Is this it ?

[KICKSTART]

As you know my unit went down on tues hence short dialysis session. Was i ready for yesterdays session , i felt like c***. I managed just over 3 hours and they had to pull me off. I get like a steel band tightening up around my head then i start throwing up and up and up, even when theres nothing more to throw up. Of course with having a line in my neck , it hurts like hell , the machine does nothing but alarm. I came off dreadful, went home dreadful , still feel like crap today.  WHY?  I looked around the unit as i went out and everyone else is sat there fine. WHY am i getting such a rough ride with hemo?  I read your posts , you work , you exercise , you do stuff. Me i just want to crawl into a hole after each session. Im not a stranger to dialysis as well you know but i can honestly say , ive never felt half way decent on hemo. Its getting me depressed, i want at least have half a life to enjoy , otherwise whats the point in doing something that just makes you feel so  .  I would love to feel somewhat like my old self again , i really would !

[RichardMEL]

*huggles* (tm poppylicious) KS.

I don't know why you are having such trouble. What is disappointing is that they can't seem to find a solution that helps you!!! I hate to say it but for the vast majority (I would say >95%) of people I've seen come through my unit in over 4 years, sessions are dull and uneventful. Yes, we have the odd bump in the road, but in general the worst part is sitting there for 5 hours unable to move (ie: uncomfortable).

I SO wish you could get sorted out. If you didn't have these problems I'm also certain your interactions with the staff would be much better too.

[MooseMom]

There are answers to all of your questions, but I don't know what they are, and I have to wonder if anyone in your medical team is bothering to look.  If you were to read your post to your nephrologist, what do you think he would say?  Surely he would take a step back, take a long look at you  and think, "This just isn't working for my mate Ricky G...we have to sort her out."

I just can't imagine having to go through life like you are right now.  It is clear that hemo is not working for you...something is very clearly wrong, but I don't know what it is.  I would hate to see you have to fight depression on top of everything else, but I am afraid that's exactly where you may be headed.  I don't think anyone could feel like hell every day and NOT fall victim to dialysis.

Seriously, bottom line, what does your neph say?  Why do other patients in your unit feel so much better than you?  Ask your neph, "Is this is?" and see what he says, and please come back and tell us because I wanna know.

[KICKSTART]

   Ricky G    .... sadly i cant just see my neph like that , i get the honour of seeing him once every 3 months!  I have tried several times to approach different nurses (that i think are knowledgeable enough) (some are thick!) Their usual answer is yeah gimme 5 mins , then ,ive just got so and so to do and on and on till then end of the session , then i get i havent time now everyone needs taking off. If i do get a chance all ive got is a shrug of the shoulders and ....yeah people do find hemo alot harder when they have done pd for a long time.  I was brilliant on pd , loved it , if thats possible.

[billybags]

KS, I really feel for you kid, what the hell are they playing at. I would have thought by now they would have every thing under control. How long has it been since you went on to hemo? it must be months now. Have you tried to get in touch with your neph instead of waiting 3 months. This should not be happening all the time. Thinking about you.

[okarol]

It sounds like they are trying to pull too much off, too quickly. Were you holding much fluid? Is there no option to do nocturnal?

[Poppylicious]

KS, can you insist (in a nice way!) on getting your neph to see you whilst you're on dialysis (if you dialysise at the hospital)?  I know Blokey has done that a couple of times.  Failing that, insist on an appointment before the regular three month touching base one. 

I really feel for you too.  Blokey comes home with stories about how horrid it can be sometimes, but on the three (yes, only three) occasions I've been with him the most exciting thing to happen is that the greedy guts in the bed opposite farts all night. 

I really hope they can pull their fingers out and get you sorted soon.

*huggles* (proper Poppylicious ones, not fake RichardMel ones  )

[MooseMom]

Could you perhaps see your GP?  I know that might sound stupid, but could you start there and tell your GP exactly what you've told us.  Could the GP then give you a proper referral to your neph for an appt in less than 3 months time?  I know this is sort of an end-around, but this situation is intolerable and you deserve at the very least a proper appt with your consultant.

[RichardMEL]

(just hyjacking this thread on a temporary basis...)

*huggles* (proper Poppylicious ones, not fake RichardMel ones  )

oi!!! I could never do your huggles, I am made kind of differently, but I've never had complaints about my huggles!!! 

[sullidog]

Can you call his office? If he doesn't wanna see you then time to find a new neph.
Troy

[RightSide]

KICKSTART,

I'm really sorry to hear you're having such trouble.

You should discuss this with your neph, or at least with a nurse there.  Ask them whether anything can be done.

How much fluid are they pulling off at each session?  I have found that by cutting my daily sodium intake to around 900 mg/day, fluid management has become much easier.  It means eating a rigidly planned diet--but I prefer that to getting sick at each dialysis session.

[Genlando]

I used to have horrible cramps during HD when I started earlier this year. This would happen if they had to pull as little as 2 kilos of fluid off me at one time.  The only suggestion that the nurses and techs offered was that I needed to cut back on my fluid intake.  I eventually found the Operators Manual for the dialysis machine that they use at my center.  I was astonished that the machine has many features that can prevent patient discomfort during HD.  However the employees at my center either don't know about these features, or were too lazy to use them. 

Some dialysis machines have multiple Ultrafiltration profiles--which determine how excess fluid is pulled off the body.  Ask the tech's to try some of these.  Or, they might be able to run part of your treatment time as "Ultra-Filtration Only".  This pulls a maximum amount of fluid without cleaning the blood.  They can resume the regular cleansing after all the excess fluid is removed. Your dialysis machine may also be able to do sodium ramping.   Sodium ramping (or sodium profiling) is where the machine proactively increases the amount of sodium in the dialysate at the beginning of the run, and gradually reduces it toward the end.  This significantly reduces the amount of discomfort for many patients.

I'm still a newbie to the whole dialysis scene.  However, I've already learned that the majority of employees at the HD centers don't give a damn about their patients.  They won't lift a finger to make our treatments more comfortable.  That's when I decided that I had to learn all I can about the process, and then FORCE the employees to treat me right.  If your nurses won't help you, complain to your center director.  Take your complaints higher up the ladder if you don't get satisfaction. 





 

[Poppylicious]

Oooh, I actually like MooseMom's GP idea.  I forget how amazing our GP is and how angry(-ish) she was with Blokey for not going to see her and ending up in hospital last year, when she would have referred him immediately.  Go and see your GP!

(just hyjacking this thread on a temporary basis...)

*huggles* (proper Poppylicious ones, not fake RichardMel ones  )

oi!!! I could never do your huggles, I am made kind of differently, but I've never had complaints about my huggles!!! 

*chuckles*

 

[KICKSTART]

WOW to reply to all of you would probably take up the whole forum ! While i DO appreciate your comments and suggestions , many do not apply. Here in the UK we cannot see our neph 'on demand' and would never be able to ring him! You can ask for an earlier appt than 3 months but usually get told ..yes theres a lot of other people need to see him as badly as you ! Besides that, he is just a 'tick the boxes man'. I want advice from someone who is hands on ..hence asking on here.
I have been doing hemo for 12 months now , so time is not the issue. As for diet/fluid ,all under control there.
I am quite clued up on the machine , i know what gives me the 'best' results, if you can call them that and the nurses respect me enough now to leave me in control of my machine.
All my problems stem in the last hour and the only thing i can bring it down to is my bodies chemistry?  I am quick to get rid of fluid and quick to refill.
I can get my BVM down to 89 in half an hour and it takes me 40 mins to raise it again to 95 and so i end up yo-yo ing my machine (more or less doing it manually than relying on a profile) I did profile 3 for a while which worked great , till again the last hour , it then started to pull and there was nothing there to pull , so again i come off feeling crap.  If i dont take myself to the very extreme (i finish dialysis around 6pm) by 10 pm im full again as it transfers from my tissue into my blood stream.
The only other thing i was told once by one of the nurses was that a guy who had done pd had the same problem and it took him 18 months to get all the fluid out of his tissues and into his bloodstream. Again being told us ex pd patients like to hold on to the fluid in our tissues.
Thankyou for all your suggestions , i guess im the one in what ? 10 billion ! that hemo doesnt like ! 

[Pam]

I've been on D for 19 months. After the first month I have had no problems. My worst trouble was nasty headaches but that took care of itself once my dry weight was worked out. My dry weight has only changed by .5 in all this time and I do have buttonholes.
When do you get a fistula? Once you start using a fistula you will get better clearance and that may solve some of you problems.
Pam

[gothiclovemonkey]

*hugs*
I feel your pain. I have been doing hemo since 07, and had a very short trip on PD(2 mos) and loved the pd, i felt a little better, and loved the freedom. It didnt work out, made me very sick... So the dr decided i shouldnt try again.
Im back on hemo, back to feeling miserable every damn day. The day I have dialysis, i leave feeling drained, body aching, nausea, weak, throwing up, diareaha, constantly, its terrible, i cant sleep either, but need to lay down, so its boring lol theres really no upside, my bloodwork seems ok, save for the protien isnt quite high enough, i rarely have too much fluid on me when doind hemo, my dr is an idiot and wont help me ever, and i have a 6 year old that wants to play and do this and do that, and i lack energy to do anything, makes me feel like a terrible mom on top of it all....

Things that help me:
Knowing my son needs me, knowing if i lose the weight i might get a kidney one day, knowing im 26 and thats too young to allow myself to die, knowing there are people out there who have to deal with alot worse so why i am being such a turkey about it all,
also im in therapy once a week lol they are talking about medicating me (like i dont already take a billion)
It is very hard thing to deal with, when it does make u feel so nasty, you start thinking, quality or quantity of life.
I hope that things get better for u. For all of us.

[Riki]

Kickstart, how long is your treatment?  If eveyrthing seems to happen in the last hour, perhaps you don't need to be on as long.  My treatment went from 4 and a half hours to 4 hours when my line came out.  There are a few in my unit who are 3 hours, and one girl who won't stay longer than 2 and a half.  She comes off early every time, but then she is also 25 years old, 3 and a half feet tall, and is lucky if she weighs 90lbs. I'd try coming off a half hour early and see how you feel, just to see if it helps

[MooseMom]

I lived in the UK for quite some time, so I do understand that a patient doesn't just call up the consultant's office for a quick appt.  That's why I thought you could speak to your GP.  I know your GP doesn't specialize in nephrology, but he can perhaps offer a different perspective and may be able to steer you to someone else who can help.

You seem to be very well versed in the workings of your own body and your machine, so what is your gut feeling about what might be the problem?  It does seem that there is the seed of an idea that's forming, ie your body seems to get rid of fluid quickly and then quickly refill.  If this is what is indeed happening, how will your dialysis treatments be tailored to meet your needs?  Are you one of those people for whom in-clinic 3x dialysis is worthless but for whom daily short hemo would be much more appropriate?  I do seem to remember Gordon Brown, toward the end of his tenure, saying that the NHS was in talks with NxStage; is this worth looking in to?  I know it doesn't help for tomorrow or the next day, though.  But since you felt so much better on PD (which is daily dialysis), maybe this line of questioning might lead you to an answer.

I'd enquire further about the PD patient your nurse mentioned..there may be a clue in his story.

[romanyscarlett]

I really hope you get this sorted out quickly as it sounds terrible.

How does your neph's office work? I live in the UK too and where I'm treated there is one top neph who leads a team of 5 or 6 others. Luckily for me they are all wonderful and I have phone numbers for the 2 that I see most regularly and I can call them at any time. If they're unavailable at the time of my call then I leave a message and I always get a call back the same day.

If your renal department is run in the same way with a team of nephs then could you ask to see a different one? You're entitled to ask for this under the NHS and maybe you'll get someone who can help you more than the person you see already. You do not have to keep seeing the same "box ticker" if you're unhappy with the level of care you are receiving.

[RichardMEL]

I can always email my neph and he is reasonably responsive (for a bloke that runs a university medicine faculty AND several hospital departments I reckon that is great!!) so I can usually just send him say a monthly blood result that is worrying me and ask about changing some meds or something. He might agree or not, and he copies the dialysis manager so it's known to definitely be a doctors order, and away we go.

KS didn't you say you're in a hospital unit? Why couldn't they page the renal registrar on duty to see you? I mean.. come on?!!!

[KICKSTART]

No sorry RM , its a nurse lead unit (no doctors here!) Our neph comes over once every 3 months. Wow, i cant believe you people have nephs phone numbers etc , mine hardly gives you the time of day (which just makes me sit there even longer! when it my turn.)

MM.. You seem to get the jist of it and ive often wondered if daily shorter spells would be better ..not a cat in hells chance of that happening though.  4 hours its stated ..4 hours it is !  NXstage is not over here yet , but i wouldnt qualify as i live alone and they would consider it too high a risk .

RS .. you are in the UK and can ring a neph ?  blimey !  I have a choice of 2 nephs ..thats it !  The one im with and as for the other one, well i wouldnt take my dog to him ! .He was once covering for my neph ,while he was on hols. I have never met this guy but he took it upon himself to change one of my tablets , which if he had read my notes would have found out i couldnt tolerate. I refused to take it again and said to the nurse ..does he diagnose/prescribe by telepathy then ?  Because he wouldnt have know me if he fell over me !

Its always that last hour that gets unbearable and when things go really wrong , i once asked to come off just at the start point of all this ..and i recovered pretty much straight away. My neph will never agree to it  because im of say, 'standard height and weight' its 4 hours for me .

[kamar55]

Hey Kickstart....I know what your're going through...similar to me....I've been on hemo 5 years and still feel like crap afterwards, some sessions worse than others.  I can't imagine having to work while being on hemo. I, too, have looked at the other patients and would say that 95% of the time, if there's a problem during session, it's with me. It usually happens during last hour when my bp will suddenly drop to 60/30 or lower. Then I usually "see spots" and if I don't get a hypertonic immediately, I'll start retching and pass out. I used to be on the profile where they pull more during the beginning of the session, but they stopped it because once after only 5-10 min. on the machine, I passed out. I'm relatively good at my fluid control, but as time goes on I seem less able to pull as much as I used to. The main thing for me, as a diabetic, is keeping my blood sugar in check. Otherwise, my thirst is uncontrollable and I could easily put on 6+ kilos. I just do the best I can and hope the session goes ok. A good day is when my bp doesn't drop and I get off all the fluid I gained. Even then, I still feel like a "lump" when I leave. And just when I start feeling a little like my real self, it's time to go back to hemo. I control what I can and what I can't....so be it. That's all I can do......

[MooseMom]

Its always that last hour that gets unbearable and when things go really wrong , i once asked to come off just at the start point of all this ..and i recovered pretty much straight away. My neph will never agree to it  because im of say, 'standard height and weight' its 4 hours for me .

I am the first to admit that I am not au fait with all of the nuances of dialysis, but this statement, Ricky G, seems to hold a clue.  Call me thick, but I have to ask why they insist on running you that fourth hour when it is that fourth hour that it all starts going pearshaped.  I know...that's what the neph says, but that's not an answer, that's an excuse.

If you had a more intellectually flexible neph and he agreed to run you at, say, 3 hr 15 minutes for three weeks, what do you think the result would be?  Is it really impossible to experiment a bit with your time on the machine?  I don't understand why your neph has to be so bloodyminded unless he is just a lazy toad and can't be bothered to remember that your treatment should be based on more than an equation.

[romanyscarlett]

They can't force you to have 4 hours treatment. It's your body and ultimately it's your decision.

There is a woman at my unit who will only do 3 hours and she refuses to negotiate on this. She's been on dialysis since she was a child so she understands all the ins and outs of treatment. She seems to be the happiest out of everyone I have treatment with. She has a full time job, a great relationship and regular holidays abroad. Best of all, she always has a smile on her face. She's of average height and weight and if 3 hours can work for her then maybe it can work for you.

Last week I had a horrible cold and I said I only wanted to do 3 hours so I could get back to my bed. The nurses said it was my choice as to how long I was on the machine for but that I would be going against medical advice. I think that was just to cover the legal side of things just in case something happened to me by coming off early. It should work on the same basis for you. They can advise you that their recommendation is 4 hours but they can't make you adhere to it.

[gothiclovemonkey]

They can't force you to have 4 hours treatment. It's your body and ultimately it's your decision.

This is true, but it makes u a non compliant patient, which could hinder getting a transplant, at least thats what my dr says to me