Had really bad dialysis session yesterday. Nurse said she was taking out only 1.6l.
After 2 and half hours started feeling really dizzy tired and confused. I don't skef the nurse again how much fluid she was taking out and she said 2.5l😳😳.
In the past I have got really ill if too much fluid taken out and I made it clear many a times to only take maximum 1.8l cos I tend to crash and collapse and blood pressure plummets right down.
I'm really annoyed that the nurse lied to me knowing I get ill if too much fluid is taken out.
Honestly I felt absolutely ghastly. Half dead like the life has been drained from me it's a horrible experience I have been working on not to get again and cos I wasn't on top asking nurse as she set me up she just did her own calculations of taking my fluid.
The next day I'm still feeling it. Feeling woozy drunken state and massive migraine!!
😡😡
I'm really Annoyed the nurse did that and when I told them I was feeling really ill they just overlooked me. Rushing to pack up to go home when I could hardly move?!!
This is the kind if attitude that puts me off going cos of their lack of care and just not listening to the patient!!
It's gonna take me till tomorrow before this horrible withdrawal affect goes. Oh it's ugly feeling. I had it all under control until that damn nurse last night.
I won't fall for it again I tell you!! I be on too if them watching everything they do asking questions ensuring I have it on my terms not there's. They are. It the ones who have to go through the withdrawal symptoms if too much fluid is taken out or the machine is up too high.
On top of that I've got to keep control of my bladder spasms. Thankfully I took a load of relaxers before which help a bit only one toilet break. 👍🏾
I just feel so mehhhh!!! And annoyed today. Gonna just chill out til it wears off.
Peace to you all
Sakinah 🌹
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sakinah111
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Sorry to hear that your treatment day was so bad. I have just the basic understanding of the National Health Insurance program in the UK, but I have to ask. Don't you have some formal method to make a complaint? While I realize that anyone can have a bad day, but there are some positions where you have to leave issues away from work and deal with the job in front of you. You had a very unprofessional nurse and under the circumstances, I might have said a lot more directly to her. Except for God and Santa Claus, everyone has a boss, so I hope that when you are able to get past the lousy treatment you received you have some recourse to prevent it from happening again.
I have details if the dialysis unit manager and intend to write an email detailing not just once but a few times now the noted have been shoddy, inconsiderate and frankly quite rude.
I have dealt with quite a few episodes now but enough is enough. I think it's time someone said something cos if they do that to me God knows their attitudes to more vulnerable patients.
I'm going to do my best to put for my grievances and see how it is dealt with.
Frankly I'm too ill and tired to feel involved with their systematic cat and mouse games overlooking the problems at hand and letting it drag for weeks in end to do so heir "investigation". I've been down this road many times to raise concerns for civil rights and you get sent in a merry go round!!
But I am going to make a point of it this time as it's become to regular and see how it pans out.
I hope all is well your end if the world. Are you a dialysis patient too. I hope you are in a good place with good support cos this is very important for us.
No, I'm not in dialysis yet however, I'm close enough that I have to look at all types and decide what will work best for me. Right now I'm leaning towards PD.
Let us know how it turns out with the dialysis unit manager. Keep smilin'
I was on dialysis for three years and had many episodes of dizziness. This was usualy because my blood pressure would get too low as the fluid was being removed. I asked them to leave the blood pressure cuff on so that I could do my own blood pressue if I felt myself getting dzzy. If it was getting too low I would take a sip of water. Sometimes it was necessary for them to give me fluid intravenously. This was more likely to happen if I was carrying too much fluid. I dont know how often they check you bp but that is possibly the reason for the dizziness. Hope this helps.
That is the reason for the dizziness. I just have to self monitor and keep an eye on what the nurses are doing as they just take whatever fluid they feel is necessary according to my body weight but not realising the implications I suffer in the meantime from withdrawal symptoms.
So I'm keeping in my toes with them.
Again thanks and all the best
Sakinah 🌹
They put fluid back in if I get too dizzy and request to have my blood pressure monitored closely when having a bad session.
Ask the nurses to show you where on the machine it displays amount to be removed or "goal". You can always double check their math or ask them to double check it. Removing too much fluid too fast or in too short of a treatment is usually the culprit of what I call "Dialysis Hangover" Now that I've been doing home hemodialysis for almost 15 years I can do longer slower treatments to avoid all that hangover type symptoms.
Thank you for replying to my post. I'm well aware of the dialysis hangover syndrome and have had to keep on my toes every session with the nurses or they will take too much fluid out and too fast. I have a set goal of fluid outtake that my body can manage between 1.6l and 1.8l and more than that and I end up crashing and having the nasty hangover.
So many times I have allowed the nurses to set up the machine telling them my fluid amount is at a set level and each time I'm ignored and set the goal accordingly to my body weight regardless of me telling them that over 1.8l will make me very ill!!
So Now each time I go for treatment I'm watching the nurses as they set it up and reading the machine and monitoring my blood pressure at my request and keeping track of my paperwork if I don't do this they will make their own calculations regardless of the individuals effect from the machine with too much fluid taken out!!
So I'm well on top of it now. I'm very disappointed with their attitudes and disregard to the individual patients needs not listening and only going by professional calculations without taking into account the persons actually feelings.
We are the on s on the machines going on though it and having to deal with the effects they are not experiencing the struggle we have to endure and I think it's very inconsiderate and inhuman and unprofessional of them.
But hey ho!! Keeping positive and keeping on track of my own health along with the healthcare team. I'm not going to just let them tell me they know best for my body when I'm the patient and the one who has to endure all the treatments. Yes I know they work hard but they need to be more considerate and listen more to the patients request if there is problems.
I have made my issues known to the clinic manager and she is in the process of investigating my complaints. Hopefully I will get some positive feedback and she will listen to my views on individual patients treatments and not be ignored and simply given the brush off that we have to go by departmental policies etc etc?!!
So I just have to see how it goes when the complaints investigation is completed?!!
Until then I be back n my toes!! For each treatment!!
Just curious you been home dialysing for 15yrs wow long time!! Ideally I would love to do it too but I'm just to scared to do it myself and all the preparations and training that goes with it seems daunting?!
I wish we could have NHS in England home dialysis with a district nurse or dialysis nurse who could come and do it for you but sadly I don't think it's available. It would be wonderful if such a scheme exist but not to be unfortunately.
Hope all is well in yourself and well done to you for achieving long term home dialysis 👍🏾
Well I will say that doing home treatments has completely and totally erased any mathematical error and hangover issues. In-center treatments and short daily often are the causes of dialysis hangover due to removing too much too fast. I never have a blood flow of over 250 yet in-center they often run at 500 or 550. This high flow along with fluid removed during a short session contributes or is cause of symptoms you describe. When you run longer and slower as I do at 7-8 hrs per treatment and no faster than 250 (blood flow pump) this is what allows your body to adjust to and remove fluid and toxins slowly and gently which STOPS the cramping, nausea, dizziness, low blood pressure, light headed feeling, migraines, exhaustion, fatigue, weakness etc. PD could also be a possible option for you. We trained (spouse and myself) 3X week for 6 weeks. We did a lot of research and studying prior which alleviated much of the fear and worry. Its really a trade off of trading in your fear for control and empowerment and knowing you won't have those issues you now have. Once you get to a point of being willing to overcome your fear in exchange for empowering yourself then you can move forward into bringing your treatments and your life home. Best of luck and Blessings
Thank you for you kind inspiring post. Very encouraging but still feel I've got a bit of a way to pluck up the courage to do home treatment yet!!
Maybe in the near future but for now I stick to clinic treatment and keep close personal monitoring of my treatments to prevent any hangovers in future.
I forgot to include that they're required to remove the extra saline within the bloodlines at the beginning and in ending the treatments. Most clinics add between 300 ml to 500 ml to each treatment fluid removal so that may be where they are removing more than what you want or think they should remove. Target weight is a guess and is a moving target. Sometimes you may gain 1/2 a kilo other times you may lose 1/2 kilo so its always good to know what is your ideal target and being willing to adjust it to fit your needs. DaVita clinics are well known to wrongly add 1.5K to your target removal which can be deadly to some. Be very clear in what you request. Best of luck & Blessings
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