Two steps backwards

[KICKSTART]

I said it HATE hemo and today i will tell you why .. i dont think i will ever accept it after PD but i know ive got to do it , or so i thought. But today well, now i seem as far away from accepting and wanting to do it as ever. As you know ive been having terrible migraines due to the bright lights and yet when they put me in that small side room , i could sit with the lights off and i was fine. So i went in this morning to find i was back in the big room with all the lights and sure enough , my head was pounding after an hour. So one of the nurses (who i thought was ok) asked me what was wrong and i explained and said if that room isnt needed could i possibly go in it again. She told me 'oh no we cant allow that' so i then pointed out that another lady was ALWAYS in that room (the only 2 times she hasnt been is when i was in it) and she said , no she isnt always in there. Now the other patients had already told me they stick her in there out the way because she coughs alot and disturbs the others. So i thought no point in arguing about it. Then a little later this nurse walked past me and said..'be careful what you ask for because you might find yourself going somewhere' Meaning back to the hellhole unit i was on. So now i feel as down as ever, i feel i had better keep my mouth shut, like one of the rest of the sheep in there. I feel bullied. I didnt ask for this damned kidney failure, i didnt ask for nurses moods and whims . This is my BLOODY life. (sorry for swearing). (by the way im the youngest and most outgoing patient on my shift , the average age being 80 i'm sure!)

[Slywalker]

Ah Kickstart - just seems to be a downhill struggle for you.  I honestly don't know why some people are in the health care field when they don't really seem to have any interpersonal skills.  I would keep asking.  Others will probably say to tell the charge nurse or something but I might suggest asking the techs everytime you go first - just my suggestion.  I didn't have those issues when I was on hemo.  But, like you, except for one boy about 8 years old, I was the next youngest.  Most people brought in from nursing homes on stretches and wheelchairs.  It was a serously depressing place for me.  I was one of the lucky ones as I got to do hemo only for a couple of months while the PD catheter healed.

Good luck

 

[peleroja]

I don't understand why you are choosing to put up with this bullshit.  You are the patient and you have rights.  Complain to the director of nursing.  If you get no relief, keep going up the chain of command all the way to the president of the company, if necessary.  YOU HAVE RIGHTS.  Don't just keep taking their crap.

[billybags]

Kickstart play them at there own game, keep fu**ing caughing and sneezing.

[KICKSTART]

I don't understand why you are choosing to put up with this bullshit.  You are the patient and you have rights.  Complain to the director of nursing.  If you get no relief, keep going up the chain of command all the way to the president of the company, if necessary.  YOU HAVE RIGHTS.  Don't just keep taking their crap.

Im sorry things work differently here , as we have the NHS and we dont pay , we dont have any say in where we are treated and who by. We just get sent wherever and at the end of the day there isnt really anyone to complain to, its her word against mine and even if another nurse heard, they wont say anything against one of there own. They could come up with any number of reasons to send me back to that horrible unit and i wouldnt be able to prove it was done out of spite. This is it , the NHS may be free over here , but my god you have to take all the crap that goes with it !

[Ang]

ks,


try  one  of  those  night  mask  thingys  that  cover  the  eyes  when  people  sleep and  no  you  don't  have  to  take  this  crap,your  human  are'nt  you  just  like  the  nurses/techs,only  difference  is  there  assholes  and  you  have  a chronic  disease.

[RightSide]

I feel for you.

But yes, if there's only one or two isolation rooms, those rooms have to be reserved for patients who might be coughing germs all over the place.

Most likely any dialysis patients with H1N1 flu are going to be put in those isolation rooms.  After they've sneezed and coughed their flu germs all over the room, do you REALLY want to be in there after them?

[RichardMEL]

yeah our isolation rooms (we have 3) are used for people with VRE and other special needs. I was once stuck in there when it was thought I might have swine flu (it was pretty funny when everyone had to come in donned in plastic, gloves, masks the works  ).

At our unit lights over/near specific chairs can be turned off. Surely it is similar in your unit?? I don't get that. We often have folks who come in, they put them on and turn out the light over their chair and some of them amazingly sleep (I am so envious!).

I sit under the lights, but I sit the chair up and face my table and laptop so the lights don't bother me so much as I focus on the laptop - maybe you need to do something like that...

or go the eye mask route. I know you don't want to do that but it may be your only respite.

Do they not even offer you any paracetamol for your headaches? Are you sure this is the "good" unit?

[Rerun]

Did you try the sunglases?

This one unit I was at kept putting me right under the Air Conditioning and so I brought a big umbrella to put above me to deflect the air.  They thought I was being stupid until the Doctor came in ..... and asked why I had the umbrella.... I got moved!!!

                           

[KICKSTART]

Hi guys maybe im not explaining myself enough? The room im talking about could be used for isolation , ok fair enough i understand that , but this lady is in because she coughs so much , because she SMOKES!!! no other reason , no virus or illness. I know i could get one of those eye mask things , but who wants to sit in the dark for 4 hours ?  No we dont have lights over our chairs , just main lights built into the ceiling , so no matter where i look i can see them. I did take my sunglasses in ,which did take the edge off the light but i still got a blinding headache. But i think my issue has now moved on to the fact that i was Warned to be quiet or else. Now i really see my life as miserable. I dont go there to be bullied , but now i cant say anything , cause believe me its still miles better than the other unit , if only for time. Why is it we are supposed to be dumb,senile and uneducated when we have kidney failure? Does it attack our brains as well ? The nurses seem suprised that you can be ill and still have some degree of intelligence dont they !

[RichardMEL]

OK KS here's a thought. Talk to your unit's social worker about the problems you are having. If you have no success there, then go to the head of the unit. I am not saying you should be put in the little room, but there must be something else that can be done to help you out. It doesn't sound like a very good unit to me - I've NEVER heard staff talk to a lucid and polite patient before. Yes the ones who are a bit loopy perhaps but if you approach them politely and calmly they should respect you enough to treat you properly.

[kimcanada]

RERUN, I am sitting here LOL'ING thinking about you sitting under a big honken umbrella 

Only in dialysis is it expected that we sit and suffer 3 times a week!

KS, I was thinking about your problem and I think that you have to remember that nurses don't have real power, please don't go to them when you are wanting change, go straight to your doctor.  Tell him/her that you are suffering migraines and need something to be done... if that doesn't get you anywhere go to your family doc... tell him the same thing.

KS, you can't give up on this, if you start giving up now, what will be next??  Stay strong KS, I am thinking of you, please keep me posted 

[KICKSTART]

That another problem i have .. i HAVENT seen a single doctor since i started Hemo, its seems we only get to see him (whoever he is!) at clinic , which is once every 3 months!! Gawd knows what you are supposed to do in the meantime if you want to discuss something.It seems the nurses are the front line here , someone must be looking at my notes to decide when i get Epo.Iron etc but day to day what fluid etc you pull off seems to vary depending on which nurse puts you on in the morning. At least i now know a bit , thanks to you all here, to have a bit of input into my treatment !

[CCStan]

KS, Hopefully ranting here will give you some satisfaction.  Since I have never been through or suffered your pain, I can and do have empathy for you.  Please keep "kicking".  Our thoughts and prayers are with you.

Next session remember all the hugs you have coming your way.  Try to visualize all of us giving the evil eyes to the evil doers. GRRRRRRRRRR, get 'em!

[nursewratchet]

What state are you in?  In Texas, or at least in San Antonio, the Dr.s see everybody once a week.  NO exceptions...

[Goofy]

I liked Rerun's response!  Have you thought about doing that yourself?  I would imagine they would think you're crazy and maybe they will put you in the isolated room!

I feel so bad for you.  I know how frustrated I get when I can't do anything about certain situations.  I can only take so much before I start getting angry and then I go off like a crazy person.  I also can't imagine how frustrating your health care system is.  I'm worried about the US going to a "government" run health care system and having the same problems.

I wish I had an answer for you, but I don't.  My only suggestion now would be to start a log of how you are treated at each treatment and who treats you with respect and who doesn't.  Maybe in time, you will be able to find someone in the "chain of command" that you can talk to.  This way you have all your facts and they would be hard to dispute.  I would also note what nurses were on the shift and the patient names.  If you have good notes and have names of people that could "hopefully" collaborate with you, you may have a chance to help to make things better not only for you, but for other patients as well.

I know its easy for me to say these things because I'm not there.  But keeping a log may help you.  I understand you don't have much say so as to where your treatments are and who gives them to you but I can't believe how they can employee people that don't have any compassion for the patients.  If there are enough complaints, you would think people would be in fear of loosing their job.

That's another question.  Are there other patients that feel like you do?  You could alll band together.  I hope things get better for you.

[Goofy]

I forgot to mention......this may sound dumb but do you have a hat with some type of visor on it to help block the light?  Or even a wide brimmed hat?

[kimcanada]

We are the same KS, doctor every 3 months if we need to see them or not

[Inara]

My suggestion may sound harsh, but here it is:  CALM DOWN!!!

You just started hemo after pd failed.  Obviously, you have some psychological trauma....who wouldn't?  We're all human!!

Ask yourself this: Is it at all possible that you are projecting frustration you feel onto the staff/center you are dialyzing with?  (I don't mean to sound critical AT ALL!!!  It's a normal response!!!).

Give yourself time to adjust.  Give the staff time to adjust to your personal needs.  If time doesn't sort things out and you're still not happy, then register official complaints with the SW, Head of nursing, Administrator. 

You deserve as comfortable a dialysis treatment as possible. 

My apologies if I offended you, KS.  I'm only trying to help and I've had years of experience with new hemo-patients. 

[KICKSTART]

Inara , sorry but i dont think i need to calm down . I am not taking my anger out on anyone at the unit. I just think i need to be treated with a bit of decency (and my request IS for a reason , not because i consider i need some sort of priority treatment) Im neither senile or a child, but feel like thats how im treated , neither should i be at the mercy of a nurses moods ! I speak civilly and politely to them all , regardless of their replies, and i dont unleash my temper ,though i maybe think i should, as people tell me a creaking door gets oiled first !

[KICKSTART]

Another dialysis day , another migraine.

[Loretta]

See the doctor every three months? Wow where are you?  I see a nurse pactioner every week.  If I am having a problem I can call her and she will return the call within a couple of hours, unless it is a weekend and sometimes even then!  She will order medication, or whatever I need.

[RichardMEL]

KS are you in a hospital unit or an outside one? If it's a hospital attached unit they should be able to call a renal registrar at any time to talk to you. I normally see my Neph every 3 months but if I've ever had the slightest of concerns the staff call the on call reg and they deal with it (or laugh at me, whichever works ).

I still suggest you should ask to talk to the social worker regarding your issues communicating with the staff about your migrane issue. If you get no joy, go to the unit administration(ie: the boss).

For all those that asked KS is in the United Kingdom.