Expectations

[MooseMom]

What do you expect once you start D?  When you imagine actually being on dialysis, what do you envisage?  Do you think it is going to be hell, or are you fairly confident that you will be OK?  Does reading posts on IHD help prepare you, or does it just serve to scare the bejeebers out of you?

[kellyt]

I think that once I found IHD, which was back in Sept 2007, I found that I wasn't scared enough of dialysis.  Meaning that I had absolutely NO idea what was going on and I had ZERO knowledge of my disease and/or my future.  However, once I settled in and met people who were still living their lives, either because of or in spite of dialysis, I became more  and more understanding.  I still didn't want to do it, but I had accepted my fate, so to speak.  Thanks to my sis-in-law, I never had to start.   

[MooseMom]

Oh, kellyt, what a miracle that you were able to avoid dialysis.  I'm afraid to even hope for that because I don't want to be a target for disappointment.  I don't have a donor, so I don't think I will be able to avoid D; I'm just going to have to face my fear.  I don't know what to expect.  I see how others are able to cope, but I can't help but wonder if something will go horribly wrong for me and I will be one of those for whom dialysis just isn't gonna work.  Optimism isn't my strong suit.

[RichardMEL]

From my perspective - I discovered IHD after I had been on Dialysis for over a year. I only wish I'd discovered it beforehand!!! Not that I was scared or thought it would be the end of the world or anything, I obviously was pretty apprehensive/nervous prior to my first session. We had a seminar organised by the renal dept a few years before I started which went for about 4-5 hours going through all aspects of dialysis, showing us the hemo needles (yikes!), the machine, going through other options (pd, home hemo) and pros and cons of all the options and of course transplant was discussed. That REALLY helped, but one thing that it didn't do was bring home the actual *experience* of undergoing treatment. Of course that is very difficult to express - even though they did have some current dialysis patients saying a few things at the seminar, it wasn't quite real to me, and they didn't have the time to really explore all the different aspects of it (like you can here with so many threads and posters all sharing their experiences - good and bad).

[MooseMom]

I suppose that despite all of your best efforts, it's impossible to be totally ready for dialysis; it's one of those things that you can't really understand until you actually do it.  Of course, that's part of what makes it so scary!

[carol1987]

Well I am still pre-dialysis ... for a few more days anyway...

Reading others experiences I have felt both confidence that I will do fine...  and have been scared out of my whits!

But for the most part... knowledge is power and it has been helping me prepare.

I thought I was mentally ready since I knew for the 7 years that Dialysis could be in my future and for the past year or so that it could be anytime... but being givin a start date REALLY threw me... in spite of the prep.

[MooseMom]

Carol1987, I am in EXACTLY the same boat as you are...knowing for years that D is in my future.  Yes, you'd think we'd be mentally ready, but I'm not sure you really can be.  I haven't been given a start date yet, but it's a'comin', and I know I'm not ready.  I'll be eager to hear how your first day goes...when is it?

[paul.karen]

Good thread.
 MM most people dont get a Start date.  From my experience and reading many experiences here generaly the patient will set the start date.  I prefer the set your own start date over the emergency your going to start now.
This site prepared me well.  Although i still hate dialysis..........

[MooseMom]

paul.karen, yes, I see what you mean, but I would imagine that if you are not starting on an emergency basis, you can't just show up at your clinic and say, "OK, I'm ready to start now."  I'd think that the clinic will have to give you some sort of "start date" so they'd be ready for you, or is that not how it works?

BTW, I haven't seen you around for a while.  How are you doing?

[paul.karen]

True the clinic would give the ultimat start date.  But generaly after you tell the neph. you think your ready.  My neph sent me to a clinic and a day later the clinic called me and said i didnt have the right insurance to go to them.  I called the neph and he told me of a clinic at St. Francis.  I called them and said i need to come see you ASAP.  they said a patient has never called them like that out of the blue.  But i was ready to start.  Took a few days for my neph to get everything situated for me to start there.  They still call me the guy who just walked in for dialysis lol.

I peek in every now and again MM.  Not been feeling 100%  or even 80%.  And been very busy at work.  Other then that i am good as i can be  thx for askin.
P&K

[MooseMom]

they said a patient has never called them like that out of the blue.  But i was ready to start.  Took a few days for my neph to get everything situated for me to start there.  They still call me the guy who just walked in for dialysis lol.

I peek in every now and again MM.  Not been feeling 100%  or even 80%.  And been very busy at work.  Other then that i am good as i can be  thx for askin.
P&K

"Hello.  I'd like to start dialysis please, thank you very much."

I hope you feel better soon.  Are you still on PD or have you had to switch to hemo?

[RichardMEL]

I was given a start date by my unit. They called up and said OK you're starting in 3 weeks on July 25th.. you'll need to come in at 2pm. So I had a bit of notice which was kind of good. I too amd glad that I didn't wind up in ER or anything having to start that way.

[kellyt]

Moose, can you go visit the site you're going to be have dialysis in?  I was able to go see one DaVita site and it was really nice.  I felt more at ease after being in there, but still terrified.   I hope you can find a donor soon.  Or that you get "the call".   

[MooseMom]

I have been to the clinic and have had a quick chat with the social worker.  She told me a few basic things...that they have "master cannulators" who work with newly fistulad patients, that I can't plug in my laptop or any other boredom-relief electronic gadget and that I will probably have to be on a waiting list to get the shift I want, which probably means I will have to go early in the AM or late in the PM.  My mom was on dialysis for the last 5 years of her life, so I spent a goodly amount of time in clinics and looking at machines, etc.  Once I know I will be starting, I will ask for a more extensive tour.

[carol1987]

Saw my Neph yesterday and since i am feeling so "good" he took a renal panel to check my #s .  If they stayed the same or look a tad better , we will hold off another week.....  If they got worse we will most likely start this Thursday or Friday in Hospital for as he said "two short gentle treatments".  He does not want to push it to the point when i get sick before we start.... 
So I am now basically week to week waiting.

I will fill my prescription for the Emla cream today.. so i have it when i need it.

I have PKD and  other than having much less energy that in the past and  a cough in the am  i have no others symptoms.... no itching, no nausea, no metallic taste,  good appetite......  But my GFR is about 8 (once said 6 now said

[RichardMEL]

I have been to the clinic and have had a quick chat with the social worker.  She told me a few basic things...that they have "master cannulators" who work with newly fistulad patients, that I can't plug in my laptop or any other boredom-relief electronic gadget and that I will probably have to be on a waiting list to get the shift I want, which probably means I will have to go early in the AM or late in the PM.  My mom was on dialysis for the last 5 years of her life, so I spent a goodly amount of time in clinics and looking at machines, etc.  Once I know I will be starting, I will ask for a more extensive tour.

See I just don't understand why they have rules like that - that you can't plug in a laptop or something. Insane. Heck we had a power outage today (some morons from IT killed some master circuit or something) and only one bank of power outlets were working, which happened to be right near my machine. I actually told them to disconnect my laptop power supply to plug my D machine in (it was on battery power) - lol they left my laptop power in and put my machine next to it! 

These things are stupid in my view. a laptop or cell phone has no affect on the dialysis machines, and they make our lives that much easier when dealing with dialysis.

*shakes head* I'm sorry that unit is jerky like that.

[MooseMom]

I have PKD and  other than having much less energy that in the past and  a cough in the am  i have no others symptoms.... no itching, no nausea, no metallic taste,  good appetite......  But my GFR is about 8 (once said 6 now said

REALLY?  That's fantastic!  Last checked, my GFR was 18, so I'm looking to you for evidence that I can go a bit longer.

[MooseMom]

RichardMEL, I get the impression that a lot of units don't let you plug in your gadgets.  I mean, I must have gleaned that from IHD because I thought to ask at the clinic, so I got the idea from somewhere that I shouldn't assume you could just plug in any old thing.

[RichardMEL]

One more reason I love my unit!

Hey MM, I didn't start till GFR 6 and I didn't have any symptoms apart from tiredness either.....

hope that helps your hope. Just remember - everyone's different.

[Stoday]

I had 7 years to think about dialysis. Nevertheless i was profoundly shocked when my neph said "You should now be thinking of starting dialysis". So the question was deferred for a month. Then another. The month after the third deferral I was so bad I finished up going to ER and being admitted to hospital for 8 days. That's when I started. Do not defer it like I did.

Initially I tried to balance the advantages of dialysis against the disadvantages. By the time I started is was a no-brainer!