Hi I'm Kate and these ugly things are nygrrsr

[KellosKidney]

I'm Kate and I have polycystic kidney disease. I inherited it from my dad (rip age 59 in 1993).  Now here I am, the same age that he was when his kidneys had gone downhill enough that he was tied to the dialysis machine which was a 45 minute drive each way, three times a week.

As for myself - b4 5

[cassandra]

Welcome to the site Kate


 


Look into all your options, don't rule out Home Hemo. The amount of time added to 'living' by not having yourself transported in/out clinic is not to be sneezed at 


Take care, Cas

[Charlie B53]

Hi Kate!

Welcome to IHD.  Sorry to learn of your Dad.

I am a recent Hemo patient, only one year so far.  But in that short time I have had to learn what NOT to eat, and how much to limit some of the other foods to just a small bite to keep my labs in check.

The hardest is to keep my fluids low enough to keep the amount of fluid needing to be taken off at treatments as low as possible.  Some days are much easier than others and other days the fluids sneak in.  I may think I am doing fine but the scale tells me differently.  It isn't always so easy, but I keep trying.

Take Care,

Charlie B53

[Paul]

 
Hello Kate. Welcome to the site.

[KellosKidney]

Thank you all for the welcome - my phone froze in the middle of the post and I didn't get to finish it which is why it ended so strangely I look forward to meeting all of you and learning more about dialysis, transplant, etc. as I have no "real life" people to speak with about all of this, at least not someone who is living with kidney disease. Thanks for letting me join in!

[SooMK]

Welcome! These inherited kidney diseases are tough. I am glad my mom died before realizing that the kidney disease of unknown cause she had was actually the first (AFAIK) of an inherited disease for her family. She would have been so sad. I don't read much about the emotional burden of inherited diseases but maybe that's because what can you say?