New member

[kit78]

Hi everyone!  This past June I had pneumonia and also found out I was in renal failure and losing my Transplant of 11 years!  So sad especially after receiving my kidney in 5 days of being put on the transplant list, a miracle in itself.  I inherited PKD from my Mother, however no one in her family had it...go figure!  So being new to dialysis has really been something.  It kicks my butt 3 times a week.  I do thin my body is finally learning to accept what is happening as I am finally getting stronger and not so weak after treatment.  Is this normal?  The weakness I mean?  Now it seem the more water taken out makes me weak.  But it still seems to be all over the place. Is there ever going to be a time I can come from treatment and feel normal?  Just wondering...

[Wat76]

Hi There, Welcome, I have PKD as well and when I first started Dialysis, it was hard on me.  Have them give you fluid at the end of your treatment and you will fill better if you are not carrying a lot of fluid and still using the bathroom.   I found out when they give me fluid during and after my treatment, I don't feel washed out.  Hope you feel better, it will get better over time.

Debra.

[M3Riddler]

Hi everyone!  This past June I had pneumonia and also found out I was in renal failure and losing my Transplant of 11 years!  So sad especially after receiving my kidney in 5 days of being put on the transplant list, a miracle in itself.  I inherited PKD from my Mother, however no one in her family had it...go figure!  So being new to dialysis has really been something.  It kicks my butt 3 times a week.  I do thin my body is finally learning to accept what is happening as I am finally getting stronger and not so weak after treatment.  Is this normal?  The weakness I mean?  Now it seem the more water taken out makes me weak.  But it still seems to be all over the place. Is there ever going to be a time I can come from treatment and feel normal?  Just wondering...

kit78,

Welcome to the group!!!
Five days is remarkable. Someone was on your side    
Regarding the dialysis, this is very common with in-center dialysis.  They tend to pull too much fluid off too fast at high blood flows. All of this together puts stress on the veins, your access and your heart as well. The body was not meant to handle the high blood flows they use.
The bloodstream can only hold a certain amount of fluid at a given time, so it does not matter how much they pull off, there is a certain limit and once it is reached, the body is being stressed.   This amount is 400cc's or .4 liters ( give or take as we are all different)  It takes time for the fluid to transfer from the tissues to the cells and back into the bloodstream.   The average in center treatment does not do this.
To prevent this, they should be pulling less fluid off per hour and at lower blood flows.  Many nephrologists know this, but if they are not questioned, they will not inform you about this.  One reason this is done is because of the amount of people they must dialyze and of course profit in many cases. 
Just as fluid takes time, phosphorus also takes time to transfer to the different compartments of the body.  For most people, even if they folllow  a strict diet, phosphorus will build up over time as the average 3-4 hour treatment is not enouph to remove enouph phosphorus from the body. Add this with your day off between treatments and the weekend, there is a net gain.     This is why you may see many people with bone issues. 

Dont be afraid to educate yourself instead of just going in and sticking your arm out. Ask questions, learn why your kidneys failed... Most importantly, do not be afraid to question your Medical Professionals.... the more you ask, the more they will openly tell you..

///M3R

[Poppylicious]

  kit!

[kit78]

Thank you for your responses.  Is there somewhere I can do a print out on what blood flow and how much water should be taken out as you have posted here?  These dialysis nurses seem to have a "know it all" attitude.  Just like having my fistula put in and then my doc told me to do squeeze ball exercises. But one of the nurses said that he should have told me to do arm curls as well.  I asked the doc about this and he said no, just squeeze's. I am learning that with all the questions I have I am being mislead a lot! This is very disturbing to me.  When I was in the hospital I had a new D nurse and told her to run it slow and she would not listen to me. I was having a lot of chest pain issues and come to find out it was the heart cath causing it.  There was a fibrous growth at the end of the cath, plus they put in the wrong cath, too short and a temporary one back in June. Once this was replaced the problems of pain, sweating and upper back pain are gone.  Couple of times thought I was going to have a heart attack the pain was so bad.  Glad that is over. 

[looneytunes]

Hey Kit178 and welcome!  I'm a care partner so won't be much help with your questions but did want to tell you that you've come to a good place for them.    You might want to start a thread in the "General" for these and I'll bet you will get a lot of input. 

        

[Sydnee]

hello,
 
can't help with your questions. Ed (my husband) when he was on hemo in center said that the nurses always seemed to contradict the dr.
any way 

[lmunchkin]

  Kit78.  Glad you found this site!  Lots of help here.

God Bless & again welcome,
lmunchkin

[RedMist]

For information about hemo paramaters Google dialysis core curriculum.  You should be able to find the core curriculum materials for techs, nurses and docs. They'll probably be in *.PDF format.

Joe