Trust me ..im a renal nurse (long post!)

[KICKSTART]

Er no thankyou , not anymore ! Im not new to dialysis as you all know but fairly recent to Hemo. God am i having to learn fast ! You've probably noticed i havent posted for a while, so many health issues going on i havent even had the energy to sit here for long. Anyway ...firstly im still having problems with my eye , still waiting for results of tests and still being put in the big room every session !
But for the past few weeks ive been so worn out , vomiting all the time,sleeping a lot and putting on a lot of weight , also breathless ! At every session i have been telling the nurses im sure im fluid overloaded, but the machine says NO so i cant be , i must be eating well ! In fact my dry weight has been increased twice in a month !! Now i know we all have different types of machines but what i have been doing is going on what we call the Loop, when you are on that you can measure your BVM.  They like to set the BVM at 89 any lower and you can feel crappy or crash. So say i've been going in and having to take 3.2 off , they set the BVM at 89 and off i go. but whats been happening is when ive taken about 2.2 off the machine says thats it no more fluid and ive been getting down to a BVM of 87. so the nurses have said theres no more fluid despite me saying i feel overloaded. Anyway yesterday was clinic day , thank goodness, i spent all night sat upright , couldnt breathe , legs like jelly , vomiting all night , horrible. So as soon as the neph saw me he said get me on the machine , dont set any programmes, just get the fluid off YES i was very overloaded !!! So they pulled 900 off in 40 mins ! In total i pulled of 3.2 and my BVM went down to 83!!! Now they wanted me on for 5 hours but after doing all that in 4 i was cramping and getting light headed and i said lets call it a day, if there is more to come off i will do it at the next session. Well the nurse in charge (ive had a few run- ins with him, whenever i ask what hes doing he tells me i dont need to know!) Anyway he said well the neph said 5 hours so you must do another hour and i said you are joking ive pulled off all that fluid (my breathing was fine) my BVM is down to 83, can you imagine another hour of that ! I wasnt crashing for anyone, so i insisted and stood my ground. Today i feel like a different person , i lost just over 4 kilos in weight yesterday , im brighter than ive been for weeks , i havent vomited (first time in days, i havent fallen asleep, i feel human again! So in future im going with my instincts , i dont care how long the nurses have been there , im listening to me and not trusting anyone !!!

[jbeany]

 

Go, kickstart, go!  I truly, truly, hate when they pull that "You don't need to know" bullshit.  Yes, I do, and if you can't explain, then find me someone who can! 


Love the Furniture Disease quote, too!

[fc2821]

     I was wondering why we hadn't heard from you in a while, now I know.  I don't care for this "You don't need to know" crud.  Of course you need to know, it concerns you and who is more important to you than anyone, you.  Don't let them get away with that, you are right stand up and voice your concerns.   

[cariad]

'You don't need to know what we're doing to your body' has to be one of the creepiest sentiments I've ever heard. Shame on him.

Hooray for you for speaking up for yourself.

[Malibu]

That is awful that he said to you You don't need to know.  OMG!  Is there any possible way you can go to another dialysis clinic?  Or perhaps write the state about this guy?  He should not be caring for prople.  Oh man I would hate that situation, I can just imagine.  And the fact that they would not listen to you at all....can you call and talk to your Dr about that?  I mean it is your body, they need to listen to you when you say what needs to happen. 

[paris]

Kickstart, I just don't know what to say.  You keep walking through fire and no one is listening to you.  It is good to hear you feel better today, but they should have never let you get so sick.   I hope the sun is shining and today is a good day.   Keeping you in my thoughts and prayers   

[kristina]

'You don't need to know what we're doing to your body' has to be one of the creepiest sentiments I've ever heard. Shame on him.

Hooray for you for speaking up for yourself.

I agree with cariad and I feel very sorry what you are going through
and I don't know what to say. Kind regards from Kristina.

[Jean]

Glad at least you are feeling better Kick. Wow, what a dunderhead is that tech to say that you dont need to know. Hello?? Keep on keeping on girl!!!!

[RichardMEL]

I'd always been informed by my care team that a BVM under 90 did indicate that you're dry - so from that POV I understand why they did why they did, but it seems that they ignored the patient - your breathing, own feelings of difficulty, your legs etc.... It's good you stood your ground though. It's amazing sometimes these people ignore the patient yet who knows their body better than you??

It definitely seems like your dry weight needs to be reassessed I think.

Well done, KS! 

[sullidog]

I have trouble getting my center to understand that what I'm gaining is dry wait because I pea fine and I'm never swollen and when they do try to take fluid off I crash almost immediately.
Troy

[HubbysPartner]

I'm glad you stuck to your guns and you're feeling better.     I hope your eye problems clear up soon.  It's a shame that medical personnel still think ordinary people can't understand what's going on with their bodies.  You would think they would be happy that you want to be informed and knowledgeable about your condition so you can take a proactive part in your health.  They really need to listen to the patient more.

[girliekick]

some of these ppl think we come w a manual with exact guide. I always had the same problem in reverse. They wanted to pull a certian amount even though i would say i cannot tolerate it. O well they had to clean up the vomit. I hope things continue to improve. Hemo really is a diff world than pd.
Girl

[Zog]

Argh, you know how you feel at what weight better than the docs and techs. 

My wife (Jenn the dialyzor) is the only one who keeps track of her dry weight now.  She is an expert at it.  If someone wants to argue, she will let them have it.    Don't all those BVM monitors work on hematocrit levels?  Maybe your hematocrit is off, not your blood volume.  I don't know much about them.  Sorry if I sound stupid.  We thought about begging for a Crit-Line when she was pregnant on dialysis, but we were able to figure out the increasing dry weight the old fashioned way... pre and post weights (chart them), how much did you eat/drink today, blood pressure high or low, puffy wrists and ankles, how do you feel?  She doesn't pee or workout so that wasn't in the equation. 

Hope you are able to learn how your body feels and get more control over your treatment.

[kristina]

May I  just ask a question (and this could be a general question as well...):
Are you the only patient who has been singled out and treated badly
or are there other patients who are similarly treated very badly
whilst there is another group who are treated favourable?

I am asking because that is my problem with doctors:
the same doctors were very kind and very caring
to one group of NHS-patients
whilst they treat another group of NHS-patients very badly...