New Member, I think

[ForMySon]

  Hello everyone, I think I am doing this right now, but I am still not sure.  I hope I am posting my introduction to the site. Goofynina, am I?   

[okarol]

Yay! You made it! Tell us more! 

okarol/moderator

[ForMySon]

   OKarol, THANKS...

[goofynina]

You sure are!! Great to see you here, finally,   Please let us know your story, Looking forward to hearing more from you 


Goofynina/ADmin.

[goofynina]

I will be in the chatroom if you need any help 

[ForMySon]

Thank You so much for your help, Goofynina.  I am so happy to be here

[goofynina]

   And we are happy to have you, now look around and feel free to add any questions, comments and/or concerns of your own, 

[paris]

   Looking forward to hearing more from you.

[ForMySon]

Hello everyone, I am so happy to be here.  My son told me about this site, he feels its the best place he has found since he started Hemodialysis.

I am the Mother of a loving, generous, sweet, positive and Very Brave young man!

I'm Deb, and the mom of this great kid, well actually he is a man, but will always be My kid.  This is kinda long story about how we got here, but I hope, no, I know you will all understand my reason for sharing.

This December it will be 10 years since my son started on hemodialysis. He complained that his foot was hurting and swelling, I thought me probably hurt it by rollerblading and jumping over the trashcans as he loved to do. He was always active, he played baseball, soccor, tennis, roller hockey, all the time. he didn't feel he needed to go to the doctor, and it would probably be ok. But by monday it did not get any better so I took him to a walk-in clinic. The doctor said it was Gout. I thought his guy was crazy, gout in a 19 year old, no way. The doc asked us to get blood work done the next day, we did that on tuesday. On wednesday, the doctor called me at work with the results. At the time I was a hairdresserfor about 12 years, but I was a nurse for 10 years prior to changing professions. It didn't dawn on me at the time that the only reason the doctor calls you himself was with troubling news.

He told me Matts creatinine level was 9.3, after being out of nursing so long it did not hit home what this meant, until I asked him what the normal level was when he told me it still didn't register. He had made an appointment with a nephrologist for the next day. I asked him what he thought was wrong and he gave me a very simple reply, something going on with hiskidneys.  So, still not thinking straight, we went to the Nephrologist the next day.

The first introduction to this new life was when a staff member called us into a conference room and asked us how we were going to pay for this visit, I told her that I was divorced, we did not have insurance, and I would pay with cash. She than said to me " you know this is going to be a long drawn out process" I told her I had no idea why we were her except that maybe he had a kidney infection of some kind. At that time a look came to her face and she asked us to wait back in the waiting room.

When we meet the doctor, he asked many questions, I asked what was wrong, he said my son needed an ultrasound of his kidneys and that he was in renal failure. Of course at that statement I knew, but I still didn't think of dialysis.  They checked his urine and they saw only a very small amount of protein, the doctor was surprised at this. He sent us to the hosp for th Ultrasound and told us to come back to the office afterwards. My son wanted me in the room during the test, but I was not allowed and the tech was very understanding and made him feel it was ok for me to leave.

As I walked out of the room it hit me like a brick wall.... My only child, my heart, my life, was very sick and he might even die!

When I left that room, I lost it.

I live in Florida, my only family lives in New Jersey, I immediately went to a pay phone and called my mom, I could bearly talk becausing I was hysterical, crying.

I knew it would upset my son if he saw me crying so I pulled it together, as best I could. He knew. We went back to the doctors office and was told he was in End Stage Renal Disease. The next week he had surgery for an AV fistula and implantation of Tessio caths. He had made the dicision to go on hemodialysis even tho the doctor recommended PD, my son could not stand the thought of a tube in his abdomen, this had to be his choice, its his lbody.

Within 3 weeks he got so ill, that one day I called the office just after leaving and told the nurse that he was vomiting in the car. She told me he would have to get alot sicker before he waould go on dialysis. I was lividI told her he was wearing 4 pairs of long underwear, had to blankets arounf him sitting in a very hot car without air conditioning because if I put the air on it was to cold for him.

I was so stupid or something at the time that I took him home and by the way he was in a wheelchair at the time to weak to walk. At 11pm that night, he asked me to help him stand up to urinate into a urinal, he could not do it himself.  

I took him to the ER. At 2 am he was placed on dialysis.

[okarol]

 


That story is so similar to ours. It reminds of all those gut-wrenching days when Jenna was first diagnosed. I never felt so helpless and hopeless.

  Hugs for you both.

[goofynina]

Hi Deb,  Welcome to ihatedialysis.com    I cant imagine having a sick child, i dont think i can handle it (i have no kids) but it sounds like your doing an awesome job    I hope Matt is doing good and hopefully he will come and join our awesome site too   You have not only found an amazing group of people but also an amazing, fantastic, superb support group.  We have become more like family here so with that said, "Welcome to the Family"  Please feel free to post any questions, comments and/or concerns of your own as you feel needed, you can rant, vent, anything you can do to make this easier on you.  We are here for you and Matt, you are not alone.  Looking forward to hearing more from you soon 


Goofynina/Admin.

[Zach]

Glad to have you join the community.
 

[angela515]

  I can't imagine how it feels to have your child in kidney failure, but I know my mom tried her hardest to always keep it together in front of me while she was falling apart inside.. your very brave and a wonderful mom. 

[Ohio Buckeye]

Welcome to the IHD Family.

[Laurie]

 

[kitkatz]

I know having a sick child is gutwrenching. I put my parents through a lot of stuff. Welcome to the site!



kitkatz,moderator

[Romona]

Hi Deb. It is nice to meet you!

[lola]

 

[donnia]

 

Wow!  What an introduction!  Brought me to tears.  I can't even imagine my child going through this. Welcome to the board.  I know you will find information and support here.

[George Jung]

My son told me about this site, he feels its the best place he has found since he started Hemodialysis.

Welcome.  Who might your son be?

[angellady07]

Welcome Deb.

[Hawkeye]

Hello and 

[ForMySon]

That story is so similar to ours. It reminds of all those gut-wrenching days when Jenna was first diagnosed. I never felt so helpless and hopeless.

  Hugs for you both.

This is the first time in 10 years that I really feel someone understands how I really feel! All though most people are kind, if you are not living with dialysis, whether it be your yourself, your child, spouse, sister, brother, mother or father, you can't really know what its like. Even the nurses and doctors I think don't really understand.

I am so grateful to you all for your support, I am so thankful I have found you!      I have never really told this much of what happened to my son before, and I am crying now, as I write this to you all.   

And I would like to thank Epoman for starting this site, its a god send to me.   

[st789]

 

Unless one witnesses a close one on dialysis or being through it, it is very very hard to grasp the journey of living with kidney failure.  Even doctors and nurses can only empathy to certain point.  Glad you have found us here

[goofynina]

Awww, Deb, wipe those tears girlfriend, you have found us and you had us at HELLO,    You just come as often as you can, post any questions, comments and/or concerns that you need answers or advice for, or just rant and rave here, we all know what you are going through and we definetly know what your son is going through, we are here for you and WE CARE