Something Special Happening For Me

[Shaks24]

I have been doing PD now for almost a year and a half. During last months adequacy testing my Kt/v came in at 4.8. My nephrologist had me reduce my treatments from 7 nights a week to 6 nights a week and had me do another adequacy test a few weeks after the change. Well today I got the results and the Kt/v actually went higher to a 6. Now they have instructed me to forgo any dialysis this week and submit 24 hour urine and blood labs this Friday. I am hopeful that I can reduce treatment even more or maybe by some miracle stop dialysis all  together. Has anyone experienced a situation like this?

[Jean]

I am absolutely breathless for you. I will pray a miracle has happened and you will get better. Wonderful news.

[PaulBC]

That's really amazing news. What was the underlying cause? Is this something they suggested was even possible?

[Shaks24]

I think the underlying cause was uncontrolled high blood pressure. I had congestive heart failure in 2011 and while in the hospital for 5 nights they told me I had reduced kidney function. I think at this time it was 30% function. After discharge I started seeing a nephrologist on a regular basis. My kidney function dwindled down into the teens within about 2 years and I started having nasty symptoms around August of 2013. In September of 2013 I trained for and started PD. Now a year and a half or so later it seems that my kidneys are waking up. I am instructed to do no exchanges this week and then submit a 24 hour urine sample and blood sample at the end of this week. They also told me to call the clinic if I have any swelling or adverse affects. For the last few weeks they reduced my exchanges by 1 per week and ran labs and my adequacy actually increased from 4.8 to 6. Very strange.

[Shaks24]

Thank you for the kind words Jean. I hope you are well.

[kristina]

Great news Shaks 24! Lets hope it continues like that to give you a wonderful break !
Best wishes and good luck from Kristina.

[willowtreewren]

Oh, goodness. I certainly hope those kidneys of yours HAVE started functioning again!

 

Aleta

[Bambino_Bear]

That is so amazing!!  I am so happy for you.  Please keep me updated.   

[Shaks24]

Thanks Nikki and all. I will.

[cassandra]

       


Good luck, and strength to you, and your kidneys, Cas

[Bambino_Bear]

Hey Shaks!  Just wanted to check in with you and see how you are doing.  Do you know when the results are supposed to be back?  I have been thinking positive thoughts for you!   

[Rerun]

This has happened once before when Mary had Jesus!  It is called a Miracle !!  Yippee

I hope and pray you get off dialysis all together. 

            

[Shaks24]

Thanks Rerun. I have not hooked up for almost a week now. Don't feel too bad. A little punkiness  early in the mornings and my BP is up a bit. I turned in 24 hour urine sample on Friday plus had a blood sample drawn. We shall see.
Nikki, they said we should get results Monday or Tuesday. I plan to call the clinic tomorrow. One other thing I noticed this past week was a lot of itching around my ankles and legs. Last night it was horrible. I remain hopeful.

[cassandra]

The itching could be phosphates. Are you still taking those?

Love, and luck, Cas

[Shaks24]

Well we got results and my kidney function is 18%. Been feeling queezy early in the mornings. Also my phosphorus level spiked a bit. I guess thats why I have been itching lately. Its always been under control while doing dialysis. They instructed me to continue not doing treatments and to turn in yet another 24 hour urine sample and have blood drawn again this Friday. I see the Neph on the 9th so I guess we decide what to do at that point. I have been off the cycler for 9 nights now. My BP has spiked a bit too.

[marlinfshr]

Curiously, what has your creatinin been while on PD and how much did it go up once off? If any.

Why I ask is I want to get another opinion for me and see another Dr. Reason is I feel great. I know, I am on dialysis but I only do 2 manual exchanges/day which dwell for about 2 hours/dwell. My last adequacy test my KT/V came back at 4.8 with almost 3 liters of urine. I haven't cut back on output at all. If I drink more I'll urinate more.

I was initially put on dialysis because of stents placed and the dye used so my creatinin settled at 8 after the procedure. About a month later all my urine output came back (never lost it all though) and then I went on PD. This past year I had a bypass (unrelated to dialysis) and my neph insisted that the catheterization and the surgery killed my kidneys. They took a bit to wake up but wake up they did. I have no problem urinating everything I drink and I don't retain any fluids whatsoever. It is even the same color it's been my whole life, a bit darker in the AM and a paler yellow the rest of the day. I continue to eat and drink what i want and tests come back great.

I went on a trip and didn't do it for four days either (Shhhhhh!!!) and I felt great. Have missed other exchanges as well. again, i feel great. And because of a heavy bloated feeling with 2 liters I only put in 1.5 but they don't know. Blood tests are great. Out of the 4 DR's at my clinic the main one I use is the only one open for any change but it was hard getting her to change my prescription to only 2 bags and she still wonders why I hardly (if at all) use any green. The other Dr's insist on me doing 4 exchanges @ 6 hour dwells and use the green bags.

Creatinine is running a tad above 5 though so I know my kidneys aren't good. I'm just not convinced I need dialysis..

[Shaks24]

Hi Marlinfshr, Glad to hear you are feeling very well. Honestly on the creatinin level I don't know. For the year and a half on PD it has never been discussed with me until my labs this week where they just said the function was 18% after being off PD for a while. The labs discussed with me over the last year and a half have been about adequacy, potassium, phosphorus, hemoglobin, albumin and stuff like that. Its kind of confusing but while on PD kidney function was really never discussed except maybe as a part of the adequacy related to residual kidney function. I do not know what will happen next week but I hope at least to reduce frequency of PD some more. I certainly do not want to go back to feeling like I did when I started. I honestly thought they would tell me my function was back up to 30% or higher after the last 24 hour urine labs. Guess I was too optimistic.

[cassandra]

Hi Shaks, I'm sorry its not 30%, but I'd personally be very happy with 18 ( )  Just wanted to ask how you're feeling, and if you'r taking your binders and bp meds again. 

Enjoy your week holiday.


Lots of luck, and love, Cas

[Shaks24]

Thanks for asking Cas. You have always been so thoughtful and kind. I feel good. I get a little bit of a queezy feeling early in the morning but it goes away after a cup of coffee. As far as BP meds I am maxed out on dosages of 4 BP meds. I have taken these meds since before starting D and continue to take them now. I have never had any binders prescribed as my lab values have been good until they stopped my PD about 10 days ago and my phosphorus went a little bit above goal. I turn in another 24 hour urine sample and have blood drawn again tomorrow.

[cassandra]

Lots of good luck for tomorrow!

I'll be rooting for you, and sending possitive vibes

     


Love, Cas

[Charlie B53]

..................................
Creatinine is running a tad above 5 though so I know my kidneys aren't good. I'm just not convinced I need dialysis..

I'd be a bit leary about totally stopping dialysis.

I will agree that you may not need such a 'full' rigimein as you have proven that just a couple of exchanges may be sufficient.

Urine output alone is not a very good indicator of kidney function.  They can still removoe water without removing an adequate amount of toxins, thus those couple of exchanges are still benefitial.

[Angiepkd]

So happy things are going well for you!  I hope your function improves even more and you don't have to do D at all.  Keeping positive thoughts for you!

[Bambino_Bear]

Any news Shaks?

[Shaks24]

Hi Nikki! Yes. I saw the Nephrologist on Monday. My labs were very good but after two weeks off of PD the nausea in the mornings was getting quite bad. Not as bad as when I first started D but enough to cause dry heaves and a stong feeling of  anxiety. In a nut shell we decided to resume PD at a reduced frequency. I will hook up 5 nights a week instead of 7. I am very happy with that as 2 nights a week I can sleep like a champ. I would of loved to stop completely but its not worth it to get very sick again. I hope you and Justin are doing well. Is there any news on his quest for a transplant?

[cassandra]

Nice it's poss to reduce D, I hope you feel better soon in the morning.

Love, Cas