I have been on stage 4 but still not on dialysis

[Judi]

Re: I have been on stage 4 but still not on dialysis

Hello Jan

I've been stage 4 for two years now And i'm not on dialysis either .My function as of this month is stable.It's now 29% it wa 17%..So its good news i found this out just this monday(5-14-12).And i agree with people that says exercise helps becasue I ride the exercise bike every other night.

[Marina]

Re: I have been on stage 4 but still not on dialysis

ESRD or stage 5 is when you start dialysis. Although most drs are now waiting until patients are symptomatic, so you can have a low GFR and not start dialysis.
It's up to your dr and you, in some cases.
My neph decided to start very early on (13-15%) which I was grateful for. Only symptoms I occasionally had as nausea.
My energy remained the same throughout my 6 1/2 PD journey.
At time of Transplant I still had 8% GFR.

[IHaveFaith]

Re: I have been on stage 4 but still not on dialysis

Dac,

I believe I have the book you reference and they provide contact information for a place to purchase amino acids which were given to the patients that followed the diet during the research from which the book was derived. If memory serves me, I believe it is clearly referenced in the book, thus it should be relatively easy to find.

My best to you.

[jenjen76]

Re: I have been on stage 4 but still not on dialysis

dac-I was wondering if you have IGA or FSGS? Only cuz you were talking about low protein and amino acids -if so have you heard of dr.mackenzie walser? He was a professor at john hopkins and wrote a book called -coping with kidney disease if you have nephrotic syndrome fsgs or Iga I highly recommend this book-because those are systemic and most always you spill protein this is a very enlightening book!!

[jenjen76]

Re: I have been on stage 4 but still not on dialysis

LOL I just reread your post and im sure we are talking about the same book-good for you!!!

[Amanda58]

Yes i can agree with you becuz I was in stage 4 and maintained my job, social life,and felt great for 2 years before my doctor said he was no longer ok with my not being on dialysis. My recommendation to you is to go on PD first, and not Hemo. The PD is an every night comittment,however, It is much gentler to your body than Hemo. You don't have as many diet restrictions,either.

[kcramer]

Lorim I too have Polycystic Kidney disease and parathyroid problems caused by the kidney's. You will love this site. It is the one the counselor at the hospital told me about. I have been in stage 4 for three years now. Getting closer to stage 5 but still staying stable for 6 months at a time since I retired July of 2011. Less stress and being able to drink plenty of water and use the bathroom when I needed to was very helpful. School teachers have to be the younger students and breaks are when the students are at recess or lunch or specials. I am enjoying retirement. Have a strong faith in God and keep looking at this site for encouragement along with recipes. Have a good Christmas holiday. I down loaded some real good cookies and bread today which would be great for the Christmas holidays but remember to eat only a serving.

[Margie1944]

Judi
How did you do it. I am at 21% as of right now and close to dialysis. Thanks,Margie

[Margie1944]

What did you do.

[judi1975]

hello,Margie1944

I just exrcise by doing my Zumba I watch what i eat ,take my meds.My nephrologist thought i would be on dialysis by now.But surpise I'm not and I was diagnosed July 9,2010.

[stumpr54]

My Home Hemodialysis Journey - So Far

Hello All,

I was diagnosed with polycystic kidney disease in 2002 and under a nephrologist's care since that time. I met with him annually and did annual blood work to monitor my kidney function and nutritional values and especially my blood pressure - changing my BP meds to manage my BP and my kidney function - some BP meds will adversely affect creatinine values, particularly diuretics. I got into Stage IV sometime in 2009 and Stage V in 2011 or thereabouts. I did pick up my exercise regimen in late 2009 and lost a few pounds to get to between 158 to 162 at 5' 9".

I started observing the "kidney diet" in early 2012 after a miserable episode of itching, cramps, sleeplessness and tiredness. This came after consuming a double chocolate ice cream bar and a Italian meats party sub. Oddly, my phoshorus and potassium levels with binders stayed pretty much in check. My nephrologist predicted that I would need to start dialysis in the spring of 2012 but my values held steady through April and then tanked in May. I still wasn't ready to begin dialysis, but there was a training slot available in the DaVita home hemodialysis center that my nephrologist was affiliated with, and I committed to begin training on July 16, 2012.

The week before I began training I took what I thought would be my last week long business trip, and had no issues with my energy level, appetite, sleep, etc. I experienced some infiltration issues with my seemingly wonderful fistula that was created in October 2011, but with persistence and a fistullogram I had functioning buttonholes that I could cannulate myself and shortly after Labor Day 2012, I went home to begin my journey of home hemodialysis with the NxStage System1 and the Pureflow SL.

Since then, there have been cannulation challenges as my fistula matured and changed the orientation of the tract to the fistula flap and at one point I began the development of a new buttonhole for my venous access that I still use successfully today, albeit with rather clever left hand and finger usage (Lower Arm AVF) to both advance the 15 ga blunt dialysis needle and restrain the fistula to prevent the flap from moving away from the needle tip. It beats 15 to 20 minutes of frustrating poking around to get the venous needle in - 30 seconds to a minute is just fine.

My wife/care partner and I have had challenges with the NxStage equipment - when it fails, it fails hard, but we've received remarkable support from NxStage 24-7 Tech Support and when a piece of equipment fails, they've got a replacemnt unit on a flight in less than 12 hours and at my door step in 12 (System 1 Cycler) to 36 hours (Pureflow SL dialysate maker/storer).

I'm listed wiith two kidney transplant programs in my state, and while I'm coming up on the 2-1/2 years when I should be expecting the call, I don't sweat it at all because the home hemo gig has gone well and I just started leveraging DaVita dialysis in-center clinics in the big cities where I travel to work periodically.

I'm currently treating at DaVita Upstate Dialysis Center #00382, 308 Mills Avenue Greenville, SC 29605, where site Admin, Chris has been wonderfully accomodating to my work schedule, and Tonya and the rest of the staff, and now nocturnal patients have been great. I'll be back for an afternoon treatment on Saturday, which will complete the 5 treatments that I do weekly as my home hemo regimen.

I have mind numbing flexibility when I'm doing my normal home hemo routine, mixing treatments from a 30 to 60 liter nocturnal treatment (qualified through a NxStage nocturnal study for FDA approval) to 20 to 30 liter daily treatments depending on my work and play schedule. I can do my daily treatments first thing in the morning - Saturday or Sunday or a weekday before I head to the airport for business. I can do daily treatments in the afternoon during the football season while watching a 3-1/2 NFL game, or I can do them late at night (not before a work day though) watching TV, DVD's, or my vast assortment of now handily digitized (from LP's, CD's, 45's, cassettes) music.

All of this is made possible by my very capable and engaged medical support staff at DaVita Bluemound At Home, and my remarkably patient and thoroughly competent care partner/wife.

[Margie1944]

Judi
What kind of diet are you on and are you restricted to 32-48 oz of fluids. I would love to know how you got your GFR to 29%.
Thanks
Margir

[Margie1944]

Judi
What kind of diet are you on and are you restricted to 32-48 oz of fluids. I would love to know how you got your GFR to 29%.
Thanks
Margie

[judi1975]

Yes I 'am restricted , I restricted myself I cut out soda Finally, I drink a lot of cranberry juice,and or water .I excercise zumba fitness and i just try and mantain it ,I don't know if i'm still at 25% i will find out what my GFR is on monday sept 9th.When i go see my neph.

[rickster12]

I was able to hold off dialysis for 3 and 1/3 years from diagnosis at stage 3. One important thing is to minimize sodium and another is following the diet. I was never a big alcohol drinker, an occasional glass of wine was it for me. And another huge factor, a positive attitude.