I still can't get used to Dialysis

[Wattle]

     Hugs Des

I also have no words of wisdom as I have never had to deal with a unit. But I do want you to know that we are here, as your friends to try and support you through this. 
We don't have NxStage in Australia yet either but we do have home Haemo. As you know I was able to do PD which was home based. Since you have had one PKD kidney out is PD a possibility?
In regards to the nephrectomy, you had a rough time! I think that is out of the ordinary and please don't let that experience deter you from trying for a transplant. My native PKD nephrectomy was straight forward and without complications. Yes it was a large slice under my ribs (no removing that monster laparoscopically) and yes it hurt, but after a few weeks I was feeling better. I still get twinges and a pulling feeling, but boy do I have some room in there now!! A transplant will be the same..... shitty for a few weeks but slowly you will feel better. It is worth the risk.

It's hard being a mum and a dialysis patient. That I really understand! I struggled, and still do, with all that a "normal" mum can do Verses a "dialysis" mum. You just have to do what you can physically and emotionally squeeze in. Kids are amazing in what they adapt to.

"Strength is taking a look at where you are and, from there, getting to where you want to be, no matter how hard it is or how long it takes to get there." I know you have the courage to get past the barriers.   

[Des]

So pecker means the same there as it does here ! 

Yes, That is why this is SO funny,,,,,, I really enjoyed the laugh.

Hehehehheeh

[Des]

Wattle,

It has been lovely to here from you......  I am really trying my hardest to just get on with it.... mostly it works but somedays are just harder than others.

[Bruno]

I'm absolutely mortified...it means 'keep your chin up'...not what some of you think! Sorry, Des.

[sumodidit]

To Des and everyone, I have read your post and scanned through the others, I myself have been on dialysis for 3 years this past October. Everyday that I get up for treatment the first thing that goes through my mind is that I got to get ready for dialysis. The next thing I'll ask myself is why? Afterwards I'll get ready and head on out to treatment. I know its hard and reading everyones post makes me happy to know that I am not alone in regards that we all suffer mentally. What makes me happy is that being a member I see the support from one to another. Going through dialysis puts a big impact on our lives. I actually have spent more time here talking about my situation than talking about it to person to person without getting a crazy response. Maybe its because we are all on common ground here in this forum. I don't know.....what I do know is that every member here welcomes all of its new members with open arms and are ready to show support, compassion, and advice!!

[kitkatz]

It has been twelve years and I would still rather go shopping than go to dialysis. I still flinch at needles and have had to talk myself through remaining calm while thy use the new fistula area these last two weeks.  I have wanted to run and hide, but I tell myself I am a big girl and can do this again and again and again and again......

[Des]

I had another dreadful dialysis  session on friday night..

I clotted up so badly that when they removed the needle from my arm they "pulled" and "Pullled" to get the remaining clot out of my fistula. It was a very long stringlike red jelly coming out of my fistula. 

Now this is still ok..... what freaked me out was that 3 staff members were trying to force the machine to work for at least a half an hour before that, none of them realised that I was clotting. So.... They were pushing a very large clot into my arteries..... I hate being so helpless.

[chook]

Des, just wanted to say how awful!!!! Hope things improve... and quickly

[Stoday]

they "pulled" and "Pullled" to get the remaining clot out of my fistula. It was a very long stringlike red jelly coming out of my fistula. 

Yuk! I've had an inch long clot pulled out just like you describe — stringy red jelly    Must have been awful for you 

[MooseMom]

Dialysis isn't a particularly dignified process, is it.   What did they say when they finally realized you were clotting?  Any words of explanation or apology?

[rsudock]

Oh goodness Des I am so sorry you are having to bare all this. I am thinking of you and believing you will pull through. When I first started D I would just cry all the time...sometimes still do when I have a bad day with my students and I am overwhelmed at work I cry and cry on the machine. I am a big baby....

take care
xo,
R

[Lucinda]

Hi Des....Really sorry you are having such a bad time with your dialysis.  I had a bad time in the beginning but in the last six months I have felt terrific and life is really good for me right now.  As for the "Pecker", Aussisms can be misunderstood.  Poor Bruno!  Keeping your pecker up means keeping your chin up over here.  But if it gave you a good laugh then all the better.

[okarol]

Now this is still ok..... what freaked me out was that 3 staff members were trying to force the machine to work for at least a half an hour before that, none of them realised that I was clotting. So.... They were pushing a very large clot into my arteries..... I hate being so helpless.

   
3 Staff        Des
Members

[tyefly]

   We all hate Dialysis     thats why we are here.....  I get real tired of doing it every day.....   six days a week for 4 hours and 39 minutes every day  ... and then there is the set up time..... boy....there is got to be more to life that this...... but  this is what gives me life..... and when I cheat and dont dont my D.... after a couple of days .... I am reminded how badly it feels.....  I feel so good when I do D ......  that I think I dont need to do it.... untill I dont... 

Des.....hang in there.... we are here for you... each and every day.........

[MooseMom]

Tyefly, you do D with NxStage for 4 and a half hours six days a week?  I thought the whole idea behind NxStage was that you could do shorter sessions more frequently! 

[Des]

MM,

They had nothing to say.... just that they thought my clotting was due to the higher HB.

I just want to say that I spent Monday night crying at dialysis again. I have been at it for 8 months now and every second of it has been filled with contempt. The process ,the staff, the beds, the time........ now that I am thinking about it it is like doing time in jail or comunity service. 
. You are forced to do it
. You are in for life
. The wardens are animals
. The food is bad
. The beds are uncomfortable
. You have no say in what the keepers do or don't do
. The torture - of course how can I forget about the torture
   

[okarol]

  Des 

[MooseMom]

Des, has there been any word about your potential donor that you posted about earlier?  I honestly think that you should pursue transplantation as far as possible.  I would like to think that eventually you'll get used to D and that you will become more "accepting", but I really don't know if that's true.  To blithely opine that things will get better is to breezily dismiss your very real resentment of the whole thing.  I don't blame you one single bit.  When I start D and if I'm in clinic, I suspect I'll be just like you.

Can you find out if the prospect of home hemo might be available in SA any time soon?  If you could do something like NxStage, would that make it all more bearable?  I haven't gotten any answer from the company regarding plans to bring NxStage to SA, but perhaps if you were to make inquiries since you are there, perhaps you could find out more.

I'm so sorry this has been so awful for you.  I think about your situation often.  I get glum and frustrated just thinking about it.

[rsudock]

Hi Des,
 Is D going any better for you? Hang in there!
xo,
R

[chook]

Oh, Des, I feel so badly for you. I keep checking in to see if things are improving and sadly they are not. I think rsudock and I were both typing the same thing at the same time - Hang in there!!!!

[rsudock]

Des I saw on another post that now you have kidney stones because of your binders....oh goodness! hang in there!

xo,
R

[Des]

Morning all.

I had a dreadfull treatment last night. I got into a serious fight with a staff member. I called the regional  unit manager.

It all started when I insisted that she attended to an alarm. She replied that it is not her patient.To which I said, so if someone is dying and it is not your patient then that is that?
She called me a "big mouth" to wich I replied : " get me off this machine then we'll see who's mouth is the biggest"     

   

ps. she is getting some warning or something

[YLGuy]

The techs in my center are experts at ignoring alarms.  I set mine off on purpose once.  I waited for my bp cuff to inflate and flexed my arm until the alarm went off.  It took 3-4 minutes for anyone to even come by to see if I was still breathing.  Scary.

[billmoria]

While I can certainly understand that people can be depressed about the Big D - it really pains me to hear stories about staff that don't respond. I can't for the life of me understand how these people can be so unfeeling. Maybe we need a union to fight our corner.
Dialysis is never going to be fun but a caring and attentive staff can make it a lot more tolerable.
Des, I wish there were words to use that would ease your problems. I think Richard was correct when he suggested a professional. It does appear (remember I am not a professional or anything close to one) that you need to do something about what appears to be to be depression.

Hope you make some progress and soon!   

[kitkatz]

I like my staff, however I have trained them to come to alarms.  One night it beeped for twenty minutes- I timed it.  I raised such a fuss, three people came running to see what was wrong.  Since then, they seem to come get the alarm before I alarm.


Des all I can do is send you Zen Hugs