I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Des on March 28, 2010, 08:55:40 AM
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I bought myself some Emla cream. (very very small tube and very expensive) and I am ready (I hope) What was the first time like for you?
Is it really that painfull. The lady at the centre said some people scream when they get needled?
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Oh Des, I will for sure be thinking about you tomorrow and hoping that things go as smoothly as possible. I was 26 years old the first time and dialyzed through a subclavian catheter for the first two months or so. People where I was were not screaming, the nurses were lovely and I felt cared for and cared about. When the time came for the needles since my fistula had matured I was nervous but had watched it being done to others, no one was using cream or anything to numb it, and I focused on being calm, breathing deeply to distract myself and I watched, trying to mentally distance myself from my own arm and see it as someone else's. I had practised pinching myself, slowly, hard and deliberately and using that pain to breathe and think through as a "dry run". Everyone's experience is different and often that difference is one's mental approach and of course the state of one's fistula.
It will be an emotional and difficult day and my thoughts will be with you. I'll be perching on the back of your chair, talking to you, massaging your shoulders, or in spirit doing whatever you feel you need to get through over this particular hurdle and I hope that very soon the physical part will become somewhat routine.
PS...I very quickly decided that I was going to do my own needles and talking to nurses as they put them in, about what they were doing and feeling for etc. helped to distract me too....BUT that's nothing at all to do with tomorrow.
:grouphug; :cuddle; :grouphug;
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I was trying so hard to just sound "whatever" about it but you know me better. I am an emotional wreck. The minute I read your post I started to cry. Thanks, I will "feel" you there massaging away over my shoulder. Thanks
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It may hurt for a minute, but then you don't feel any pain. I hope it goes well for you Des. Let us know.
Best wishes.......... :cheer:
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Jenna always had lidocaine shots, but she said those also stung at first. Another friend of mine started dialysis on Friday, after her 19 year old transplant has given out. She said she was tired afterward but it felt good to get the fluid off (her ankles were swelling.) Good luck Des. We will be thinking of you.
:cuddle;
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The unknown is always scary. Most of the time, I didn't think the needle sticks were much different from getting blood drawn. Granted, the needles are bigger, but they are just as sharp. Once in a while, I was unlucky enough to have them hit a nerve - and that will make you yell, indeed! Hopefully, it will be a very rare occurrence for you like it was for me.
Hang in there - the first month is the toughest, and then it should get much easier as you get into a routine.
:grouphug;
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Oh Des , i will be thinking of you. I have a line in my neck at the moment so dont go through all that yet! I would take whatever pain relief i could to start with, as you will find the Hemo itself enough to deal with. Once you get used to that , then take the step of facing the needles on their own. Even if you feel ok after hemo tomorrow , do one thing ..REST when you get home. I made the mistake in the begining of thinking i felt fine , went to do some stuff when i got home and it floored me! Now i make a point of sitting quiet for an hour when i get home ..thats after ive seen to the dogs , made a cuppa , had a smoke and answered my messages on the phone and looked through my mail ! :rofl;
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Des, I will be very interested to hear how tomorrow goes because in a few weeks' time, I will be exactly where you are now. So if you feel like it, please do come back and tell us all about your first day. I often marvel how everyone here seems to be so sanguine about it all, and I very much hope that one day, it will be you and I who will be old hands at this and will be telling other newbies that all will be well. I think that you perceive that tomorrow will be the first day of a very new and different reality, and that can be emotionally fraught. It really will be the first step taken down a long road. We will be glad to massage your feet along the way.
I hope everything goes well for you tomorrow, but if it does not, just remember that this is all new and that things will get better. It's a process, I guess. I will be thinking of you tomorrow. You will not by any means be alone.
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Wishing you all the very best, Des....
Hope everything goes well for you!.... :cuddle;
Darth....
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Des, I was feeling the same as you 4 months ago. Then I found the procedure wasn't much worry at all. I always watch the needles go in. Good luck, mate. You'll be OK. Let us know how you go.
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Des, best of luck tomorrow (oh wait, it's already the 29th here :rofl;).
Yes, some people do scream (I've heard some blood curdling cries?!!) but let's be honest - i reckon 90% of people have no problem. Our unit usually offers a local shot for the first time,but try to wean people off that ASAP (too many locals in the fistula can be bad they say). I used local my first time, then didn't bother after that. Sometimes the needles sting a bit going in(like any injection) and sometimes they don't - the fistula toughens up after it's used a bit and sometimes all you feel is pressure as the needle goes in. The actual dialysis process itself doesn't feel like anything. The most you'll probably feel is ***BOREDOM*** - so be prepared with distractions and entertainment!
Anyway best of luck!!! I agree it's what you don't know about (just being there, the procedure, the other patients, the machines alarming, etc) that can be scary. Soon you'll be an old pro and wonder what all the fuss was about :)
:grouphug; :grouphug; :grouphug; :grouphug;
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You'll do fine, after a while, I dropped the cream which went well accept on when they would hit a knerve, and boy you'll know it. You said you had to buy the cream? Won't your insurance cover it? Mine did.
Troy
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Keep us posted, Des. I'll be in your shoes in the next couple of months.
I and seven other patients had a familiarization session on hemodialysis. They passed needles round so everyone could have a look at them. One bloke fainted when he saw them. Another collapsed a little later.
I watch the phlebotomist's needle; I find it better than looking away. One phlebotomist said "Hey, you're watching. Hardly anyone watches". But I'm with galvo on this. I shall watch.
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The 29th is here.
Just wanted to pop in before work and say :thanks, for being here for me.
:flower;
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hope it all went well for you Des. :cuddle;
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We are watchers, Stoday.
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Des I will be thinking about you to-day, I hope all goes well.
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Best of luck today Des :cuddle;
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I'm still with ya Des. :cuddle; :cuddle;.....where's a massage icon when a girl needs one????
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Well, it was a total fiasco!!!! :banghead;
after NINE tries they decided to send me home with no dialysis. YES NINE TRIES. They were digging and digging. :Kit n Stik;
When they actually did find a nice "throbbing" place to insert the needle I clotted up before they could connect it to anything.
Now, I have to go for x-rays and double my "blood thinning medication". We will try again next week Monday.
So I was sent home with an ice-pack on my swolen arm.... oh did I forget to mention "infiltration" took place as well.
I think what could go wrong did, so it should be plane sailing from here onwards...... ??? ???
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CRAP! Des, how ^%#@&% awful. Please get some rest and keep the ice pack on but not too cold. I'm sooo sorry! :grouphug; :grouphug; :grouphug;
:banghead; :banghead; :banghead;
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Well thats not a good start! The only up side to it ..if there is one? is that you escaped the dreaded chair for 4 hours!
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AAARRRGGHHH!! :stressed;
Oh Des, that's horrible. After that happened with Jenna I told them if they cannot get her on in 1 or 2 attempts to have the most skilled nurse try, but maybe that's what they did. Poor girl, sending you hugs. :cuddle; :cuddle; :cuddle;
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I'm speechless, which is an unusual state for me. Did they give you any explanation for why it was such a nightmare? I mean, really, could anyone have written a worse script? Did you leave anything out? Did they miss your arm completely or anything? Did they use knitting needles or something? I mean, what the hell were they playing at? I hope you left that clinic with every last one of them begging for your forgiveness. I am so very sorry this happened to you; don't they know they are dealing with someone who is already suffering and is already ill?
I'm just really angry on your behalf. So much for you having a good story to tell some future newbie! Let us know what the x-rays tell you. I don't really know what you mean by bloodthinning meds...do you have to take something before you start dialysis? Sorry...I haven't started D yet so I don't know about such things.
When you feel like it, post again asap and let us all know how you are getting on.
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Bloody horrible!!!! Next Monday must be better.
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Are you squeezing a ball to exercise your fistula. If you squeeze a ball it helps it get bigger so they can't miss.
I'm so sorry. Best of luck.
:grouphug;
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:grouphug;
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Oh, WOW, Des, what a first day. So sorry to hear that. :cuddle;
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Des that sounds awful, Its bad enough thinking about having to go for hemo but to have all this sh** happen, I don't know what to say. I hope it goes better on Monday, they will get it right eventually. Thinking of you. :banghead; :banghead; :banghead; :banghead;
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some good news. I went for a sonar today to see what is cooking and my fistula is still cool.
:cheer: no surgery needed
The radiologist said that when the first "infiltration" took place the swelling blocked off the strong bloodflow to the rest of the fistula. He saw a lot of damaged tissue ( I could have told him that! I was purple and blue) So even if they could get into it the "flow" would not have been strong enough for the machine and the alarms would go off the whole time.
So next week monday (easter Monday) we will do the whole thing again.
Oh and emla cream helps for about 5 min.
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That's good news at least Des. The fistula can be very delicate and sensitive to infiltration especially at first and the bruising looks even more drastic since heparin is involved too. I'm very white, well a very pale pinky beige but you know what I mean, and my arm looked a real mess at times.
Sending you a huge cyber bear hug but not squeezing anywhere near you poor arm. :cuddle;
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Well, we will take what little good news we can get!
I'm not sure there is any kind of cream that would completely protect you from what you went through yesterday.
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Well Des it happened to me at first too.... a couple of times....after a month or so it becomes easier..... I would use the lidocain shot.... this really helps with the pain...... after a while it will become less painfull..... I just use elma cream now but I self cannulate and g some times I dont even use the cream...... I hope things go better next week...... Baby fistulas are such a pain .....mine was for a month.......
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I'm sorry, but nine times is outrageous. I don't know any more about your clinic, but that sends up a huge warning flag that your staff is full of morons.
It should never, ever, never, ever take nine sticks. No one should have to suffer that much. Especially when you're first starting. I did have some bleeding under the skin which was painful, but once it fully healed it became an easy stick for everyone.
If this continues, please do yourself a favor and ask to speak to the clinic manager about your situation and how to improve it.
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Sounds like the morons at my clinick, I lost my graft, mostly do to them.
Troy
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I too cannot believe they even let the "sticking" get past 3-5x before they quit.
I assume you are healthy enough to wait another week to dialyze and you are feeling good right now.
You have found the best place in the world to be for support and comiseration!!! I hope you are getting along fine and I am looking forward to hearing good news next week!!
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9 times is insane. That sucks :(
We had a new girl start the other week and she clotted up right away also. Luckily for her they just pulled all the lines, set up again, gave some more warfrin and she was OK and had a normal first session.
I'm glad your fistula, in the main, is OK after that horrid start.
Best wishes for next Monday to be much better !!! :grouphug; :grouphug; :grouphug; :grouphug;
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thanks all. I can't wait to start dialysis!!!!! :sarcasm;
Thanks for being there. :flower;
I just love dialysis. :sarcasm;
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Uh, no...it's not "I Just Love Dialysis". It's "I Hate Dialysis". Get it right, girl! :rofl; :rofl;
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I had my very first dialysis the 5th April 2010 at 16h10.
Yes, after only 3 (not 9) tries both needles were in. Just a few minutes into it I told the nurse that I don't feel so good. :puke; She then said... : "breath it will be better soon"
and just like that I was OUT. Yes, my bloodpressure crashed to 30/50. I woke up with my feet in the air and an oxygen mask on. They were talking about ICU amongst themselves and that woke me up completely.(because I ain't going back there again!) I had the ICU doc and a few nurses surrounding me. They were all VERY happy to see me. (so was I) Luckily no ICU for me as my bloodpressure recovered.
The rest of my 3 hours went quick as I just slept through most of it, recovering from my little "episode"
So..... I will be going back for more of that fun tomorrow..... :cheer: :beer1;
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OK, enough of the dramatics! It's time for you to get reaaaaaallllllllyyyyyyy bored at dialysis. No little side trips to ICU, OK? We're all hoping for less newsworthy posts from you tomorrow....
We're all thinking of you!
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Des, I hope you aren't on any BP meds???? As soon as I started D I had to come off all of mine...4 or 5 in total. People who need to continue with BP meds shouild be sure NOT to take them before a session.
I'm with MM on this too....enough excitement. Boredom is so good when it's D we're discussing.
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that nurse should learn to listen. when a dialysis patient says "i don't feel good" they usually mean it. i hope everything goes better next time.
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Des, How are things going?
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Des...how's it going? Better? I've been thinking of you and sending postive vibes your way.... :grouphug;
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My first week has gone by.... many to come. It was quite dramatic but I can now give you guys some info.
They are not taking any fluid off for now. I am using 17gauge needles and a very low pump speed. Oh, and they are only doing 3 hour sessions of HDF not HD????
They doubled my ecotrin.... and they will be adding some iron and potassium next Monday.
They are still "complaining" that they would rather canulate someone else as nothing goes smoothly with me. So I think they draw straws in the tea room to see "who is going to get me" because everytime so far I have had another nurse. My blood pressure seems to be up and then drops suddenly without warning.... no-one seems to know why.
I haven't fainted again - so that is some good news. The arm hurts today.
Thanks for being there/here for me.... :grouphug;
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Thanks for this update Des. I'm glad they're going slow to give your body (and your mind) as well as your fistula a chance to adjust to all that dialysis entails. I do wish they'd stop complaining about your arm though...not like you chose to have a tricky vein. I'm also wondering why they keep giving you a different person each time since I would think that you need the BEST cannulator present in the building and someone consistent could learn the tricks of your arm and then others could try as the vessel enlarges and toughens up. Oh well...the mysteries of dialysis units.
Are you taking any BP meds? And if you are, try not taking them before your session as that can drop it suddenly even though they're not taking off fluid.
:grouphug;
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and....
the centre is quite nice.
Each "chair" has its own tv (5 channels) own remote and own earphones. Midway through I get a sandwidch and tea. The bed has a remote and can "bend" in the middle.Heads up or feet up. Very comfortable. I get covered with a warm blankey and viola! all in all not too bad.
Not a lot of chit-chat going on as everyone either sleeps or watches tv. So I don't need to listen or talk. Cool.!
I arrive at 16h30 and only miss half an hour of work. I leave at 9pm.
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Glad to hear you are doing ok Des.
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Well it has been just over 2 months of "fun" with dialysis.
I did one more visit to ICU with chest pains - not too serious though.
I am doing 4 hours of HD with a pumpspeed of 300 (I believe this is very good) I upgraded to 16gauge needles.(nearly the biggest) My bloodpressure is stable. Doc stopped all my bp meds.
I don't like all the staff at the unit, I get the impression that they are just doing enough not to get into trouble and nothing more. They do not "care" about us. Our unit are relatively clean and they do everything right (sort off)
I get an iron drip every Monday and EPO injections Mondays and Fridays. I take 2 potassium tablets a day (you heard right -bananas!)
I still dread it everytime I go there... I really would rather be somewhere else. So that is still a problem.
Oh.. and I have decided to attempt knitting. Yes, knitting with two straight arms.(I will take a pic hahahah) Well I will rest my arms on the table in front of me... I will let you know how that goes. Keeping in mind that I NEVER knit.
I will keep you posted.
Lovies
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I am glad that things have kind of stabilized for you. They tend to after a while. I did some knitting on dialysis some years back - a fancy toilet tissue cover! I must think about doing some more knitting. Keep on keeping on and keep us posted. :cuddle;
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For me, it's no big deal at all.
In fact, sometimes I'll forget to put the EMLA cream on--but even without it, the pain is no big deal. It's a momentary sharp twinge that lasts a second or two, and that's it.
For any type of pain, meditation can help put your mind in a different place. I've used it effectively even for surgeries where I was sedated but awake, and the pain broke through the inadequate anesthesia I had been given.
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I think it's a great idea to knit! It's great that your body is responding well, so now you have to work on getting your mind to cooperate. Four hours is a long time to sit there doing nothing, so if you can find something productive to do, then you will be well ahead of the game. I know myself well enough to know that I would spend the whole time blubbing and whining, and then I'd get utterly bored with myself, and only THEN would I find something interesting to do to occupy my time. I joined the library in anticipation of having plenty of time to read. Maybe you could knit a vuvuzela....
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Knitting worked ok for a while but the arm with the fistula can not be bent too much so I got a cramp.... but I knit for the first hour or so.
I am really battling being away from the family.... we do alot of nice things together in the evenings and now WE don't but they still do it without me. :(
I missed out on the action netbal final that my daughter played on Monday night. :( They got gold medals and I wasn't there :( I missed out on her "flipping" her first pancake. and lots of other good stuff..... I feel left out.
They are now bonding with hubby and I am jealous!
I cried during dialysis last night....... This is really a raw deal.
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That's horrible. I feel for you. This disease takes so much away from us and it is really cruel. I'm sending you a hug ( one of many) and my thoughts are with you.
carla
xx
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Thanks a mil for the hug.... I just wish this transplant thing would happen soon.
That is the only thing "forcing" me to go. I am scared that my hope on a transplant will never be realised and what then?
aaaah crap.... crying again.
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Listen, I think this feeling of missing out on family stuff because of D is a very serious matter and really needs to be addressed. The emotional impact of chronic illness is so overlooked, and NOW is the time to figure this out.
I have a suggestion. First, speak to your husband about this. Enlist his help. While I think it can be a really good thing for your DH to have the chance to bond with the kids (so many dads either are too tired or don't have the time or don't have the inclination), I think it might be a good idea for you and him to create some sort of special post D activity for all of you, something that is reserved ONLY for ALL of you. When you get home from D, what do you usually do? Do you usually have some free family time in which you can do something special? Even if it is only, say, making TV snacks and watching a show together? Or if you go to bed, maybe a mom's bedtime story? Regarding your daughter's gold medal, perhaps they could re-enact the award ceremony for you! That would be a laugh! I know that you will still miss family stuff, and it sucks, but I also KNOW that with some creativity, the family can adapt and can do special things for you with a view to make you feel included.
And I understand the fear that transplantation may never happen. I feel the same fear and also ask, "what then?"
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Thanks for the nice reply, I will try to use the other nights and to do some fun stuff... as I get home only at 21h45 at night - they are mostly asleep already by then. But on the off D nights I have to catch up on cooking for the next two nights or do some mending or working on schoolprojects.
Time is something you can never get back, and I am "wasting" lots of it to gain some at the end .... ")
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Our unit is going over from HD to HDF machines soon. I have had only bad stuff happening on HDF so I discussed this with my doc and I am very happy to say I don't have to go over to HDF as my potassium is low - this HDF is too efficient and removes lots more than normal HD so it leaves me with very little potassium and my heart goes into a wacky rythm.
Yeah!
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I have never heard of HD and HDF machines. CAn someone explain them to me. How do I know which kind my unit is using?
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Can you find a nocturnal unit. That way you could do it at night. I have my evenings at home until 6:45 or 7pm then do dialysis 7:30 to 3:30. You might find later times wherever you live.
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I have never heard of HD and HDF machines. CAn someone explain them to me. How do I know which kind my unit is using?
I can try to take pictures of it for you.... you must ask your unit's manager.
I think Okarol can get us some info.
I believe it is 40% better and it is the absolute bomb! but it takes out more good stuff too. (in my case too much potassium is taken out)