I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: KICKSTART on August 13, 2009, 09:19:58 AM
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to get through this , i have never been so low. Yesterday was one of the worst days of my life, no possibly today is , or will it be tomorrow?. I had the tunnel line put in yesterday and was told although i would feel pushing and pulling , i wouldnt feel pain, they were lying. It was agony . By the time yesterday had come around, i had got myself worked up and was in a state , they said i would be 'sedated' while they did it , they were lying. The doctor that was doing it ,only words of comfort were , you have 5 minutes to pull yourself together and stop shaking or i will get the next one in..Somehow they did the procedure and i was in so much pain , then i had to sit in a waiting room from 10.30 am till 3pm for a slot for hemo. My pain relief for all yesterday , 2 paracetamol, oh and i must not forget the one cup of tea. I was there from before 8am yesterday ,till 7 pm. Of all day after the first 2 paracetamol i was offered 2 cups of tea in total and one plain biscuit. I was in so much pain. I then went onto hemo , was put on the machine , given a 'buzzer' and left to it. The bed was too short somehow and i couldnt straighten my legs, the nurse just laughed. I saw one of the hemo sisters outside the door plumping pillows ( they had put me in a room on my own) and asked her could she spare 10 mins to talk to me and explain things , no had given me any advice about the aftercare of my surgery on my neck and i didnt know the first thing about the hemo side . She told me , i wasnt the only patient she had and anyway hadnt i already been told all this beforehand? I told her i was an emergency so no , i hadnt, she then said she was too busy right now and walked off. Anyway i did my hemo and was then told my next session is Sunday !!
I eventually got home feeling very very low and in a lot of pain. The next thing my mum arrived (suprise , i wasnt expecting her) She had been having a lot of pain in her hip/leg but the doctor has given her morphine patches and she was a lot brighter. So for a little while i perked up , it was just so nice not to be in empty house , plus it made me feel like someone cared. Anyway she didnt stay late and i was drained.
No matter how i tried last night i couldnt sleep for the pain, im worn out , drained, exhausted. I rang the hemo nurses only to be told, it will soon feel better , got to go now , busy ,bye.
My mum has to go for an x ray today so i said i would ring this afternoon and see how she got on and that i had had a very bad painfull night. Now i dont want to seem like a spoilt brat , but bear in mind all i went through yesterday alone , the pain and tiredness im in today, but all the family are rallying round my mum today for her 'x ray'. One member of the family was taking her and staying with her , the others ringing to see how she got on ,etc,etc.
Anyway i rang after dinner to see how she was , only for my aunty ( the one who had taken her) to tell me , mum couldnt come to the phone , she needed to rest , she was in pain, so she was staying a while and i should ring back later and let her rest. Now this anger is not directed at my mum , but what the hell did my aunty think i had been through ? They didnt even ask if i could manage , if i had food in the house or had eaten , nothing. Ive just rung my mum ,who tells me shes in so much pain and ive asked her WHY , why do my family hate me so much? Why does no one care about me ? What do they think im going through? Not just now ..forever. But of course my mums loyal so wont say a bad thing about them. She just tells me im low but in a few days i will be fine! and shes sure i have got it wrong and a million other excuses. Sh says ring the hospital , talk to them, shes clueless. I dont need the hospital right now , i need my family. The hospital have no time for patients who are low or upset or exhausted. I just dont know where to turn and to be honest im too tired to even try , im struggling just to keep my head clear. I hate life right now , i hate the hospital staff and i certainly HATE DIALYSIS.
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:flower; :flower; Kickstart I cannot believe that you were put on dialysis in such an uncaring way - that is cruel. KS no more dialysis until Sunday!!!! That is a long time between sessions. When a new patient starts hemo here there is a nurse assigned just to them for the first treatment!! It makes a lot of difference. they answer questions you have , etc. :cuddle; Hope thing get better. It I were close I would bring you some good healthy food to help ease the pain. :grouphug;
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:grouphug; I am so sorry KS. Jenna had no discomfort after the first few hours of the catheter placement (she was knocked out when it was inserted.) To me pain is a sign that something is wrong - I would try to get an appt. at radiology to check that it's not kinking or pressed up against the artery. I wish you were closer too, I would be there in a heartbeat. So sorry you don't have any support at home. :grouphug;
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KS, how very awful!!! And uncaring, inhuman, etc etc. I'm gobsmacked to say the least. Do you have food in the house? I don't know what to say about your family's absence other than it breaks my heart that you seem to get so little support and assistance from them.
Is there a renal social worker at all or is she/he totally useless? I know you don't feel like calling a single soul at this point so maybe not right now but before your next session is it possible to have the social worker arrange for you to have some time set aside for you to get questions answered by a nurse or other medical type ( hopefully one that has a clue)?
I'm so sorry this has all been so difficult for you and I'm mindful that you are probably somewhat underdialyzed at this point, a physical fact that makes it that much more difficult to weather minor, let alone major, storms.
:grouphug; :cuddle; :grouphug;
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I am utterly speechless, Kickstart.... that doctor.... your family.... the nurses.... it's all criminal!
The doctor especially has me fuming. Some day he or she will be a patient, and we can only hope this person will receive a bit of their own treatment in return.
I hope you continue to feel better. Please keep telling us what's going on with you. We care! :grouphug;
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Kickstart, I read your post earlier and was so astonished I could not even answer. It is like the whole world dumped on you. The Dr. should be shot, the nurses should be beaten, but your family to treat you like that, is unbelievable. I am so sorry this happened to you. You do not deserve such treatment. Do you have food in the house? Are you still in pain? Oh, I wish there was something I could do for you, but know that you have all of our support and love.
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Sadly I'm not surprised, that sounds a lot like the way Dad has been treated when having tunneled lines put in. He was also just attached to a machine and left to get on with it for his first dialysis, no-one explained anything, buzzers kept going off and he didn't know what it was all about. The nurses have far too may patients to deal with and not enough time to explain the procedure to patients - that is wrong, it's unacceptable but it's the way it is.
However I do not understand how your family can be so uncaring, I know that a lot of people do not understand dialysis - some have asked if Dad will still need it now he has lost his leg! But there is no excuse for close family not to find out exactly what it involves and to support you through it. Thank goodness you have another family here at IHD :cuddle;
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I am so sorry about all that you went through. I totally understand your feelings, and wish I was there and could do something about your situation. I can just send you a big CYBERHUG and let you know my caring thoughts and prayers are with you all the way. :cuddle;
that doctor :Kit n Stik;
those nurses :Kit n Stik;
your family :Kit n Stik;
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i think i understand your frustration KickStart. and i know about the neck tube. that's how i started dialysis. a lot of people start that way. no one told me you could be sedated during the insertion, but i didn't have the traumatic experience you described.
i know the family thing, too. most of my family has become invisible. the rest are in denial. they figure that as long as i'm still alive, dialysis must be a miracle cure. yeah, right...duh.
from the sound of it, things can only get better for you from here. i look forward to that.
take care
LL
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LightLlizard is right. Things can only get better.
And dear Kickstart, think that now you have had the worst day of your life, they WILL be better days.
I'm so sorry your family is not supportive. I hope it is simply because they see that you are functioning and don't realize the difficulties you are having. I know it still hurts, though.
:grouphug;
Please keep us posted.
Aleta
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Oh Kickstart...
I'm SO sorry to hear this, but not one bit surprised... I've heard this story over and over again in relation to doctors... You'd think that they were doing us a favour by treating us instead of being well paid to do so...
As for family, join the club... I'm TOTALLY alone with Mum... Thank God for friends... They're God's apology for family!...
I hope you're feeling much better very soon....
May God bless and protect you...
Love...
Darth...
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Oh, sweetie, what can I possibly say? :Kit n Stik; to them all!
:grouphug;
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KS,
For some reason, this post brought MANY tears to my eyes maybe because I have been there and I TRULY know how it feels as well as others on this forum do! I am so, so, so, sorry you are dealing with a bunch of CRAP! It really pisses me off when others makes us feel belittled and what we are gong through well, "we should just get over it" or they say, "well, what about ME?" Why can't someone just freaking LISTEN and not change the story to about THEM and what's going on in their lives????? Yeah, they MAY BE having problems but for once, just once, can't *I* just vent without them throwing in or changing it to about them????!!!! WHEW! I get :rant; there! SEE! I do know how it feels and yeah, it hurts like hell! I do wish you had someone to listen to you even if its not family, someone face-to-face. I can't understand why the health care "workers" were so cruel to you, that is UNREAL! Please do hang in there and don't give up and keep coming back to this forum and vent as much as you like because *WE* care! :cuddle;
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What lousy treatment. I'm sorry things went so badly for you.I'm shocked the medical staff could be so uncaring. Then on top of it all, your family is so uncaring. They rally around your mom and her medical issues but seem to think your medical issues are nothing. It was very nice of your mom to drop by for awhile, though. Get better soon.
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Sorry to hear your experience was Sh*&%^, I totally understand. It sounds so much like when I got on. They inserted the tube while I was in pulmonary failure, than put me in ICU. I really understand "the family" thing, I'm in the same position now. That's why I'm so happy to have this family!!!!! How I think they think ( the family)( it may not be but it makes me feel better) is that if you look normal you should be normal, it's their own closed mindedness that is so irritating. I had to have a fistula done and my hubby was working, I had asked my mom to help but she had to babysit her grandsons. I needed help for a week but in her mind it wasn't as serious as I made it out to be. The family thing bothered me so much that I got a pchychiatrist, he helped alot. My sister had cancer 10 years ago and my mother stayed with her the entire time. Mom did come with me for every chemo treatment but will comment now that it's not the Kidney disease that makes me ill, it's my mentality. All we need is support, the nurses don't get it, family has a hard time getting it (it's like their pissed off that we're sick and taken it out on us), so we come here where our peers get it and support us.
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kickstart-I may not always post- but I do listen and read all your posts...and I do care truely, if I could help you I would so be there for you. :grouphug;
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Kickstart, I am SO sorry you had to go through this. I can not imagine what it was like physically for you, but I was alone when I had my fistula surgery and started dialysis too....my family had some truly ridiculous excuses for not being there. I have never felt more alone, in a more low place. But, I can tell that you are incredibly strong - you just went through one of the most difficult experiences anyone could ever go through, without any support or kindness shown to you, and still you are reaching out to us....you are going to get through this and you will be ok. Keep letting us know how you are doing, and we will support you. You are definitely not alone.
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I'm so sorry to hear what you have been going through. I can't even imagine how you must feel. I'm sure the hardest part is not having anyone there for you.
Is there anyone else in your dialysis center that is in the same position as you? Sometimes you get more help from perfect strangers than your own family. If there were someone, you could support each other. You may be surprised to find someone who also feels like you and at least you could have someone there that understands and you could help each other.
I know the people here support you so at least you have someone to talk to and I'm sure they wish they could do more for you. I hope you feel better soon.
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me two......
It is just so rediculous...... there are millions of people in the world and no-one gives a damn (except us).
I REALLY wish that I can be there to help you.....
Love and hugs
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KS!!! lots of hugs(gentle) :cuddle; this sucks??!! Is this how the NHS "works"???? or what?
I am certain that our staff would NEVER treat a patient that way. In fact our guys will often stop and explain things, even if they are busy. OK they can't spend all day but they do try to answer questions and give pain relief. They wouldn't just leave someone on a machine unless they were stable - even in an isolation room (I was last in it when they thought I had swine flu).
I am sorry this is horrible. You may not have been their only patient but that shouldn't be the issue. You should be treated with respect and clearly you haven't been. Very angry for your sake. :cuddle;
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Oh you guys ..i dont know what to say or how to thank you all enough for all your kind words, but know they are really, really appreciated . :grouphug; I will have to keep this post short as im off to the hospital soon. They were not going to give me any more hemo till sunday but ive rung them and said im exhausted , fluid overloaded and needed dialysis before then and if i wasnt going to get any then who higher up the ladder did i speak to ? that seemed to do the trick! At the moment still no support from my family only a phone call off my mum but thats more to tell me how shes getting on and how much pain shes in (dont forget everyone my brothers at home!)
Also im at screaming point ..she got this crazy idea in her head and its driving me mad. After my aunty looked after her the other day they were obviously talking and my aunty has told her about a work friend of hers who does Hemo, now somehow he only goes twice a week and is doing great , so of course my mums got it in her head this time next week this will be me !!!
Anyway i had better go and get ready to do battle with the hospital staff , if only i wasnt so worn out and in pain , wish me luck, i will be back asap .. KS
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What's that saying about being able to choose your friends but not your family?
I hope they will give you some dialysis since you need it and you will feel better soon!!! :cuddle;
btw I don't know ANYONE who does hemo only twice a week. I wish!!!!
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I am so sorry. As I read your post tears just started streaming down my face. How can we humans treat others the way you were treated. Things should get better from here. :grouphug;
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the longer i live the more i am convinced that we humans are mostly just apes without hair or heart.
everyone is so concerned about their own little bubble and what goes on iside it that they don't even see anyone else and the pain they are carrying.
if i were to list the things i would miss in this life should my time come soon, humans wouldn't be anywhere to be seen on that list.
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Well, LL, I do get your point and I'd leave many humans off that list too, although I'd add a goodly number. However, if you don't immediately add TheWife to your list, I'm heading your way to have a chat. Be warned my man! :rofl;
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KS, your recent posts have moved me to tears. PLEASE know that we're all thinking of you! You are so strong, you can get through this! My thoughts and prayers are with you!
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Oh what a sad story. I can relate to your first hemo day because mine was pretty similar except I was given apple juice. I had pain, I thought I was truly going to die and nobody cared. I didnt see anybody when they wheeled me into the room and I seriously still think I was abducted by aliens. When my hemo time arrived I was shoved into a room and hooked up with nobody explaining anything to me or even saying hi. They left me laying there for 3 hours without a single word. I was terrified to move my little finger because I just didnt know.
It is horrible to be treated with so much disrespect. It traumatizes you emotionally and really makes you feel sad about life. Things always change and normally they do improve. My outlook on dialysis was a bit grim because of my traumatic start but I am a lot better now and hope you will be too.
I wish you so so strength and hope you feel better soon.
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Thanks, kana, you've given me so much to look forward to. :sarcasm;
I'm pre-hemo with a maturing fistula and I expect to go on later this year.
Sorry it was so bad for you; I hope that I shall have a happier story when my turn comes.