kidneys improving, stopping PD

[blondie1746]

After a little more than a year of PD, my kidneys have improved to where I might be able to stop doing PD.  Not sure for how long, but excited about this news.  My question is has anyone else had their kidney function return and been able to stop PD?  If so, for how long?  And how long did you leave your catheter in, before removing it?  Or did you ever remove it? 

I am worried about fluid retention, blood pressure issues and having to watch my diet.  I didn't really have to worry about these things during PD.  I haven't had to take BP meds since last March.  The only diet issues is eating enough protein and watching the phosphorus. 

Any input or experiences would be very welcome!

Sheri

[Whamo]

I've been reading where wheat hurts your kidneys.  Is that true?  I wonder.

[The_Vincester]

I haven't heard that happening much... it was a dream of mine once, though. I'm very happy for you! What happened to you kidneys initially to cause you to go on dialysis? Did you still have some function when you started?

[Lexxtech18]

You know, when I was on PD I noticed I was actually urinating! Only a little each day and I'm sure it wasn't quality output, but nonetheless I was peeing when I hadn't previously. I couldn't believe it. Then of course, once I went back to hemo I no longer urinated anymore. But it was nice for a little while. So, that being said I'm betting it's not very often that your kidney function will get better being on PD, but I suppose anything is possible.

Best of luck to you!!

[blondie1746]

I haven't heard that happening much... it was a dream of mine once, though. I'm very happy for you! What happened to you kidneys initially to cause you to go on dialysis? Did you still have some function when you started?

I have Multiple Myeloma, a blood cancer.  My body has produced too many proteins for my kidneys to process and it clogged my kidneys.  I had a stem cell transpant in March to fight the cancer and am in remission now.  But no signs of improvement until my tests in December!  They said once the kidneys are clogged up like that, you can't unclog them.  But apparently something is happening to return some function.  My kidney function was only 8% when I was diagnosed October 2011.  I was still urinating and had no symptoms but discovered the kidney failure in blood work.  I have continued to urinate the whole time I have been on PD.  We did more tests yesterday, and I find out the results next Friday. 

[blondie1746]

I am happy to report that my kidney function went up slightly from last month.  It is approx. 15.8% of function.  We have decided to try to go without dialysis and see what happens.  I will have to see my dr. once a week for blood tests to see if everything is still progressing well.  I will now need to go back on the renal diet and watch my potassium (and of course phosporous).  I also have to watch my fluid intake.  Those will be hard for me to do.  While on PD, I could pretty much drink as much as I wanted and didn't have to worry about potassium.  I do have Lasix to take, if I have problems with swelling.  But, I'm on my 3rd day w/o PD, and so far, so good!

My hope is that since the Multiple Myeloma caused my kidney failure, if it stays in remission, my kidneys will continue to recover, or at least not go back down in function.  I am enjoying my reprieve from PD so much.  If all goes well, I will eventually get to remove the catheter!  I can't even imagine what that will be like!  I hope others of you will also have success in either a transplant or improved kidney function!

[jeannea]

I hope things go well for you! Stay as healthy as you can.

[CebuShan]

Wow! Hope everything works out great!   

[RichardMEL]

gee that sounds pretty good - hopefully it's not short lived.. and yes the transition to the renal diet restrictions from PD can e quite a jump it seems, but I think better than hooking up so fingers crossed things work out longer term and the function improves...

 

[blondie1746]

Well folks, it was a short-lived reprieve from PD.  Blood work showed my kidneys were not functioning quite as well as it appeared while on dialysis.  So, I am back on PD.  But, we will keep  monitoring things, and maybe they will keep improving and one day I can stop for longer than 5 days.  Upside is I don't have to limit my fluids and don't have to restrict my potassium.  I have never had a problem with those while on PD.  Still have to watch the phosphorous and really need to get more protein.  That is my biggest obstacle.  I'm not a fan of most protein shots/shakes/drinks.  I know I just have to force myself to eat/drink them.  Anyone find something that they really like the flavor of?

[Lexxtech18]

Oh no. Sorry to hear you're back on PD, but it sounds like you're coping pretty well!  And you know we will always be here to cheer you on!

As far as protein goes... I like the SpecialK strawberry and chocolate shakes you can get at Walmart, Walgreens, etc. I'm not sure how much Phos is in them, though.  But they taste pretty good when they're straight from the fridge nice and cold. I wasn't really using them for protein so much as to try to lose weight. lol I've never really had a problem with my protein come to think of it.

[CebuShan]

I like the Nepro Berry. If I get the Pecan Praline from Nepro, I like to use it as a coffee creamer!   

[JLM]

Another way to do Nepro is to freeze it in a bowl and eat it like ice cream.  I like Vanilla, Berry and Pecan that way....

[travbug]

Where are you buying the Nepro brand?

[JLM]

A "gift' from my clinic.  They supply enough for me to take one every other day.  I go to a Fresenius clinic.  Or you can do a key word search on the internet.

[CebuShan]

I get it from the website. As long as you are a D patient, they give you a hefty discount compared to buying it in store. Call them and they will help you place an order and set up an account for you. You can also set it up as a recurring order. The only problem with that is it has to be the same flavor all the time, so I just order it as needed.
www.abbottstore.com
Phone: 1-800-258-7677 9 a.m. to 6 p.m. EST

[rubberstampingflowers]

Blondie, did they say anything about how much improvement you need to try again?  What I've been reading in my limited search so far is that 20% function and above is the magic number for coming off.  I am at that juncture and I am scared to death that if I come off, my slow improvement will plateau or go backwards.  I really want the improvement to continue and not mess it up.  My nephrologist says there are no studies that say that it will help or hurt that progress.  Right now I am waiting till the next 24hr urine collection in April to see what the progress is.  Then I will probably finish using the month's PD supplies before trying to come off.  The PD nurse said that I would have to irrigate my catheter about once a week with @ 200cc of dextrose and drain it back out to keep it functioning.  It is all very exciting and very scary!  I know that there are no guarantees that I won't have to contend with ESRD again, but I'm going to do my best to make sure is isn't my doing!  And I won't be getting any more IV contrast!  He had me go off for 2 nights and tested my BMP before and after and seemed happy with the results.  I have a vacation coming up traveling by car over spring break for 6 days.  It was to be my first trip away from home on PD.  I'm going to ask if we can do another before/after BMP to see how I do for that break.  I know I sound like chicken little! The more I learn about things that effect the kidneys, the more enemies lurking behind rocks there seems to be! 

[blondie1746]

flowers, my Nephr. said 15% was the magic number.   In December the results appeared to show my kidneys functioning at a litte over 15%.  He wanted to let me try going off dialysis then.  But my husband and I were a little nervous about it.  So we waited another month, did the tests again in January and they showed a little more improvement to almost 16%.  So I went off for 5 days, did blood work and it was actually only functioning at 10%.  So, back on dialysis.  I'm not sure what damaged your kidneys, but mine were damaged from multiple myeloma.  My only worry about coming off of dialysis was retaining fluids and having my ankles and feet swell.  But in those 5 days, I didn't have any swelling problems.  In fact, I felt great and was very surprised when he told me I was only at 10%.  My creatinine was over 5 and I usually am down between 2 and 3.  I also didn't have too much increase in BP while I was off.  I don't take any BP meds right now.  I've also talked to my Dr. about not traveling with my cycler, and not doing dialysis for a couple of short trips I have planned (1 is 3 nights and 1 is 2 nights) and he seemed agreeable to consider letting me do that.  But I did just get back from a 5 night trip and took my machine with me.   Travelling by car with the machine and supplies is easy.  Taking it on an airplane is a pain, but do-able.  Enjoy your spring break trip!