us.


Sluff/ Admin

[aharris2]

hi there and  , please let us know how you do on nxstage please...


Rolando

[Kathleen]

 

[bolta72]

Welcome and best of luck to you.

[Hawkeye]

Hello and 

[donnia]

 

[kidney4traci]

Thanks for all the support!  I found myself looking forward to reading the site today and looking for replys.  How do you guys get a picture of yourself on this site (already understand how to get it in the computer ha!).  Thanks!

[Zach]

Welcome to the community!   

[kitkatz]

You have found what I think is a great support group! Welcome! Sit down a while and read some posts. We have a lot of information here!





kitkatz,moderator

[anja]

    Kidney4traci, glad to have you join the community!  Hope you will feel comfortable here ~

learn some and share your knowledge, including your Nxtstage introduction.  You have a great attitude

 about all this.     

Anja

[rimbo74]

Hi kidney4traci, I also have Alport's Syndrome.  I started PD back in February of this year so I'm still a newbie.  Welcome aboard.

[MyssAnne]

Welcome, Traci, I also have Alport's from my father! Been on PD for a year, sorry to hear of your struggles, but am glad you are starting to win over them! We're strong people here, both the dialysis patients and our family/caretakers!

[carolyn77531]

 

[kidney4traci]

Welcome, Traci, I also have Alport's from my father! Been on PD for a year, sorry to hear of your struggles, but am glad you are starting to win over them! We're strong people here, both the dialysis patients and our family/caretakers!

Thanks for the resonse.  I am interested about your Alports - you are the only female I have talked to who also has alports.  It is so rare to hear.  When did you find out you were not just a carrier?  I got it from my father too.  I remember him on dialysis when I was a kid.  He didn't seem to do too well, but that was 35 years ago.  Do you have any siblings?  Sorry to ask so many questions...

[MyssAnne]

Traci, we found out over 35 years ago, when we were sent to Riley Hospital in Indianapolis for testing.  I have a sister and a brother who are both affected by it, that's half of my siblings.
We all show the signs of it, but I am the only one to be affected severely by it. Just my luck, eh?  We didn't take it seriously because they didn't take it seriously, so until about 8 years ago, we didn't take my high protein levels seriously. My gp did, and sent my to my neph. That's when we found out I was having severe kidney failure. I held it off for several years til last year, when I started on capd.

[anja]

  I had repeated urinary tract infections since age 13  and had blood in my urine all the time.  After being treated for elevated blood pressure since 1999 I was  diagnosed with probable Alport's from Mayo after my kidney biopsy 3 years ago.  My father has been on hemo. over 6 years now and turns 89 on Sunday and doing pretty well.  I have 3 sisters, 2 of which also have blood in their urine as well as my daughter and several nieces.  I have been on CCPD for 2 years in June, my labs are great and my weight quite constant.  Hope you get along well with the training on the 7th~ I am sure you will, you have the right attitude~~ if other's can do it so can you!!!

[kidney4traci]

I appreciate the response.  I was always told I was a carrier, but that only the males had kidney failure.  Just my luck too!  ha.  I have three children, and my oldest is a girl.  At the time 15 years ago, they told me if it was a boy I should abort it.  Thank God it was a girl.  And by the last one, well we are Christian now and aborting wasn't even an option.  Anyway, I do see high protein levels in my middle girl, and have yet to check the boy.  I am about to, he is 7 and I want to have base line tests now.  I don't have any of the hearing problems associated with Alports, but I do remember my dad did.  I have 6 cousins in St. Louis and I heard the oldest boy had two transplants.  Wish I knew more there, but unfortunatly they don't talk to me.  Thanks for the Alports updates from all, I do find it comforting to see other men with it too, as I wonder about my son.  Ok, think I have rambled enough today...