I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Ninanna on July 10, 2014, 05:55:35 PM
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Go!
When I was in the out patient clinic everyday for IV meds and I wanted to talk to a nurse, I would clamp my catheter so the pump would beep!
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Go!
When I was in the out patient clinic everyday for IV meds and I wanted to talk to a nurse, I would clamp my catheter so the pump would beep!
Ha! That was actually a pretty brilliant idea!
A looong time ago when my father was in the hospital, he had me sneak in some beer for him. Of course, we were busted when the dietician found empty beer cans under his hospital bed. :beer1; It was like, "Dad, you were suppose to put those back inside the bag for me to take to the garbage!" We screwed up!!
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I had both shoulder joints trimmed to remove the bone spurs in 1996. Right in Jan, left in Aug.
They wouldn't let me drag my IV pole with me outside to have a cigareete, I had to have someone with me a I was on about the strongest IV pain med there is. It worked pretty well too.
I guess I was a bit whiney about going out and no one was available for a very long time. One of the Nurses said 'Why don't you just smoke in the bathroom like all the other patients do.'
After that I was afraid they'd think I had diarrhea or something as I was in there so often.
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Most of my badness seems to come from hospital exits. The most recent one was when they were going to release me from the hospital, I told the nurse my ride was on the way. They let me go down to wait for by myself. The truth was that no one was available to pick me up so I walked to a bus stop.
Another time I drove myself to the hospital and when they wouldn't let me drive home at release time, I called a friend to come get me. As soon as the nurse walked away, I thanked her and we each left in our own cars.
A third time, my dad was here and was my designated driver. He's' in his 80s and not familiar with the area so riding with him is scary. He got to the hospital door, i got in, he drove up a few feet while the nurse walked away. Then he stopped the car, handed me the keys and we changed places.
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Hahaha these are all great!
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I would go straight to dialysis from going out the night before. I would usually stay out drinking till 3 or 4am and just go to dialysis at 5:30am. I would still be pretty tipsy sometimes. Luckly my center was literally 2 mins away from my home and no cars around 5am. My blood pressure would be so low ( 80/50) going out the night before with all that alcohol when on the machine. Only did that maybe 3 or 4 times in my 4 years on dialysis. Dialysis was not pleasant on those days to say the least. Lol
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I had both shoulder joints trimmed to remove the bone spurs in 1996. Right in Jan, left in Aug.
They wouldn't let me drag my IV pole with me outside to have a cigareete, I had to have someone with me a I was on about the strongest IV pain med there is. It worked pretty well too.
I guess I was a bit whiney about going out and no one was available for a very long time. One of the Nurses said 'Why don't you just smoke in the bathroom like all the other patients do.'
After that I was afraid they'd think I had diarrhea or something as I was in there so often.
:rofl; That's hillarious! And gutsy!
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Most of my badness seems to come from hospital exits. The most recent one was when they were going to release me from the hospital, I told the nurse my ride was on the way. They let me go down to wait for by myself. The truth was that no one was available to pick me up so I walked to a bus stop.
Another time I drove myself to the hospital and when they wouldn't let me drive home at release time, I called a friend to come get me. As soon as the nurse walked away, I thanked her and we each left in our own cars.
A third time, my dad was here and was my designated driver. He's' in his 80s and not familiar with the area so riding with him is scary. He got to the hospital door, i got in, he drove up a few feet while the nurse walked away. Then he stopped the car, handed me the keys and we changed places.
:clap; You sound a lot like how my Mom was. One time she actually tried to escape from the hospital. She might have succeeded except they could see her legs and feet under the curtain where she was hiding.
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Oh dear. I'd never be able to list all of mine. I am not necessarily proud of all of these, but I don't know that I would have done anything differently. So buckle up, because this is what happens when you drop a child into the very adult world of medicine and leave them to fend for themselves:
I bit a nurse at the original transplant hospital. I remember she shouted "Ow, she bit me!" like a line from a poorly written film script.
On the pediatric ward I locked myself in the lav with a plastic cup and turned the water on, pretending to drink. I could hear the young, inexperienced nurse on the other side of the door timidly knocking and then saying to a colleague "It says here she's supposed to be on fluid restrictions!"
I refused to speak to anyone using the title doctor, not one single word.
I took my anesthesia mask off before the transplant, repeatedly. I screamed for my mother on the table.
I pulled my IV pole outside the transplant floow and climbed out on a ledge in winter, then paced back and forth. I could see my mother screaming and being held back by two nurses, and a young doctor with his hand in his pocket turning his head sideways to get a view of the spectacle. I hadn't planned anything out and didn't really know exactly what I was doing, except my father wasn't there because I was convinced he would kill me if he had been there. When he did return from wherever he was I just remember him jauntily stating "So, the doctors say you're homesick." I was discharged that morning.
I lied. Constantly. I told my parents and doctors that I was taking meds that I wasn't. I stockpiled any of my drugs that listed weight loss or similar as a side effect.
I was put on a low sodium diet after transplant. I salted the living sh!te out of food every chance I got.
My parents put me on a dangerously low-calorie diet. Once in primary school I came home to find I was alone in the house. Immediately I tore through the kitchen trying to find something to eat. My mother didn't really buy packaged desserts or snacks, so there was nothing fun in the house. I wound up having Saltine crackers with about a half inch thick square of butter on each piece. Needless to say I was feeling nauseous shortly after starting this escapade.
I stopped seeing doctors for almost a decade and when I returned I was hailed as some sort of transplant hero.
When I was expecting Aidan I was put on bedrest at around 6 months. Two weeks before he was born I was out until past midnight at various concerts. I was even nearly pushed over by idiot paramedics trying to get through the crowd. (Don't think they stopped to consider that they could be creating a new medical emergency in their haste to reach the first medical emergency.)
In LA my nephrologist had a policy that he would not see patients if they did not have recent blood test results with them. Inevitably I would forget to get bloods drawn until the last minute, so I would just check STAT on the prescription, and when I was asked who ordered the test done STAT I would answer with my I-just-do-what-I'm-told shrug.
The one I'm most proud of did not involve me as the patient. My younger boy was having an invasive exam when he was all of three. At one point he grabbed the nurse practitioner's hand and, sounding for all the world like Clint Eastwood, growled "Get. Out." The nurse practitioner, clearly misreading my philosophy toward parenting, looked to me to intervene on her behalf. She turned to me and said "Get out....?" (with undertones of "Aren't you going to scold him?") and I replied "Yeah!" and then innocently stared at her as she stood there with her mouth hanging open. I praised little Dyl all the way back to the car. He stood up for himself in a way I was never able to do and I told him I was so proud.
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When I was expecting Aidan I was put on bedrest at around 6 months. Two weeks before he was born I was out until past midnight at various concerts. I was even nearly pushed over by idiot paramedics trying to get through the crowd. (Don't think they stopped to consider that they could be creating a new medical emergency in their haste to reach the first medical emergency.)
Ahhh I remember that one. When I had my youngest child , my kidneys started to fail and i ended up in a London Hospital, miles away from friends and relatives, on 5 months bed rest. It drove me loopy. I used to walk to the shop and back (very slowly) everyday. I stayed up all night playing scrabble and trivial pursuit with the junior doctors or watching television. I looked like a beached whale. Everything was swollen!
Everyone else came in , had a baby and went home within 48 hours. I was a permanent fixture...
They induced me at 36 weeks because of the strain on my heart. When she was four days old i begged them to let me go home but this very very young doctor insisted on keeping me for "one more night" and later that night, I developed post-delivery pre-eclampsia and nearly died. If I had gone home I probably would have...
They made me promise not to have any more babies after that (she was my fourth) although they said that after the first one, the second and the third!! I wanted a big family!!! :o
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I bit a nurse at the original transplant hospital. I remember she shouted "Ow, she bit me!" like a line from a poorly written film script.
When I was a small child (2 or 3 years old) I bit a nurse too! She was trying to stick in an IV many (many!) times and after much screaming, I lunged at her like a bear. Now, my parents keep retelling that story so I might as well own it. ::)
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I darn-near started a riot at a hospital where my mom was the patient. It had been hours since the doctor told the nurse to order her food and yet, everytime I kept politely asking about when the food would be arriving, I kept being told "oh, it's on the way". Finally couldn't take it anymore and started yelling. And then I don't know what came over me but I went patient to patient on the floor, asking them if they were hungry and how long had they been waiting to eat and then I'd find their nurse and demand they bring the patients their food. I just about had the whole wing rioting and demanding food as I was their "one woman" advocate on the floor. Nurses started getting on walkie-talkies to report me but I didn't care. I found a guest waiting area with a phone and called the main line, saying doctor so-and-so was needed to my mother's room STAT! And boy, did he get up there in a hurry! And when he showed up and asked what the problem was, I told him "FOOD! These people need FOOD"!! And food they did get! I was like a mad woman but at least I was advocating for all those poor sickly and very hungry patients. I've never regretted it. I can't stand to see people suffer or ignored, especially when they cannot necessarily do for themselves. :stressed;
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Oh wow cariad your tales of a child patient made me laugh, the poor staff!!
I hate to say, i was a lovely child patient, not so much now haha! I never made a fuss when they did bloods (ok i cried a little but always let them do it, my mum was always good at explaining why it had to be done). I do remember when i was 8 having my bladder built there was a boy the same age in hospital next to me having the same thing done and wow he provided entrtainment, ivs pued out, screaming at the poor nurses, even swinging on the curtain rails lol.
I never felt that 'why me.' This didnt kick in til i went into proper renal failure at the age of 29 after the birth of my daughter. But i took it out more on my poor husband. I am so ashamed of the way i acted but i couldnt help it. My hormones were all over the place from her birth 5 weeks early and from the sudden drop in renal failure, i did not stop bleeding after her birth they ended up putting me on the pill which helped the hormones. 'Why me' featured regularly from this moment, why had i had another baby, to the outside world i had it all, a wonderful husband, beautiful boy and gorgeous baby girl and even tho somewhere inside i knew this, i couldnt access it at this point, i was dying inside, honestly i wanted to kill myself and expressed this often. While my friends planned for their future with their new arrivals, i was told prepare for dialysis in weeks. And they didnt understand, they'd say things like, oh you're so brave, you dont looks sick, and you'll be fine you'll get through it. But i didnt want to, i wanted for the first time in my life to be normal like everyone else when i couldnt have cared less before. My lowest point was opening a car door on the motorway and undoing my seatbelt, while my son(just 4) and his godmother were in the back, we'd been swimming but i hadnt wanted to go in the water so my hubby and drews godmother took him in while my parents had elena, i sat there watching them the whole time thinking over and over im not gonna see my kids grow up, he's going to replace me, the kids are going to replace me. So i expressed all of this in the car, and it overwhelmed me and i had to get out. i didnt obviously. Honestly I needed help, counselling, but nothing like that was offered over here. The pill helped me a bit, s did my parents being tested to become donors, we had a goal. Friends talked to me. I hadnt fought for 29 yrs to live to give up just as my life had started. My kids needed me (the song 'in my daughters eyes' struck a chord and is very special.)' I was going to prove the doctors wrong again, i would get up and fight. And i was fortunate to get the kidney from my dad. He so desperately wanted to do it for my children whom he adores (more than me i think now haha!)
Bad patient in hospital was this time 7 weeks ago when i had that emergency op when scar tissue had twisted round my bowels, my arms were all bruised from ivs and them taking blood everyday , they wanted to move the iv to another arm, i cried screamed , kicked off and pretty much refused because my arms hurt so bad, the operation hurt more than any id ever had, and the care on the ward had been the worst id ever experienced (like being left screaming in agony 3 days after surgery unable to get to the toilet as my bowels recovered from surgery and opened uncontollably everywhere, the nurses made me feel disgusting the way they spoke to me and didnt help me, !!) , i had honestly had enough . Anyway they came back with gas and air, result! So i allowed them to do it while i had gas and air, they werent happy i dont think as they dont normally do it but tough!!
I am proud to say my children, son almost 7 and daughter turned 3 last week are fab about doctors and things. They have both had ultrasounds just to check their kidneys, no probs and all normal, and as they come with me for my blood tests they take no notice of jabs. My daughter is having a pre school booster next month and when i told her she said oh yay get ouchy then get chocolate from nurse drawer lol. She remember when they got chocolate from the flu jab last yr. I want to know why i dont get chocolate after all my 'ouchys'?!?) Once while i had a blood test the girls gave her biscuits?!
She also when she was just dry at 2 so last summer got bad constipation (getting her to drink is a nightmare) and bless her she had a little tear on her bottom so she was holding it in as it hurt to go, but she let the doctor examine her without a murmer did whatever she asked didnt even want to hold my hand, the doctor said she'd never seen such a good child!
So I am proud to say my kids are great patients, I am ashamed to say that I am not!!!
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I wish y'all lived right next door to me. I love your spirits!
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gosh im sure i can fill a page here...
usually i get complimented when it comes to my patience, and understanding, and willingness to just get whatever done and over with, but occationally its just toooo much for me. this week was one of those times. i went in two wed ago for a surgery, that had to end up being canceled, after already getting an iv in my foot, saturday another surgery where they claimed they'd be using versed to sedate me, but not until after everything started, and i was awake and aware and felt everything, so when i got the call about the very following wed's surgery (this past wednesday) i was highly nervous. after about the 6th attempt to IV my foot, i started crying and saying "i just cant do this anymore" to the very same peple who had complimented me at being such a good patient. I felt like such an ass. After the 6th attempt, they finally went in to the unused graft's arm. and had to knock me completely out, because...... I KEPT KICKING THE DR!!!!!!!!! LOL (i have RLS, and apparently sedation and that dont mix? lol)
i too have been dealing with med stuff since i was a child, and my mom never really made me follow diets and restrictions, etc, so i just didnt. then after she died, i just stopped going to the doctors, completely oblivious to my health. i hated drs. they made my childhood hell, and nearly killed me. i have no trust in the, even to this day i feel like i get dicked around alot.
So, i apparently have sleep apnea on top of everything else, and in november my dr wanted me to do another sleep test since it had been a few years. i kept putting it off and putting it off (since my first one, i got sent home early, since i couldnt sleep, i thought, whats the point) then i finally got it done, in june haha apparently medicare wants this done all at once, and swiftly, so i did those two damn sleep tests for nothing. im supposed to re-do them, but in all honestly, i KNOW myself well enough to know this will be a big waste of time. I couldnt handle that mask for more than 2 hrs during the study, how the heck will i deal with it at home when i dont "have" to have it on!?!?
and of course, i rarely actually follow a set diet. i mean, i do try to avoid the really bad stuff, but damn it, if i want a potato, a potato i shall have! i dont want to just exist, i want to live. living means dying eventually... i can accept that, but i dont want to just dwell. im going to do what i want, within reason of course.
This is probably why im no longer on the transplant list, i can understand their reasoning, even though i know deep down if i had the chance, id step up and take care of it. i think i did that on purpose... sabbotaged myself. too scared and too stubborn to admit it.
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This last year, I had enough the final time they admitted me into a hospital. I was screaming at nurses, literally screaming at them to "leave me the hell alone. Don't touch me. Leave me the hell alone. The doctor told me you do not need to touch me." Of course they tried to reason with me, but by this time I had enough nursing crap and pain and stuff. I told the doctor if they just leave me alone I would be okay. They finally got me into a room in the ICU ward, loaded me up with antibiotics, and left me alone for about two weeks. Nurses would come in put meds up on the IV stand, check vitals and etc, but primarily were told to leave me alone and let me sleep. I finally started to feel better and was pretty reasonable by the time they moved me out of the ICU two and a half weeks later.
This was after two months of surgery, infection, and in and out of various hospitals, along with crazy talk and hallucinations. My family thought I was losing my mind. I was for awhile there.
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Oh dear. I feel like I'm a bit of a Miss Goody Two Shoes! I'm the model patient, and I'm very annoying in the process, I'm sure.
Actually, maybe I'm a bad patient because I can be bossy. If I need something, I call up my various medical peeps and tell them what I require. I just assume that I'm going to be the one to get things done that I need done. I've probably stepped on some toes without knowing it and without meaning to.
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I tried to escape. I was in ICU, very sick. I pulled out lines, a zozzi (sp?) catheter, was half way out of bed. I have no idea where I thought I was going because my legs couldn't support me. I just remember my nurse, a former marine, saying Oh my God. Then I was unconscious again. He cleaned me up but put restraints on me. The next morning I was still very confused but had a feeling people were mad at me.
Another time I refused the blood thinner. Horrible stuff. They usually inject in the belly. The head of transplant came to my room and lectured me. He said he wasn't going to lose me to a clot. So I took it but refused the belly part. I had awful bruises all over my upper thigh from those injections.
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I have discharged myself several times when i dont agree with them keeping me in just a little longer etc
The docs hate that!!!!
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I bit a nurse at the original transplant hospital. I remember she shouted "Ow, she bit me!" like a line from a poorly written film script.
When I was a small child (2 or 3 years old) I bit a nurse too! She was trying to stick in an IV many (many!) times and after much screaming, I lunged at her like a bear. Now, my parents keep retelling that story so I might as well own it. ::)
You had a much better reason than I! Mine was because I wanted my mother to carry me back to my room. I remember her standing at the other end of the corridor and telling her I wanted her to carry me, and the nurse got fed up with it and picked me up herself. Don't think she made that mistake twice!
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Ohh jeannea you've reminded me now! When i was hospitalized with that seizure 7 months post tx i pulled out so many drips they had to put a central neck line in, which i tied to pull out too, plus i was fighting the nurses, they had to restrain me, was telling everyone the pills they were giving me werent my anti rejection drugs and that this wasn't a proper hospital and they were trying to kill me. In my defence i was no conscious of doing any of this. I remember when i 'came to' so to call it i asked hubby why have i got bruises all over my arms?! And the nurses were saying how thy couldnt believe that such a tiny girl needed 3 nurses to hold her down haha!! Im sure i amused the other patients....or not!!
Ive also refused that clexane jab (blood thinner jab in belly they give u in hospital to prevent blood clots) several times! Firstly one night when id had my c-section, next i think once after kidney tx when i was moving around more, a couple times when i was hysterical with seizure and most recently once when i had bowel op. Nobody ever told me off they said it was my choice and 'offered' to all patients for their protection. Its just so different to when i had my bladder built at age 8 when i actually did not get off the bed for a month, it felt funny to walk after, and there were no jabs in tummy then, plus i kept the same drip in for a few weeks and guess what i was fine!!!
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Lainiepop, that's interesting about how things were different when you were a kid. Bruises on your arm from having to be restrained? You must have really been struggling. The things we do when sick.
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Oh no Jeannea the bruises on my arms were from me constantly ripping drips out and them trying to get more in!! Dont think i was that bad!!! haha!!
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I don't know if this necessarily qualifies as being a "bad patient" but I've woken up during major surgery -twice. It was a real surprise for all involved! And I remember all of it.
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I don't know if this necessarily qualifies as being a "bad patient" but I've woken up during major surgery -twice. It was a real surprise for all involved! And I remember all of it.
Oh god ... that has to be myworse nightmare :'(
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oh my gosh, me too, waking up from surgery is my ultimate nightmare! I read a story in the paper about how common it actually is a few weeks before my tx, i called my tx nurse in a panic asking her all sorts about the monitoring processing i was terrified! As it happens with all my surgeries i tend to go the other way, all dozy for an hour after like to sleep it off haha!
Primtimer what happened, did they realise and put u back off, could u feel it?! Did they have a reason if its happened twice?
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oh my gosh, me too, waking up from surgery is my ultimate nightmare! I read a story in the paper about how common it actually is a few weeks before my tx, i called my tx nurse in a panic asking her all sorts about the monitoring processing i was terrified! As it happens with all my surgeries i tend to go the other way, all dozy for an hour after like to sleep it off haha!
Primtimer what happened, did they realise and put u back off, could u feel it?! Did they have a reason if its happened twice?
They definitely knew I was waking up, they freaked out and started dropping things on the floor and yelling at each other for me to be put back under. At first, altho I could feel the pain I couldn't move or even scream, it was like I was frozen or trapped inside my own body but in the next instant, I felt the pain and it took my breath away. Funny thing, altho I have never had children I had gone thru a Lamaze (birthing) class with a friend to be her "backup coach" and remembered a breathing technique they taught so I used that. I remember one of the nurses in the OR telling me that was a good idea and she held my hand and leaned over and actually started breathing with me but still...the pain was the worst imaginable! And altho I have never known why, they actually brought my mother into the OR. I remember holding onto the side of the bed railing and that nurses hand and breathing really hard and looking up in time to see her at the doorway but she covered her face with her hands and ran off. Later, she told me she was sorry for leaving me like that but that it scared her because she had never seen someone in so much pain before and she didn't know why they had brought her in, either. Gee, thanks Mom! Anyhow, I was too afraid to ask the staff or surgeon later so I have never known why they wanted her in there. They shouldn't have done that to her, I was all cut open and in pain...yes, that must have been terrible for her to have seen. Heck, it was terrible for ME so I am sure it was terrible for HER, too!
Anyways, after the first time it happened, the anesthesiologist told me that if I were to ever have surgery again in the future, to make sure future surgeons and anesthesiologists know that I am one of these people who wake up during surgery so that they can be prepared and keep me under. Well, just so happened, I did have to have another surgery and I warned everyone...right up until the last minute when they sedated me but nooooo, I woke up again! I had nitemares about it after that and sometimes still do but nothing major. Since then, I have found out that this happens to more people than we think and that there is some sort of "brainwave activity monitor" that anesthesiologists can use that will warn them if a patient is waking up so that they can keep them under so they don't fully awaken. If I ever have surgery again, you can bet that I will insist on them using a monitor!
Shame on me for not staying asleep while surgery is being performed on my body! lol