Hello Everybody!

[Ataraxia 242]

My name is April and I live on Long Island. I've been on dialysis for 12 years now..journey towards dialysis started when I was born w my left kidney being teeny tiny..so the right one took all the abuse..so long story short, I've had to have 2 bi uretal implanations, as my problem was urine reflux and i also could not stop wetting the bed. So when I got infections they went straight to my kidneys...100s of infections later, those infections had scarred up my right ureter. Fun times!
 I had to have 3 nephrostomies. A wonderful Dr. at Stony Brook Hospital after a 10 and a half hour surgery made me a new ureter out of some of my small intestine. That worked great, but I still got horrible kidney infections..No one warned me that anytime u have some kind of abdominal surgery that ur intestines can SHUT DOWN...So ..guess what happened 2 weeks later?! I started throwing up, and the PAIN .MY God...they had to force a tube down my nose into my stomach
.I couldn't eat. Only suck on lemon flavored Q tip thingees for 2 weeks. Well after that ordeal I was okay for over a decade.still getting inf, but nothing severe.THEN my bf at the time noticed after 3 days that I hadn't moved from the bed.(he worked long hours) So, he tried to wake me up and I was totally disoriented..BTW, it was Valentine's day..he had to carry me to the car and into the hospital..that's the day I had to be put on dialysis.. Started w a tube in my neck..FREAKED me out!! Eventually got a fistula, after the tessio(I've had 3 bc 2x Drs. Have SCREWED UP my Fistula!!/ So now I have a graft. I Am very noncompliant..I only go 2 days a week , unless I'm terribly bloated, and I'm not eligible for a transplant, as I have a pituitary adenoma, an adrenaline mass and a host of other comorbidities..Right now I'm working on finding a surgeon to take out my porce gallbladder.ugh. Well sorry, I know I'm a chatterer,lol. But I'm happy I found this site. It gets lonely when ppl jst don't understand what we go thru being on dialysis. I hope everyone here lives the best life they can 🤣

[Paul]

 
Hello April, welcome to the site.

You sure seem to have been through a lot. My best wishes to you.

You are so right when you say "ppl jst don't understand what we go thru being on dialysis", I get loads more sympathy for needing a walking stick than for being on dialysis!

[SweetyPie]

I was at a bad time and was happy I found this site as well. rhese people really helped me understand hemo and made sense about everything I was feeling. Its a blessing

[cassandra]

Welcome to the site April


   


Love, luck and strength, Cas

[iolaire]

Welcome to the group and good job making it 12 years!  Do you have some residual kidney function allowing you to only do sessions twice per week?

[Charlie B53]

Welcome to IHD!

I am more interested in this 'Non-Compliance' thing.   There could be a whole number of things the clinic may consider 'Non-Compliant', many may not make much difference, technical issues like I haven't stopped smoking.  They nag me about that.  So?

Then again there may be some issues that could have a great deal to do with how well your health may be.

Understanding the what's and why's may give better insight as to how to proceed.

I haven't gotten to your next posts yet, it is open in another tab.  But Labs can be improved with just a bit of attention to a healthier diet.  Learning how to change the way we have eaten is difficult.  The trick is deciding in Moderation.  It ain't always so easy.  Effort is needed.

Take Care,

Charlie B53