Hello, I’m a 67 year old male on home hemodialysis NXStage since October 2019. My daughter is my partner she is a nurse and has worked in dialysis for years. Everything has gone well with treatments at home.
The only problem we have is that every time we have a question about my treatment I’m being told by my nurse or doctor that if I don’t like it I can go to in center dialysis. They make it sound like a threat. One doctor even asked me was I ready for hospice care all because I had questions.
I typically gain less than a pound between treatments. My labs come out great. But I have constant cramping and I feel horrible on my treatment days.
I guess it just feels like they don’t try to adjust your treatment as an individual patient. They don’t see as a person just as a $$$
Has anybody else on nxstage been threatened with being sent in center if they have questions or concerns??? It feels like there is no caring or compassion from the people being paid to help us with dialysis.
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AsheboroNC
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When you registered for hemodialysis you should have received a manual containing some important information to be used by the patient if necessary. There is one document that you can use to file a complaint and address to where you should mail it.
I've been on hemo dialysis since 2014. I can't believe it's been that long.
I have always gone to in center HD. For me it's the most convenient. I live in a small town in central SD, so I'm about 10 min. away from my center.
Don't let the docs intimidate you. I like going to my HD place.
It's very important to me to be able to talk to other HD patients. We kinda have our own support group. We talk about the cramping, the fatigue, our diet, meds, etc............
Also we have the same team of nurses. They become friends very quickly. They get to know your body as well as you do & know your ups & downs.
So in center HD to me is a blessing. One of those unanswered prayers.
For me, unfortunately, the fatigue, lighted head/dizzy, is just part of HD. Unless I go completely crazy & ignore my diet restrictions & fluid intake, I don't cramp. I learned that lesson the hard way!!!! Now I'm always thinking, "is that last slice of pizza, cake, hotdog etc worth the cramps'.
As far as blood work goes, my biggest challenge is the potassium & phosphorous. I take binders & eat tums to keep them in control. To you I will admit I don't take them as I should. I HATE them. They make me bloated, give me runs so bad I don't care leave the house.......... But they are very necessary & I do take some every day, but not every meal.
Hope this is helpful. In center HD is no big deal. Don't take it as a threat. You might even like it😃
Hoi I too when I first began dialysis couldn't believe the attitude of most of the staff,I was a complete newbie having had emergency dialysis,I was still in shock & pain..they were cold & felt uncaring..btw this is dialysis centre..I felt alone I thought they WD be more caring & supportive even days I was really ill with kidney infections being sick into a sick bowl then admitted to hospital they still ignored me..I now know this is the way most staff are & the attitude I have now is treat me this way I'll treat u back same.akea complaint to head of staff& either also email or put it in writing so u have proof..I wish u good luck for future..
My mother has been on HD for 3 years now and the staff from day one have been just shockingly terrible... My mother is abrupt in the way she speaks so always gets taken the wrong way. After concerns of her bein under an air conditioning unit that was causing her to have chest pain the manger of the unit was quite unhelpful and treated my mother like a nuisance, we also asked if she could change days... to hopefully be at another seat away from the cold air as she suffers heart condition, forward on a few mths when I would pick mmy mother up she couldn't walk or talk she was like a vegetable, I complained to the CQC nothing came of it buy her ending up in hospital regularly. I had words with the manager of this unit and refused that my mother went back there after her last hospital stay. She now has her treatments at the hospital and they will not allow her to go to a new satellite unit, in my eyes they are killing her off.... thethey control how they dialize her, which fofor a while at the hospital was amazing compared to the unit. She has been taken off of the transplant list, and they are pushing her into stopping all treatment. Her BP is so much better and Glucose levels are really good, she is trying so hard and yet these technicians and doctors are litrally playing God!! I pray that maybe they will allow home dialysis but I won't hold my breath. What she has gone through due to doctors and lack of care in the last few years I'm still coping with the total shock!! I'm so overwhelmed by the ordeal I don't know what to do ??
Don't bother with CQC, they are a waste of time. Have you tried your local PAL's? Here's a link to find the details of yours, give them a try - nhs.uk/nhs-services/hospita...
Also, get everything in writing. If you want the satellite unit put a request in writing, if they say no get their response in writing. If they have a valid reason there's not much you can do but if they don't put in a formal complaint. If it's cos there's no space ask for her to go on a waiting list and keep regular tabs on where she is on the waiting list. In my unit spaces comes up fairly regularly so don't let them put you off if they say she could be waiting years as that's simply not true. It might be worthwhile regularly touching base with the satellite unit yourself to keep tabs on when a bed comes up. If you put in a formal complaint and are not happy with the outcome you can always go to the NHS ombudsman who is impartial and will look at your complaint fairly. You can find details on the internet of how to do this, they have their own website.
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