Rant -I Hate Dialysis

[kitkatz]

After eight years ( I know, I know I keep harping on the time) I decided last night that I HATE dialysis!  Before I was tolerating it, even tolerant of the shenanigans that dialysis puts me through.  I am going to have a rant here right now. Ready?

Reasons I hate dialysis:
The unit is too cold even with a blanket over me and doubled.
I have to take my weight every time I am there, EVERY TIME, twice!
I have been told to watch my weight and try to lose some. HAH!  Dialysis is nuts when you lose weight on it. You could kill yourself because the water weight and your dry weight are not getting along.
Fluid over load in my tissues and lungs!  Hard to breathe and walk and distance sometimes.
I have to bring my own snack,ice, sheet to cover the chair, and a blanket, as well as things to amuse myself with for four hours. ( Book, newspaper, DVD player, headphones, etc.)
There is no place to put my stuff other than a tiny table attached to the chair.  And the table can suddenly decide to let go and wham goes all of my stuff crashing to the floor.  A tech can bump my stuff and knock it all over.
The computer system has private information up on the screen that belongs to me. I did not think they could have the SS# up on   the screen for privacy sake.  Anyone can take the number anytime they walk in the unit.  When I mentioned this to the unit director I was told they were getting a new system and the information should be down soon.  It should have been taken down the minute it was noticed!
YES I am ranting here...
I also hate:
Being left sitting in my own blood after the sites leaked while I was holding them. Clean it up damn it!
I hate it when a nerve is hit with a needle and I have to find one comfortable spot and keep the arm in that postion all night long.
I hate two inch needle going into my body three days a week.
I hate having my blood recycled and returned to me clean three days a week.
I hate sitting in the same spot for four hours at a time and noone comes by to talk to you unless you do not feel well. Then you have all of the attention you want and more. Then they leave again.
I hate taking 4 to 5 kilos off of the body in water weight every time I go in to dialysis.  I know I need to watch the water gain, but it is difficult.
I hate the fluid restrictions.  Do not offer me another damned glass of ice. I am sick of ice, ice, ice! 
I am tired of having to get a rootbeer, or sprite or something clear instead of the huge soda I want to drink.
I am tired of only having one can of soda a day, then ice, ice, ice.
I hate the food restriction on the renal diet.  They make me want to scream, scream, scream!
I hate being treated like child when I get my blood work back.  Here is your sticker or smiley face.   Who gives a rat's ass about a sticker. I want to know if I am doing all right and sit with me and talk to me about food choices and what I am eating.  The mother hen act grows old with me.  I am an adult, duh!
I hate it when the center does not have sure seals for me to use.  Buy the damned supplies already!
Clean the place up for God's sake. It should not look like a litter bug landed in the unit all day long.  Put the trash in the trash can.
Try to keep me close to my on time as possible.  Geez, I am on the last group on, and usually the last one off.  I do NOT want to go home with the staff at eight o'clock at night when I should have been gone between 7:00 and 7:30p.m. And DO NOT get aggravated with me if I bleed for along time.  It is not my fault you got me on late and took me off late!  Manage your time better.

I am "sick" if it, I am tired of the crap I have to put up with, I HATE dialysis!
SO THERE!!!

[Rerun]

You Go Girl!  I agree ten times~!! 

[kevno]

Good Rant

A lot of things we renal patients do not like be just have to carry on with to survive. Whatever that is. I too hate, as you know all things to do with dialysis. Even more that the needle thing is starting again. Today got to the unit for 7.30am did not get on until 8.25am . No option but to wait my turn to get on, that does not bother me. It's when I see that the other rooms have finished putting patients on, and do not help to put the other patients on in the other rooms, when they have been waiting nearly an hour.It's as if I have done my bit, why should I do more. My transport home is great. Always there when I get off the machine.

Can't grumble really, in the 70's got to the unit for 8am, had to put the kidney together. so on for 9 - 9.30am off for 3 - 3.30pm used to be on for 6 hours at a time 3x a week in those days. Then the getting home bit (what a joke!) the unit closed a 5pm. I was always still waiting for transport home. So all the Nurses went home and I was taken down to the theater waiting room. It was as late as 7pm before transport came to pick me up home for 8pm. I waited so many time in that theater waiting room. A TV was put in for me.

At least now:

No holding down for the needles
No arm being strapped to a board to keep it straight
No Valium to calm me down
No going Off in the first hour (You could not set the machines like you can now)
No waiting for transport home
No waiting an hour to stop bleeding (They used a lot of heparin in those days, Sometimes you had to be given a clotting agent)

I know it was a different time, plus a different place but the memories are all still there.

Been thinking of you Kitkatz, hows your Husband doing? Up to now for me it was a good decision to refuse that amputation on the 10th April. Now I do not even walk with a stick. The surgeon can not believe how I have done it. I think it was the time that renal patient was sent to see me who had had the operation. I made up my mind then. No why am I having that done.

Slowly working my way back into the site. Too many thing going on again, a bit like you, in one of those moods

[Sara]

I think it was the time that renal patient was sent to see me who had had the operation. I made up my mind then. No why am I having that done.

Did you post about that particular patient changing your mind?  I don't remember reading it and would be interested if you didn't mind posting it. 


  to Kat

[kitkatz]

The hubby is doing good.  I try to post regular updates in the off topic area.

[DeLana]

I wish I had any words of wisdom to help you feel better, but I don't.  All your points are very valid.

Just know that others care.

DeLana   

[anja]

Sorry, Kitkat , that you are feeling so tough.  But, thank goodness the mood will lift and you will see the good in life again.  You're going through all this because your hubby needs you, your daughters need you, and we do too!  Come back, come back, don't leave us...don't go over the  edge, don't let dialysis win~  Continue to 'kick death's a$$" (quote by LifeOnHold-we do so miss you )

[jedimaster]

I send you a warm hough....couldn't agree more....

[scyankee]

Kitkatz,
  Amen to everything you ranted about!
  I still SCREAM on the way home from my treatments in the car how much I hate them, hate dialysis, hate everything!
  I don't bother to converse with the staff since they don't give a sh_t about me and I don't give a sh_t about them.
  What really pisses me off continually having to wait almost an hour to go to a chair.   Others just waltz right in.  I know
that they are just as fed up with me as I am with them.  I WILL NEVER ACCEPT THIS WAY OF LIFE. It is a joke how
they run the unit.
  My BP is still very high due to the stress of going there!  Now they increased my med.  Can't wait for my pressure to
drop and have no one in the bay!!!!!!  I'll enjoy watching them run around when I crash!!!!!!!!!!!!!!!!!
  Hope you feel better after your rant.
  SCYankee

[kitkatz]

I don't really feel better about going back to dialysis today. But I am going to take a stand and write a letter of complaint about the things that are happening to me in the unit.  Maybe if I get this information to someone I will feel better about being there so much!
I am putting a copy of the letter here.

To Whom It Concerns:

I have some areas of concern within the dialysis unit.  I wanted to bring these areas of concern to someone’s attention and see what can be done to change them.

1.The dialysis unit is frequently too cold to sit in comfortably for four hours. I realize staff is running around in warm overcoats working hard for the most part; however as someone who comes in and sits for four hours at a stretch, it is way to cold for comfort.  The cold air is blowing down onto my face and down my neck constantly.  It makes me very cold and the thick blanket I bring does not help unless I cover my head with it.  I am going to look pretty silly in Southern California bring in a scarf and ear muffs to dialysis.  Something has to be done.  Several other patients complain about the cold frequently, too.  Often no one does anything about it and I am left feeling cold and miserable for four hours.  When I get cold I tend to stay cold. I also get sore physically and this makes me extremely irritable.
2.  I have been left sitting in my own blood after I have had needles pulled and have leaked on the chuck underneath my arm.  I do not want to be left sitting in blood no more than a few minutes.  It would not be hard for whoever is taking care of me to grab another blue chuck and put it underneath my arm immediately after the leak happens.  I know the other day my sister walked into the unit and saw all the blood underneath my arm on the chuck and said: “Icky. That looks gross.”  I had already asked twice for a new chuck to be brought over.  I should not have to ask for a clean one, it should be automatic thing techs and nurses do to keep the patient clean and the unit clean. 
3.  Where are the sure seals?  I bleed without them on my sites.  There is no excuse for running out of something some of the dialysis patients need to use on a regular basis.  I realize the sure seals are more expensive than regular bandages, however the cost of the use of extra supplies such as gauze, tape, chucks, clean up supplies, and regular bandages used in helping me to stop bleeding would more than make up for the expense of the sure seals.
4.  I want to know when someone is giving me medications through my IV lines.  Wake me up if I am sleep and tell me, before, they are given to me.  I always have to ask what it is before someone gives me something.  I think the nurses should tell me before it is given to me, what they are giving me. And don’t look so surprised when I ask what it is.  I know I am getting Epogen and iron, but sometimes the doctors will sneak things in on me and I want to know what it is before I get it and why I am getting it. 
5.  When changes are made to my treatment, please make me a part of the team.  I need to know what changes are being made and why before it is done.  The patient’s rights state that I am to be informed before any changes are made to my treatment plan. Please honor this most basic right.  I was once asked what bath I was on and I answered a 2K and the nurse said that No, I was on a 1K.  I asked when that change was made and why was I not informed about it. They told me the doctor had made the change to the treatment plan.  Was I ever told about it? No, I was not. How am I to be an informed, knowledgeable dialysis patient, when I am kept out the loop of knowing what my own treatment is?

     Here are my concerns. I would appreciate someone addressing these concerns as soon as possible. I do appreciate the careful treatment, care and concern I have been given over the last eight years of dialysis treatment at this clinic. Whenever I have brought concerns to the administration they have always addressed it quickly and fairly, while being discreet.

[goofynina]

YOU GO GIRL!!!  I sure hope it helps for you and the others at your clinic 

[DeLana]

Sounds great, there is only suggestion I have for you.  Instead of "To whom it may concern",  I would address it to the following individuals by name:

- Facility Administrator/Manager
- Director of Nursing/Head Nurse (often, this will be the Facility Administrator)
- Social Worker
- Medical Director/Nephrologist

If you're really concerned, you could add the Network representative   I doubt this will be necessary.

Either way, this will get their attention.

DeLana   

[kitkatz]

I got their attention with the letter tonight.  I now have a supply of sure seals in my bag to use each time I am there.
The tech was spoken with by the director about leaving me in blood and said it will not happen again.
The thermostat was turned off tonight about halfway through the run.  I was actually warm for once in there!
The director say we will be getting new chairs and new machines over the next two months.  It will be new Fresenius machines! I hope the chairs are comfy. I hate the ones we have right now.
She is going to deal with staff on the other issues.
Makes me feel good when my concerns are addressed so quickly.
I might not hate dialysis so much anymore...Let me think here a minute...Nope...Still hate it!

[Ohio Buckeye]

I am so glad you got a quick response and
hope all things improve quickly for you and the other
patients.  Some of them will probably be wondering
how the changes happen to come about and they have
you to thank.  You are a good spokesperson for the group with all
your experience and all.  Best wishes to you.  Stay strong!!!!!!!!!!!

[angieskidney]

What a REALY GOOD POST!! !

I 100% agree and ya with the nurses banging into the side arm tables! They don't even seem to care! Meanwhile not like I can just get off my machine and go pick it up! Or if they knock over my drink .. not like I can leave and get a new one!!!!

Man that was such a good post Kitkatz!!

[DeLana]

Glad to hear it!  I'm sure many patients (and staff - many don't like it cold either) will thank you.

DeLana   

[goofynina]

You just keep waving that "big stick" my friend and things will happen

[angela515]

I know how you feel kitkatz. Those are most of the reasons I switched from hemo to PD.. now I don't deal with any of that.

No more freezing in a chair for 3 hours.
No more being poked with 2 inch needles 3 times a week.
No more only eating ice ice ice.
No more only have 1 soda a day.
No more wathing potassium for the most part.
No more wasting time going to a center 3 days a week for 3 hours at a time.
No more taking off a lot of weight at one treatment.
No more feelings crappy.

Yes I have to do dialysis everyday... but it only takes 5-10 minutes to get my bags, put them on the machine, hook up the line and be ready to hook up.
I don't hook up until I go to bed, so before I hop in bed to go to sleep, I take 30 seconds and hook myself to the line, and press start. When I wake up in the morning, i'm done with dialysis for the day... and I didnt feel a thing or deal with anything 
Of course we still have a fluid restriction, but its not like on hemo... cause we do dialysis everyday we can drink more. For example I usually take in about 4 cans of soda a day, plus some ice. (Not literally 4 cans of soda everyday... but thats how much fluid I drink.)
You can eat as much protein as you want, infact im encouraged to take a protein supplmen cuz im not getting enough protein.
Potassium is usually low since you take it oout through PD, sou can have oranges and orange juice.
You still have to watch phosphorus.
On hemo, I felt icky and miserable all the time... on PD i feel almost as good as hen I had a trasplant before... not AS good, but almost.
Dialysis dont control my life.... I control it.. b/c I do it when its convient for me, while I sleep.

Just a little food for thought.

[kitkatz]

Unfortunately I cannot do PD.  I off to see the neph today at eleven.

[angela515]

Awww, thats unfortunate Good luck at the drs 

[kitkatz]

The doc's appointment today of those "Yep, there you are, you are still alive! Good job! See you later!". Lab work from the 26 of October is very good.  The phosphorous dropped as well as the calcium!

[goofynina]

Glad to hear your labs are improving Kit, keep up the good work my friend...

[angela515]

 

[Rerun]

I hated dialysis more than usual today.  First the needles hurt.  Both of them.  She wanted me to try it without the lidicane and I think she just jammed them in there when I said "no, I want lidocane".  Then my labs were bad.  My P04 was up and my K was up.  Then my alarm went off so I asked what it was and she said "I switched you over to 1K and it takes a while......"  WHAT??  "Who told you to switch me to 1K"  she pointed to the nurse.  I called the nurse over and told her that just because I had one bad Potassium value that doesn't call for 1K for the rest of my life.  That was from blood drawn on Tuesday and this is Thursday.  If I get told my K is too high I'll watch it but if you also put me on 1K without telling me then  it can go too low.  I also threw in the rebounding affect that Amber_79 told me about.  ALSO, my KT/V was bad for 3 times in a row.  So, that means longer hours or something has to be done. 

Then the whole Thanksgiving thing.  I asked this older lady who seems with it if she was mad that we had to come in on Thanksgiving.  She said "Honey, this keeps me alive so I'm happy to come in."  That really pissed me off.  I hate that perky attitude of DaVita is GOD for keeping me alive crap!  We also PAY for it......it isn't FREE.

[kevno]

We renal patients are survivors I do not know one renal dialysis patients who as not gone to hell and back, but remember the saying "RENAL PATIENTS NEVER GIVE UP!!!!!" I have struggled some times but up to now come through the other side. Being kept alive by a machine gets us all down. It's good to have a site like this just to let a bit of the pain out in words. Thanks Epoman you will never know how many patients you have helped