Hi, Im Tammy from Georgia

[petstylist]

Hi there,
Errm I hate writing these things, but anyway, Ive been on PD for a little over 2 years now, hating every minute of it.  I fought off dialyss for 8 years by shear stubborness.  I have Focal segmental glomerulosclerosis which no one can tell me how I got or why.  I am on the transplant list and have 2 sister both of which dont want to get tested , so here I sit waiting for someone to die so I can live.  I really just need a few friends that wont tell me how lucky I am to have dialysis to keep me alive.
Anything else just ask,
Tammy

[willowtreewren]

Hi, Tammy!

I'm Aleta from Tennessee! Not too far from you! 

What a bummer about your sisters! You'll be able to read here about plenty of families like yours.

You'll find lots of support here, plus a ton of good information, but most of all, you'll get to know folks who truly understand.

Aleta

[MooseMom]

Hi Tammy!  I've been battling fsgs for 20 years.  I'm not on dialysis yet, but it's only a matter of time.  Like you, I don't know why I have this disease.  Most of us who have it also find it a mystery.  My son has autism, and like fsgs, I don't know why he is so afflicted, and I suppose that in the end, it doesn't matter.  If you and found out today what caused our fsgs, you'd still be on dialysis and I'd still be headed that way.

I think I am supposed to be politically correct here and tell you that regarding your sisters, donation is a heroic thing and everyone has the right to do with their bodies as they wish and should not feel guilty for not wanting to donate and blah blah blah.  All that might be true, but when it's your sister or your parent or your child whose life you could save, well, I'm sorry, but if you refuse even to get tested, then you deserve any guilt you may feel.  Life is filled with tough choices, and while we all have the freedom to make the choices we want, we also have to live with the consequences of those choices.  I'm sorry, but I can't feel a great deal of sympathy for anyone who willingly stands by and lets a loved one suffer on dialysis without even being tested for possible donation.  I am really sorry your sisters won't step up to the plate for you.  Do they have good reasons?  What explanations/excuses have they provided?

I suppose it is true that we are lucky that dialysis exists, but we are not lucky that we have to be on it.  In my little brain, anyone not on dialysis who tells you that you are lucky that you have dialysis to keep you alive is speaking code for, "You're alive, so you don't really need me to step up for you; YOUR dialysis lets ME off the hook."

Let's make a pact.  I promise never to tell you that you are lucky that you have dialysis to stay alive if you promise never to tell me that I am lucky not to BE on dialysis yet.  Just because I have not yet started D does not mean that I have come through all of this unscathed.

Welcome to IHD!

[looneytunes]

Hi Tammy and welcome!   

[petstylist]

Thanks for the welcomes everyone!
Moosemom, My sisters and I have never been close so i guess I shouldnt be surprized or expect them to but still they are my family and i would at least get tested for them.  My youngest sister has a family which makes me a little more tolerant of her not getting tested I guess, my middle sister (Im the oldest) has a million and one excuses her latest one today was that I didnt have a "plan" for my life while I was recovering from this.  We own a dog grooming business together and Im the only dog groomer working there at the moment and according to her I havent saved enough money and I have to many horses, if i got rid of a few she would think about it.  Sorry the horses are the one happy thing I have left to look forward to at the end of a long painfull day and they arent going untill Im dead.

Well Im sure thats more than any of ya'll wanted to know,
Looking forward to getting to know everyone
Tammy

[Rerun]

Hi Tammy, keep the horses.  You will get a transplant from someone who you won't OWE for the rest of your life.  You will be glad you waited. 

I'm glad you found us.  Lots to read here, but jump in anytime when you find a post that interests you.

Rerun, Moderator       

[galvo]

G'day, Tammy, and  . 

[boswife]

Hi Tammy, and    Dont ya feel better already having spoke some of your mind and not getting jumped for it    Great place here wirth people who are there right with ya.  Lots of different experiences from the D person and the caregivers.  Im wife and caregiver to hubby who's been on nxStage now for 5 months and though we hate Dialysis, its been a blessing to at least be home.  Glad you found it here and hope it  brings you some comfort..

[ihernandez]

hi tammy a big welcome from vancouver,wa my name is ivan ian i been doing dialysis for almost 8years im currently doing NxStage

[jbeany]

Wow, Tammy!  If you agree to live life according to her exacting rules, she might, possibly, consider doing something to save your life?  My guess is that she would have another condition to add to the list, even if you did get rid of the horses and tuck any the money from selling them into the bank. Stick to your guns - or is that your saddle? - and live the life you want.  The transplant list may be a longer wait, but it gets you to the same place in the end - only with your horses to ride when your health is back.

And Welcome to IHD!

jbeany, Moderator

[Bruno]

Hello Tammy and WELCOME

[peleroja]

Welcome to the group, Tammy.  Lots of good friends and information here.  Glad you found us!

[Ang]

 

[rsudock]

I wish people realize that donating isn't that life threatening! You are more likely to die in a car wreck. I just had a living donor non related and he gave me a kidney. He has two younger children and he didn't even think twice like ,"Oh man what happens if my kids' need a kidney." We are here on Earth to love and help one another. I seriously think sometimes that when family members are facing serious terminal disease and someone in their lives says, "I wish I could take away their pain and help them." I really wonder if they would do something or it is just the politically correct thing to say when you know there is nothing you can do.

Anyway sorry for the rambling...and WELCOME. Oh don't sell your horses. Live your life according to your rules!

xo,
R

[Poppylicious]

I wish people realize that donating isn't that life threatening! You are more likely to die in a car wreck. I just had a living donor non related and he gave me a kidney. He has two younger children and he didn't even think twice like ,"Oh man what happens if my kids' need a kidney."

Oops!  That thought has crossed my mind.  As has the "Will I even be able to have kids after this?" thought.  Oh, and the "Well, what if I'm one of the one in three thousand people who die whilst donating?" thought.  It's only natural. 

I'm still donating anyway though ... I could NOT donate and still not be blessed with babies, or get hit by a bus or have something happen which means I can't donate in the future.

Sorry for taking the thread off course, Tammy!    ... it's lovely to 'meet' you. 

*huggles*

[TINA HUBB]

Hi Tammy
I had a similiar experience. My daughter was born with ESRD. My husband began testing for her right away( I am not the right blood type). When she was 13 months and 20lbs , the docs said it was time to transplant. She never left the OR with that kidney due to vascular issues. She started dialysis again and we waited 5 yres for a 2nd chance. All the people (family & friends) who said that they would test when she was ready again  seemed to disappear when that time came. We ran my daughter's story in our local newspaper and 14 "strangers " came foward to be tested but not one was acceptable. My daughter's kidney came from her preschool and was her speech therapist. It's sad when family does not even get all the info needed to make an informed decision. That's what hurt me the most. Find out about the process and get the facts and risks before you decide.
Anyway, my point is that I do understand your pain and my heart goes out to you. I hope my story gives you the hope and faith that you need to believe that your Angel" will come along in one form or another.
I can also share with you that there is a great surgeon in Georgia at Piedmont and his name is Dr. Marty Sellers. I do not know if that is near you but he is a great Dr.
I wish you all the best on this journey and I will say a prayer that yours sisters come around and do what is the human thing to do.
Tina

[drgirlfriend]

 

Hi Tammy! Looks like you came to the right place for some support! Your sister sounds like a judgmental cow to me. Keep your horses.

[Bajanne]

Welcome to our community, Tammy!  So glad that you found us and decided to join us.  You will not regret it.  This is just the place when you want to rant, rage, rave or just vent!  There is information, support, encouragement, and even fun here.  You are now part of the IHD family  a group of wonderful caring and sharing people.  Just keep reading and keep posting, letting us know how you are doing.





Bajanne, Moderator

[Chris]

Hi Tammy ,
And no, I like to hear more about the horses. I like pets more than people tho