I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: bluesgirl on June 14, 2011, 04:15:59 PM

Title: my time next week
Post by: bluesgirl on June 14, 2011, 04:15:59 PM
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...

Title: Re: my time next week
Post by: jeannea on June 14, 2011, 07:45:52 PM
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.
Title: Re: my time next week
Post by: Cordelia on June 14, 2011, 08:16:58 PM
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   ;D

You will soon feel better dialyzing. I did too.   :grouphug;  It sure beats that constant miserable crappy feeling!!
Title: Re: my time next week
Post by: galvo on June 14, 2011, 09:11:19 PM
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.
Title: Re: my time next week
Post by: Ang on June 15, 2011, 12:56:29 AM
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
Title: Re: my time next week
Post by: kristina on June 15, 2011, 05:03:24 AM
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.  :grouphug;
Title: Re: my time next week
Post by: willowtreewren on June 15, 2011, 05:48:48 AM
I hope that you will soon feel better as the treatments remove the toxins that are making you feel like

 :puke;

With your attitude, you'll do great.  :2thumbsup;

Aleta
Title: Re: my time next week
Post by: bluesgirl on June 15, 2011, 06:06:55 AM


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
Title: Re: my time next week
Post by: kamar55 on June 15, 2011, 06:39:20 AM
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.....
Title: Re: my time next week
Post by: Poppylicious on June 15, 2011, 07:22:21 AM
*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*
Title: Re: my time next week
Post by: Tracy on June 15, 2011, 11:23:07 AM
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 :)
Title: Re: my time next week
Post by: woodsman on June 15, 2011, 01:30:03 PM
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..... :cuddle;
Title: Re: my time next week
Post by: boswife on June 15, 2011, 01:46:22 PM
oh woodsman, as i was reading these posts, i was hoping you had seen this one and your post  just poped up  ;D  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..  :o  <---- That shocked look is cause *I* was the one afraid of the needles..lol 
Title: Re: my time next week
Post by: Stoday on June 15, 2011, 08:43:54 PM
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.  :yahoo;
Title: Re: my time next week
Post by: galvo on June 15, 2011, 10:25:37 PM
I thought that was your usual expression, Stoday.
Title: Re: my time next week
Post by: rsudock on June 15, 2011, 10:44:40 PM
you can do this...hang tough!!

xo,
R
Title: Re: my time next week
Post by: bluesgirl on June 16, 2011, 07:18:57 AM
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  :banghead; 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  >:D :P
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.)
Title: Re: my time next week
Post by: RichardMEL on June 18, 2011, 08:57:52 AM
*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!!

 :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
Title: Re: my time next week
Post by: bluesgirl on June 20, 2011, 01:32:09 PM
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...
Title: Re: my time next week
Post by: MooseMom on June 20, 2011, 01:51:21 PM
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. :cuddle;
Title: Re: my time next week
Post by: woodsman on June 20, 2011, 02:32:17 PM
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!!!
Title: Re: my time next week
Post by: boswife on June 20, 2011, 09:50:31 PM
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  :2thumbsup;  Wishing you the best and  remember were there holding your hands if ya want um..  Will be thinking of you...  All the best!! 
Title: Re: my time next week
Post by: MooseMom on June 20, 2011, 10:10:10 PM
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.

 :cuddle;
Title: Re: my time next week
Post by: RichardMEL on June 20, 2011, 10:25:58 PM
Wait.. Bluesgirl is sweedish? oh I so have to add her to my list... uh I mean... follow her progress with keen interest!!  >:D :rofl;

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.....
Title: Re: my time next week
Post by: MooseMom on June 20, 2011, 10:29:50 PM
Wait.. Bluesgirl is sweedish?

I bet you meant "sweetish".   :P
Title: Re: my time next week
Post by: RichardMEL on June 20, 2011, 10:42:39 PM
oh we know she's sweet!!! That goes without saying!!

 :shy;
Title: Re: my time next week
Post by: boswife on June 21, 2011, 07:47:38 AM
DAng your funny Richard Mel!!   and brilliant as well  :o   You have great insite to this D stuff and speak it well.

And bluesgirl, also 'impatiently waiting' to hear from you today...  Blessings, peace and comfort for your 'first'  :flower;
Title: Re: my time next week
Post by: okarol on June 21, 2011, 12:29:45 PM
 :waving; Hi Bluesgirl,
Hope you're feeling better.
 :cuddle;
Title: Re: my time next week
Post by: bluesgirl on June 21, 2011, 12:46:05 PM
hi all, and thanks for beeing the caring people you are, it really helps!
Well, I guess the slogan for today has been "all pain , no gain"...
First off, of course I couldn't switch very well to "morning hours" from being a night-olw, so knowing that I "had" to shower before I went into D the next morning ( not feeling fresh at all) I started my shower at about 3 am. within half an hour of gettin out of the bathroom, I started getting fever chills, BAD ones, and threw up all the food I had surprisingly managed to get down that evening. I the fell, trying to go to the bathroom ( I have spina bifida and can't stand on my own but have to hold on to something, and my legs aren't very strong, so can only stand up for about 2-5 minutes a ta time.) Luckliy  jsut fell on my butt :shy; so no injuries. Managed to get to bed, despite feverchills so bad it looked like I had cramps. Fever then 38.3 C , managed to fall asleep eventually. Alarm-bell rang after about 2-3 hours of sleep. Stilla fever 38.7 now...Got up got dressed and stuff, went to put on emla, had only got one tube from my kidney nurse and those *censored*,*censored*,*censored*,*censored* USELESS plasters. tried to put them on but didn work, so in the end had to go for cling-wrap and emla smeared all over the arm where it wasn't supposed to be.
Got to the clinic and waited there for a while. Nurses went to take of wrap, arm not numbed at all. Had a nurse put on some xylocain spray, for 15 mins, nurse comes to check and stick, arm doesn't feel numbed in the least, me being afriad of needles from the start panic, hyperventilate till I get dizzy and cry ( not proud, but me+needles=almost panic during the best of circumstances.) Nurses calm me and give me emla plasters, the good type, witht he emla already on the plaster when you get them. Put them on wait for an hour, good chance to finally calm down and for the world to stop spinning. An hour later, the go to stick, and first needle is not felt at all, even though I had to hol one of the nurses hands and concentrate on breathing and not passing out, still having mild fever too, remember. Second needle hurts, not like I felt like I was going to die, but I still screamed a bit, nurse is fippling a long with needle a alot, and I realise something is wrong and start hyperventilating because it's taking to long, hurt and something is obivously wrong. Turns out they "scratched" the inside of the fistula. They pull needle out and I panic, because A) i'm already at the end of my theather after this night/morning and B) I realise they will have to stick me again, I feel like the emla is wearing off and they don't have many more numbed places to stick me...Arm swell and starts hurting a lot more. They debate if they are going to run me aon a one needle programe, but doctor can't be reached by phone and so they decide that no D for me today, try again on thurstday pull out the first needle and  I start trying to calm down and dry all the tears that have squired out of my eyes. I asked for something to eat as I has feeling quite lightheaded by then, managed to get the two sandwhiches down, and in the prosess, managed to calm down a bit and feel a bit less light headed, rested for a bit,then lest to go home, still light headed and completely knackered. Went home, and a while after my helper had arrived and we had realised there were issues with who is going to help me when she is on vaccation in a week , I went to be and rested and then slept 5 hours. Feeling a bit better now, but still "sore" in body after being so tense from both fever and everything else, and a bit shaky, and very tired...
Highlight of the day: didn't feel the first needle at all much, nurses were very nice and supportive and I met the cutest poodle ever outside the hospital, "lowlight":just about everything else :banghead;
Title: Re: my time next week
Post by: okarol on June 21, 2011, 12:51:19 PM
Sounds dreadful.
Is your arm still sore or swollen?
I am sorry it was so difficult.
Big HUGS for you.  :grouphug; :grouphug;
Title: Re: my time next week
Post by: bluesgirl on June 21, 2011, 12:58:03 PM
Wait.. Bluesgirl is sweedish? oh I so have to add her to my list... uh I mean... follow her progress with keen interest!!  >:D :rofl;

Yaaay! I got on the list!!! :yahoo; :-* ;)
 appropriate bat mix, pump speed, etc). [/quote]

The WHAT?! They give you BATS?! * pictures small, cute, innocent bats of various sorts and species getting mixed in a blender, and poured in dialysate...*  Then again, some bats do suck blood, and I do have low hemoglobin... *Goes of to seriously poder the new information*.... ;) :P

now excuse me, I suddenly feel an urge to visit Ikea.....
[/quote]

IKEA mmmm...meatballs with potatoes and brown sause and lingonberry jam....Or you could just come over here for some tea and cookies and petting of any of they 8 kitties....
Title: Re: my time next week
Post by: bluesgirl on June 21, 2011, 12:59:57 PM
Sounds dreadful.
Is your arm still sore or swollen?
I am sorry it was so difficult.
Big HUGS for you.  :grouphug; :grouphug;

yup. I can now stretch it out again without it hurting, but it's swollen and hurts if I touch it...hoping it will manage to go down till thursday...
Title: Re: my time next week
Post by: okarol on June 21, 2011, 01:03:31 PM
Did they tell you to ice your arm, or use heat?
As I recall you can try putting warm (not hot) packs on it 3 or 4 times a day for about 15 minutes each time.
Someone else will correct me if that's wrong, but it should help you feel better.
Title: Re: my time next week
Post by: bluesgirl on June 21, 2011, 01:10:16 PM
No. I suggested myself that myabe I could use a special cream ( it's called hiruduid cream here it sweden) that helps with hematomas, and they said that that might be a good idea. I cant' find the tube I know I have here at home some where though  :banghead;
Did they tell you to ice your arm, or use heat?
As I recall you can try putting warm (not hot) packs on it 3 or 4 times a day for about 15 minutes each time.
Someone else will correct me if that's wrong, but it should help you feel better.

Title: Re: my time next week
Post by: kristina on June 21, 2011, 01:20:19 PM

Hello, bluesgirl,

I do hope you have better luck on Thursday.

Best wishes and Lycka till  from Kristina.  :grouphug;
Title: Re: my time next week
Post by: woodsman on June 21, 2011, 02:50:31 PM
My 4th session went well today without incident!!! it gets better...
Title: Re: my time next week
Post by: MooseMom on June 21, 2011, 03:05:23 PM
Well, this is NOT what I was hoping to hear. :cuddle;  I am so sorry that things didn't go well.  Being ill before even getting to the clinic sure didn't help.  I mean, you were not having a good time of it to begin with, what with fever and falling down, etc. 

I am hoping that now you have at least been to the clinic and have had some small experience, you won't feel quite so agitated on Thursday.  At least knowing that the staff has been kind to you will be a big plus. :cuddle; :cuddle;
Title: Re: my time next week
Post by: The Lady on June 21, 2011, 06:09:03 PM
I hate mornings, too!

However, my dialysis time is 6AM. I pretty much get up, get ready, go in and sleep as much of the D away as possible! It's easy since I have a permacath still...painless. My fistula surgery failed and I'm waiting for it to heal enough so they can cut me up again to try putting in a graft. I hope when I get to the needles that once they are in I can still sleep most of the session because I find it very dull and TV sucks at 6AM!
Title: Re: my time next week
Post by: RichardMEL on June 21, 2011, 08:59:32 PM
oops.. BG sorry I meant "BATH" not "BAT" oops! Sorry for the confusion there :)

I'm so sorry to hear about your horrible morning of non-dialysis. Sounds like they infultrated your fistula, which is very painful. I've only had it once, and yeah should be iced ASAP to slower the swelling as much as possible. I imagine it doesn't look too pretty by now. :(

One thing that concerns me also is that you mentioned your fever/chills and a temp of 38.7 - that's pretty high - did you inform the D staff of this? did they monitor your temp and do anything about that? It concerns me that you'd be allowed to leave feeling like that with apparently no effoert to either give you something, or get a doc to persceibe something, or whatever for that. Going into D is hard enough but in a weakened state is even worse in my view. Are you seeing a GP or anything about your fever/chills?

With all the creams and sprays and stuff - what about a shot of lidocan(ie: a local) directly? Yes, I know it's another needle, but they're tiny compared to the D ones. I'm uncertain about waiting an HOUR for emla to kick in??? what the?

sounds like a dreadful time, I can only hope Thursday is better.

 :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
Title: Re: my time next week
Post by: kamar55 on June 22, 2011, 04:55:18 AM
I hate mornings, too!

However, my dialysis time is 6AM. I pretty much get up, get ready, go in and sleep as much of the D away as possible!

Exactly....that's how I get through D, too....
Title: Re: my time next week
Post by: boswife on June 22, 2011, 06:57:53 AM
boo!  not what i was hoping to hear either but!!!!!!!!!!  you've seen the worst so now it can only look up right??  I surly hope that next one will go much better and that you still have a fever, ya get it checked before you return...  Be well, and best to you..    :cuddle;
Title: Re: my time next week
Post by: bluesgirl on June 22, 2011, 09:26:23 AM
oops.. BG sorry I meant "BATH" not "BAT" oops! Sorry for the confusion there :)

I'm so sorry to hear about your horrible morning of non-dialysis. Sounds like they infultrated your fistula, which is very painful. I've only had it once, and yeah should be iced ASAP to slower the swelling as much as possible. I imagine it doesn't look too pretty by now. :(

One thing that concerns me also is that you mentioned your fever/chills and a temp of 38.7 - that's pretty high - did you inform the D staff of this? did they monitor your temp and do anything about that? It concerns me that you'd be allowed to leave feeling like that with apparently no effoert to either give you something, or get a doc to persceibe something, or whatever for that. Going into D is hard enough but in a weakened state is even worse in my view. Are you seeing a GP or anything about your fever/chills?

With all the creams and sprays and stuff - what about a shot of lidocan(ie: a local) directly? Yes, I know it's another needle, but they're tiny compared to the D ones. I'm uncertain about waiting an HOUR for emla to kick in??? what the?

sounds like a dreadful time, I can only hope Thursday is better.

 :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;


The arm is still swollen and sore and hard to the touch and if I try to stretch it out, I feel it, and it "gives resistance" ( I think that's the swelling?)

I also have two bruises, one HUGE over the hole where they infiltrated me and one still very black and blue over the other hole, which melts together with the big one, so I wonder how on God's green earth they are going to manage to find any place to stick tomorrow, or if they stick inspite of the pain it's bound to cause...that frightens me a bit.

As far as the fever goes, it's my "usual" fever. I have it sometimes 1-3 times a week, sometimes every other night or so, and I almost always get it when I shower or wash my hair now a days.  Have had it for 6-7 years, but at first it wasn't so frequent, it has got worse. I've been to lots and lots and lots of docs, taken what feels like hundreds of tests and been though lots of exams, but no one knows what it is. It's not pleasant, as I almost always get these horrid chills before the fever and fevers of sometimes up to 39,7-39,9 C (103,4-103,82 in farenheit) is not entiely uncommon, although usually it's around 38,3- 38,9 (100,94 - 102,2 in F) and sometimes throw up from them...also, having a fever makes you very tired the next day, and when you have fevers every other night for a week or two, well....
 :thumbdown;
But most of the doctors don't want you as their patient if you don't have anything easily cured, like a broken leg or a cold, or if they have to try to figure out what is wrong with you, so most of them say " it can't be anything within our field, so not our responsibility..."
My kidney doc is trying to find out what is wrong, but so far has drawn a blank.


P.S The nurses at the D gave me two asprin-type pills to help the pain from the infiltration, and the doc will prescribe "calming pills" ( I think they're what you call sedatives?) for me to be able to take before D, so I feel a bit calmer when they stick me. I already have some at home fro tomorrow as I sometimes take them for anxiety.
Title: Re: my time next week
Post by: RichardMEL on June 22, 2011, 07:29:02 PM
hmm sorry to hear about your "usual" fever - that sounds horrid :(

Have they given you any cream for the bruising? Hydromil or something like that? I forget how it is spelled. That may help a little bit with the icky bruises.

The one time I was infultrated in my fistula the nurses went to my upper arm (my poor virgin flesh!!!!) and needled there, but that was during the same session it happened. The next session just went back to the usual spots and it was OK - so hoping yours looks and feels worse than it is and will be OK. Hoping the sedatives help too.

Title: Re: my time next week
Post by: bluesgirl on June 23, 2011, 03:04:53 PM
hi everyone! Today, I have officially had my first dialysis.  :bandance;
The day started early again , was supposed to be at hospital 9 am. Sleep from 10 pm to 2 om, then no sleep. I was very nervous, because I didn't know if they would be able to stick at all, it didn look it since my arm looks a huge mess, but I dutyfully put on plasters where they told me to put them, and also put the two extra onse I had got on places up the arm where I though they might be able to stick. I was shaking in the taxi and shaking and tense whenI got ther, but couldn't relax. I get to the unit and decide that it'st time to take my calming drugs ( the substance is called oxazepam,) took awhole 5 mg pill, even though during anxiety I try to stay to ˝ a pill, but I wanted to be a bit out of it. So they look at my arm, and say they want a doc to take a look at it before they decide wheater to try or not. I felt as though the emla hadn't worked (maybe I was just frightened) so a nurse came with a tube of some extra cream and I had some extra on the plasters and had then taped on again, then waited another half an hour beofre doc came and said it would probably be ok to stick in one place that wasn't so bad. They went to stick, and I had a nurse hold my hand today again, managed without tears this time though. First needle went in just fine as it did last time. Second needle they did "something"...I think they hit a nerve because the pain felt like it spread, at first it HURT, then it felt more like burning in my muscles down the way to my hand and eventually my had started burning a bit too. I got really nervous, but still managed without tears as I remeber it. The nurse didn't think she had infiltrated though, since the blood squirted out like crazy and she said it had "felt good" going in. So I allowed them to hook me up to the machine even though I was till in some pain, and all the vallues on the machine showed that it seemed fine, and the nurse said that if it and she wasn't sure everyting was ok, the machine would start or sometheing like that or it would shut down. So I let them start me, and eventuallt the pain dissipated and almost went away as long as I kept my arm still.
I probably have't got rid of all the toxins yet though, since, because my fistula is new and my body is new to d, thy are starting me slow, with a flowrate of only 180 and only for 2 hours. Next week I 'll be doing 2 hours monday and then step it up to 3 hours wednesday and friday. Still, it may be the oxazepam sepaking, but I feel lighter in my body somewhat. I also don't have as much acetone-taste in my mouth, but that might be the anitacid drugs speaking...hard to tell. No fluid pulled as I am still peeing and hope to keep it that way, and with the help of the furix I'm not swollen.
 One of the problems right now is they only have protein high things to put on the sandwhiches we get. ( We get 1 ˝ apprently, but last time I had two, an now I got two and a half because one had egg and I didn't eat it because  I didn't want to risk that since I still haven't got much of the urea and potassium and phospor out of my body)  and I was unsure of eating too much protein or potassium now in the beginning as I still didn't get a "full treatment" and I have been feeling lots ( well they docs don't look shocked bu to me they feel like lots) of symptoms of all kinds of overloads of things, as you know, so anyways I went for a ham and liver paté sandwhich (we had the choice of those or egg.)
Anyways, it hurt when she pulled one of the needles out ( the first one, that had gone in well  :Kit n Stik;) but other than that my second day at D went well. I felt like the hours flew by, an I only got impatient during the last 30 mins. Granted I'll have an hour or two more in the end, but at least then I'll get time to calm myself from the stick, eat something and read.
Title: Re: my time next week
Post by: rsudock on June 23, 2011, 03:49:55 PM
so far not so bad huh? glad you have the creaming and calming pills. Take them when you go and while you adjust!!


xo,
R
Title: Re: my time next week
Post by: RichardMEL on June 23, 2011, 06:26:58 PM
Oh BG so glad to read it went pretty well for you after the initial fear and pain etc.

Yes, it will take awhile for the toxins to get down to a more normal level but every session you do will make it that much better!

Hopefully the more times your fistula is stuck, and the more mature it gets, the easier it will bee for you (and the nurses) and the flow rate etc can go up and you can get more efficient dialysis happening. Hopefully over time as the fistula becomes stronger and hardened the needles will also hurt less. I reckon 70-80% of the time I never felt pain with the needles going in (and I never used any cream or local or ahything) because the fistula just was so used to it - the point being that hopefully down the track you won't need so much cream and hopefully you won't feel so nervous and it will all be a routine thing(ie: boring) for you, and you can do without the extra meds.

Again so glad that you got through your session!! Hopefully Monday will be the same!

 :clap; :2thumbsup; :yahoo;
Title: Re: my time next week
Post by: MooseMom on June 23, 2011, 06:53:32 PM
I'm glad you got a relatively successful session under your belt.  I hope each treatment will be that little bit easier to cope with.  Be kind and patient with yourself.  We've got your back.
Title: Re: my time next week
Post by: kitkatz on June 23, 2011, 08:19:05 PM
Hurray for a good 1st treatment!  Keep going. Things get better.
Title: Re: my time next week
Post by: boswife on June 23, 2011, 08:52:25 PM
Sounds good and it will just get better and better until itls old hat  ;)  Im glad your well on your way to feeling better.  it makes the whole thing worth it.  Watching my hubby feel better was heaven to me..  I'll be awful happy to hear your feeling better too..   :cuddle;
Title: Re: my time next week
Post by: bluesgirl on June 27, 2011, 10:32:29 AM
another session don today. Had the afternoon shift today, so just came home. All went rather well today, cut my oxazepam dose in half, but managed anyway. Emla crea seemed to work on the first hole, but the second one hurt, whether she hit a spot that wasn't numbed or she hit a nerve I don't know. It seems I have a "curse of the second hole", it's always that one that seems to act up. Two hours on the machine today on 200, I think, or maybe it was 180, don't remember, no fluid except what went in to flush the tubes, as not necessary. Got delayed home beacuse when I got out to the taxi that was to take me home, the car wouldn't start, so they had to call another one  :Kit n Stik;
Feeling more tired than last time, I think, and not as light in the body, and a bit nauseous, strangely enough since I actually had more dialysis today than on friday, although not by much maybe.
Had to buy latexfree plasters with special glue for sensitive people as the other ones were turning skin almost as red as it was when I got infiltrated, no surprise though since I'm allergic to latex (NO RichardMEL, leaaaave it... ;) :P :-*)
It still hurt getting the second needle out, no clue as to why, but I guess it gets sucked into the wall or something...
So all  in all a good day, but tireing
Title: Re: my time next week
Post by: boswife on June 27, 2011, 10:45:28 AM
 :clap;    heck, sounds like your off to a pretty good start i'd say.  Does take the bod a bit to adjust, but your doing great!.  Hubbys V seemed to cause lots of greef so when i was training to Canulate it myself, we just moved it and has been great ever since.  I dont remember if your already starting buttonholes? or if it's just that second stick is causing ya pain wherever it is? ... 
Title: Re: my time next week
Post by: RichardMEL on June 27, 2011, 06:50:38 PM
This is really encouraging BG  that hopefuily things are settling down for you!!  :2thumbsup;
Title: Re: my time next week
Post by: bluesgirl on June 27, 2011, 08:31:07 PM
the idea is to start buttonholes, but I'm thinking maybe I'll ask them on wed to move one or both holes ( hoping it won't hurt much more than getting them ready now, as they are still so new,) since they are very close to the inside of my elbow and that means I have to keep my arm very straight in order not to let the needles puncture the fistula, which in turn makes it hard to read, eat and do other things since I have to do them one handedly almost. It's also quite uncomfortable and I get a numb hand or cramps in in the hand easily, so today we disguees moving one site at least but I don't know when they think it would be good to do it, if you have to wait for the fistula to grow a bit better and so on...On the other hand I'd rather have them move the site now and start fresh so that I can start to develope a couple of well-working buttonholes that are still "comfortable"...Decisions, decisions...

p.s why have they not developed a with a soft, bendable tube like an IV-needle for HD? Seems like it would be an easy feat, and less scary to have in your vein/artery once the sticking-needle comes out of the tube like in an IV...


 
:clap;    heck, sounds like your off to a pretty good start i'd say.  Does take the bod a bit to adjust, but your doing great!.  Hubbys V seemed to cause lots of greef so when i was training to Canulate it myself, we just moved it and has been great ever since.  I dont remember if your already starting buttonholes? or if it's just that second stick is causing ya pain wherever it is? ...
Title: Re: my time next week
Post by: bluesgirl on June 29, 2011, 10:17:12 PM
another day of D yesterday. I had the morning shift, as usual  :Kit n Stik;
Had a fever the day before yesterday, but not too bad (38.4 if I remeber correctly) so a bit sore in the body. No weight gain to speak of so no fluids pulled, I feel truly blessed for this and hope I remain peeing. I do however try to limit my fluid intake to around 1.5 liters, sometimes 2.
All went well with the sticking, except they hit the bloody nerve as usual, but now that I know it's likely to come, in a way it's easier.
Sat for 3 hours this time, on my own initiative. They were suppoed to step the treatment up next time but I felt like one day en between won't make my fistula bigger so why not go for 3 hours, the doc agreed. Eventually I'll be going up to 4 hours. don't know when they will be starting to take the flow-rate up, but I guess it's better to er on the side of caution.
Felt pround of myself today actually: I managed they sticks without any calming drugs on board, and also, I felt like challanging myself, so I braced myself and managed to look on as they pulled the needles out, which is a big step for me and a step towards being able to stick myself and thus do home- or self- dialysis. it might not sound like a huge deal, but I've been terrified of needles all my life, and never been able to open my eyes until the needle is out and safely tucked away out of sight.
I the cab home I was actually thinking that, and I may very well regret this statement or change my mind in a few weeks, I don't really mind being on D :shy;. I know I never want to feel the way I felt for the last few weeks before I started ever again, although I still feel a bit like that still, but I think I'm getting the teeny tiniest bit better, hopefully (KNOCK ON WOOD!)
But like I "said" I felt like I don't really mind being on hemo- besides the sticking which I'm still scared of. I get to lie in bed and read books or watch TV while people come and talk to me every once in a while and serve me sandwiches ( only two, supposedly but today I managed to get a thrid one since i was till very hungry) so really not to bad actually. Like I said in the beginning of the thread, this is  ME-time, where, so far, I get to relax, read and watch TV, which I love, and be pampered by the nice nurses. Am I insane? Will it get worse and be horrible, will I regret ever saying this,  or is this a sign that I might actually be able to handle this?

P.S came home and realised I was getting a fever  :banghead;, with my feet an lower-legs "icing". ( it's the direct translation of what it's called in Swedish, but if I write that its sort of halfway between pain and chills and restless legs, then maybe you know they feeling I'm getting at?) was hoping my fever might go away as my blood got cleaner on D, but it seems not  :banghead; :banghead; :banghead; only got 38.3 though, so it was managable and I slept though it.
Title: Re: my time next week
Post by: MooseMom on June 30, 2011, 11:10:30 AM
I'm proud of you, too, that you can actually look at the needles now.  I know what an enormous step forward that is for you!  Congratulations.

I am also really glad that you have found some balance regarding D.  That you can now view it as a not so horrible experience, as "me time", is wonderful.  Having attentive staff makes all the difference in the world.  It sounds like staff in Sweden might be better all around than the usual staff we get here in the US.  Ideally, you are all working together as a team to get you healthy again.  I'm so pleased for you!
Title: Re: my time next week
Post by: bluesgirl on June 30, 2011, 06:46:37 PM
another D-day "today" at 9, hoping it all goes well and will report when I'm back. Had a really bad day today   >:(
Was going to buy myself a new computer, so went to the computerstore with my assistant ( my helper, have help 4-5 hours 4 days a week.)
However as soon as we got there, I could feel a fever coming on, whihc always starts with chills. Of course the computer I wanted was out of stock and can only be bought on the net. Was starting to feel rather bad, but decided to try to solider through as after the chills have gone and the fevers starts, I usually feel better, thus decided to try and eat something, went for a sallad, which was rather good, but started feeling worst and worse and had to sit in the sun with a blanket wraped aroudn myself while everyone else was walking along in linnens and t-shirts and sweating. Just when I had managed to pick enough food into myslef, my body decided to revolt, and I threw up in the restaurant ( we were sitting outside though luckily) which felt embarrasing, but I really couldn't do anything about it, as it all caame out of the blue. Decided to call the day quits and go home. Had been feeling mildly dizzy all day and now that also got worse, so in the en all I could do was rest my head on the tabe with eyes closed and try to breath. The cab took forever , as first it was supposed to take 40 mins to get there, then it was late by b15 mins or so and then we had to go to pick up someone else, and the cab driver couldn't find that adress so we wasted a good 30 mins on that. Got home and took my temp, was feeling a bit "better" by then as the fever had broke and i had thrown up and no longer felt so nauseous. Theremometer showed 39.3 (102.74) which was no surprise because I did feel very hot and not very good.
Went to bed and tried to get o sleep, managed eventually and have just now woken up. So tired of my fever and not being able to do anything! This is the third day in a row with a fever... :( haven't been able to take my meds today, so will have to take them now...going to bed agin after that. Hopefully better news to report "tomorrow".
Title: Re: my time next week
Post by: boswife on June 30, 2011, 09:00:29 PM
so what the heck is this fever stuff??  What a way to mess with you when your on your way to better health in another way.  Hum!!  It would bother me in that how are yhou going to know if it's your 'norm' fever or infection.  Hope when you start adjusting better that that will just fade away!!   
Title: Re: my time next week
Post by: MooseMom on June 30, 2011, 09:29:06 PM
I would love to know what is behind these mystery fevers.  Does no one have any idea?  I mean, there IS a cause, it's just not a cause that is immediately discernable.  It's just so very odd.  What an awful day you've had.  I just can't imagine going through life never knowing when you are going to be afflicted with chills and fever.  Really, something needs to be done about this, but I just don't know what that would be.
Title: Re: my time next week
Post by: bluesgirl on July 03, 2011, 03:25:10 AM
didn't update on fri as I've been busy and for some reason very tired tis weekend, migt be because of fever. Anyway, fir went well, morning time as usual *grrr* but other than that ok. Bought myself an extra sandwhich which was probably good. had a talk with the dietitian about food and got a pamphlet. My problem right now is that since I'm not up on full D- not up to 4 hours yet and they only just upped my flowrate to 200 during fridays treatment, I'm not sure how much protein to eat. Also I have had strange creeping feelings in my right arm and foot, sometimes both feet and also under my thump-nail on my right hand. My potassium is at good level and so is my phoshorus, as far as I know ( they do potassium tests every treatment but posphorus only once a month apparently) so I'm not sure what it could be. At first I though it miht be high potassium or phosporus, but apparently that's  not it...any ideas?
Thurday I had an argument with my helper...the firm won't let her work after 7 o'clock, since that makes overtime, and I have had some bad day when I simply don't want people around because I'm tired, so I'v ebeen wanting to save some of my hours for a day when I feel better. Apperntly though, she now feels she can't work that way (or so she claims) because she needs to do things after work. So therfore she wanted me to plan the hours diffrently, if possible, but then again that's not possible because she's not allowed to work after 7 pm and apparently also doesn't want to. Also, I haven't been given a regular shedule, since over summer I have to take the times that are left over ( hence all the mornings when I really just want afternoons)  and only get my times  week by week.  Another problem is, that the company won't allow her to go in and do things in my flat unless I'm home, and on D- days it's  impossible for me to be home in time, so that pretty much leaves me between a rock and a hard place and I don't get the full hours of help I'm intiteled to. Anyways , we agreen that we needed to continue to do what we have done and lie to the bosses ad let her go in anyway and start work and I will hurry home as soon as I can on D-days.
So we agreed that she would go in and start  the next day. Friday ( the next day) I got to D in the morning, everything is fine. I come home and she is not there even though she was to come at 1 o'clock and now it's 2. I wait for it to become 2.30 then i call the company and say that I haven't recieved help today. They where going to call her and see what had happened, just when I hang up she walk though the door as if nothing had happened. When I asked why she was so late she said she had decided that "maybe I wanted to use my hours so she would come later " ( more likely she had found something else to do or overslept and decided to come in late.) So, when I want her to work late she can't  do it but if she feels like it, she can come in late and the work later ?How about having the cookie and eating it at the same time, anyone?  :banghead;
Anyways we didn what we were supposed to do at home and unfortunately had a bit of a tiff as it were: she had wanted to buy a new roller and  I said that there already was one, so when I get out from the bathroom I find her using my roller, not on my clothes or couch or whatever, but on her own. I told her to please ask before she uses the rooler because after all they cost money. This mmight seem petty of me but I have noticed on several ocations that she charges her mobile in my home, ie using my electricity without asking first, and I'm just sick of being used, so I caller her on that too and said that if she wanted to charge her mobile please ask first as electricity costs money. Note that I didn't say she couldn't use the roller or even charge her phone at my house, I simply asked her to ask me first. Very well, she then snapped at me that "what costs money for me is every time you want to go out to a café, that's very costly to me", I kindly reaplied that she is in no way obligated to have´anything to eat and drink while I eat and drink. her job is to help me and accompany me to the café for me to have some time out of the walls of my home, then if she want's to eat, that's her buissness, she can have a cup of coffe or even a glass of water if she feels like she doesn't have enough money. this of course caused her to get even more sour with me and affected her behaviour towards me for the rest of the day.
I don't know, maybe I was being a terrible person or too nit-picky, but I'm so tired of perople coming into my home and taking advantage without asking. I sometimes feel that I excist for them to make money off me, not that they are there for me to get help. Whst do you think after hearing what you heard? did I do the right thing calling her out on it or was I being too harsh?
Title: Re: my time next week
Post by: bluesgirl on July 03, 2011, 10:15:39 AM
another afternoon/evening with fever ( having it right now) 38.1 so not too much, but the feeling I had before the fever caused me to have to go home from being out to a café with a friend as I felt dizzy and nauseus and cold and had tired. hurting muscles and hurting head and neck. SICK of  all of this... :stressed; :'(
Title: Re: my time next week
Post by: bluesgirl on July 06, 2011, 10:43:01 AM
not sure is anyone is still reading this thread, but here goes.
The last few days have been strange, mostly due to me being very tired , whihc is no surprise I guess with a Hb of 79 and my period that has just come on. Anyways, Monday I overslept  :shy; but I called and trew myself in a car as soon as I could. They managed to fix it so I could have my full treatment, witht the warning that if it happened again, I would have to count off the time I was late from my treatment. the nurse said "maybe it will make it easier to get up, if you know this"; well, no, not if you simply don't WAKE UP on time!
Anyways all went rather well other after that. Today, I was also awfully tired but I woke up on time and slept in the car to the hospital. Now I KNOW that I had ordered the car to the hospital that I got to for D, but when I woke up, the cab had driven me to another hospital about an hour away. apprently someone had pressed a wrong button somewhere and that had given the driver the wrong adress. Consequently, I was and hour late for treatment and thus only got two hours of threatment today. :banghead;
When I was goinf home I very carefully asked them to pick me up at the hospital I WAS AT, wainter for 40 mins but when the cab called me, he said he couldn't see me even though I was standing where logically he should have been standing. I the asked him which hospital he was at and it turns out he was in the wrong hospital, he was in the hospital they had driven me to first this morning  :banghead; so had to call for a new car, which thank goodness turned up efter only 10 mins, but what a day! All because some incompetent person took my order this morning... :Kit n Stik;
Title: Re: my time next week
Post by: okarol on July 06, 2011, 01:13:38 PM

I don't understand how they can cut your time like that. I am pretty sure they get paid per treatment, and it's not appropriate for them to cut your time, even if you're late.  I could be wrong about this, but Jenna's unti never cut anything, they just made it work.
Is there no medical assistance transportation available?
It must be frustrating to have to count on cab companies to drive you.
I hope you feel better soon.  :cuddle; :cuddle; :cuddle;
Title: Re: my time next week
Post by: MooseMom on July 06, 2011, 01:57:56 PM
Isn't it frustrating to have to do everyone's thinking for them? ::)
Title: Re: my time next week
Post by: bluesgirl on July 07, 2011, 02:05:42 PM

I don't understand how they can cut your time like that. I am pretty sure they get paid per treatment, and it's not appropriate for them to cut your time, even if you're late.  I could be wrong about this, but Jenna's unti never cut anything, they just made it work.
Is there no medical assistance transportation available?
It must be frustrating to have to count on cab companies to drive you.
I hope you feel better soon.  :cuddle; :cuddle; :cuddle;

I go to one of the hospitals in my city, so not sure who pays or not. Their reasoning is that the person after who ever is late shouldn't have to suffer because the person before them was late, which I suppose is true, and I guess it also serves as a bit ofa "punishment" for being late. But when you're not late on purpose, or when it's not even your fault your late, it gets frustrating, it's not as though I overslept on purpose, I just didn't wake up, try getting up at 7.40 when you're not used to mornings and you have a HB of 79 at least that's what it was when last checked, might be lower now)... and well, you've heard the story with the cab, and sadly , it's probably not the last time things are going to go wrong with the cabs. Also, I've asked since the very first day for afternnon shifts, but since I'm the new girl who started in the middle of summer when staff is low, I get the left overs. :banghead;

I'm thinking of getting what I guess you call medical assistance transport, but I'm not sure wheather that would be more costly for me than what I currently have which is transportation for the disabled.
moosemom: it's frustrating trying to make things work between my help, my dialysis, the cabs, and my fever yes. I quite often feel like all the people who are supposed to help me make my life easier are turning against me and doing their damndest to to make things more difficult than they could be , which is very stressful and down right frustrating.
Another day of fever today, up to 102.2. Thought I was supposed to go to the movies tonight so soldiered off to the cinema, but turns out it's on tuesday (just as good) so went home again.Also currently have a bad cough, so not getting as much sleep as I would want to.
Title: Re: my time next week
Post by: silverhead on July 07, 2011, 05:48:52 PM
I sure would be suspicious of the filter being used for your hemo, possible allergic reaction?  certainly seems proper to check into some sort of allergy to something being done to you on treatment day.......
Title: Re: my time next week
Post by: MooseMom on July 07, 2011, 10:37:39 PM
One of the worst aspects of this disease is that it puts you in the position to be dependent on too many other people, and someone inevitably is incompetent, thoughtless, forgetful or unprofessional.  That really gets right up my nose.
Title: Re: my time next week
Post by: bluesgirl on July 07, 2011, 10:45:50 PM
I sure would be suspicious of the filter being used for your hemo, possible allergic reaction?  certainly seems proper to check into some sort of allergy to something being done to you on treatment day.......

if you mean the fevers, I've had them long before I started dialysis.
Title: Re: my time next week
Post by: bluesgirl on July 09, 2011, 05:48:26 AM
D went well yesterday, besides me having a cough which is still there. Doc listened to chest though and said she couldn't hear eny fluid on the lungs so I guess it's just a "summer-cold" or something, it's a bit annoying though since it gives me trouble sleeping. Got my times for next week, all morning sessions  :banghead; seriously, I feel like their making me feel worse with these morning hours, and they're not listening when I tell them! :stressed;
Anyways, got hom and had a good day but then got a fever at 11 o'clock at night. :banghead; felt really bad and threw up on the hall floor, had to push my alarm button to get thm to help clean it up. I can usually do that myself, but this time I just had got get to bed. Waited for 45 mins before they came then fell asleep. So effing tired of this fever!!! I feel I cant' do anything nice without the fever setting in, I simply don't have much of a life anymore...  :'(
In other news, I'm up to a flowrate of 250, and next week they are upping it to 300 so I can start doing HDF. I think I will also start doing 4 hours then.
Title: Re: my time next week
Post by: jbeany on July 09, 2011, 04:03:15 PM
 :grouphug;

I swear they pick the days you have the least amount of energy to become the most incompetent.

Are you running an air conditioner?  I always end up with a sore throat/cough from mine, no matter how low it is set.
Title: Re: my time next week
Post by: bluesgirl on July 11, 2011, 12:51:45 AM
just woke up  :banghead; should have been at D at 7.40, it's now 9.40, and I won't be there until around 10.30. This of course means at least two maybe 3 hours of missed dialysis. I called to appologise and to see if thye possibley had some left over afternnon time so I could come in then and get my full D. The nurse said " why don't you set the alarmbel?l" I wanted to scream "of course I do, do you think I'm stupid!?!"
But I've had a fever since 3 o'clock this night when I woke up with one, and also a bad cough, and I SIMPLY DON'T WAKE UP! So frustrated with myself as well as the unit! I don't want to sound non compliant or rude or threatning, but this is what happens if they continue to give me morning hours...how and I supposed to be able to get up when I've had chills and a fever all night and are still having that fever (38.4)and a bad cough as well as the begining of an eye infection from the feel of it?! Oh well,I suppose an hour of D or if I'm, lucky two, is better than none.  :banghead; just don't know what to do...they treat me as though it's a choice I make to over sleep, when really I know nothing except that I just woke up, haven't even heard the alarm, as far as I know...
Title: Re: my time next week
Post by: bluesgirl on July 11, 2011, 06:03:32 AM
home now. Feeling awfully tired. Clearly not my day today...the alarm at the machine went off every other minute, I managed to crush a glass on the floor and when they where pulling the needles out they somehow infiltrated me, so now have a rather big bun on my arm and will probably have a nice new bruise in the morning, just when my bruise from the first time they infiltrated me was starting to fade away. Alos, I'm swollen ( I get that way when I'm not feeling good, for instance when I have a cold) so they pulled half a liter today for the first time. On the other hand, there was no difference on the scales afterwards, probably due to what I had to drink and food. Going to bed now, hoping for a bett evening than morning. :Kit n Stik;
Title: Re: my time next week
Post by: bluesgirl on July 11, 2011, 03:47:45 PM
Up now. Of course as soon as I went to bed, I had a fever come on  :banghead; 39.2 if I remeber correctly. Also forgot to mention in last post that I did manage to get 2.5 hours of D. Should have stepped it up to four today really, but all things considered 2.5 or 3 hours ( which is what I've had so far) hopefully doesn't make a huge difference. Was also told to step up furix, at least momentarily as I was swollen, did it with takeing the med s today and now no longer swollen alreadey, so at least something good today  :2thumbsup;
Title: Re: my time next week
Post by: lmunchkin on July 11, 2011, 04:35:55 PM
Girl, so sorry you are going through all this.  I don't know why they can't get you on another shift!  They wouldn't hubby either!  I guess "Seniority" or something to that effect!  Who knows!  Hopefully things will get better for you!  Will be praying for you!     :pray;

Seriously, look in to Dialysising at home if it is possible for you!  There may be reasons you cant though!

Thanks for the update, and don't be too hard on yourself, you are doing your best!
lmunchkin     :flower;
Title: Re: my time next week
Post by: bluesgirl on July 14, 2011, 06:46:26 AM
bad day yesterday, although I suppose it was my own fault. Had managed to book tickets for harry potter and the deathly hallows part 2 premier with a showing of part one in 3D before. part two started at 00.00 tuesday night, so got home at about 3.30 at night, but it was nice to do something FUN for a change!
Was quite grumpy and feeling very tired and quite bad at D. Sessions went rather well, except they had to stick me three times because they missed with the first needle, although I didn't get infiltrated, she just couldn't get the needle in right so she stopped. This probably largely do to being infiltrated on monday which has left the arm swollen. So with me allready ina bad tired mood and her having to stick and extra time, I had a bit of a melt down and cried and shook a lot. The rest of the treatment went fine. When I was leaving one of the nurses said 2 maybe if you got o bed at aproper time at nigth you won't be so tired the nex time." This ticked me off, considering I've been asking for afternoon shifts all along so I answered back " well, maybe if I had got the afternoon shift that I asked for all along I would be able to sleep in the morning and feel a lot better."  :shy;
Anyways, got home and went to bed, slept like a baby, woke up at 2 o'clock, went to bathroom and sat in front of computer for half an hour before I felt the chills coming on  :banghead; fever all nigth and and awful cough (sounds like bronchitis or rather a lot like a goose with a sore throat.) Had fever for a few hours, threw up, eventually the fever seemed to go down, I went to fetch a glas of water, and started having chills again  :banghead; at one point ( about 5.30) I had to call my mom (shes a nurse) because I got worried: I had a fever of 40.1 (104.18) and my mother wanted me to go to the hospital, but then half an hour later it was down to 38.7 so I never went. Feeling absolutely knackered today and body hurting. Only got two hours of help today because they were short of staff, should have had 4, but never mind, hoping i can take thouse hours back on a day when I feel better. The only small blessing, for which I'm grateful, is that I didn't get a fever on my 2X Potter night!  :yahoo;
So, still havin minor cough and body sore and tired but at leadt fever-free at the moment. All of this fever stuff along with trying to juggle D-times, my help and having some sort of life is getting awfully frustrated. Also, my counseler is now on vaccation, so no help with relieving frustrations though talking to her. Not enough staff in the office of my help, 3 of 5 bosses away, my normal D- doctor seemingly on vaccation and the people in the commonwealth probably also on vaccation. Sweden during June. August...the whole country just stops and goes on vaccation... :sarcasm;
Title: Re: my time next week
Post by: jbeany on July 14, 2011, 03:06:26 PM
Okay, you at least have to go to the movie review post on here and review Part 2 for us!

Hope you feel better soon, too!