I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Lori1851 on April 08, 2007, 06:32:03 AM
-
Hello,
I am a mother to a 21 yr old son Dustin who is now in ESRF due to FSGS. He was diagnosed with FSGS in 2003 but started having getting trouble when he was 12 but after a year on meds went into clicical remission. It was his Junior year in high school where the swelling started again.
He has been through 2 biopsy's. He has a perma cath and his right av fistula did not take soooo here we are again looking at the upper arm fistula. We finally got Dustin in to our local dialysis center after driving 3 days a week like 60 miles each time for over a month. We go Thursday for a transplant evaluation.
It sure has been a long road but we will reach the top of the mountain one day.
Glad Mom's can post to .
-
Welcome, Lori! This sounds like a place you need for yourself, as well as Dustin! Mothers are ALWAYS welcome here!
Let us know how the transplant process goes!
-
Welcome Lori, good to have you aboard.
-
Thank you Joe and MyssAnne for replying. As a parent you hate seeing your child should I say young man go through this.
I have always tried to stay positive and to keep the faith. I have always told Dustin he will get his turn for transplant. I cannot donate since I have had high bp and been treated for it like over 15yrs even though I am 44. My hubby is considered obese. My niece and my older sis are going to be tested.
Do you suffer from depression ? Dumb ? huh ! Well Dustin finally agreed to try some med for that and I have to say it has made alot of difference. Dustin and I have always been close since he is our only child. I have always tried to read up and learn all I could about his disease FSGS. Do either one of you have and upper arm fistula?
So great to talk to others.
God Bless,
Lori / Indiana mom to Dustin FSGS ESRD
-
Welcome Lori, this site has been very helpful to me and I am sure a lot others. I just recently got an upper arm fistula after a left arm lower failed. I t is to early yet to know if it will work though. Boxman55
-
Boxman,
So do you have the incision from the elbow to the armpit or did they do the keyhole technique? I know Dustin is not looking forward to this since he had a failed lower wrist fisula also.
Thanks for writing me. :)
-
Welcome Lori,
It's good to have you here. I too have FSGS. Diagnosed in May 06.I know what the future holds because of ihatedialysis.com this is an excellent resource tool and I'm glad you found us. I have learned so much about esrf and dialysis because of this site.
We do have an off-topic section as well where we can get away from dialysis conversations for awhile. feel free to join in any conversation, and join us in chat sometime.
Sluff/ Admin
-
:welcomesign; glad you're here, looking forward to hearing from you
-
:waving; Hi Lori -
From one mom to another I want to say welcome!
This is a wonderful group of people and you will get a lot of support here!
My daughter is 21 and was on hemo for 3 years, just got a transplant 10 weeks ago.
I know this is tough, watching your kid suffer and wishing you could fix it.
It's great to meet you! :cuddle;
Karol
-
Welcome. Do you think Dustin would want to join in as well. I am 31 and have been on hemo for just over 4 months. It would be nice to also have some younger guys around (no offense to anyone). Of course it is his decision, I can only say how bennificial this site has been for me. Anyways, glad you found IHD.
-
Hi Lori, Welcome to ihatedialysis.com. This is the place you need to be to find the answers to alot of your questions, even questions you may not even know you have ;) I have an upper arm fistula and i have a scar under my arm and one on the inside lower part of my arm from the surgery and then i have the 2 scars on the outer part of my arm where they dialyzed me from. I am currently on PD, has your son thought of maybe doing PD instead, the diet and the fluid are not AS restricted than being on hemo. I am so much happier and i feel better with PD. I hope to hear more from you and possibly Dustin as well. Hopefully you will find the support here outstanding, i know it is my #1 support and i love these members for all they have gotten me through. Good luck to you and Dustin and please do not hesitate to ask questions, post comments and/or concerns of your own. ;) Glad you are here. :grouphug;
Goofynina/Admin.
-
Welcome to the community! ;)
-
Welcome to our community. This is just the place for you to be. You will find out that you are not alone. There are many people here who understand exactly what you are going through, and will be there for you. Keep reading and keep posting. As George Jung said, why not encourage Dustin to come to this site as well. There isn't just dialysis stuff - there is also our arcade, and Renal Romance!
Bajanne, Moderator
-
Welcome Lori!
I also had my av fistula fail (not even 2 weeks ago).
I know you will like it here... it is a wealth of information.
-
Hi Lori, and :welcomesign; !
I was diagnosed with FSGS in 1990, at the age of 28. Started hemo in April 2006 and had a transplant in December!
You will find so much information and support here!
-
:welcomesign;
See You Around!
Tamara xxx ooo
-
:welcomesign; Lori to the community. Glad you joined us and are finding out all you can for Dustin. Must be difficult to watch your child struggle with this disease.
-
hello and :welcomesign;
-
Welcome to the site! When things get rough in the tranplant evaluation, just put your head down and charge on through it. Eventually things will look better
kitkatz,moderator
-
:welcomesign;
-
Welcome to the IHD family! :welcomesign;
-
Hello Lori!! :welcomesign; I know how you feel as my son was born with Caudal Regression and Vactryl Syndromes. My Jesse did not live past one year and 17 days and we had many ups and downs. I know the love and heartache you feel and the sometimes helplessness. I hope that you and Dustin will be very active on IHD and look forward to getting to know you.
Earlinda
-
Lori, Good luck with the tests, I am sure everything will be OK. You are a good mother to your son. I have a left arm fistula that works great. I am sure by now you have heard of the cream. He has to get a script but the cream will take away any pain of the needle. You just dab it all over the fistula about an hour or so before dialysis and wrap the site with saren wrap. Once at dialysis you just wash the site and it usually is numb. i had two fistulas in my right arm but they failed. prior to that i had 7 catheters!! They kept getting me ill.
-
:welcomesign; Lori and good luck. Hopefully the next fistula will work. Is PD an option? Hubby has been on nocturnal home hemo since Oct. 06. Did PD and in center hemo. This is way better!
-
Hi Lori1851 and :welcomesign;