my time next week

[RichardMEL]

oh we know she's sweet!!! That goes without saying!!

 

[boswife]

DAng your funny Richard Mel!!   and brilliant as well     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' 

[okarol]

  Hi Bluesgirl,
Hope you're feeling better.
 

[bluesgirl]

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 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

[okarol]

Sounds dreadful.
Is your arm still sore or swollen?
I am sorry it was so difficult.
Big HUGS for you. 

[bluesgirl]

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

Yaaay! I got on the list!!!
 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*....

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....

[bluesgirl]

Sounds dreadful.
Is your arm still sore or swollen?
I am sorry it was so difficult.
Big HUGS for you. 

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...

[okarol]

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.

[bluesgirl]

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 

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.

[kristina]

Hello, bluesgirl,

I do hope you have better luck on Thursday.

Best wishes and Lycka till  from Kristina. 

[woodsman]

My 4th session went well today without incident!!! it gets better...

[MooseMom]

Well, this is NOT what I was hoping to hear.   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.

[The Lady]

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!

[RichardMEL]

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.

 

[kamar55]

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....

[boswife]

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..   

[bluesgirl]

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.

 

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....
 
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.

[RichardMEL]

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.

[bluesgirl]

hi everyone! Today, I have officially had my first dialysis. 
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 ½ 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 ½ 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  ) 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.

[rsudock]

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

[RichardMEL]

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!

 

[MooseMom]

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.

[kitkatz]

Hurray for a good 1st treatment!  Keep going. Things get better.

[boswife]

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..   

[bluesgirl]

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 
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... )
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