I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Metalangel28 on January 24, 2018, 06:52:36 AM

Title: Biggest complaints with Dialysis
Post by: Metalangel28 on January 24, 2018, 06:52:36 AM
What type of dialysis are you on and What are some of your biggest complaints, what types of things would you want to see changed within the treatment of dialysis.

For me, i was on PD, and it was very uncomfortable, at times even down right painful. The fills made me nauseous and the drains made it feel as though my internal organs were being ripped out of me, my abdomen became distended from all the fluid, that's where i gained a lot of my weight. Tubing also got tangled setting the alarm off at night,

What i would have changed with treatment is an easier way to sleep and maybe if possible do the drains and fills with less force. Kind of like the concept of an iv drip or a air restrictive baby bottle.
Title: Re: Biggest complaints with Dialysis
Post by: Paul on January 24, 2018, 02:47:39 PM

What type of dialysis are you on and What are some of your biggest complaints, what types of things would you want to see changed within the treatment of dialysis.

I am on HD. Wish I could do it overnight. Wish it did not sometimes leave me tired and useless afterwards. Wish the needles did not hurt. Wish I could use both hands during dialysis (but I am getting good pulling things with my feet and opening things with my teeth).
Title: Re: Biggest complaints with Dialysis
Post by: Cupcake on January 24, 2018, 10:16:08 PM
PD because I wanted to preserve my remaining function and easier on the whole body overall. Overall isn't terrible but I miss being spontaneous- I am traveling for a month and loading up the cycler and supplies fills my car to the brim. My solutions have already been delivered to the resort, but I wish the cycler was smaller and lighter. Also I love swimming, but I brave it in specific very clean, not crowded pools and cover catheter with a big sheet of tegaderm.
Title: Re: Biggest complaints with Dialysis
Post by: Charlie B53 on January 25, 2018, 04:56:35 AM

I did well on PD for 3 1/2 years until I screwed up and gave myself an infection that caused the need to remove my PD cath and immediately started Hemo.

PD is great in that it can easily be adjusted for YOUR particular bodily needs.  Smaller people cannot easily handle a large fill volume so your Nurse may help your decide on a smaller fill and increase the number of cycles. making for the same total fluid volume used during treatments.

Tidal setting may be an option.  Instead of a total drain and the pain of sucking you dry the machine can leave a small volume in and refill.  At the last drain the machine can 'pause' until you get up in the morning and hit the 'Start' button for a Manual drain to remove the rest of the fluid.  Only then will the machine proceed to any last fill, if  you have a last fill that you carry all day.

Talk to your Nurse about your pain, what and when they are, and ask if these options are available, if this may be a good option for your treatment.

Take Care,

Charlie B53
Title: Re: Biggest complaints with Dialysis
Post by: kristina on January 25, 2018, 06:17:43 AM

Hello,
I am on HD and I wish it did not always leave me so extremely tired afterwards. It is not a "normal" tiredness, but rather an exhausted tiredness.
Fortunately my kidneys (my two little fighters) are still functioning a little bit...
My access is a chest-cath and I had no problems with it so far and hopefully it continues like that...  :bow;
Best wishes from Kristina. :grouphug;
Title: Re: Biggest complaints with Dialysis
Post by: GA_DAWG on January 25, 2018, 09:44:23 AM
I am on hemo, and still the hardest part is the fluid restrictions. It is nearly impossible to attend any kind of social gathering and maintain the fluid restrictions, so you wind up somewhat isolated. The lidocaine cream that is available makes the pain more bearable. The tired feeling the rest of the day is hard, and the rest is kind of just the physical conditions. The recliners are worn out and hard to sit in for four hours. You must remain relatively still for the four hours. Some of the other patients have learned how to get around using earphones and are allowed to blast the TVs, pop gum incessantly, and otherwise show no regard for the other patients. Still, it keeps us alive and with our families.