today was one of the most unnerving dialysis' ever

[gothiclovemonkey]

OMG i was in dialysis HELL today!!!!!
Of course, they were running behind today, then my damn machine was acting up, and they were scaring the absolute life out of me (they kept manually pumping my blood, removing the tubing from the pump putting it back in, repeating. I could feel my lines getting cold-meaning i felt my blood getting cold, very cold! It was so scary, and they were annoyed when I woke up and had a panic...)

then the daarn machine just wouldnt work, so they decided to put me at a different machine, and totally forgot to check the temp on the machine, which was 35C (im used to 37C) So i was unbelieveably cold at that point, and uncomfortable. (also found out that having the temp that low causes some serious pain in my joints, i was bawling it hurt so bad)
im so tired.
I am having other medical issues arising, so im really nervous about all that. some seriously not good things (my brain MRI came back funky and so did my lymphoma blood test) ... and the wait it killing me. I am such a nervous wreck, even before D today, I have been shaking like crazy and i cant relax.

[nursey66]

Sorry you had to experience such a bad day. Dialysis is no fun on a good day, then to have all that frustration on top of it ! Not fair !

[DialysisGoneFOREVER]

That's why we all HATE dialysis! Those bioartificial kidneys or printed kidneys can't come here fast enough!!

[Lis]

 OMG, what an ordeal for you to go through. Sorry.

[cassandra]

I'm sorry you had to go through that honey. I hope you get your results back soon, and of course that they are way better than expected.

Strength, love and luck, Cas

[Simon Dog]

At some point, I would have asked the flush back my blood and start from scratch on a different machine.  I had one bad day when I was in center and a machine started acting up.  The RN finally gave up and I lost a setup of blood (about 350ml).  Any blood loss over 50ml is "reportable" at FMC.

[Charlie B53]

You all continue to amaze me with your strength.

While I am hardly one to keep my mouth shut, this is one of those rare times I am almost speechless.

And I can assure you, if it were I in that chair, in your situation, I WOULD be speechless.  Cause I would be unconscious!  Scared, shocked, Words could hardly express my state of mind.  I would simply fail to compute, and be stone cold OUT.

[gothiclovemonkey]

they were annoyed that i was panicking... they make that very clear.

[PatDowns]

Definition (psychological terms) - Enabler


1. Tacit Enabler - Supports another's bad habits by staying silent.

2. Overt Enabler - Supports another's bad habits by providing assistance such as money, transportation, approval, etc...

A person who supports another person's bad or dangerous habits.

Enablers tend to fear calling others on their destructive habits because these "others" tend to be friends, family or others close to the enabler.

Thus, rather than risk losing the love, respect, friendship or contact with the person, the enabler chooses instead to play it safe and watch the other slowly destroy themselves or others through their own actions.


Enabler (psychology) - one who enables another to persist in self-destructive behavior (as substance abuse) by providing excuses or by making it possible to avoid the consequences of such behavior.

[gothiclovemonkey]

Definition (psychological terms) - Enabler


1. Tacit Enabler - Supports another's bad habits by staying silent.

2. Overt Enabler - Supports another's bad habits by providing assistance such as money, transportation, approval, etc...

A person who supports another person's bad or dangerous habits.

Enablers tend to fear calling others on their destructive habits because these "others" tend to be friends, family or others close to the enabler.

Thus, rather than risk losing the love, respect, friendship or contact with the person, the enabler chooses instead to play it safe and watch the other slowly destroy themselves or others through their own actions.


Enabler (psychology) - one who enables another to persist in self-destructive behavior (as substance abuse) by providing excuses or by making it possible to avoid the consequences of such behavior.

what is this in reference to?

[Michael Murphy]

You know panic is not a choice,  if you are in a panicked state it is not a controlled emotion by definition if you are in a panic you have reached a bad place.  Your center seems to ignore its patients and expect them to sit there and not to cause additional work.  If the symptoms you are having have scared you enough to panic the staff needs to deal with it.  You are not a machine but a real live human.  None of us is perfect and by minimizing your reaction the staff is showing they are in the wrong line of work. Hang in there the problem is not you.

[gothiclovemonkey]

i have panic attacks often. they suck, especially the ones that happen for no apparent cause...
I am not making excuses for the staff, but this particular day they were already running behind, and machines were screwing up all over the place, so I have no doubt they were frustrated... that being said it just really bugs me that they get so annoyed with me when i do get panicky. its not like I want to be.


Thank you for your kind words <3

It went well today for the most part, and I think ive finally got an answer to why that last hour is so rough! I felt it, it feels similar to a BP drop, but slightly different.... and she took my bp it was ok, I said IDK i still feel this, mayyyybe it is panic attack, but I dont think so... then she took my sugar... it was 75, which, considereing id had breakfast and i suck on lollipops during my treatment, it probably should have been higher... And it kind of makes sense, If I dont go to sleep during treatment, I have a lolipop in my mouth, or gum... but if i sleep, i do not,and then perhaps it drops my bs. Im going to pay attention to that, see if it makes a difference.

[cassandra]

M... then she took my sugar... it was 75, which, considering id had breakfast and i suck on lollipops during my treatment, it probably should have been higher... And it kind of makes sense, If I dont go to sleep during treatment, I have a lolipop in my mouth, or gum... but if i sleep, i do not,and then perhaps it drops my bs. Im going to pay attention to that, see if it makes a difference.

That would be good, can I ask what you have for breakfast, and if you are still not allowed to eat during D?

Love, Cas

[Michael Murphy]

Low blood sugar not good, one day the guy next to me had his blood sugar drop and one of the nurses came running over with the biggest needle I have ever seen.  It looked like she was giving a flu shot to a elephant. I am thinking this guy looks like he's  not going to make it and holy crap she is going to stick him with that!   Well she stuck it in the tubing and shot him with glucose. Litely within seconds he went from looking like he was going to die to a picture of health.  He was fine but for a while I fell a sleep during dialysis I had nightmares about that needle.

[PrimeTimer]

i have panic attacks often. they suck, especially the ones that happen for no apparent cause...
I am not making excuses for the staff, but this particular day they were already running behind, and machines were screwing up all over the place, so I have no doubt they were frustrated... that being said it just really bugs me that they get so annoyed with me when i do get panicky. its not like I want to be.


Thank you for your kind words <3

It went well today for the most part, and I think ive finally got an answer to why that last hour is so rough! I felt it, it feels similar to a BP drop, but slightly different.... and she took my bp it was ok, I said IDK i still feel this, mayyyybe it is panic attack, but I dont think so... then she took my sugar... it was 75, which, considereing id had breakfast and i suck on lollipops during my treatment, it probably should have been higher... And it kind of makes sense, If I dont go to sleep during treatment, I have a lolipop in my mouth, or gum... but if i sleep, i do not,and then perhaps it drops my bs. Im going to pay attention to that, see if it makes a difference.

My husband has Diabetes. If his blood sugar gets too low he gets shaky and describes feeling "panicky" just like you describe. He gets cranky and easily agitated until we can bring his blood sugar level back up. Funny, I don't have diabetes and my blood sugar is always fine but sometimes if I don't eat I get shaky and feel agitated, so I understand how he feels. I see it happen to him and feel bad and know he will be calmer and nicer once his blood sugar level is back up. He prefers to use glucose tablets to bring his blood sugar back up because he knows exactly how much glucose is in each tablet. He buys them at Walmart. Otherwise he eats a couple of cookies and when he's really desperate and we don't have anything else around, he'll have a tablespoon of pancake syrup. He doesn't eat anything during treatment because as food goes thru the digestion process, it can make a person's blood pressure dip down and he has to avoid that. Good luck to you....hope for better days.     

Also want to add that I have Asthma and sometimes if I feel anxiety over something, it triggers an asthma attack and vice versa...and I go into full panic mode. Very unpleasant, very scary. I'm doing a little better at controlling it tho. Not an easy thing to do. Takes a lot of focus. I keep a "code word" in my head to silently repeat to myself when I need focus to stop an attack. Funny but it helps.

[gothiclovemonkey]

I had an egg and  toast for breakfast.
I ended up with a migraine, had some dinner and felt a ton better. then promptly threw up and fell asleep lol

No, our clinic doesnt allow us to eat or drink there, they technically say no gum or candy but they let that slide.

The nurse said she gives glucosse at a bs of 65. she said mine was low enough i probably feel it, and honestly, i am overly in tune with my body i think lol the slightest of change i tend to feel. When I had appendicitis I felt it immediately, they took it out because it was bad, but he said he was surprised that I caught it so quickly. Or when my bp drops even a few ticks, I notice it. I can usually tell what my temp is. its kind of a blessing and a curse to be that in tune with yourself, I think. I know my own body enough to know what something is off (im sure a lot of people DO, and just ignore it. which, even I ignore a lot of things, because I dont want to go to the dr every damn day lol) I really do believe that this is part of the problem I end up with the drs. I am feeling it before they can find it? something like that. Because I have now had 3 different doctors groups for D, and 2 of those seemed to think that I was just full of crap, even though every single time I turned out to be correct. (not tooting my horn, just making the point)

i was tested for diabetes not too long ago, they said my pancreas works like a dream lol i almost wonder if it works toooo well lol I remember as a little child my mom would take my bloodsugar (she had diabetes) and it would be low like that, even after eating sugar snacks...

[Charlie B53]

Diabetics also include those with chronic low blood sugar.

PD,  just for giggles, the next time you 'feel' low like that ask you Husband if you could test your sugar.  If indeed low you may consider letting your Dr know.  Especially if you confirm this on a few different occasions.

I am diabetic.  My sugar usually goes up, but there are a few times that it has dropped.  That's always a surprise!  I never realize it until I'm in the low 70's.  I start getting very shaky.  You would think I would notice a lot earlier as I break out in a heavy sweat and get very tired.  So tired that I can hardly walk.  Taking very little steps, almost shuffling. I often blame it all on the Summer heat and head towards the house, thinking I just need to get a cold drink of water.  By the time I get there I'm half sensible enough to think that I should test my sugar.   D'oh!  I'm low, get a drink of OJ and make a half a sandwich.

I don't doubt for a second that there are many people that have no clue how their body works.  What some of these odd 'feeling' may be.  Most just shrug them off and continue on their day.  Some, fall over dead.

Many of us here at IHD have had to learn to pay attention to strange feelings.  This disease we all have cause many strange side effects, and not all of us experience all the same effects.   Some, Yes.  All, No.   So I can be a good thing to note these 'feelings'.  If nothing else, write them down, keep some sort of calendar.  Can you find any pattern, what, when they occur?   It would be great if you did find any of these 'triggers' so you could start to avoid them in the future.

GLM,  I've noticed a few times you mention throwing up, unable to keep food down.  I have to wonder how often, and what is the cause?   Many people are 'stressed' and a percentage of those do not realize how the unconscious stress can have an affect on their system.  When no related medical reason can be found for throwing up then it may be time to consider a light dose of something to help relax some of this unseen stress.  It need not be a dose large enough to make a noticeable change.  You would have to talk to your Dr's.  Primary Care or Mental if your are already seeing someone.

If I were to go on hemo, I KNOW I would be first in line.  Wanting something, and a BIG one!  Cause I'd be stressed at the mere idea of holding still and anyone getting near me with those huge pipes, er, needles.

[gothiclovemonkey]

GLM,  I've noticed a few times you mention throwing up, unable to keep food down.  I have to wonder how often, and what is the cause?   Many people are 'stressed' and a percentage of those do not realize how the unconscious stress can have an affect on their system.  When no related medical reason can be found for throwing up then it may be time to consider a light dose of something to help relax some of this unseen stress.  It need not be a dose large enough to make a noticeable change.  You would have to talk to your Dr's.  Primary Care or Mental if your are already seeing someone.

it happens many times a week. I havent found an actual cause but I can say that typically i wake up in the middle of the night hotter than the hinges and end up throwing up then. There are other times, but that seems to be most often times in the middle of the night. Sometimes directly after a meal, and sometimes there seems to be absolutely no reason at all for it, it just happens. Even if there is nothing to be thrown up, it happens.
I did have 7 ulcers a few years back, so ive been on protonix (super strength prilosec-type med) for that for a while now, but the doc said sometimes it can cause this, so i stopped oh probably 2 months now and its still happening.
It could be stress, or whatever is going on in my head... ill be seeing a neuro soon about all of that. I have some really odd symptoms going on still... they are like.... tics? almost.. my body flails without my permission, kicking punching, writhing, sensations of needles and hot tingleys. sometimes it feels like the feeling when you have just spun around really fast, but last longer than that, and more intense, maybe sort of like falling? but im laying or sitting, when it happens...
and i see bright almost camera-like flashes of light, and the best way to describe this, if you have ever owned a computer and used the black screen saver with the white specks that move, like snow, or star wars warp speed type thing? i see that, open or closed eyes, often especially after D. hoping i finally get some answers there!
they dont want to prescribe me any antianxiety drugs due to my age and the possibility i could become dependent (which is really odd considering I took them in HS... and told them that, and I stopped taking them because I didnt like that high feeling on them at all, so there is absolutely not a risk that i would abuse them) one doctor i talked to about it (a psychiatrist) said he wasnt comfortable due to my other health issues...

[Charlie B53]

i am not one to get 'headaches', but one year I would get on most every afternoon on my way home from work.  Strangely it usually started along the same section of road.  I would begin to see 'moving lights'.  Colored bars of light, red, blue, yellow, and green, moving in what appeared the capitol letter C.  Hurt so bad by the time I got home I would take a narco pain pill, a whole muscle relaxer, and go to bed and go to sleep.  Wake up a couple hours late just fine.

I was starting to believe the State Patrol was using a radar Laser and I was driving thru it, every day.

After many weeks, months? I gave in and went to my eye Dr as I needed a new set anyway.  He laughed, told me I described a 'textbook eye migraine'.  Some people get them, most do not.  The best treatment, pain pill, muscle relaxant, and a nap.  Exactly what I had been doing.  Wasn't long after I quit having them.   Total strangeness.

Stress can lead to migraine headaches.  Some migraines can definitely cause the stomach to empty.   Two things you could try.  Take your blood pressure occasionally just so you know what is normal for you at home.  Then again when any of these conditions begin, or as soon as you are able.  So you can see what effect it has on your BP.   If you are diabetic, or even considered 'borderline' test your sugar.  Find out what is normal for you at home, then again during any condition to see if you are possibly low, or high, are if any different than your normal.

Tension, stress, whatever you want to label it, has an effect on the body.  The 'fight or flight' syndrome.  The body responds to the unknown in preparation to fight off an attacker or flight, run away from whatever.  Most of the time it is simply our imagination run wild.  But the physical body does not understand why, it only responds to the electro-chemical impulses within the brain.   When the brain chemistry starts tilting and we have trouble understanding it then it may be time to seek help from a nuerochemical specialist.  They can be few and far between.  Most Dr's will just wend you to some psychologist as they are the ones that usually prescribe some of these classes of meds.  I personally do not like them.   Not near enough training in the actual chemistry and too much of the Freudian philosophy.

I've heard tale of onoe, but I haven't found out who, or where.  Only the he has developed testing of the spinal/brain fluid and is able to prescribe with certainty.  But insurance Companies refuse claiming it is still 'experimental' and not covered by policy.

Once again, the Insurance Companies weasel out of allowing someone to be returned to the workforce.  Leaving them victim of big pharma and their costly meds that do not work.

[gothiclovemonkey]

thank you all

i highly dislike migraines and dont get them often, thankfully!

I am not fond of pills, period, I take the kidney and heart stuff, but only because i must. I current take trazadone for sleep, as well. Its extremely hard to get them prescribed anyway lol understandably, i know a few "pill poppers" (strangely enough, they have a much easier time getting them, than the folks that actually need them. go figure)

[kitkatz]

Since the major abdominal surgery and infection that tried to kill me off two years ago I have had:
Migraines
Hot flashes
Stomach problems with diarrhea and nausea
Problems with eating certain types of food such as wheat
Numbness in fingers from nerve damage
Deafness in left ear from nerve damage
Anxiety attacks at dialysis that started at 11pm and went to 2am. It was making me nuts.

So I had to make some changes:
I have Imitrex for the migraines, however only for real drop me down migraines
I dropped wheat out of my diet mostly and try to stay gluten free as much as possible. And in the US it is difficult.  Everything has wheat in it.
I grab things differently now, two handed. I know I might drop something and often do. 
I have to see people's face when they talk to me and try not to sit is a noisy area of a restaurant so I can hear conversations. 
I take 2 Ambien before I go to dialysis to help with the anxiety attacks.

It can definitely make you nuts when changes have to happen in your life when medical things cause problems.
I am feeling my mortality more and more lately.

[gothiclovemonkey]

all from a surgery? wow! I am sorry you have to deal with all of that! i hate that any of us deal with any of this crap!

latelyif watching tv,  ive had to use CC  because it seems like, idk, either im not hearing properly or something? its like, i can totally hear the noise but it doesnt make sense to me.

[Charlie B53]

I too for the most part, have to 'see' people talk, otherwise it's just noise I cannot understand.

Daughters has hair that I would KILL for!  Heavy course tough, even though she started greying in her early 20's, now 45 is half grey, salt and pepper, looks good on her.  She finally  cut it SHOT a couple of years ago.  Had migraines so bad she'd be puking until she took her imitrex shots.  I've heard of a number of Ladies that have cut their hair for this reason.

I wish I had her hair.  Mine is baby fine.  I quit cutting it when I got out of the Army in 75, but it wouldn't get much past my shoulders.  No matter how I tried, what I use, braided, banded, whatever.  It was so fine it would break off of its own weight.

Niece had migraines.  Finally figured out what foods were causing them.  Nitrates found in many things.  Hotdogs, bacon.  For her also peanut butter, chocolate.  I don't remember the rest of the list.

The point I was trying to make earlier is that your body can be reacting to stressors and causing some things long before you notice that.  Although you may be more 'in-tune' you  are still learning.

Wish we could solve your puzzle.

Take Care,

Charlie B53

[Michael Murphy]

I don't have migraines today but during the early 90's I got them 6 to 8 times a month.  Imitrex took away the pain but left some fun effects.  I saw auras around people, didn't hurt so what the heck, I just enjoyed the strange light show.

[kitkatz]

Imitrex doe snot take the pain away, just makes me not care about it anymore.  I do not make sense when I take one.  So I know not to go out or drive.