please help me im scared

[gothiclovemonkey]

my husband and i start home hemo training in july. i absolutely cannot wait!
Yesterday was hell. They had trouble sticking me, after 4 sticks in the new graft, they went to the old fistula. at that point i was already pretty emotional (partly because there has been a screw up over my meds and i havent had my antidepressant in nearly a week...) then I get a horrible cramp.
Let me rewind a lil bit... a few weeks ago, the dr was in, and we agreed that I could get my blood back to stand, if my cramps get too bad (i cramp, and it isnt dialysis related sometimes, so giving fluids does nothing... only walking them out helps, and my center doesnt allow anyone to stand while on the machine) Apparently NO ONE got the memo, and they didnt believe me, and argued with me while im in pain- i wont deny that i can get fairly upset when im being accused of lying, so they finally call the manager, who informed them that I am telling the truth, finally giving blood back so i can walk around.... at that point i am in a panic attack and cant stop crying (again, mostly probably due to the lack of meds... but i was upset) So i opted to just say screw it and sign ama and go home. I have been told I am disruptive to others when i cramp, because i start crying (it frickin hurts! i cant help that!!!) and id rather not disrupt everyone. Of course this means i have more fluid than i should, so i have to be super careful. boo

I know I am young, but i am NOT a liar, so it really irks me that they question me like that. Especially when im in pain... and i can tell them til im blue in the face that the cramping isnt from the fluid remova, they STILL try to pump me full of fluids when i cramp and shut UF off... THen when im still cramping after that, they continually say, "You shouldnt be hurting, we shut ur UF off and gave you fluid." *rolls eyes* I feel like screaming at them with some choice words. Ive been back here since OCT and still have this issue. Of course, the last time i talked to the doc he acctually laughed at me. When I told him AGAIN that these cramps just wont stop til i get up and walk them out, and i really really do not think they have anything to do with D, he laughed at me. Thankfully he and the manager did agree to allowing me one "get off" per treatment, if needed, but ask that I try very hard not to. WHich i havent since we talked about it nearly a month ago. DEAL! Ive cramped but managed to stay calm through the rest of the treatment (typically happens when i am about to come off anyway, so i just wait it out if its not too bad) I just cant seem to sit for that long without cramping. Happens at home too (even since before i started D 7 years ago, part of the reason im pretty sure it isnt D causing them)
The reason this time though, i believe has a lot to do with how hard i pushed myself this week to get some things done, so my body is angry lol Seems when I do more physically, i get more cramps and restlessness,  i was only about half way thru my treatment when the cramp hit, and it wasnt a small one i could just ignore, it was a screaming-crying-omg-im-dying type of cramp. the kind that they would call me disruptive for...
I dont try to be loud and cry when it happens, but how can i help that?!? when I hurt I make noise, its soothing for me. I tend to do a low hum if its not horrible, but if its bad i get louder ( i guess inmy mind i think that helps? and it does keep me from screaming loudly lol)

On top of that, because i exerted myself this week, im in a ton of pain with my RA, im still not used to having it, i dont know what my limits are, but im fairly certain ive surpassed them days ago, and still have a big day today... i feel like my toes and fingers are broken into a thousand peices... but 'ya gotta do what ya gotta do' right?

[PrimeTimer]

GLM, I believe you!! I reallly do!! I have a condition that causes pain/stiffness and get cramps all the time and I'm not even on dialysis! My husband is the one on dialysis and altho he doesn't normally cramp up during dialysis, he does get leg cramps at other times. He gets them in his calves and on the inside of his upper thighs. One thing his center taught him (when he was doing incenter) was to drink tonic water that has quinine in it. In fact, they keep it handy for patients who get cramps. We get the one made by Canada Dry. It tastes horrible but I have to admit, it works very very fast for cramps. Faster than water and even faster than walking the cramping off. If you haven't already, hopefully you can give it a try. Tastes nasty but not as bad if you chill it in the fridge. By the way, before I used the tonic water trick, I had to walk off cramps in my legs or "stomp" or "jiggle" my legs to work off the cramps. I'm sure it would look hillarious to people but gosh darn, I don't care, gotta do whatcha gotta do!

I absolutely hate to hear about people having pain and no one helping them with it. If walking off the cramps helps you, then that is what you need to do and they shouldn't argue. Of course, they are concerned about you getting a full dialysis treatment so that you don't end up keeping too much fluid onboard but hey, when a person is in agonizing pain and knows what helps, they should trust that we know our own bodies and let us deal with it in whatever ways we know works. I am so sorry you go thru all this with them over and over again. That reallly burns me up that you are dealing with a staff that doesn't listen to you because if they did, maybe they'd learn something that could help you and other patients too. Oh, believe me...been there, done that and I hate it when people don't listen, especially medical staff. We cannot all be lumped into one category, everybody is different and some more than others! By the way, I understand about your "humming" through the pain, they should empathize with you on the fact that YOU are just trying to work through the pain! Whatever breathing or techniques work for you to get through pain is what you should do and they should be empathizing with you on it. They should just be glad that you are trying to help yourself.


Good luck on your training for home hemo! It might be exactly what you need! That is what my husband and I do (I am his care partner). We use the NxStage System One Cycler and the Pureflow machine to make his batches of dialysate. I will be honest tho, it is a lot of work (setup, clean up, supplies inventory and maintaining an area of your home that will never again look or be quite normal and more like a medical clinic). BUT....the beauty of it is that you get to be with your family and can do it whatever time of day/nite you want to do it, just so long as you do it as often as the doctor tells you to and stick to the treatment plan. I'm the one who does the setup/cleanup and takes care of ordering supplies, etc for my husband. For me, especially since I'm 50 and have a form of arthritis and do all the regular household chores/cleaning, it is hard on me. So, I have to pace myself and go slow and start setting things up early every day. Some days I hate it, sucks the life out of me and I feel burnt out but on the otherhand, at least I know that here at home he is getting looked after every single minute, I stay right by his side and I'm here to make him comfortable during his treatments with anything he needs...big soft oven mitt for a hand warmer, heated rice bags for his neck or arm or legs, remote for the TV or we listen to music and just talk and I also like that he's not having to be around the germs of dozens of other people at a center, etc...We are in the privacy of our own home (small apartment) and not having to rely or waiting to get the attention of a staff member to get help. What I've read from your posts tho, my concern would be how your son would handle having his mommy on a machine at home and...the risk that he may get curious and want to start touching buttons on the machine or touching things and possibly contaminating them or pulling or touching your blood lines during treatment, which could be dangerous to both you and him. Would it scare him? And what about your husband...would he have the time AND energy to help you setup/cleanup and be your care partner during treatment because in all honesty, if he's already tired, home hemo will tire him out even more. NOW, with that being said, I just wanted to be upfront and blunt...doing home hemo is not a walk in the park HOWEVER, depending on your abilities and willingness to commit to taking it on, home hemo will probably be healthier for you and you will end up feeling better and probably getting better labs AND...you will have a peace of mind just from the fact that you won't be dealing with uncaring medical staff anymore like you have been. The first several months are the hardest but...YOU will get to be in-charge of your own treatments! No more waiting for a tech or nurse to come help you, your care partner (hubby) will be there and ha, I suppose you could make demands and boss him around all you want during treatment (joke) "honey get me this, honey get me that" haha... So it might definitely be worth a try and besides, if you don't like it or it doesn't work out, you can always go back to the center. Just be prepared that there is a lot to learn, a lot to do, it will be scary at first but you will never be alone because the NxStage company has a 24/7 number just for people to call if you have problems during treatment -they will actually walk you thru an alarm or problem while you are on the phone, they are some great people!

Long post, I know but...good luck! So sorry you have been put thru hedoubleL but I notice that you are a "go-getter" and being proactive in your own care and should be applauded! It's good to be fiesty but of course they say you catch more bees with honey...or however that saying goes. So sometimes we just have to suck it up and go with it. Hopefully tho doing home hemo will be worth it for you and the end of your nitemares with that staff!   

Best of luck, PT

[gothiclovemonkey]

The problem with that more bees with honey is, bees have stingers... i think ive given them 'honey' for too long, time to bring MY stinger. Typically I try not to bother them or anything if i can get away with it, but those cramps can be killer...

I am nervous about home hemo, ive done PD but i still imagine its going to be harder... i figure ill know as we are training, if we can do this or not.

ive heard about the quinine, havent tried it yet, is it safe for us?

[PrimeTimer]

The quinine in the tonic water must be safe for dialysis patients because my husband learned about it at a center but of course, I don't want to be naiive and assume it's okay for everyone. I suppose like anything else we've got to ask the Nephrologist but my husband is a diabetic on dialysis and it hasn't affected him negatively. My concern would be if it's okay to take with any of the meds you are on...might want to ask your Neph for that reason. Whenever I have needed some, I only pour a small amount, not even a cup's worth, into a glass and drink it slowly (mostly because it tastes so nasty) but I'm also afraid it may make me barf. But...I've discovered that I only need a small amount anyway for it to get rid of my leg cramps, so that's good!

I imagine tonic water is used to mix alcoholic drinks. I don't know but when I was younger and could still drink, I sure as heck didn't use tonic water. That would have been too "uptown" for me and my pals. I guess the booze would kill the bad taste but I'm too tired nowadays to even think of having a drink (I know one drink would put me to sleep or make me barf) and my husband (having ESRD) certainly can't drink! Heck, just a glass of water is a "celebration" for him now! 

And yes, yes, YES! When you sting, remind them that you first tried "nice" and "nice" didn't work. Just don't get yourself kicked out. Hopefully home hemo will work out for you.

[DeadAlive]

Im very surprised they havn't tried treating your cramps with quinnine!!! .... idiots! Surelly it should of been tried by now in your case.

In the UK its one of the first medications they give dialysis patient who suffer from cramps.

Personally i only tend to suffer cramps when my base weight (dry weight) is a little low .... this dehydrating me somewhat during treatment.

I used to get lots of cramp all the time, this was before i started dialysis and early stages of dialysis ...... training in the gym was responsible. i was ok training untill i stated losing kidney function, then the cramps started. I had to stop training in the gym to stop my cramps


At the start of my haemodialysis there was so much trouble with nurses needling my fistula, they were doing so many failed attempts, making a right mess of my arm and making the whole experience rather horrific for me. i suffer anxiety and panic issues .... people hacking at my arm with massive needles and not getting anywhere was too much to deal with.

After 6 months of nurses causing me stress and discomfort i decided to take things into my own hands ...... i told the nurses i believe i could do better myself and i dont want them to needle me anymore. I started needling myself at this point ..... i have now needled myself 3 times a week for about 9 and a half years, in total i have only ever had around 6 or 7 failed attempts!!! ...... the nurses were having 6 or7 failed attempt over a couple of sessions when they were needling me.

Best advise i can give you for haemo is start needling yourself ..... even in hospital on the dialsysis unit. Let the nurses do everything as they do apart from needle you ... do that yourself.

Its scarey at first needling yourself but once you have done it .... your dialysis experience becomes easier, less stressfull, less painfull and more comfortable.

[Budluv]

That's shitty the way you are treated at your dialysis.. Something you need to remember is that at your dialysis the highest trained person is the nurse. Everyone else is just a regular person. Techs, dietician's, social workers, they don't know shit.
You know more about your body than anyone else there.. Don't be afraid to tell them to shut the hell up or to piss off. You have the final say on everything. And if your Doctor doesn't want to listen to you tell them to their face that they don't listen and you can easily replace them if they don't take you more seriously. All of those people are paid by your insurance company to render a service. If the service isn't up to your standards take your business elsewhere.  It's your body and nothing happens unless you give the go ahead. and sometimes people refuse to listen so you have to get frank (shitty and in your face) to get your message across. 

This just happen to me.. I was having a high potassium for a few weeks.. My doctor told the nurse to tell me to make an appointment to have a fistulagram. They said that I'm "probably" not getting good dialysis. Here's the thing. they only drew blood pre-dialysis.. I told the nurse to draw a pre and post too see if dialysis was working and I was just over doing it at home.  Pre was 7.1 post was 3.4..  My Doctor got her ass reemed by me for being lazy and not thinking to do a pre and post, before suggesting that I go to the hospital to be cut. 

You're the boss... take charge and let those people know that they work for you, and if they can't listen you don't need them.

[plugger]

I would be careful coming on with too much attitude, when push comes to shove,  staff and these dialysis companies can usually push back much harder.  In a lot of these cases it might be best to find an advocate who can do your heavy lifting while you play the wonderful, compliant patient - a relative, a minister, or other.  I was my daughter's advocate years ago when I became upset about reuse, lack of use of crit-lines, no home dialysis option, and her short treatments.  But I found I also needed someone to back me up - found that with Arlene Tinker and friends from Dialysis Advocates so many years ago.  Larry Hall is one person who I've talked to over the years, said after finding DA he was able to sit back and smile at staff who tried to bait him and get him to blow his top.

[gothiclovemonkey]

my clinic has reuse (ew!) they get on me about my filter being so clotty....

im pretty fed up with everything right now, but still pushin on.

[kristina]

Hello gothic,
I am very sorry for what you have to go through
and I do hope your dialysis-routines get better soon...
Best wishes from Kristina.

[Michael Murphy]

Let me get this straight the morons that run your dialysis clinic think you have control over the clotting of your blood.  Where did they hire these people from Ringling Brothers Clown College.

[plugger]

You don't have to accept reuse!  I provided some very reliable sources concerning reuse (see below), but if you have more questions about this or things such as clotting filters and cramps, feel free to contact Dialysis_Advocates!  After more than a decade of doing this, DA is knowledgeable and has been the only help so many patients have found.

Reuse, parts A and B
http://www.dialysisethics2.org/forum/index.php?board=4.0


Problems DA can help with (and links to contacting):
http://dialysisadvocates.com/assistance/

[gothiclovemonkey]

they claim that when its all clotty it means ive eatten bad foods, like fast food or something... (and yes occasionally i am guilty of that lol)
this clinic isnt exactly.... a good one. i actually had started d here, and ended up quitting, iy totally gave up, thinking i cant live if its like this forever, no way. ended up in a hosptial and the clinic who did it there was sooo much better, so i moved lol but i ended up back at this crap hole last year. new building mostly new staff and its still a crap hole. maybe even worse.... ya know what they say, you can polish a turd, its still a turd.
thanks you for the info plugger

[Michael Murphy]

The more I read about your clinic the more moronic they seem.  I googled fast food effect on clotting and found nothing.  I think when Bozo retired from his TV show he must have gotten a job at your dialysis clinic.  If you are clotting your filter tell them to not reuse your filter.  They have more control with the Heparin then you have with a fast food lunch.  If your blood work is ok ignore the morons oh wait  to call your center staff morons would be a insult to morons around the world. I just asked the nurse here at my clinic and she said if you over indulged whit thing like spinach but that isn't a fast food. 

[obsidianom]

they claim that when its all clotty it means ive eatten bad foods, like fast food or something... (and yes occasionally i am guilty of that lol)
this clinic isnt exactly.... a good one. i actually had started d here, and ended up quitting, iy totally gave up, thinking i cant live if its like this forever, no way. ended up in a hosptial and the clinic who did it there was sooo much better, so i moved lol but i ended up back at this crap hole last year. new building mostly new staff and its still a crap hole. maybe even worse.... ya know what they say, you can polish a turd, its still a turd.
thanks you for the info plugger

I thought you were going to do dialysis at home???   You really need to. It is a far better world and you have control.

[Michael Murphy]

On the way out of my clinic this morning I stopped and asked the dietician, head nurse and doctor about fast foods causing clotting.  Basically tey all laughed and said it was the dumbest thing they had heard in a long while.  I would check with my doctor about any thing these people tell you,  they seem to be living in a othe world.

[iolaire]

I would check with my doctor about any thing these people tell you,  they seem to be living in a othe world.

Also maybe ask them nicely for some pamphlet on the subject so you can educate yourself on what fast food to avoid ;-)  This would be especially helpful if your nephrologist is spouting that type of information.

[gothiclovemonkey]

Reguarding home dialysis they told me id start train in July, then i had issues with the fistula and they wouldnt train me while i had the cath, but thats was taken out like really fast, i asked again they said someone was training, i asked last week and they said oh theres still two people ahead of you. (i think they forgot and just put me after the people who asked after me...)

ive been to three other clinics, and all three were much much better than this hole!!!! i dont get it. how they can be soooooo much worse.
i kid you not, i have to tell them every single time tat id prefer ONE peice of tape per needle removed, and every single time they try to put more, which i understnad most people want more, but some of them argue with me and refuse to only use one strip....
i have to constantly try to explain, mid cramp, that this cramp is most likely not dialysis related, but they stop my UF and give me fluid anyway...
when all that crap went down last year, we had a meeting, the neph, myself and the manager.... we agreed on two things, one that if i cramp they would give my blood back and let me stand. (they dont) and that id meet with doc off the machine rather than while im on it, that happened ONE TIME.

i do truly believe that if i die, its going to be because of them. i dont trust anyone there at all. they actually ignore me now days, seems most treatments are poor... either cramps or bp dropping low, so i call out for them, they just completely ignore me. no words, no acknowledgement at all!!! they say "we dont know what to do for you" often times asking if i want to come off, because im being sooo disruptive to others. (thanks, make me feel worse about an already crappy situation, guys)
i have another issue going on right now where my body is moving uncontrollably, some days they dont want to stick me, fear ill infultrate, but then they get bitchy with me when i have the same concern. that makes sense.
they are also very condesending. ive been on d for over 7 years, and when my labs arent great, they act like im brand new to this. I know the consequenses of eating stuff i shouldnt. they just get angry because they actually tell us when labs will be so they look good on paper. none of the other clinics ever did that. My issue with this is, when i try to be good with what i eat, and drink, i tend to do a really horrible job, if i dont try i do well... i have no idea why this is, but it is. its always been this way. if i try not to drink much, i end up with a ton of fluid on. it makes no sense, but i think its because im thinking about it, makes me want it more, or something like that?


its so frustrating. idk how long it takes to train for home hemo, but im assuming at least a month or longer, so i hope that by spring ill be training.

[gothiclovemonkey]

oh and as far as the fast food, yea occasionally we do, but typically i do cook at home.... now occasionally that includes convience meals, simply because they are super cheap and easy to fix and quick. as im sure most of us do, have a limited budget.
if i had my way, id eat mostly salads and raw veggies. thats my favorite foods. i have food issu es, textures are my enemy. a lot of meats gross me out. i eat them, and sometimes i love the way they taste, but almost always i will be enjopying some form of meat, and the texture will change, there will be a peice of grissle or a vein and then i cant finish. i know im weird.
im a weird fat person, i dont care for sweets at all (except the one kind we arent supposed to have, chocolate on occation, melty creamy goodness) and idk if anyone has noticed our diet is mostly meat and sweets. the two least favorite ugh
and most of the veggies and fruits i love are no-nos. so i find it hilarious that they are constantly assuming i eat out so much.
One time id mentioned how i could easily become addicted to some thai food, because we had went to a place that just opened up. so like, a few days later the dietician came out saying something about i need  to stop eating that because its very bad for me. i should limit it to once in a while, like maybe once a month... i said um ive only had it one time. she said, oh they told me  you were eating it a lot, and you were addicted to it.
(not the first time they have made assuptions and put words in my mouth.... they are like highschool b******. its rather distrubing.)

sometimes i feel like my son is more mature.... and thats really saying something

[plugger]

thanks you for the info plugger

You're welcome!  Worries me they are starting to ignore you.

[obsidianom]

Reguarding home dialysis they told me id start train in July, then i had issues with the fistula and they wouldnt train me while i had the cath, but thats was taken out like really fast, i asked again they said someone was training, i asked last week and they said oh theres still two people ahead of you. (i think they forgot and just put me after the people who asked after me...)

ive been to three other clinics, and all three were much much better than this hole!!!! i dont get it. how they can be soooooo much worse.
i kid you not, i have to tell them every single time tat id prefer ONE peice of tape per needle removed, and every single time they try to put more, which i understnad most people want more, but some of them argue with me and refuse to only use one strip....
i have to constantly try to explain, mid cramp, that this cramp is most likely not dialysis related, but they stop my UF and give me fluid anyway...
when all that crap went down last year, we had a meeting, the neph, myself and the manager.... we agreed on two things, one that if i cramp they would give my blood back and let me stand. (they dont) and that id meet with doc off the machine rather than while im on it, that happened ONE TIME.

i do truly believe that if i die, its going to be because of them. i dont trust anyone there at all. they actually ignore me now days, seems most treatments are poor... either cramps or bp dropping low, so i call out for them, they just completely ignore me. no words, no acknowledgement at all!!! they say "we dont know what to do for you" often times asking if i want to come off, because im being sooo disruptive to others. (thanks, make me feel worse about an already crappy situation, guys)
i have another issue going on right now where my body is moving uncontrollably, some days they dont want to stick me, fear ill infultrate, but then they get bitchy with me when i have the same concern. that makes sense.
they are also very condesending. ive been on d for over 7 years, and when my labs arent great, they act like im brand new to this. I know the consequenses of eating stuff i shouldnt. they just get angry because they actually tell us when labs will be so they look good on paper. none of the other clinics ever did that. My issue with this is, when i try to be good with what i eat, and drink, i tend to do a really horrible job, if i dont try i do well... i have no idea why this is, but it is. its always been this way. if i try not to drink much, i end up with a ton of fluid on. it makes no sense, but i think its because im thinking about it, makes me want it more, or something like that?


its so frustrating. idk how long it takes to train for home hemo, but im assuming at least a month or longer, so i hope that by spring ill be training.

Thts B. S. about the catheter. We started home hemo for 5 months with a catheter. Many people do it at home with a catheter. Those people are idiots!
You will feel SO much better at home as it is gentler easier diaslyisis and YOU have control of it.

[cassandra]

Hi Gothic, have you started needling yourself? If not, start doing little things like preparing your needles and stuff.

Stay string girl, love, Cas

[gothiclovemonkey]

i have not, and scare to do so haha my husband said hed be my needle poker
its at such an odd place i dont even know that i can. its nearly the back of my arm! and my hands arent being too kind right now, i cant grasp things to save my life.

[PrimeTimer]

Sorry they are putting you thru so much h-e-double heck! Wish you had an advocate that could actually be with you during your treatments so they could see for themselves what is going on. As for cramping, I drink the kind of tonic water with quinine in it. We get the cheapest we can find at the grocery store. I'm not on dialysis (my husband is and we do home-hemo) but when he was in-center, they would give him tonic water for cramping. Well, I tend to get awful leg cramps at night in my calves and the backs of my upper thighs (if I didn't drink enough water during the day). The only thing that use to help them was getting up out of bed and shaking my legs out or even smacking them (they get THAT bad). But, the tonic water works SUPER FAST, in under a minute. It tastes awful but I don't care anymore, it's worth the bad taste to get rid of leg cramps. If it's okay with your neph, maybe you could carry some with you and next time you cramp and they take you off, you could drink some down to get rid of the cramps faster. In either case, sure hope they start treating you like an individual instead of putting you and everyone else there into one box. If they need to spend a little more time dealing with your unique issues, then that is what they need to do! Lawdy! 

[graciekycats]

Hey goth girl!  Hope you are feeling a little bit better today!  I really feel for you and all the crap you have been going through.  Wish I had a magic wand to make the bad stuff to go away - but I lost that wand. Dang it!
I am keeping you in my prayers.  Hugs to you my dear!   YOU ARE A FIGHTER GIRL!!!

[cassandra]

                   


Love, Cas