I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MooseMom on March 24, 2010, 12:24:04 PM
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Could you all tell me what your very first day on dialysis was like for you? Were people kind to you? Were they helpful and efficient? How did you feel, both physically and emotionally? Were you frightened? Were you ready? When you were done, how did you feel about the prospect of having to do it over and over again for years to come? How long was it before it all became just second nature to you?
Thanks so much for your replies.
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Yes the first time you do CAPD or PD on your own it is scarey, but having had lots of training from very friendly nurses who explain every thing and give you step by step instruction leaflets it is ok. Before long every thing becomes second nature. Hemo, my husband was not ready for that, the machines, the needles the sitting for hours, no control really, but the nurses were very good. You just have to get on with it.
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I didn't find learning how to do PD bad at all. To me the worst part was over before it began which was the operation for the access. Which in reality isn't scary it is just another hospital visit. And luckily i dont mind having a tube sticking out of me but i can see where some people would find that disturbing or disfiguring.
I think PD may be easier to get use to for the simple fact you know you wont be stuck for the first time. Also at least for me PD was very one on one. I had two great nurses to teach me over a one week period of what i had to learn and do. Where as i (think) doing hemo for the first time you would be in a room full of people waiting for your turn.
As for acceptance i was fine for the first month before i think it really kicked in that i will be doing this daily for a LONGGGGGgggggggg time to come. Then i got cranky for about a month wasn't happy at all with the whole aspect, even the nurses saw a difference in me and i think that is what helped shake me out of my cranky faze.
Now set up and doing it is second nature. Takes me less then 10 minutes to set up. i have to wait for the machine to catch up to me as far as priming and stuff.
And what helps the most at least for me is having Karen and knowing that I'm not alone in this all.
Secondly what helped me (even more then Karen) before i started was everything i had learned and the people i had learned it from right here at IHD.
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I had to go on d right away, no time to build an access. I was in the hospital and they sort of explained it to me, then when I went for treatment the nurse explained dialysis to me, what the alarms meant, etc. When I got out and went to a regular clinic some more explaining of the procedure was done to me. People seemed nice and helpful. After I was released from the hospital I did research on my own about the kidneys and dialysis. I was knervous at first but eased into it since I knew I'd probably have to do this for the rest of my life, but back then they said my kidneys might recover, but in my mind I knew that it probably wasn't going to happen.
Troy
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Well, I've researched D for some years now. My mom is herself on D, so I know more than most people. I've got my fistula and will get the stitches out in a few days. I'm as prepared as a person can be, but I don't know if you can ever really be prepared for that very first time of what will be many, many times. I've imagined it so often, but that doesn't mean that I am really ready for it. So, I was just curious how other people fared and how they felt about it. It has all just been so hard for me, and I was just looking for some reassurance. That first day in the chair; the first time your fistula is used, etc. It just all feels so overwhelming, and it hasn't even started yet.
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When I get stuck for the first time, I'm sure I shall feel like a virgin about to lose her vaginity.
I'll ask the nurse to be gentle with me and I'll think of England. :rofl;
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OMG!!!
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My first time was a little scary but that's because I was rushed to the hospital via ambulance because my kidney was in such bad shape and when I awoke after having the catheter placed I was on life support because I became unresponsive at some point during it all. I'll be honest it kind of freaked me out a bit at first watching my blood being pumped through the tubing and everything. Even though I'm expecting a transplant in the very near future, dialysis is still a big deal. Once I got past the nausea during dialysis, and this may sound silly because its only been a couple months then again I've also done dialysis before, but I got used to it pretty quick. I got sick at first because my body was reacting to the toxins being filtered out, at least that's what they said they thought was happening and after a couple treatments it did stop. Now I just get really cold and for some reason really crampy... though muscle relaxers have been helping recently. I accepted that this is something I have to do as soon as they rushed me to the hospital, there's nothing I can do to change it so there's no fighting it in my mind.
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When I get stuck for the first time, I'm sure I shall feel like a virgin about to lose her vaginity.
I'll ask the nurse to be gentle with me and I'll think of England. :rofl;
Ah yes, the ol' "Lie back and think of England". I don't think they'll get it here in Chicago, though. But maybe I'll try it anyway just to be eccentric and worldly...
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Findingneverland, your post makes me suppose that what led you to dialysis in the first place may determine how you experience the first time. If I were in your shoes, I probably would have reacted like you did. But I've had this disease for almost 20 years, and while it has only been in the last five years that I was aggressively treated in an attempt to keep my renal function intact for as long as possible, I still suspect that when it comes to that first session, I will not be best pleased. I have fought so hard, spent so much money, downed so many pills, skipped so many favourite foods, yet all of that has come to naught at the end. I'm just hoping that on my first day, people will be nice to me.
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I understand your position and can relate. My kidneys were damaged when I was three years old, that's at least 23 years now, and that was after I went through my battle with cancer. My treatment is what damaged them and since then I have been in and out of the hospital because I've got medical conditions out the wazoo. I probably didn't have the 'normal' childhood that most people do. However, I do suppose I take these things easier being that its all I've really known growing up.
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with first time on D i can't really remember, being acute i was in ESRF before i even knew what a kidney was (all i knew is that i hated them and my sister always stole the kidneys from my plate - steak and kidney pie that is), my first time at the clinic was kind of a shock to the system. It was two weeks after my kidneys died (the first time, got some function back later on) and i was 8lt overloaded (i'd been on icu dialysis before that... very slow dialysis not very good at taking off fluid), it was really freaky i had a neck catheter sticking out of my jugular.
Moosemum, don't think it was for nothing.... the longer you can maintain your renal function the better off you are, even mentally. Also your probably getting very close to D now with that comes a lot of emotional strain.... not just from the thought of D but also becuase you body isn't coping well so you swing through different stages of grief and depression so it becomes harder to cope with things that would normally wash over you. I've been through both stages (ie acute failure and then progressive failure... igot back to 23% 12 months after the initial failure but it only lasted 18 or so months so i then went through the slow decline).
at least the 2nd time i knew what i was in for, i'd done the HD and PD path, i chose to go back to PD (i was one of the lucky ones who retained enough peritoneal integrity to go back to pd), the training is easy and by the end i could have set up my machine blind folded (had i the inclination).
Also being young i probably wasn't the strictest PD patient.
When i was actually in a HD chair for the first time every one was really nice, they kind of see the newbie. Lots of questions will probably be asked (how did yours fail, what meds are you on etc) and there will be story swapping. Not everyone was nice but there were enough nice people there that you could ignore the rest. the nurses were really nice as well. But the other patients (esp the women) loved being near me becuase i had a newborn, so they all got very clucky, he was a very quiet baby then so he didn't bother anyone, the nurses often stole him as well.
It is scary and daunting but like anything it becomes 2nd nature and you get used to it. You will have days when you rage against the system, just becuase you're a patient and your sick of it and for no other reason but that! but you live with it and you cope with it becuase you have to, there is no other choice (not in my eyes but each to his own).
So good luck, it does get easier. We all hate dialysis but at the same time we learn to appreciate it becuase it keeps us alive and through it we get a semblance of normality
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Mikes first time on dialysis was horrible. When he filled up, he vomited, when he drained, he vomited.. the nurse frustrated us, kept saying that he was suffering from uremia, when Mike was trying to explain that it was the force on the stomach of filling/draining that was making him sick, but she wouldn't listen. She then orgainised him to stay in hospital overnight which was emotionally draning on him, as he had been through some rather hideous hospital stays earlier that month, surgeries, and all & all it was a stressful time for us all.
Funny though, we never thought of it that way at the time. We just got on with it. :boxing;
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I was a bit apprehensive, but it turned out ok.
It was on a big ward, with machines alarming all the time. The nurses were all joking with other and with the patients, and it all made me feel that everything that was happening was normal and nothing to worry about. And it wasn't. Dialysis for some people is worse than it has been for me, though.
The only thing I didn't like was the way you waited, outside the ward with no way of telling anyone that you've arrived, so I waited half an hour or so not knowing that I would ever get in. Though I did.
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My first day I had a panic/asthma attack and had to be taken off early. Sorry it isn't a good story!
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I was suppose to do PD dialysis but there was a surgical error made in placing the catheter so I had to start with machine dialysis. (I ended up after four months being able to PD).
My first day I cried walking into the dialysis center even though I had years to get used to the idea in my head. the nurse and techs were very kind and explained everything as they hooked me up. My husband held my hand throughout the first treatment. I looked at the first day as fear of the unknown (much like when I had to do chemo treatments). My body did not do well with machine dialysis and it was a happy day when I could finally start PD which was much better for me.
Good luck Moosemom.
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There is also this thread: Describe your 1st dialysis - with info @ advice for newbies ...
http://ihatedialysis.com/forum/index.php?topic=2179.msg30195#msg30195
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Nope, I can't do it. I just really don't think I can do it. I've tried so hard to just be accepting, but I cannot. I cry every day as I wait for my body to finally crash because I know that the rest of my life will be filled with needles and blood and pain. I just lack the courage, and the rest of you must have some well of tenacity that I don't have. I read about other peoples' experiences in an attempt to show myself that others have been through the fire and have come away intact, but that's not the sentiment I come away with. I have battled CKD for so long, and just when I need the most strength and bravery, all that battle has left me with is exhaustion, frustration and anger. I have nothing left in my arsenal. Nothing. I honestly don't know how I am going to cope with this. I truly don't know.
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I'm a bit like Aubrey - I was a bit apprehensive, but it was actually fine. The first time they only did 2 hours and didn't take off fluid and ran at a low pump speed(this is hemo I'm talking) so it was pretty gentle. They built up after that - 3 hours next, then 5 hours. The staff were very very nice, talked me through everything and invited any and all questions. I think that was very good as I am the sort of person that likes to know and be informed (even though I never look at the needles going in :) ).
MM I understand your reluctance but really when I think of D it's funny but I don't even really think about blood and needles. I think that it keeps me alive. I don't even think about pain because, in the main, there is no pain. Honestly. When things are stable you should feel nothing during dialysis. At least that is my experience.
The thing is MM you will soon *need* this process to keep you alive, so your choices are kind of limited. Try to not focus on the negatives as you see them - blood, pain, needles, and focus on what it will give you - ie: life, more stability, hopefully a better overall feeling and energy etc.
I wouldn't be sitting here writing this if it wasn't for dialysis. For that I'm happy enough.
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MooseMom, it is not courage when it is happening. It is just doing what you need to do. We all feel that way. Really. The slow road to dialysis is the longest trip. (And I've been in the customs hall at LHR the day before Christmas).
Every one of those posts were written after the fact. After our bodies stopped working the way we were used to, and after we adapted to our new situation. Going down kicking and screaming, and then just throwing your arms up, well that is what I did. Finally, with nothing left, I went. I felt like I had lost it all.
You have every right to feel exhausted, frustrated and angry. Feel it, process those emotions. You will survive this. It won't be easy, and when you write about it, people won't see the pain, the exhaustion or the frustration. The will see the strength that you can't see right now. And they will see the courage that you can't see right now. Because even talking about it is courageous.
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The hospital that put the hemo catheter in my neck, scheduled me for a short (2 hour) treatment soon afterward. They wanted to see how the catheter was working before discharging me from the hospital.
So they hooked me up, turned on the machine, and everything went fine for the next two hours. The hospital staff was courteous but not exactly bubbly. I didn't get sick or anything.
I had a problem later though. I wanted to wash up before getting dressed and leaving the hospital. But I discovered for the first time just how difficult it is to wash one's head without getting the hemo catheter site wet. I tried and tried, but I was getting more and more frustrated and angry. In the end, I had to ask a nurse to help wash my hair.
For the next couple of weeks, bathing was murder. It was only after I bought a Korshield that I could bathe systematically.
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MooseMom (I just love that name)
I see you responding to other members posts and encouraging them - you write well and you're a compassionate person. Your voice and experience is inspirational and as you walk through this there is a whole forum of people cheering you on. I am glad you can express your fear. I wish Jenna could have. She just got so sick that one day they said dialysis immediately or death in the very near future. As others have said, you deal with it as it comes.
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Customs hall at LHR or LGW at Christmas; I did that every holiday season for 18 years...with an autistic kid. That seems like a tea party with the Queen in comparison to what I perceive is ahead of me. I could use all other manner of metaphors, but CKD has also robbed me of any creative linguistic ability I once had.
Rightside, I still have the bandages on my fistula, so I have had similar obstacles re bathing. I have had to go to my hairdresser just to get my hair washed. And I've rediscovered the joys of bath oils and lovely unguents as I am limited to baths instead of showers. So, I've discovered some upsides, but I guess it is easier when you're a girl! My mom had a catheter, though, for 18 MONTHS, and I remember her experiences were a lot like yours.
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MooseMom (I just love that name)
I see you responding to other members posts and encouraging them - you write well and you're a compassionate person. Your voice and experience is inspirational and as you walk through this there is a whole forum of people cheering you on. I am glad you can express your fear. I wish Jenna could have. She just got so sick that one day they said dialysis immediately or death in the very near future. As others have said, you deal with it as it comes.
My autistic son gave me that name.
Poor Jenna...you and she must have been so very frightened. I know you both are under a lot of duress these days. I wish I had more than just compassion via a computer to offer you.
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MooseMom as you go through this please let us know how you are coping.
My first time on dialysis was with a catheter in my groin area. The doctor came in a put it in with drugs and such. A nurse dragged in a huge machine and then they hooked me up to it. It was scary and I was too sick to care at the time. I signed paperwork I had no idea what I was signing before they hooked me up to this machine. The nurses did not explain a lot to me at the time. But one of them told me three days later after my first treatment she did not expect to see me again. She did not think I would make it through the night after treatment. I almost didn't.
My first experience at in center was okay. I was scared out of my mind. I went in quietly and said nothing to anybody for weeks. Then I made a sassy comment and there the quiet was all over. My first dialysis center was more like family with staff.
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Oh kitkatz, I'm so glad that nurse was wrong!