my time next week

[boswife]

     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? ... 

[RichardMEL]

This is really encouraging BG  that hopefuily things are settling down for you!! 

[bluesgirl]

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...


 

    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? ...

[bluesgirl]

another day of D yesterday. I had the morning shift, as usual 
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 . 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  , 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  only got 38.3 though, so it was managable and I slept though it.

[MooseMom]

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!

[bluesgirl]

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".

[boswife]

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!!   

[MooseMom]

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.

[bluesgirl]

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? 
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?

[bluesgirl]

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...

[bluesgirl]

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  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.
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  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...

[okarol]

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. 

[MooseMom]

Isn't it frustrating to have to do everyone's thinking for them?

[bluesgirl]

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. 

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.

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.

[silverhead]

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.......

[MooseMom]

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.

[bluesgirl]

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.

[bluesgirl]

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  seriously, I feel like their making me feel worse with these morning hours, and they're not listening when I tell them!
Anyways, got hom and had a good day but then got a fever at 11 o'clock at night. 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.

[jbeany]

 

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.

[bluesgirl]

just woke up  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.  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...

[bluesgirl]

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.

[bluesgirl]

Up now. Of course as soon as I went to bed, I had a fever come on  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 

[lmunchkin]

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!     

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     

[bluesgirl]

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." 
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  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  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! 
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...

[jbeany]

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!