I still can't get used to Dialysis

[chook]

Richard, you are always so WISE - does dialysis make you wise? I'm looking forward to becoming wise if that's the case!
Grin and bear it seems to be the basis of everyone's advice - hard to do on those bad days but easier to do with IHD 

[Des]

It was so cool to read all the posts.

I think if I had a nicer unit it would not feel like a sheep going to slaughter. They are underpaid and work very long hours - so they are miserable. The people in my unit are mostly black - so the rasism and cultural barrier is very big. We have nothing in common except dialysis. They speak another language with the staff which I don't understand. (the staff is also african) So I am really left out. I spoke to a few other white english patients but they say I am a "stirrer" so they ensure that we are not sitting close enough to talk. So I am isolated. We cannot bring laptops - the unit has no plugs for us to plug our laptops in.  I have 4 "black"" language tv channels to watch.  I will never ever sleep as I do not trust the staff.. to watch the machines.

I will try to stay positive. Thanks for the good advise all.

Will add later... have to go to a meeting.    

[RichardMEL]

Richard, you are always so WISE - does dialysis make you wise? I'm looking forward to becoming wise if that's the case!
Grin and bear it seems to be the basis of everyone's advice - hard to do on those bad days but easier to do with IHD 

Me wise?  Well my high school's motto is "Dare to be Wise" - but it's been a long time since I wore the school tie (thank God!)

I personally blame those pesky toxins for the nonsnse I type. You might notice it gets worse (and more verbose) on dialysis "weekends" 

Des - wow, it sounds really difficult for you unit wise - I can't imagine that kind of situation, specially because I imagine there are all kinds of racial undercurrents there that are probably very unique to South Africa, and it's history - specially in recent times. I really don't know what to suggest as you are really much more limited in your options to interact with others or even entertain yourself.....

I imagine I would be pretty down about it if my unit was like that. Yet here I am packing away a box of choccies for the lady who makes us tea and cleans the chairs (it's her birthday).

Does your unit have a social worker or someone you feel you could talk to in regards to your situation there - even maybe to try and improve entertainment options or provide power for devices like DVD players or laptops?

I am definitely not wise enough to know what to do

 

[cariad]

Oh, Des, this makes me so sad for you.

No wonder you struggle so much with dialysis, no one should get used to discrimination.

Can you not request that they provide at least one channel in Afrikaans, being it is an official language of the country and my understanding is if you need a public service, they are required to provide those services in any of the 11 official languages of South Africa? (I believe that for some services, it is only 6 languages, but Afrikaans would be on either list.) I suspect you do not feel like making a big scene over this, as you've already been unfairly labeled, but I think Richard has a good idea that you should discreetly seek out someone who can advocate for you.

Separating you from others with whom you can speak is cruel and vile.

Keep updating us. I hope there is a solution for you!

[MooseMom]

Gosh, it didn't even occur to me that there might be some racial obstacles at your unit, Des.  That adds a whole new layer of isolation and general unhappiness to an already frustrating situation.  When my mom was alive and was on D, the vast majority of both patients and techs were non-white, and my mom was "the little old white lady" of the unit.  There were people from all over the world, but there was never any problem.  In fact, my mom would call me and tell me all sorts of stories about the nice people at dialysis.  So your situation is so different from anything I've encountered.  I'm really baffled.

[Slywalker]

Des -   

[KICKSTART]

Des if you've no tv how about a portable dvd player? a nintendo ds ? i spend ages on mine ! Even over here at the main unit (you only end up there if something is not going right )we have more 'coloured staff' than white! and they stand one each side of your chair talking in their language. On my small unit the nurses may as well do the same about one third will actually pass the time of day with you , otherwise they would rather get back to the nurses station and chat amongst themselves . RM's unit sounds unbelieveable (not as in i dont believe him) friendly jokey chatty nurses , little extra's , it must all make a difference. Our unit is ship em in , ship em out, we want to get home.

[Des]

No social worker..... I asked.

We are not even allowed to warm up the "bean" bags in the microwave as it is a germ hazard. (It helps with cramps)

For a Fresinius unit this one is very basic. Although it has very fancy dialysis machines.

I really think that I would have adapted more to a friendly, helpfull and social unit.
If you remember clearly - I tried to start a support group, I was given a letter by the unit manager prohibiting me from even attemptiing it as I am not allowed to contact any people in the unit to ask if they want to join. That was the "trouble-making" that they accused me of. 

I have written(mailed) to the head office about some basic things the staff do wrong, like they leave the unit unatended and let the alarms blair on... but I only got a "we'll look into it" and that was that.

I am really trying hard ... honestly .. I am but I just don't want to spend any time there.....     It is like going to the dentist - just worse. Last night they hurt me pretty bad. I cried - again. Those needles are ruthless.

Later 

[del]

Des I really feel for you.  Kickstart there are units like Richard's - hubby's was!!! Hubby even missed the social part of going there when he started home hemo. He still goes to visit sometimes (not for a treatment though unless he has too)!! So hard to go somewhere when you don't feel comfortable.  I can't believe that you were not even allowed to start a support group, Des.  Could you get around it by having a friend set up the group - someone who is not associated with dialysis.  I also can't believe that the nurses leave the unit with patients unattended and alarms going of. That is dangerous!!! 

[RichardMEL]

Incredible. Just goes to show what different standards can be like in different countries.

I'm so sorry Des - I wish I knew what to suggest - *I* wouldn't want to be in your unit!!!!

[MooseMom]

No wonder you are miserable, Des.  I truly am astonished at the complete and total lack of compassionate care in your unit, and yes yes yes yes, I DO think you would be able to cope better if your unit was not the prison cell you describe.  It's just wicked.  Is there any nurse/tech who seems to be a bit nicer than the others?  Could that person be cultivated gradually as an ally?  It seems like they've already decided that you are a bad patient, and you might have to work very hard to change that perception...frankly, I don't know if you can.

Des, do you think that race is at the bottom of your problems at the unit?  That's an awful question to have to ask, but if that's the reason behind their atrocious treatment of you, maybe we can start from there and begin working on some way to get them to see you as a real person and not as just another body.

This is awful.  D is hard enough without added torture.

[KICKSTART]

Des , at the moment you are very fragile , i was like that when i went to my unit , now well im the 'blacksheep' but an honest one ! I've grown a hide like an elephant and you will know from my posts , i have my up's and down's ... I dont care anymore , i speak my mind , i dont bow to anyone ! The hardest part is sticking it out till you toughen up ! I know it doesnt help you but it might make you laugh ...Today i took on the most grumpy miserable old g**, even the staff dont like to get on the wrong side of him! He has been seen fighting with his walking stick to get in the unit first and heaven help if he is kept waiting! Well today they put him opposite me ..big mistake! I have to have the lights directly above me off as you know ..and yes he wanted them on. So im trying to explain to him why and all the time im talking he's like yeah , yeah , whatever , i dont really care. So i shouted across at him ..look just because you are old doesnt give you the right to be a cantankerous old sod ..well when i looked away all i could see was the staff with their backs to us and their shoulders just going up and down, laughing their heads off. Needless to say in the next 10 mins he was fast asleep anyway ! Now when i first went to that unit i would have been in floods of tears if that had happened , so you hang in there , it WILL get better ! 

[tyefly]

Des......  I know I havnt been on here for awhile.......  gee    I am so sorry..... you are in a world light years from us....yet we all understand..... we just need to convience you .....  stay strong.... I need to gather my thoughts on all of this...... I will Pm you later....

EVeryone here has such great support.....  thx to everyone ....

[Desert Dancer]

Oh, Des, no wonder you're so miserable.    It sounds as though they've turned your dialysis chair into a small and hostile prison.

Forgive me if I missed this bit of info, but do you have the opportunity and/or the willingness to train for home dialysis? It sounds to me like the bulk of your problem is the unit; if you could remove the unit from the equation it might make you a lot happier.

[Des]

KS --- I will    from now on... heheheh

In South Africa home Dialysis is not in use yet. The machines are not available here. (Maybe someone somewhere can export some here)

I am fighting against a lot of things and maybe the rasicm is just my "perception" but all I know is they really don't go out of their way to make things easy for us.

I am really tired today. I can spend the whole day just lying down. (not sleeping though)

 

[KICKSTART]

Good for you  .

[MooseMom]

Des, I went to NxStage's website and filled out their standard inquiries form, and I asked if there were any plans to make their machine available in RSA.  I don't know if they will respond, but if they do, I'll let you know what they say.

[paris]

I had a strange connection with Nxstage.  I went for a mammagram, the tech and I talked about kidney failure. Her brother is in sales with Nxstage.  She contacted him, he emailed me. Then he had the local Nxstage office call me!  They invited me to the office (about 30 minutes away) and showed me everything, introduced me to patients that were in training, walked me through the whole set up and process.  It was so helpful.    I would have never known there was an office so close.  My local neph was all for Nxstage. He is from Egypt and had bought the system for his uncle there and shipped it to him!  He makes sure he gets all he needs for his exchanges.   You just never know when someone will come into your life with just the information you are looking for.

[Bruno]

Cheer up, Des...at the very least you have got us and we are all posting in trying to help lighten your load. It's fascinating seeing the different ways that other have responded and the methods they use to cope.
My plan is simple and I know what I have to say will sound self serving and sentimental but I am trying to make my life mean something even though I have CKD. I do the best I can.

[Des]

Des, I went to NxStage's website and filled out their standard inquiries form, and I asked if there were any plans to make their machine available in RSA.  I don't know if they will respond, but if they do, I'll let you know what they say.

They will make a killing (pardon the pun)

[MooseMom]

I haven't had a reply from them, but I will ask again.

[chook]

 No words of wisdom from me - just this

[Bruno]

Des, I looked at my previous post and it's stupid...I hadn't read your story properly and my effort was full of faux sympathy. I really don't know what I would do in your situation, like Richard says - it's the people you meet at your centre who are sharing your problem that make a difference to your own attitude.
Here at RPA Sydney, 90 per cent of my fellow patients are not of what a person my age would call Australian origin, but we all get along very well. I know it's an impossible dream, but can you try to immigrate to Australia? I had a Fijian gentleman alongside me who did just that.
But keep your pecker up, mate, and keep talking to us.

[Des]

hahhahhahahhahahahahhaha

I will try VERY hard to keep my pecker up.... cause I am a chick......... but your thoughts and wellwishes are still very welcome..... hhahahahahha

[KICKSTART]

  So pecker means the same there as it does here !