I'm off dialysis!!!

[Sunny]

Very cool! I'm so happy for you. This will mean you will have many more years with your own kidneys. Just keep up the good work in your efforts to keep those kidneys going for as long as you can.

[Chris]

Only advice I'd have for now is to get a new Neph after he told you that you'd never stop dialysis if he was monitoring your labs. He wouldn't instill trust and not listen to the patient.

One thing I'd do if you are still going to get labs done is still cut salt intake (help with bp, don't need high bp on kidneys), and eat healthy. Just not sure about lowering potassium, phosphorus, and red meat though.

So Congrats on stopping dialysis without having a transplant.

[cdwbrooklyn]

Hey Lori, this is great news!!!!   I so happy for you as God always show who's in Control.  This is beautiful.   I'm so happy someone was paying attention as doctors give unnecessary treatments/texts.   I prayer that you will never have to go on dialysis again.  Stay healthy

[coorsbob]

  All right its nice to hear such good stories that end well. You take care and drop in and let us know how you are doing.

[monrein]

That's a fantastic reprieve Lori and I'm thrilled for you.  Enjoy life and let us know from time to time how things are going for you.   

[Maker]

Lori! That's amazing news! Wow! If your creatine is 1.6 there is for sure no need for dialysis right now! I hope you can stay off dialysis as long as possible. Or forever?! Do you think that will happen?

What was your creatine when you started?

My creatinine was around 6 when I started Dialysis in Oct.  For whatever reason, I have always been very up & down during the 3 years since my diagnosis.  Unfortunately no Dr. has ever been able to figure out the cause of my "acute" episodes.  I definitely have not had a normal progression of my disease. 

Thanks everyone for the well wishes     I am planning some trips I would like to take later this year.  I will do a 24 hour urine in 2 weeks so please keep me in your prayers that it will show I am doing well even off dialysis.  I can tell my Dr. is very skeptical, he said this morning that he is "delaying" dialysis for 2 weeks.  I obviously am planning on it being much longer than that 

[dyann]

Great news gives me hope
it is true pray can do wonderful things

[Rerun]

Great news.  I think dialysis patients are on high protein diets because the machine sucks it out.  Non dialysis patients are "usually" on low protein diets as it is hard on the kidneys to process protein.  Not sure on this so check it out with a DIFFERENT Nephrologist.

                   

[RichardMEL]

I agree with rerun re protein. That's my understanding also.

Yes Lori you need to be off more than two weeks so you can come down under and have a holiday!!!   

hehehehe

[Sunny]

I'm on a low protein diet and it is recommended by my nephrologist at Stanford (I am pre-dialysis). You need some protein, though, just figure out what kind your body tolerates and how much your body needs. Also stay well hydrated. Often people with low functioning kidneys take blood pressure meds to keep the kidneys from working so hard. These are just some ideas for you because I want you to do well with the kidneys you have. Good luck.

[draven]

just read this post


congrats 

[Maker]

Great news.  I think dialysis patients are on high protein diets because the machine sucks it out.  Non dialysis patients are "usually" on low protein diets as it is hard on the kidneys to process protein.  Not sure on this so check it out with a DIFFERENT Nephrologist.

                   

Thanks Rerun, Sunny, Richard, & everyone for the advice!  I am drinking water like its my job.  I will be looking into the protein question.  I'm thinking about getting back in with my pre-dialysis neph. 

And thanks Richard, I would love to visit your part of the world someday!!

[RichardMEL]

So you're drinking lots of water and not retaining it? Were you always passing lots when on D?

I'm astounded and so pleased for you.!!! 

[jennyc]

Oh, that is so awesome! keep healthy, eat well, stay away from alcohol. Good luck Lori. Congrats 

[Maker]

So you're drinking lots of water and not retaining it? Were you always passing lots when on D?

I'm astounded and so pleased for you.!!! 

For the most part, yes.  When I started dialysis in OCT I my creatinine was around 6 and so I was retaining fluid.  In the first several weeks they took 4-5 kilos off total, and since then I haven't retained at all 

No problems at all now...in fact trying to stay as hydrated as possible!

[thegrammalady]

  fantastic news 

[Zog]

You are stopping dialysis!?!?!?!  Usually when someone says that on here they got a transplant or can't take it anymore.  You have restored my faith in the kidney's ability to heal which none of our neph's seem to believe in.  Did they ever figure out what caused your kidney problems in the first place? 

 Does anyone else in your family have kidney problems?  My wife lost her kidneys to a congenital defect, VUR, and no one found it till it was too late.  I thought of that after reading you were from Ohio.  She is from Ohio too.  I know not everyone in Ohio has kidney problems so my logic is silly, but I was trying to figure this out.  It sounds amazing!  Are you going to get your fistula ligated?  We did that once after she had a transplant that worked a few years.  We probably would not have done it if we had know the transplant would have given up a few months later.

This is great news!

[nycrtst85]

Congartulations,i hope you never ever have to walk into a d center again.God is great doctors can be wrong at times,one question is how big were your kidneys since you started???i'm 24 and have been on dialysis since 2008 and my kidneys are really small but i can still pee and use the bathroom.it's when i take those chemical based medications that i do not pee well.thats why i stopped taking them altogether.God blessed you it's clear thats wwhy i'll always have faith .

[nycrtst85]

congartulations,God blessed you and thats why i'll never lose faith.one question i have is how big your kidneys were when you started??? because i'm 24 been on dialysis since 2008 and my kidneys are small and still pee well but the medicatons are what makes me pee less so i stopped taking them.

[okarol]

How are you doing Maker?

[st789]

Way to be your own advocate and hold your own ground.  Faith has a way of give us hope and some solitude.

Wish for your creatine to stay lower.  Take care.

[peleroja]

Many congratulations and a great big hug to you.  Keep up the good work.  I love success stories.   

[chiefsfan301]

What a wonderful gift, enjoy it everyday!

[Ken Shelmerdine]

Maker, what a fantastic outcome congratulations 

[jg]

Lori:
 

You are a success story. Keep it going (your kidneys lol).

I was diagnosed in 1990 but avoided dialysis for 15 years.

My suggestions:
1. Find a kidney doctor who believes you can avoid dialysis permanently/ for a long time.
2. Get to know your body well.
3. Do research on the net about kidneys.
4. Live a reasonably healthy lifestyle.
5. Hang with other people who believe in healthy living.
6. Beware  of snake oil salesmen, "instant  curers"  and those who say they have all the answers.
7. Love    your 2 kidneys.

Good Luck
jg