Hello everyone!

[valve]

Hello everyone...I'm new here.  I just found this wonderful  site last night.  Well, here is my story.

I am a 37 year old female and have been on dialysis for just about a year now.  I was told as a child that I would end up with kidney failure.  When I was 9 months old I was diagnosed with leukemia and Neuroblastoma (cancer).  At that time they had to remove one of my kidneys because the cancer had killed it.  The other kidney had some cancer left on it but with chemo and radiation they were able to kill it.  However over time that left over cancer turned into cysts.  As I grew...the cysts grew overtaking my kidney. 

I found out about 4 years ago I was in kidney failure.  At the time I was seeing this one doctor that was vague on the information about kidney failure and transplantation.  He just kept telling me that I would learn more than I needed to when the time came.  That was pretty frustrating to me as I have always wanted to know what was happening and what could happen.  So I decided to see a different doctor (one that had followed me in the past).  The same day that I seen him he suggested working on getting me listed.  This was SO much better than the other doc, since he didn't even want to tell me anything. 

So, then I went through all of my testing and classes about transplant and finally got listed.  Then I found someone that actually wanted to be tested for me.  (All of this happened before starting dialysis)  She got tested and was a perfect match.  Right around the time we were about to schedule surgery I found out I was pregnant.  (What a surprise since the docs told me I could never get pregnant).  So, I decided of course to try and have the baby and put my surgery on hold.  Well, unfortunately at 6 months I lost my baby (I had a girl).  This was very devastating to me.  It was a lot to deal with on top of my kidney failure.  So, during my emergency delivery of my baby I started to hemorrhage so they had to give me a blood transfusion.  After getting out of the hospital my nephrologist informed me that my kidney function had dropped from 20% to 10% that I would have to start dialysis immediately.  I had informed him at the time that I had a living donor and that I hoped I could have my surgery before starting dialysis.  Then they gave me the bad news.  Since I had a transfusion I had to wait 3 months and be retested with my donor.  Well, the 3 months had passed and I went to contact my donor to let her know it was time for retesting and she was no where to be found.  I guess in that time she had changed her mind.  Which, I knew it could happen, I just didn't think it would because this person was totally stoked about it and kept in contact with me all the way up until that time. 

So needless to say I started dialysis in June of 2008.  I have a upper right arm fistula.  When I was pregnant the doctors had it put in thinking I was going to need dialysis while being pregnant.  So, I went through my first surgery for a fistula when I was only 2 months along.  Well, a week after surgery my fistula clotted.  So I went back in to remove the clot...unfortunately it couldn't be removed because it was not in my fistula but in my vein.  So the doc cut that fistula and informed me that I would come back and try the other arm.  So, I went back a month later and he put one in my right arm.  Thankfully that one worked.  Can you imagine going through 3 surgeries while pregnant.  I was pretty nervous about it all but they assured me it was safe for me and the baby. 

Now I know I didn't lose my baby because of all of the surgeries.  Unfortunately I have a problem where I cannot get passed 6 months.  I have had 2 pregnancies all together in my life, one 11 years ago and one in 2008 and they both ended the same way.

So, now I am on dialysis and one the transplant list in Michigan and in Ohio.  I currently go to dialysis 3 days a week for 3 hours each time.  I will be starting training to do home hemo in two weeks.  My clinic finally got the NX Stage system to I will be trained to use that machine at home.  I'm really excited to do this.  It will help out a lot since I live 40 miles from my clinic and have financial difficulties with having gas to get back and forth.

So, that is just a little about me...LOL  I even tried making it short.  I just can't wait to start posting on here and actually be able to talk with other people because right now I don't really have anyone to talk to as everyone in my family and immediate friends really don't understand what I am going through.  So, I thank you all a head of time for letting me share my stories and for replying back and sharing your stories.  Hope to talk to you all soon.

God Bless and Happy health to all!!!!

[twirl]

hello and welcome
we are here
we understand 

[paul.karen]

  Valve

Nice intro and boy what a life you have had.
Sorry about your difficulties trying to have a baby that is sad.

Also sorry you have had such a hard life from such an early age.
But you have found yourself a great place to call home here at IHD.
Hopefully a Transplant will find you and all of us sooner rather then later ..
Hope to see you on many of the threads.
P&K

[monrein]

     I'm so sorry that you've had to go through so much but I'm glad that you've now found this site and us.  You'll now have an entire community of people who share aspects of your experience and who will not only understand how you're feeling but who will be here whenever you need to vent, to question or even to have a laugh.  Post often and don't worry about keeping things short.  If you can type, we can read.

[Hanify]

Wow Valve you've had a lot to go through.  You sound amazingly upbeat after all your troubles.  I know what you are going through as my husband and I had to do IVF in order to have a child.  We were eventually really lucky and did have a girl (Molly) who is now 12.   I'm fairly new to this site too, and am loving it and all the great people here.  It is fantastic to be able to rant or just chat - depending how you feel.  Welcome.

[G-Ma]

 

I'm sorry about your troubles.   

[valve]

   Thanks for all the replies.  I really do appreciate it.  Like I said it will be nice to be able to finally talk to people that understand.

[willieandwinnie]

  WOW! valve, that was a great introduction. We are so happy that you found us and you will never be alone again. I can't wait to read more from you. Loads of information and even more support from this group then you can imagine. Please post often and check some of the older threads as they contain bunches. 

[willowtreewren]

Dear Valve.

Your story speaks volumes about your personality. It is a pleasure to meet you. I hope you post often as you join this IHD family.

 

Aleta

[Epofriend]

  valve

[MandaMe1986]

 

[Romona]

 

[paris]

Valve, you wrote a marvelous introduction!  Thank you for sharing your story.  There are several Michigans and Ohioans here.  You have experienced so much already.  You deserve for that transplant to come soon.  As a mother, my heart hurts for your lose.  I am sorry your baby girl is not with you.      You sound like you are strong and I am glad you are going on NxStage.  Please keep posting about your training with it.  Welcome to the IHD family.  I think you will enjoy your time here.  Looking forward to more of your posts. 



paris, Moderator