my time next week

[bluesgirl]

It's now become my turn. I'll be starting dialysis next week, probably on monday, if I get the place in the unit then. I was supposed to go to one hospital, but they are rather full and only had morning times, ie get on a 7 am, and I abhorr mornings. Consequently they offered to check with another hospital a bit further away, but it's easeier to get to since it has the subway close by. that hospital MAY have a place on the afternoon shift, so get on time would be at 3 pm, so fingers crossed for that, if you will.
I have a ceatinine of 802, don't know the us number, and an starting to feel rather shitty so in some ways, nausea, hungry, but not feeling like eating, restless leg and arm ( strangely enough only in my right arm and right leg, what's going on with that?!) and a very slight headache. I'm longong to feel better. I'm a bit worried about the sticking pain still, but have been equipped with emla now to put on an hour before treatment. The only issue is I wish I had someone to hold my hand the first time as I'm afriad of needles, but I'm guessing none of the nurses will have the time. Also I'm worried about what they say about feeling much sicker the first few months. I am still peeing, and praying that I will continue to do that, as it mean less fluid restrictions as I understand it, so prayers about that would be very apprechiated, also tips on how I might be able to keep peeing for as long as possible.I have had a feww weeks of being swollen but with the help of not to much furosemide that is now down. I'm nervous, but I'm trying to keep a relatively possitive attitude. I will take the time on the machine and read ( if I'm not too sick to read the fisrt few months) all the plays in my  small  amassed "theater library," and try to read other books as well that I have bough but never read, and also write ( for instace I have an abandoned children's film that I've been meaning to write on, but not had the energy or time to finish.)  Thus I'm trying to make d-time, my "appointed luxury ME time", when I have time to do all those things I never have time to do other wise.
Also, on thing that frightens me a bit is the fluid restrictions, perhaps you all can help me ease the fright about that...how much ARE you aloowed to drink a day on D? I've been told, since I started swelling to try to keep my fluid-intake to 1.4 liters a day, which I find is for far managable.Well lots of questions, hoping someone can please take the time to answer all or some of them...

[jeannea]

You're going to be ok. I hope you get the time slot you want. The techs may not have time to "hold your hand" but if you tell your tech you're nervous, I'm sure he/she will help make you comfortable. Most of them aren't heartless.

When I was on hemo, I was able to figure out how much I could drink a day based on how I felt and my weights. Give yourself a little time to adjust and your body will tell you.

Dialysis takes a little adjustment but soon you will feel better. Be kind to yourself over the next few weeks and it will be all right.

[Cordelia]

I wasn't on fluid restrictions when I came home from the hospital. I too am still peeing so no fluid restrictions for me.

YOu have a good attitude in the way that you are thinking it's "ME" time, that's how I think of it too   

You will soon feel better dialyzing. I did too.     It sure beats that constant miserable crappy feeling!!

[galvo]

bluesgirl, I know where you're at. I was right there not so long ago. I remember coming off the first session thinking 'that wasn't too bad.' The needles have never bothered me; I don't use any local. The fluid restrictions are a bugger, though. I followed the tips I found here, little sips works wonders. But, eventually, I realised that reduction of salt makes for a reduction in thirst. Yeah, dialysis time is reading time for me.

Best wishes. I have a good feeling about you. You'll be fine.

[Ang]

bluesgirl,

good luck with the next chapter in your journey,D takes a few weeks or so to get familiar with the goings on of it all.
a guide to fluid intake in australia at least , is 500 ml + peeing.
salt=fluid, i lived on ice blocks,other frozen fluid for 4 years
you will come to now who is who works in your unit,( to get you on off and out) and who will take a little time  to answer your questions.
when you feel up to it, find out the inner workings of the machine that your using.ask questions,so you realise when a nurse may be doing something wrong.
cheers

[kristina]

Hello bluesgirl,

I do hope you will get the place at 3pm at the other hospital
and I keep my fingers crossed for a good outcome at your first D-session.

Your Creatinine of 802 sounds very, very high
and I wonder what your Urea-Bun-level is ?

I am not surprised that you don’ feel well right now
and I do hope the first-D-session makes you feel a little better,
so that you don’t feel nauseous any longer and you can eat again.

I send you my best wishes,

Kristina. 

[willowtreewren]

I hope that you will soon feel better as the treatments remove the toxins that are making you feel like

 

With your attitude, you'll do great. 

Aleta

[bluesgirl]

Your Creatinine of 802 sounds very, very high
and I wonder what your Urea-Bun-level is ?

finally found a converter, which messurement is the us one?

As far as I can see they didn't take an urea this time , but last time, when my creatinine level was 19.7

[kamar55]

Thus I'm trying to make d-time, my "appointed luxury ME time", when I have time to do all those things I never have time to do other wise.
Also, on thing that frightens me a bit is the fluid restrictions, perhaps you all can help me ease the fright about that...how much ARE you aloowed to drink a day on D? I've been told, since I started swelling to try to keep my fluid-intake to 1.4 liters a day, which I find is for far managable.Well lots of questions, hoping someone can please take the time to answer all or some of them...

great, positive attitude to view D as Me time...I've heard the emla works wonders, though never used it. As a diabetic, I'm used to needles and they don't bother me. After 6 years on D, I still fuss about fluid restrictions. Generally it's a liter a day (with lots of variations)...I still pee maybe 1/2c/day...way down from when I started but many stop totally....try to determine whether you're thirsty or if your mouth is just dry..My remedy for dry mouth is sugar free cough drops/eucalyptus. It moistens and keeps it "cool" feeling. And I always have a few freezer pops (1-2oz) on hand--the kind you keep on the shelf and put into the freezer a few at a time. They really refresh/cool and prevent me from drinking a lot more.....

[Poppylicious]

*fingers crossed* that you get the afternoon slot that you want.  I really hope your first few sessions go well for you (and the rest obviously, but those first few will be the important ones as you get to know the staff and get used to being on haemoD!)

*huggles*

[Tracy]

I started D a year ago in May and the first time, I stood there crying my eyes out I was so scared.  Now, the technicians say, remember when you first started D?  We all laugh.  At the time though, I was very scared.  It wasn't as bad as I thought.  I use the emla cream.  I always put my hand over the plastic that covers the cream to sorta "heat up" the cream.  Seems to absorb more into my skin and make it more numb.

Good Luck!  You are gonna do great!

Tracy

[woodsman]

I just started dialysis on yesterday  for my first time and it's not as bad as i thought it would be. The people there were so nice and while the needles are always an issue it is the worse part, once they are in it's smooth sailing. I will tell you this aftyer just one session i feel MUCH MUCH better more energy not tired and while i hesitate to say younger after just one session...  You will sail throught it with no problem... we are all holding your hand on this one.....

[boswife]

oh woodsman, as i was reading these posts, i was hoping you had seen this one and your post  just poped up    and what t a perfectly precious post it is.    And bluesgirl, we WILL all  be holding your hand so take that with you and hold onto it and put it into your mind when you go for your first D and when ever else you need it.   It's going to be ok and except for the 'have to ' part of it, you just may begin to enjoy that down time to take care of things that would otherwise not get done.  I wish you well

And Tracy, im just the 'partner' and i was the one crying my eyes out for my hubby (when he left my site) and thought i'd never get over it.  It's amazing how time passes, and lifes fears change.  Im now giving him his D..    <---- That shocked look is cause *I* was the one afraid of the needles..lol 

[Stoday]

I was amazed at how much better I felt after my first hemodialysis session. So much so I looked forward to the next session!

Don't get too fazed over the needles, you'll get used to them. It's not nearly as painful as a wasp sting.

Everyone has their own way of copeing with the stick. I screw my face up in a horrible expression. 

[galvo]

I thought that was your usual expression, Stoday.

[rsudock]

you can do this...hang tough!!

xo,
R

[bluesgirl]

I start on tuesday, at the hospital which the subway goes to. However, they decided to give me the morning shift at the beginning anyways  but the nurse said that that's mailny because for the first few times, or at least the first time, whenI will have to see the doctor and stuff, and that the goal was to get me on the afternoon shift as soon as possible, and believe me, I will hassle them if they don't 
mornings just are NOT my cup of tea. So anyways, I'm to show up ther on tues 9.30 to I guess meet the doc and get my first treatment. At least they will put me in a room where they have self-treatment-traiing which is what I've been recommended and what I want to do, in order to hopefully go onto home-hemo eventually (not next stage though, our system is a bit different and we get the big machines home instead and do home maybe 4-5 days a week.)

[RichardMEL]

*hugs* bluesgirl,. I am not a morning person either so I feel your pain!!! I hope you will be OK!

I just wanted to comment on something you wrote in your initial post - about being worried about feeling *sicker* during initial dialysis treatments. Now I can't speak for your own experience and what it will be like, but I believe it is quite unusual to feel much worse during initial dialysis treatments. It is true you may not feel much better initially as you adjust and stuff, but it's unusual to feel much worse. Anyway I hope you don't!!

btw a creat of 802 really isn't THAT high. I used to run between 900-1000 while I was on D, and there was one guy in our unit who was hovering around 1500. The issue though is less the number and that you are clearly feeling the symptoms - which I would be more concerned about. Hopefully once you get into D you will find that stuff reduced a lot.

Finally about fluid. Yes, this was one of the hardest things for me also. Everyone is different - as others have said the usual thing (down here at least) is 500ml/day+whatever you pass (the 500ml initial value is based on an average amount of fluid you lose via sweat and other "natural" means during a day). Some people are lucky and do not have to observer fluid restrictions - but if you're retaining fluid it's likely you will. I always had to remind myself when I saw a drink I wanted that having fluid collect around your heart and lungs is not fun, and the cons definitely outweigh the pros of having that drink.

Hang in there and I hope your first session goes well!!

 

[bluesgirl]

going in tomorrow. Have been feeling absolutely horrid the last few days, so it's mostly just feeling good being able to go in. The night between yesterday and today was awful I really felt like "giving up" ( even though what that would entail I don't know...I just felt like going to sleep and sleeping for the next few day/weeks untill I feel better.)
I have had a strange feeling in my body, kind of like a croww between restless body and an anxiety attack and fever chills without the fever...
Feeling a tiny bit better now that this afternoon. The last few day I have been hanging on to a thread, just waiting for tomorrow. The one thing I'm scared of is that it will take a long time to clear me of the disgusting taste in my mouth, the nausea, the acetone breath and sour stomach making me unable to eat  and weird feeling in my body, making me unable to sleep and the ...not sure I can handle another week like the last..How long did it take for you to get rid of symothoms like these and start being able to eat again? I'm really longing for the feeling of being able to smell food and being hungry and able to eat instead of opening the fridge and just gaging...

[MooseMom]

I can't answer your questions about how long it will take before you feel better, but by what I have read, it shouldn't really take that long.  I hope that just knowing that each session will leave you "cleaner" will help you emotionally.  I am so eager for you to start feeling better.  Good luck tomorrow, and when you feel like it, please post how it all went.  And if you are willing, I would really appreciate a bit of an update after each treatment.  I'm very curious to see how many treatments it takes before you start feeling pretty good again.  Woodsman said that he felt so much better after just one treatment, and I'm hoping that it will be the same for you.

I'm really looking forward to hearing more from you.  Thanks in advance for your willingness to share your experiences.

[woodsman]

Goodluck  on tuesday bluesgirl, it's not as bad as you think it is going to be. I felt 100% better after just one treatment and after 3 sessions i still feel great. There were som issues with teh sticking part but it was not so bad as feeling as bad as you do right now!! you will be surprised how much of a difference it really makes and how well you will begin to feel.  Hang tough we got your back!!!

[boswife]

Nice post woodsman and hope all is well with you..  And bluesgirl, your going to feel so much better and so glad ya got that first 'go' over with.  Cant wait to hear from you and how it wasnt bad at all    Wishing you the best and  remember were there holding your hands if ya want um..  Will be thinking of you...  All the best!! 

[MooseMom]

Well now, let's see, bluesgirl.  Since Sweden is 7 hours ahead of where I am, and where I am it is about midnight, that means that you are beginning your first day of D right about now.  I am so hoping that you are OK and that you didn't have too much trouble getting up and making it to the clinic on time, seeing as you are not a morning person.  I am also hoping that by the time I wake up in the morning, you will be safely back at home and will have already posted about how good you are feeling and how relieved you are that the first treatment is out of the way.

I know all of this has not been easy for you; nothing about this is easy.  But you have clawed your way through the chaos, and I know you will continue to do what you need to do to get back on the road to better health.

 

[RichardMEL]

Wait.. Bluesgirl is sweedish? oh I so have to add her to my list... uh I mean... follow her progress with keen interest!! 

About how long it will take for you to feel better? Everyone's different. All I can suggest is don't expect instant miracles. Hopefully though in the first few treatments some of the more extreme symptoms you are having should go away as the toxin levels are reduced, but it will also take you time to adjust to dialysis, and for the right setup for YOU is determined (eg: proper dry weight, appropriate bat mix, pump speed, etc). Generally maybe as you stabalise within a month or two, maybe a bit sooner, you should feel some real improvement to a stable level. Hopefully though, as I said, as initial toxin overload is pulled by D you should stop feeling some of the extreme stuff. Certainly hope so!!!

Best wishes for your first session!

now excuse me, I suddenly feel an urge to visit Ikea.....

[MooseMom]

Wait.. Bluesgirl is sweedish?

I bet you meant "sweetish".