I'm new here...

[jodiannewilson]

Hi, my name is Jodi and I have stage 4 ESRD. I was diagnosed 2 years ago and started the process of having a fistula put in. Prior to this my kidneys were functioning at 15 %. Three weeks ago, at my nephrologist appointment, he asked how I was feeling before we went over my labs. I was feeling rundown and tired,  he then informed me that I would have to start dialysis.  After my third session I ended up in the hospital.  After 5 days in the hospital they told me that my body is just trying to adjust...if anyone could explain how in suppose to feel before and after sessions, and how the body feels... I've been experiencing headaches, cramping, tightness in my chest and shortness of breathe. I'm glad to have found this site. Thank you for all you do.

[cassandra]

Welcome to the site Jodi


   


Take care, Cas

[Michael Murphy]

I have a tee shirt that sums up dialysis  Dialysis  Damned if you do, Dead if you don’t.  There is no doubt that this is a kink in your life style.  However if you  remember that it is your body and you have final say on things like fluid removal.  One problem is a one size fits all approach to fluid removal, if you have Residual Kidney Function then the 32 oz rule should be 32 oz over your output.  During the first 4 years of my dialysis I eliminated what I drank .  I proved this by once a month checking input to output.  As long as they were close I only let a kilo be removed.  When ever a tech or nurse took off more I felt like crap.  My devise digital scale plastic cup weigh your out put and compare to input.

[jodiannewilson]

Thanks Michael...I've been having a hard time with all this so any support is greatly appreciated.

[iolaire]

Welcome to the group.  I'm glad you found the site regardless of how your body responds to dialysis, you will be better off if you understand the process and can help direct your care in the method most appropriate for you. 

As to how it feels after dialysis it really depends on the person.  On this site I've read many members stories for whom dialysis is almost unbearable. Yet for me it really was not that big of a deal. I'd go in the afternoon and get out at about 7 pm, I might feel washed out and want to go to bed early (say 9) after dinner, some other days were worse than others and that's usually when I felt too much water was taken off.

I second Michael's story as long as you are still peeing you should be cautious that the clinic might try to pull off too much weight - that's assuming you don't have the normal signs of bloating including water by the ankles and water around the lungs which the nurse could hear when listing to your chest.  I think the clinics are used to people who come in after a huge final collapse of their kidney's not people who prepare and transition to dialysis well they still have some kidney function.

Please make sure you work with your nephrologist closely to get the treatments right for you.  Once you are sort of settled in you will only see your nephrologist once per month, but well you are just starting it should be more frequent. It might take some trial and error.  You could mess around with your liquid removal fairly easily (tell the tech/nurse that you want to try it with less water removal if you are not bloated), otherwise there are different prescriptions for the dialysis that your nephrologist can make, that includes different ratios of the normal dialysis fluids and also different styles of fluids entirely. 

Maybe someone else can share more on the different types of dialysis prescription options in center?

[kickingandscreaming]

Welcome.  As someone who has done both in-center Hemo  and home PD, I can say unequivocally that PD is much gentler on the body and does a great job--especially if you are still peeing.  So I'm asking whether you have considered PD?  It's not too late, and your fistula will serve as a backup for years down the line when you may have to switch back to Hemo.

[Simon Dog]

Welcome.  As someone who has done both in-center Hemo  and home PD, I can say unequivocally that PD is much gentler on the body and does a great job--especially if you are still peeing.  So I'm asking whether you have considered PD?  It's not too late, and your fistula will serve as a backup for years down the line when you may have to switch back to Hemo.

As someone who has done both, I can heartily recommend PD if it works for you.   I am on home HD now, but found PD to be a much easier protocol.

On this site I've read many members stories for whom dialysis is almost unbearable. Yet for me it really was not that big of a deal.

My doc tells me the same thing.  He tells me I can afford to wait for a decent KDPI organ, but that he has patients who find dialysis so hard that he would recommend they take anything offered.

Once you are sort of settled in you will only see your nephrologist once per month

I got very lucky, and have a nephrologist who makes himself available for email consults throughout the month.  I was a "heavy user" of this service in my first few months of treatment, but I now set a monthly goal of doing all my treatments and not bothering the doc.

[Charlie B53]

Determining the correct 'Dry Weight' isn't easy.  Clinics often tend to try to remove far too much water weight which causes extreme fatigue, possible muscle cramping.  Not any fun at all.   I tend to break out in a severe sweat a few minutes before the cramps begin, so I have a minute to get the Tech's attention and get them to reset the machine to stop removing any more water.

Knowing your body, pay strict attention to your weight, diet, and fluid intake can make a huge difference.  Staying right near the edge of having a dry mouth and throat, limiting your fluid intake to prevent the dryness, but just barely, can keep the amount the clinic needs to take off during treatments to a minimum.  Many days I weight in barely a kilo over, and those days I feel fine afterwards.

Today, well, it wasn't one of those days.  I was SHOCKED weighing in 3.7 over.  Even the Tech asked me what went wrong as she knows, I don't do that.   We finally figured out it must have been the Chinese diner Friday night, and the left-overs Sat afternoon.  MSG will dry you out, or make you feel like you are dried out.  Causing me to take another mouthful of water far more often than I normally would.  All those mouthfuls added up to a LOT.

I won't be going back to that restaurant very soon.

Careful about what you eat, and how much you drink.  Learn what is best for you.

Take Care,

Charlie B53