Hi I am Anthonys mom......

[Anthonysmom]

  Hi I am the adoptive mother of two boys, Joey 12 and Anthony is 9. My son Anthony has been with us since he was three. I knew at the time we got him that he was born to a cocaine addicted mother and was born with only one kidney. They told me back then that he would eventually need a kidney transplant. Anthony did great for the first two years and he had regular visits with a nephrologist. At the age of five he had huge jump in his creatnine it had been going steady at about 5 and then in a month jumped to 8.3, so he was immediately put on dialysis. I would love to say "everything was just sunshine and roses" but all of you know that would be a bunch of bologna. I will not go into details about all of of our story but I will highlight some things that have gone on.  First we tried to do peritoneal diaysis but in a nutshell he could not do it because both catheters wrapped around his intestines causing him to be in a lot of pain and we ended up being in the hospital all that summer because he had a a lot complications. He had peritonitis a couple time, pancreatitis, and his bowels shut down every time they went inside his stomach.  Lets just say it was horrifying. Then he had to have 8 catheters replaced within a six month period after his peritoneal ordeal. We began to think we lived in that hospital. I have to mention when we weren't living there we had to drive 1 1/2 hours one way to get to dialysis because they were the closest to take pediatric patients. That in itself really sucks!
 After 6 months we were blessed to get a kidney from a woman who did not know Anthony but had heard about him. I am amazed at the generosity of people when they hear of kids like him. I later found out that we had about 30 people test for him! That is so moving to me! This woman gave him a kidney and after a month in the hospital and many complications later he went home and everything was fine for about 8 months. Two Biopsies later we found out he had BK Virus and it was attacking his kidney because of the immune suppression drugs. What it basically does is cause the kidney turn to scar tissue. After about two years of fighting this by lowering his immune suppression drugs he lost the kidney. During all this we had to take him out of school because he could not fight even a cold, he had one for four months. I took him out of school and his cold immediately left. This was torture to him because he loves school and is a social butterfly, but we had to keep him from getting sick.
 About 9 months ago he was placed back on dialysis, and it sucks! He first tried to have a fistula but it never got its "thrill" they were looking for, we ended up getting a graft and that is working ok but seems to run slow at times. Anthony has never been an easy stick because of the years of blood draws and he seems to not have any good veins left. He has one place left and its in his groin, so hopefully we won't ever need it.(keep fingers crossed)
 My issues are that we were told that he would have to wait 6 to 12 months of the virus being gone before he could be even placed on the list to get a new kidney, well that has been gone for about 4-5 months now but they said we have to do the same for the EBV virus that he now has and no one told me until about two months ago and he has had it for a while with no one telling us. Well he still has it but it is going away at a snails pace. So First I am mad that they acted like they had known all along but never even told us.  The other thing that makes me mad is I have to drive three hours a day to go to dialysis, being my only option in dialysis units. We have two in our town but not for pediatrics and they will not touch him because he is a pediatric, and from what I am told the only difference is tubing. I do not get that at all! I am a nursing student and I found out that there is such a thing as home hemodialysis and it is known do very well in kids.That seems like a good solution right? I told my doctor about it and he seemed shocked that I found out this (secret) and told me he would not accept this and I would have to find a new doctor if we wanted to do this. Ok, that really did it for me because that told me he was not interested in doing what is in his best interest just what would line his pockets. You see, Anthony is a social butterfly and misses so much at school because of dialysis and if we could do it at home he would be able to go to school regualrly. Even though he is gone three days a week he keeps up with his class and gets straight A's. Home hemo from what I read is actually better for the patient because they can do it daily and they actually feel better than at dialysis. He could actually eat what he wants on this type of dialysis. It all seems to be the best solution for him. I could not get the doctor to give me good reason for not doing this type of dialysis. At this point, I am an angry person with them because I feel like he only cares that we line his pockets, so now I have angry bitter wall up when he or any other doctor there tries to talk to me. My son sees this and knows I am angry when I go there, he even tells them I am mad that I have to go there. I worry he will feel I am mad at him when I am not. I talked to him about it and he said he thinks sometimes I am mad at him for it. I, of course, tell him different. We are looking to get a different doctor but are waiting til after the christian cruise we are taking him to in May and don't want hem to say he can't go because they want to find something else to hold over our heads so we are playing it cool til then. They can't tell us that we can not do this because of training and all when I know full well that they have technicians who hook them up with very little training. Like three weeks of training, my neice got hired to do that somewhere else, so they can't say that its because of the training. I mean, if every day average parents have been known to do it then I know as a nursing student, I could definitely do it.
 This is our story and I am here to have a place to vent to people who can understand and it would be like a therapy, and hopefully I could help someone else along the way. So, here I am Tammy, Anthony's mom. And yes, I hate Dialysis. I could see Anthony tell them tomorrow that I belong to I hate Dialysis. I think it would be funny to see there reaction.

[G-Ma]

     to a great place.  I really hope you find a Dr. that works with you and your son as this should all be about your son's best interest.

[monrein]

  Welcome anthonysmom and I'm so gladdened to hear of all you do to support your son with his struggles.  You have definitely found the right place for good information, caring and support for your family. 

[Joe Paul]

Welcome anthonysmom , good to have you aboard.

[willieandwinnie]

Anthonysmom. So glad you found us and we are sure you'll find the information and support that you need, right here. 

[paul.karen]

Hello Anthony and mom.

What a tough story to read.
But i agree you need a new doctor one that is concerned for your son and nothing else but your son.
What an A_Hole that doc is.
Needless you found the #1 Support group for Dialysis patients and caregivers.  Hope to see you on many of the threads.
I hope you enjoy the cruise.  At least Anthony has something positive to look forward to.
P&K

[Romona]

   I hope you can find a great doctor for Anthony. He sounds like a cutie!

[boxman55]

Wow to much for a young boy. Welcome to IHD we are very glad you found us and are here for you so vent away.


Boxman,Moderator

[TeenHatesDialysis]

  Anthonysmom!

I understand 100% about the difficulties associated with pediatric dialysis.  I have 2 teen daughters, one on dialysis (14 months) and one in denial.  I didn't like the answers I was getting years ago from my daughters' Nephs, but they are the only group of pediatric Nephs in an 8 state region.....so we have no choice (Ugh!).  Some people come from out of state for dialysis here so I try not to complain too about the 45 minute drive each way (I can understand how 3 hours would be very frustrating).  My daughter can't do PD during the night because she starts out sleeping on the bed in one corner of her bedroom and wakes up on the floor in the other corner of her bedroom???  I have taken my girls out of state to 3 different hospitals for second opinions. I love Lucile Packard Childrens Hospital at Stanford!!! Stanford has listed both of my girls on their wait list, my oldest (in denial) as "inactive".  Even though Anthony has an infection, he should be listed as "Inactive" on the list so that he can start moving up. They won''t call him for a transplant if he has an infection, but that is no reason not to list him. Tell the Neph and Transplant Coordinator that you want him listed YESTERDAY!!!!!

Welcome to the forum.  I am sorry that you and Anthony have to go through this. Hopefully, he will get a new kidney soon and it will last F-O-R-E-V-E-R this time!!!!

There is great support and great information here. I am also a newbie, but have already learned so much!

[Dan.Larrabee]

Welcome Anthonysmom!

My hat's off to such a great mom. 

[Anthonysmom]

Wow!!! Thanks for the great reception! I feel welcome and am excited to get busy on here! I have enjoyed it thus far. I even told another mom at our dialysis about it and she liked it so hopefully we will see her soon. We got a laugh out of the t-shirts on here that says I hate dialysis. We would like to buy them and have us all wear them to dialysis, but she said we would probably get escorted from thew hospital!!(LOL) We think its fun to dream of doing anyway.

[Bajanne]

Welcome to our community, Anthonysmom!  This is a great place for caring people like you.  I am sure you have already found that this is a wonderful place for information, support and even fun.  Our founder Epoman would have loved the nice long intro that you gave.  We like getting to know our members.  this is not just a website - it is a genuine family and I have the experiences to prove.  Just keep reading and keep posting so we know how Anthony is doing (and you too!)


Bajanne, Moderator

[paul.karen]

Please buy the shirts and wear them to dialysis.
I think if they kick you out for having a shit that says i hate dialysis you would have a hell of a lawsuit.
And im not for trivial stupid lawsuits but quess what.  Dialysis does suck and your aloud to hate it.
But anyone who comes to this site would see the true facts of IHD>
I have yet to meet a person who likes dialysis.  Well other then for profit centers............

[Anthonysmom]

Many Thanks! I really enjoy this website and I am so glad I accidentally found it. I need people in my life who understands how hard this really is. I love reading what you all have to say!
                                                                          Anthony s mom