Intro

[Kansas75]

Hello everyone,
I have been lurking for a couple of months, learning a lot reading through all the forums and figured I might as well introduce myself.  I am CKG Stage 5, 11% GFR and will have my AV fistula surgery in a few days.  It’s FSGS and I am the last in my family to do the dialysis/transplant thing.  My dad is already on his second transplant, my sister has been on dialysis for four years and is still waiting for hers, I am listed and I guess will soon go on dialysis as well.  I am currently on an overseas work assignment, which I plan on continuing until I have to start dialysis or the assignment is over.  So far I am feeling good, i.e. aside from fatigue I don’t have any noticeable symptoms and EPO is taking care of most of mire tiredness.  My husband and kids are back in the States.  My husband thinks I should tell the kids about my fistula surgery (that will be done overseas), I think I can wait until my next home leave where I can the sit down with them and explain to them where I am at and what is going to happen over the next months/years.  Thoughts?  Recommendations?  How did you tell your children?  Mine are 6 and 12 years old.

[iolaire]

Welcome to the group.  I don't have kids so I never had to communicate the problem but one thought is if one of your family still has a fistula and you could tell your kids about your upcoming surgery using that person on the other end doing a show and tell?  I would think the kids might find it fairly minor news if they see the fistula on say your sister and you tell them that you are getting the same thing done?

[smartcookie]

Welcome!  I am sorry you are finding yourself in this predicament, but am glad you are feeling pretty good!  I hope you can finish out your work assignment without having to start dialysis.  I don't have children, either, but I think Iolaire's advice is pretty solid.  It is a hard line to travel.  Do you give them information and hope they can deal with it or do you protect them and not tell them?  Please keep us updated on your progress and what you decide. 

[cassandra]

Welcome to the site Kansas75

   


Take care, Cas

[Rerun]

Welcome, I'm so glad you found us. 

WELCOME- RERUN, Admin    

[OldKritter]

welcome to our group

[SooMK]

Welcome!

[Michael Murphy]

Welcome to the site.  Getting your fistula created early is a very smart decision.  At a GFR at your level you may get several more years before dialysis.  I did and I loved the 2 years I got.  But every one is different.  It seems with your family connection you are very knowledgeable about this disease.  I am sure your kids are aware of the impact of the disease and telling them you are having a fistula created as a precaution should not be too traumatic.  It better they hear the news from you to reassure them that it's okay.

[LoneHighway]

What's the issue with telling the children? I was in that age range when my mother was diagnosed with PKD. I felt sadness and fear that she would die, but not knowing what was happening would not have helped. For some reason my biggest concern at that time was she would die before I graduated from high school, which she did. She died when I was 15. Not knowing the facts would not have helped my coping.