I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Dragonfly on April 17, 2013, 01:29:46 PM
-
Went to dialysis today, it went better I guess raising my dry weight was a good thing.
This center is crazy where I am, today there was some big meeting of staff, taking almost everyone off the floor. There was one nurse and two techs for 20 people. They removed one needle and when hold time was done, they just kept walking past me. For ten minutes I sat there waiting to have my second needle pulled, then finally I said out loud, does someone want to show me how to pull my needle, I will do it myself, I have been sitting here waiting ten minutes and the nurse gave me a nasty look, so I said well I have.
It's crazy they think because we need dialysis to keep us healthy and living that they can do what ever they want. I want to report this, because this is not the first time this happen. Should I?
-
Absolutely, you should report this to the administrator of your center. Let him or her know that if they can't pull your needles in a timely manner then they should teach you how to do it. You can pull your own needles should you chose to learn. This is one thing I did not like about in-center like you don't have a life after you dialyized.
:Kit n Stik;
-
No doubt about it NxStage or PD is the way to go. The freedom is something you don't get in-center. No to mention how much better you feel after doing home dialysis for a while.
-
how come they didn't pull both your needles at the same time.. I'd hate to sit there for a half hour just holding.. 15 minutes holding is hard enough to do
-
Absolutely, you should report this to the administrator of your center. Let him or her know that if they can't pull your needles in a timely manner then they should teach you how to do it. You can pull your own needles should you chose to learn. This is one thing I did not like about in-center like you don't have a life after you dialyized.
:Kit n Stik;
Thank you
-
No doubt about it NxStage or PD is the way to go. The freedom is something you don't get in-center. No to mention how much better you feel after doing home dialysis for a while.
Thanks for responding to me.
I am looking into the home dialysis, I just don't know if I can stick myself with that big needle, when I was doing PD at home after a few months of sticking myself with my epo I couldn't do it anymore. When I did do PD, my catheter grew into my fallopian tube and the dr. said I can't do it anymore.
-
how come they didn't pull both your needles at the same time.. I'd hate to sit there for a half hour just holding.. 15 minutes holding is hard enough to do
They don't do that at my center, they pull one, then I hold for ten and then they pull the other and I hold another ten. I don't mind I just watch tv. Besides I am a bleeder.
-
No doubt about it NxStage or PD is the way to go. The freedom is something you don't get in-center. No to mention how much better you feel after doing home dialysis for a while.
Or just home hemo period, doesn't have to be NxStage. Not everyone on home hemo does NxStage though most seem to think it's the be all and end all of home modalities.
(Not directed at you, Bill, just a reminder is all. I feel like a red-headed stepchild around here sometimes 'cause I seem to be the only one with a Baby K and no one can relate.)
-
I get a little frustrated when it seems like the answer when someone has a problem is do home hemo. It happens on thread after thread. I know some of you love it. Not everyone can or wants to do home hemo. And it should not be the only way to get decent care. We deserve decent care for all modalities. Cdwbrooklyn is right. Report it to the manager and see if they can fix things. From there you can make informed decisions about your treatment.
-
I get a little frustrated when it seems like the answer when someone has a problem is do home hemo. It happens on thread after thread. I know some of you love it. Not everyone can or wants to do home hemo. And it should not be the only way to get decent care. We deserve decent care for all modalities. Cdwbrooklyn is right. Report it to the manager and see if they can fix things. From there you can make informed decisions about your treatment.
Well, don't you think perhaps there's a very good reason home hemo is suggested "on thread after thread"? And that maybe those suggestions are backed up by cold, hard facts?
Look, I know home hemo is not for everyone. Some have limitations or fears they simply cannot overcome. Some don't want to 'medicalize' their homes. Some live in the US and have no partner. I get that.
I also know there are those who manage to get very good care in-center. But that is not the norm, not by a long shot. If it were there would be no reason for IHD to exist. "Should not be" the only way to get decent care and "Is" the only way to get decent care are galaxies apart. You don't have to do anything but cruise around these boards for a while to figure out that fact.
We are living in an age where ignorance and mediocrity are held up as the gold standard and incompetence has been raised to an art form. Unfortunately that seems to be particularly true in the case of the medical field, rather than less true. Everyone knows how pissed off a tech gets when you simply ask them to put on gloves or a face mask. Can you imagine what would happen if a patient were as vigilant and vocal as they ought to be? (As I was my short stint in-center. It wasn't pretty.) Do you think every tech and nurse is going to say, "My goodness, you're right, I didn't change my gloves. Thank you for pointing that out". Everyone who's gotten that response please raise your hands. The point being, there are ten thousand different ways these people can make your life miserable, up to and including killing you. And that's only taking into account incompetence and indifference, not retaliation or malevolence.
I will never stop suggesting home hemo to newcomers, not because I think it's for everyone but because the vast majority of new patients are simply unaware that home hemo is 'a thing'. The techs and nurses in-center don't have the time for it if they even know it exists themselves. Hell, there are nephs who have never heard of it, particularly nocturnal. Where are people supposed to get the information except on their own? If they've managed to make it to this site of course I'm going to encourage them to educate themselves and speak up for themselves. But I'm also going to educate them on the benefits of cutting out the middleman and doing it themselves at home, and all the myriad benefits therein.
I have my life back. I have my health back. I have no restrictions. You can count me as one of those "who love it" and for damned good reasons. If I can educate just one person about it and they then go on to regain their life and health as I have, words wouldn't be able to describe how wonderful it would feel to know that.
-
Educating is one thing. I think we've gone too far. It has turned into bragging about how much better your lives are than everyone else. I think we're at the point where it can make people on in-center feel like their inability to do home hemo is a failure. A failure in taking care of themselves when they can't choose that. I'm just asking people to think about this a little. Are we educating or trying to influence? Are we being helpful? Maybe the person needs advice on how to solve in-center problems more than advice on leaving the center. I just want people to consider the situation and think carefully about what that person is asking. That may be an unpopular position but it's what I think.
Personally I can never do home hemo for various reasons. I was lucky and got a transplant. I did 6 months of hemo and 2 1/2 years of PD. PD was starting to not work as well. I would have had to go back to in-center. It is what it is.
-
I agree with Jeannea. I'm one of those people who cannot do home hemo, even if it were offered here, which is isn't. It does seem that whenever someone complains of how they're treated in centre, the solution is to go to home hemo, when really, a solution should be to have someone to speak to at the centre about any grievances..
-
I'm with Desert Dancer.
It's a matter of educating people that home haemo exists and then giving them support for it. It sounds to me that sometimes people in the US are not even aware, or given the choice, of doing PD. IHDer's who do manage home haemo successfully should get the message out - it's possible, it's not to be scared of, it gives more freedom, and it's better for you. Some people will not be able to do it for various reasons, but that doesn't mean that it shouldn't be discussed and recommended enthusiastically by successful practitioners.
In Australia, home haemo (even without a partner) is regarded as the 'gold standard'. PD is preferred over in-centre HD if the person is suitable. And our in-centre HD is much preferable to in-centre HD in the USA. We are treated to bring the healthiest outcome for patients, rather than the cheapest cost for the providers.
I must admit I have qualms about doing home haemo myself, but John Agar's web site and this discussion board are both beginning to convince me that I should be able to do it. I read all the posts about home haemo thoroughly with the idea of that being my option after PD.
-
Educating is one thing. I think we've gone too far. It has turned into bragging about how much better your lives are than everyone else
It isn't bragging if it's the truth. It's also true that I rarely post here anymore and one of the reasons is: I don't want to sound like I'm bragging. I make an effort to read people's intros and posts before I respond to them to make certain they haven't already stated it's not a possibility for them. So I'm sorry that's the way you take it. I will not apologize for telling the truth about my experience.
-
Yes, everyone deserves the best treatment possible - but 3x weekly is NOT optimal, and is NOT as good as EOD (Every Other Day) or short daily. Google a bit and you'll find countless journal papers confirming this.
One has to get past declarations of "what one deserves" or "how the system should work", do a realistic analysis of how the system DOES work, and then devise a strategy for the best treatment. My strategy is to start home hemo training as soon as the fistula is ready, and probably go with Baby K EOD nocturnal.
-
I do understand everyone’s point a view; however, I think we got so involved with enjoying Nxstage that we became insensitive to our fellow in-center patients. For that, I sincerely apologize. I know how it feels when someone is throwing something in your face over and over again and it’s something you cannot do or have no desire to do. It can be very frustrating. Going forward, I will not suggest someone do home hemo unless someone ask if I know of another form of dialysis. I don’t ever wants to come across as bragging unless we are in a challenge for bragging rights. Anyhoo, I was in-center for 11 years and it really hurt when someone came in and starting talking about their new kidney knowing I was not able to get one. It made me cry over and over again and for this reason, I do not visit my former in-center because I don’t want to put anyone through that. So I do understand where Jeannae is coming from. :cuddle;
Just my two cents. 8)
-
So then what are we supposed to do? Design a litmus test for IHD membership?
"Sorry, you're not sick enough/miserable enough so your dialysis experience is not valid and we don't want to hear from you"? Really?
Maybe it seems as though it gets repeated over and over again because - in case no one noticed - we get TONS of new members every week and they all ask basically the same questions and the answers don't change: educate yourself, speak up for yourself, take it home if you are able and willing. It is not my fault or the fault of any other home patient that taking it home IS the gold standard in this country. That's just the way it is and I don't see that changing as long as profit is the motive instead of health.
I don't see anyone bragging here or lording it over those who are in-center and I never have. You'd really have to be a special breed of asshole to do something like that, and yet that's what I and other home patients here have just been accused of, simply for sharing our relatively good experiences and encouraging others to look into going home.
If I can't share my experience without being called a braggart then maybe I really don't belong here. Let people go into the archives if they want the info, I'm done.
-
Wow, I just popped on here and read all of this. I just wanted to say, I loveNxStage. Wish I had known about it when all this started with John. Even if it was an In-center type dialysis he was getting, We are so Blessed to be at home doing it! We are home people and will always be home people.
In saying that, I do advocate "Passionately" for NxStage particularly, yes even over PD and it was a good one too. And I hear the PD IDHer's talk about how wonderful their D. is, it doesn't upset me one bit. I don't get upset with those who do In-center either, but John has done them all, and we/he is very happy with NxStage.
Maybe, in my passion for this modality, I may sound like Im bragging, well Im sorry. I tend to brag about things that are special to me. I brag on alot of things. Im sure there are a number of people who get tired of my Bragging about Jesus too, (Im not going to stop that for sure) but they may voice their opinion, and that is fine with me.
I, like DD, know home dialysis is the best thing going now, because of the better care people are getting not only physically, but mentally too, if for the simple fact of being in their own environment.
I realize that some are not able to do this modality at home for various reasons, and rely totaly on In-Center for their care. There are some good centers out there Im sure, but John went to different ones, and both did D. him, but they do the best they can do because of overload in the clinics. Look, I don't mean to get carried away with this dialysis at home, but please, if you can't do it, don't keep us from being happy about it. Or maybe we should squealch everyone on IHD from discussing "Any form of Dialysis- even In-Center (the good ones)" or Transplants, maybe we should stop them from bragging about that too.
Iam happy for anyone who has found a better way than I. I think of them as being Blessed, when maybe its something we cant experience. I will continue to "Push" Home D. to up & coming new members. If I say something offensive, then Im sure I will be repromanded by the moderators.
Ill just try to not be so "jubilant" about it! When it works superbly, it is so hard not to.
God Bless,
lmunchkin :kickstart;
-
Hi everyone! I know its been a while since I have been on here things have been pretty busy for me.
I totally understand everyone's point of view! I personally am an In-Center Hemo patient. this Nov. will be 8 yrs doing this fun stuff. Now I have a toddler at home so I personally prefer to stay in-center, But if your going to stay in-center you do need to speak up if your not happy & let people know how you feel! My in center takes care of me very well but I also help myself when its time to leave as far as getting Bp's or taping up my arm, etc. You def. need to speak up though if your not happy. Hope things turn around for you! Best of luck!
-
It has been pointed out frequently that this discussion board is mostly used when people are 'down'.
Should people who are happily on PD not recommend PD, too? Just because someone is successfully and happily using one particular mode of dialysis, they should BRAG loudly for the benefit of everyone else - not because they are smarter, but because they are showing their way might be worth considering and may be possible for other people.
Desert Dancer - don't abandon us. You are one of the people who have convinced me that I could do home haemo when the time comes along with Cebu Shan, and Angiepkd and many others. Please 'brag' on!
-
Two cents from a newbie: I really have appreciated the range of expressions and experiences which ALL of you have described. I don't know yet whether I'll have to go with any sort of dialysis - maybe I'll get lucky and a preemptive transplant will work out. But I do know how much all the info here has meant to me. And for home hemo in particular - I've had a couple professional care givers here (rural South Dakota) say they've never heard of it! If the transplant option doesn't work out, I may have to take whatever my insurance and the local provider know about. So, I really, really want to know the good, bad, and ugly about all the choices - so I can make the most of whatever I've got to do.
Thanks so much to everyone for everything you've posted about your treatments.
Cheers,
skg
-
I don't think anyone was bragging, I mean, I'll sing the virtues of PD if I think the information is helpful in that particular situation. It just seems that lately, with every problem with in centre, the solution seems to always be home hemo, when maybe better advice would be with how to deal with hostile or negligent staff members
I loved PD, and was on it for years, starting from when I was 12 years old in 1991, and if I could go back to it, I'd jump at the chance. I'd also try home hemo if I was able to do so, and if it were available in my province. I just don't think that home dialysis is the be all end all solution to problems with in centre dialysis.
-
And you are right Rikki, Home dialysis is not the end all solution to problems with in-center dialysis. I really do not know what the solution is for In-centers now days. I know that I hope he never goes back, unless I become unable. If places don't offer home dialysis, that just can't be helped. Hopefully, all places will one day offer it. But you still have those who depend on in'center for their dialysis. That is fine, they can still live. They won't have to worry about storage or learn how to cannulate or what the numbers mean. They can just lay there and let the Professionals take care of them. I get it, John did it, and we are cool with that if that is what has to be.
But John will tell you, He feels alot better on Home Dialysis. PD or Hemo. PD cleaned him about like in-center did, maybe slightly better, that is probably due to doing it more often. But Hemo at home has made a world of difference. Slower & longer & more frequient dialysis is the contributor for that. But being at home definately helps.
Im not saying that those who do in-center are failures or stupid or anything like that. I push home hemo because it made a difference in OUR lives. Doing things on our own terms is basically the reason we switched, but having him feel much better is a plus. I wish all could have huge homes with caregivers to help them do D at home! To at least see the difference it makes. You are still on the machine. That doesnt change and will not change! But being in your own environment helps emotionally, and that can be as important as the physical.
Yes, I realize that John & I are Blessed to be able to do this at home. We are so greatful! I still believe that doing Hemo at home is the Best all around whether short daily or nocturnal. I would not do nocturnal in-center either, now thats just me, but I would do Nocturnal at home. Let my home be the center. I can take care of my John. I don't want him In-center or in a nursing home unless I am not capable period. At least he has me, lot of you don't. But for what ever reason, I can't help but "Brag" on NxStage. Im not going to apologize for something that has improved our lives!!
I know that I have jumped in when I hear of some In-center drama going on and suggest NxStage! I don't like the In-center experience at all. It sucked for us, it really did! I realize there are some good caring centers out there, but you are still just getting adequate D. That is a fact, unless you do nocturnal in center. They have a lot of peoples they are responsible for, so they have to get them in & out for the next individual. I only have one to worry about. I couldnt be a D-Tech in center. Too much to be responsible for. What if I goofed and someone died on my watch while tending to another person? Naw, I stick to caring for my man while I can!
Yes I Brag alot about NxStage, and folks, I probably will continue to. Its not meant to make those In-center feel bad or stupid cause they dont go home to D. They have their reasons, Im sure there are some circumstances there. But It saved John's Life & our marriage and being In-Center helped us to realize that!!
God Bless,
lmunchkin :kickstart;
-
The main point is that each patient needs to educate themselves about the options, and not expect the professionals to tell all the benefits/risks/tradeoffs of various protocols. Although I have received nothing but positive support for my plan to take it home (after the fistula matures and I get off cath), I can't help but wonder why 100.00% of the existing hemo patients at the clinic I use are in-center customers. \\
If you want home hemo, you may have to push for it rather than wait to see if it is offered to you.
-
If you want home hemo, you may have to push for it rather than wait to see if it is offered to you.
When i say it's not offered, I don't mean that it hasn't been offered to me, I mean it's not available for anyone in the province I live in. I don't believe that nxstage is available in Canada either, but I could be wrong there.
My opinion stands, I don't believe home hemo to be the be all end all solution to problems in centre. Sure, it may help for some things, but for others, just a little advice on what to do when you are being treated by a hostile staff member might be more prudent.
Also, just because I am in centre, it does not mean that I just lay there and don't take an active role in my own care. I know what the numbers mean. I ask for my labs every month so I can keep an eye on things. I watch the nurses, and I rarely allow them to do anything without telling me what they are doing first. I don't put my own needles in, because of my eyesight, but if I did have proper eyesight, I'd learn how to do it.
And yes, lmunchkin, I took offense to what you said.
But you still have those who depend on in'center for their dialysis. That is fine, they can still live. They won't have to worry about storage or learn how to cannulate or what the numbers mean. They can just lay there and let the Professionals take care of them.
-
Wow, did this get out of hand.
Im not saying that those who do in-center are failures or stupid or anything like that.
When you say that they can just "lay there" and one of the bonuses is that they won't have to "learn how to cannulate or what the numbers mean" you are implying laziness, and yes, stupidity. We have a few members who are or were in-centre, cannulate themselves, know everything about these machines and what the numbers mean, and lead full, active lives. It is offensive to suggest that they must not want to learn or be proactive in their care and that they can "still live" but should not expect more than that bare level of existing. Aren't we about helping people get the best quality of life they can given their individual circumstances?
I understand what DD is saying and I agree that providing education and information is the goal of IHD and that should never be discouraged. I can easily imagine that she was a force to be reckoned with during her short time in a clinic.
However, I think Jeannea had an excellent point - take into account what is being asked. I think mentioning home dialysis is almost always appropriate, but as this discussion gets more heated it is starting to read as mean-spirited. I took Jeannea's post as a request to think about how you come off when you reply to a question about in-centre dialysis and the answer simply "don't do in-centre dialysis". I did not take it as chastising anyone in particular, accusing anyone of anything, more just an observation/frustration that she thought would be worth bringing to everyone's attention. I have to say that if someone had a problem with in-centre dialysis and my response was "get a live-donor kidney transplant" ('cause, hey, worked for me) then I imagine the outcry would be swift and fierce. Personally, I try to be careful about when/if I bring up my own experiences, and I know I've made mistakes on here. It's all part of the learning process at IHD - not only learning about renal replacement therapy but learning how to be helpful and supportive with people who have not been as lucky as I've been.
There has been excellent information about how to address in-centre problems - some of Meinuk's posts come to mind. While I hope to never need this information, one never knows and I'm grateful it's on here.
-
I must be feeling super sensitive or something today because this thread has made me cry.
I am appalled at the very notion that anyone would think that someone else was bragging about their success on one particular modality.
What has always concerned me was the idea of leaving others behind. When I was doing my own research into which modality might be best for me (and I spend literally YEARS learning and planning), I decided that home hemo might be best for me. I don't know why, but what really bothered me the most was the image of all of those dialysis patients "left behind", those who had to stay in-center for whatever reason, those who had no choices, those who might be doomed to poor treatment because they were stuck in-clinic.
Someone asked me once after I received a transplant if I felt guilty that another person had lost their own life and I had benefitted from that. No, I didn't feel guilty because of that, but I did feel guilt that I got a lucky break while others will never even get the opportunity to just get on the wait list. I felt, and still feel, bad for all of those who get "left behind."
The truth is that the vast majority of dialysis patients get their treatments in-center. We should all be advocating to make sure they get the best treatment possible from techs, nurses, nephs and CEOs. In-center D is the default position, and none of us know when we might require in-center D. PD might stop working for some of us. Home hemo might not be possible for a short while because of an illness or other problem. Maybe your care-partner has an accident, or if YOU are a care partner and something happens that requires your loved one to spend some time in center, then I'm sure you'd want to make sure that in-center D is truly a safe alternative.
In our efforts to make D bearable, we have to make sure we leave NO ONE behind lest one day WE are the ones left forgotten by the wayside.
I hope I've made sense. I'm feeling a bit incoherent today. :P
-
But MooseMom, I don't feel "left behind" because I do in centre dialysis. I'm in no way passive in my treatment. Nothing is done without my say so. I decide where the needles go (I have 3 available sites and one more developing), I decide how much fluid is taken off. If I don't feel well halfway through the treatment, I decide if I should come off and go home. I watch the machine, and I can alert the nurses if there's a problem with the pressures before the alarm goes off. I don't in any way feel that I get poor treatment because in centre hemo is all that is available to me. Would I try other modalities if they were available to me? Sure, if I thought they'd be beneficial, but the notion that I or others on in centre hemo are lazy or are getting inferior treatment simply because we are in centre is offensive.
-
Riki, I'm REALLY glad you are such a good self-advocate and have so much control over your treatments. You are the poster child for good quality in-center hemo.
I in no way think think that anyone who does in-center is "lazy". That never occurred to me! But I DO suspect that a lot, if not most, of in-center patients are the sicker patients and may not be well enough to watch for trouble or hear alarms. These people are so very vulnerable, and it is THOSE people that I feel may be "left behind".
I guess I was speaking in general terms, and I see where that can be offensive to a patient like yourself. I apologize for that!
I watched my mom on dialysis for 5 years, and she never "took control" over her treatments. She was offered nocturnal hemo at her center (Davita was starting a new program, and the new head of that dept was looking to recruit suitable patients), but the head nurse said "no" to her. I tried to get my mom to find out why, but she never did. I think her heart was weakened by conventional dialysis, and I am left wondering if she had been allowed nocturnal, then maybe she'd still be alive. She wasn't lazy, but she WAS passive. But I think she also felt overwhelmed and frightened and depressed, and when you are in that sort of state, it is probably much easier to let someone else take the reigns.
It's really reassuring to hear from in-center patients like you who are happy with their treatment! Thanks so much for reminding us that in-center hemo can be a suitable modality, especially when the patient is allowed so much control!
-
In Nova Scotia and Prince Edward Island, there are only 3 options for people with kidney failure; PD, in centre hemo, or transplant. At lot do hemo first, then go to PD, and most of the newer patients can't get transplants simply because there's a backlog of people waiting for workups to get on the list. There is, however, a handful of people, like myself, who only have one choice. We're not all sick, in fact, most of us are quite healthy and do very well on hemo. A few even work full time. About half of us are under 60. Some put their own needles in, some do their own charting. There is one girl who has a line and will not let any of the nurses do any of the work. There are a few who are more ill, but not many. Maybe that's something that's unique to Charlottetown, I don't know, but the concept of only the sickest patients being on in centre hemo doesn't make a whole lot of sense to me
-
I may be wrong on this but on this quote "They won't have to worry about storage or learn how to cannulate or what the numbers mean. They can just lay there and let the Professionals take care of them." I saw it as a lovely thing...Not as saying something bad AT ALL! . I think it's on of those things as to 'where' you put the empfasis on. I heard it completly different from the rest of ya here and though i can see where your commen from, I dont think it was ment at all like that. If it were me and not hubby,, i honestly am pretty sure i'd Let the "Professionals" take care of me with no qualms. It doesnt mean lazy or anything, Just 'letting' someone else take care of me... Sooo, just another take on it, but i really am pretty dang sure it was ment with no ill intentions :flower;
-
In Nova Scotia and Prince Edward Island, there are only 3 options for people with kidney failure; PD, in centre hemo, or transplant. At lot do hemo first, then go to PD, and most of the newer patients can't get transplants simply because there's a backlog of people waiting for workups to get on the list. There is, however, a handful of people, like myself, who only have one choice. We're not all sick, in fact, most of us are quite healthy and do very well on hemo. A few even work full time. About half of us are under 60. Some put their own needles in, some do their own charting. There is one girl who has a line and will not let any of the nurses do any of the work. There are a few who are more ill, but not many. Maybe that's something that's unique to Charlottetown, I don't know, but the concept of only the sickest patients being on in centre hemo doesn't make a whole lot of sense to me
Riki, your post sounds a lot like what monrein has said in the past. I may have gotten the wrong end of the stick, but I've somehow gotten the impression that self-care is a more common phenomenon than it is here in the States.
Anyway, I get your point. I don't have enough experience in this to make any more comments.
-
But just because we're in centre doesn't mean we just lay there and do nothing. Perhaps it's unique to my centre, I don't know, but the nurses push the patients to have some kind of active role, even if it's simply just ok-ing the amounts to take off with the treatment. Some of us, like myself, have used this site and others to educate ourselves, so we are more knowledgeable in how things work, and are a little more demanding. I don't believe anyone doesn't need to learn what the numbers mean, everybody needs to know so that they can give proper direction, and I don't know anyone who's been in centre long term here who doesn't at least have a rudimentary understanding in order to give the nurses proper direction.
This is why I don't like it being said that those in centre don't need to learn what everything means, because they do need to learn these things
-
Sweet dear Riki, i hope you dont now think that 'i' ment anything like that either :cuddle; Just because i would be comfortable letting them do the work, doesnt mean that i (like you) would just sit and go blindly into it. I completly see that you, and others (ME too!!! ) are here to learn cause thats how we opperate, but some im sure are helpless to their situations and need advocacy which i wish there was more of in the centers. I know this isnt REALLY related, but ............ just yesterday, hubby had to go into ER for a drug reaction. While in there, they started to hook him up to an IV. My eyes poped out and i quietly asked what it was for. They said just what they do. I asked if they understood hes a dialysis patient, and the nurse said yes, but the dr ordered it. ALRIGHTY THEN... so i asked politly if she could remind the dr of his 'condition' and see if there was a medical reason to go ahead anyway. Well, nope, there wasnt and i would have had a crapload of fluid to pull off. So, what im saying is, hubby just was gonna 'take it', as that is how 'he' is, but me being the one who learns (IHD ;D ) knew to put a stop to it. We all do what we can, thats how we roll here :grouphug;
-
I think that my experience might be more unique than most, because of how young I was when I started. I was taught to question whenever I thought something seemed wonky, so it's second nature to me now. Fortunately most don't have the experience that I did, and they don't need to start dialysis until later in life and they (especially those 70+) don't question doctors because they believe them to be all knowing.
I actually remember telling a female doctor to quit lecturing me because I was learning about kidney disease while she was still chasing boys on the playground. She was only a couple of years older than me. *L*
-
This is why I don't like it being said that those in centre don't need to learn what everything means, because they do need to learn these things
Yes, of course!!! Everyone starts in-centre, we ALL need to know what is going on and how to handle that environment. Even in my four days of dialysis I was able to stop some of the bad reactions from happening because I knew what was going on and why. I had to deal with a little control-freak nephrologist who was trying to assert himself amongst some very big names in nephrology. No matter how many times he was knocked down by smarter, more experienced doctors, he always seemed to want to come back and prove that he knew better than they did. And so it was that he made a decision to set my machine to take off a litre of fluid that was not there. Being told "do home hemo" would not have helped me in the least. And that was the original point that was being made - not everyone can or wants to do home hemo, that is their call, so what can we do for all of those people? I do think the word "brag" was not the most accurate because I did not think anyone was bragging per se. It does seem like the word 'brag' put people on the defensive, and I can understand that. I also think with some of these discussions, a member could get the idea that if they don't do home hemo than life is hopeless and they cannot expect to be able to live fully and we do have members who have proved that this notion is utterly false.
At some point the tone changed in this discussion from explaining one's reasoning to "I'll brag if I want to brag". Yeah, you can certainly take that position, no one can stop you, but why would you want to come on a support group and ignore other members' concerns about tone? This was a thread about in-centre problems, do we have any in-centre solutions? If you do home hemo and you have a problem with your supplies or an issue with the machine, would you find it helpful for someone to respond "this is why I do dialysis in a unit - so I don't have to worry about that nonsense". I imagine that would kick off the same sort of discussion that we find here - who made the better choice, and I don't think that's constructive at all. You cannot really compare choices made by people in such diverse circumstances.
-
I think there is a difference in how patient involvement is perceived in Canada, perhaps due to the way that our system is funded. I was strongly encouraged to do home hemo way way back in the day because I could and also because it saves the system money. I was given info about PD but wasn't pushed to do it even tho that also would have saved money. I have dailyzed in hospital in Ontario and Nova Scotia, done home hemo in both provinces and most recently was in a self-care clinic in Toronto. I was also switched from 3 times a week to 5 times a week simply because I asked my neph about that possibility since I wasn't feeling very well. There are many patients who are not able or not interested in being more involved in their treatment and I think we need to encourage and educate them to take more active roles BUT we must understand that the psychological impact of any chronic illness sometimes makes this difficult. Different people respond differently and good care must necessarily take an individualized approach to treatment modalities and to patient involvement. The beauty of sharing our experiences is that we can each try things on and think about whether or not we might benefit from something different. The key however is often whether something is available where we live. Home hemo could be a catastrophe if a patient is pushed to it just as in-centre could be emprisoning if it were the one and only option.
-
I don't in any way feel that I get poor treatment because in centre hemo is all that is available to me.
Here in the US, the standard for in-center in 3X/week. Numerous studies have shown that this is a serious compromise in quality of care, and results in greater mortality, than every other day treatment. So, I wouldn't say in-center is "poor", but it is reasonable to say that the goal in-center strives for is "adequate" rather than "excellent".
-
Good Afternoon,
I am a new member here and I have not yet started dialysis. I am scheduled for surgery on Monday to have my PD port placed. Here is a new members thoughts on the information in this post. I agree that those of us who are new need to be told the good, bad and ugly of all forms of dialysis. Reson: because most of us are going on information provided to us by our health care providers, who I might add, have never been on dialysis themselves.
Point - My hubby is squimish and blood is NOT and option for him so home hemo is NOT an option. Well my health care provider tells me I could do either PD or in-center. What does that mean? So I tried to research these and you get hard facts....not experiences. So I come here. In my travels I decided my life will suck because in-center HEMO seems like my only choice because I have animals in my home, I don't think I can live with a PD cath in my belly (lifestyle).
Then I run across some new and old posts here that give me MUCH more information than the professionals give. Now I know that the PD cath does not need to be in my belly. My is going to be in my chest. I learn that MANY have animals in thier homes.
Just from my point of view. Those of you who are feeling like you are being asked not to "brag" I feel just the opposite. If you had not I would have never known that I did actually have PD options. AND THAT MY FRIENDS CHANGED MY LIFE. I HAD DECIDED IF I NEEDED TO SIT IN A CHAIR IN A CENTER 3 DAYS A WEEK FOR 4-5 HOURS FOR THE REST OF MY LIFE (I AM 45) I WOULD RATHER DIE! And I already spoke to my family and my doctor about just that. Whoever you are: THANK YOU.
-
nholleger, I've been a member of IHD for quite some time (as you can probably tell by the enormous amount of posts I've tallied!), but I know next to nothing about PD. I'm fascinated by the fact that you, a relative newbie, have taught me that a PD cath does not have to be inserted into the belly. Yours is going to be in your chest? I've never heard of that! Can you tell me more about how that works?
I'm really glad that IHD has been able to help you make decisions about your treatment!
-
Good Afternoon,
I am a new member here and I have not yet started dialysis. I am scheduled for surgery on Monday to have my PD port placed. Here is a new members thoughts on the information in this post. I agree that those of us who are new need to be told the good, bad and ugly of all forms of dialysis. Reson: because most of us are going on information provided to us by our health care providers, who I might add, have never been on dialysis themselves.
Point - My hubby is squimish and blood is NOT and option for him so home hemo is NOT an option. Well my health care provider tells me I could do either PD or in-center. What does that mean? So I tried to research these and you get hard facts....not experiences. So I come here. In my travels I decided my life will suck because in-center HEMO seems like my only choice because I have animals in my home, I don't think I can live with a PD cath in my belly (lifestyle).
Then I run across some new and old posts here that give me MUCH more information than the professionals give. Now I know that the PD cath does not need to be in my belly. My is going to be in my chest. I learn that MANY have animals in thier homes.
Just from my point of view. Those of you who are feeling like you are being asked not to "brag" I feel just the opposite. If you had not I would have never known that I did actually have PD options. AND THAT MY FRIENDS CHANGED MY LIFE. I HAD DECIDED IF I NEEDED TO SIT IN A CHAIR IN A CENTER 3 DAYS A WEEK FOR 4-5 HOURS FOR THE REST OF MY LIFE (I AM 45) I WOULD RATHER DIE! And I already spoke to my family and my doctor about just that. Whoever you are: THANK YOU.
First, I am delighted that you have new hope and that you feel that certain IHD members have contributed so much.
Of course everyone should have as much information as possible, and when people find a modality that works for them it is wonderful when they share that with everyone else, but the point is that that information does not necessarily belong in a thread about in-center problems.
-
Hi,
As you read from my earlier post I was feeling REALLY desprate. I joined ihatedialysis because I needed to know if all things I learned from my health care professionals were my only options. I am 45 and very active. I work to jobs - both very physical. I am so energetic (until this ESRD) that I don't even sit down to watch TV. I CANNOT ever see myself sitting in a chair for several hours - several days a week. I think I would have some serious depression over that. So, I asked about PDTI was immediately told that the cath went in my belly and my physical jobs would have to altered AND no pool and no TUB. WHAT? I am a water girl. Then the dogs. I have two small dogs who are litter box trained. (BIG NO)
The post here were what had me looking into PD further. Many had animals. Some had cats with litter boxes. So I search on. Low and behold I find a "bath tub" cath posted somewhere in my travels. WOW! I research it and not only does it allow me to a bath tub but also in my pool because the cath is above my water line! SERIOUSLY? Why didn't my doctor tell me about this? I as her.....she never heard of it! So I search on. I can't find a surgeon to do it! THEN.....I call large hospital within 3 hours of my home. AND what do I find? A surgeon who specializes in what they call a "missouri" cath.
I meet with the dialysis clinic and the nurses there are excited to learn something new. My doctor is young and didnot want anything to do with it. So I now have a different doctor (not so young) who said "lets make it happen". So I schedule surgery in a hospital 2 hours from home to get this cath.
I will let you know how it goes!
-
I don't in any way feel that I get poor treatment because in centre hemo is all that is available to me.
Here in the US, the standard for in-center in 3X/week. Numerous studies have shown that this is a serious compromise in quality of care, and results in greater mortality, than every other day treatment. So, I wouldn't say in-center is "poor", but it is reasonable to say that the goal in-center strives for is "adequate" rather than "excellent".
yes, I agree with that, and to be honest, if I could choose another modality, I would. My problem was that the original poster had a valid question about a problem with staff in her unit. The answer that was given to her was to switch to home hemo. It may help her in the long run, but it wasn't an answer to her immediate problem.
If it had've been me asking the question, and the answer I got was to switch to home hemo, I would have been a bit mad, because, as I've said, it's not a modality offered where I live. As it is, I do get good dialysis in the 3x per week model. My clearances are always 75% or higher, my levels are all in normal range, and not just dialysis targets, NORMAL, except for Creatnine, of course. I also feel like a human being most of the time. I'm doing better now than I was when I was on PD, so even if could, I don't know if I'd change modalities, even if I could, though I am curious about how home hemo works these days.
-
Oh oh oh, nholleger, I just did some research on the "Missouri" cath over on HomeDialysis.org; I had no idea! I learned something today. And you taught your docs a thing or two, also! Just think...now you've educated your doc since she had never heard of it; consider how many of her patients she can now tell about the "missouri" cath, all because of YOUR research! Well done! This is just one more option for those who are not happy with in-center D but have been squeamish about PD.
-
My problem was that the original poster had a valid question about a problem with staff in her unit. The answer that was given to her was to switch to home hemo. It may help her in the long run, but it wasn't an answer to her immediate problem.
If it had've been me asking the question, and the answer I got was to switch to home hemo, I would have been a bit mad, because, as I've said, it's not a modality offered where I live.
You are right.
You know how discussions often sorta veer off course!
Switching modalities can be easier said than done for a lot of people
-
Nadine, good on you for reading some of the older posts on this site. I have 3 dogs and a cat and do PD daily. I just make sure they are not in the room when I am connecting/disconnecting. And while they don't sleep in the same bed I do, they are in the same room at night while I'm connected to my cycler. That's worked for a year and a half (knock on wood), and I haven't had any problems.
As for catheter placement, you can certainly go with a pre-sternum placement if you wish. They just add an extension to the catheter to get the end down into your peritoneum. Mine is just below my belt line. I find it's not an issue there and I can easily tuck it into a PD belt to immobilize it. Best of luck to you on this journey, and let us know how you are doing.
-
Thanks everyone! One step at a time......I will reach a goal. Not really how I pictured my life, but I once read that a person's character does not change over their lifetime.
Paraphrase: he stated something like he knows people who are often miserable in life and are miserable on D. But he also knows some upbeat people who continue to be upbeat even after loosing legs, etc. All in how you want to look at it.
I do believe we will all have moments where you say "really?, why me" but we move forward because we have to. Good luck all.
PS. Belive me I was not feeling that open minded when I sent my 8th person for tissue typing to the transplant center and STILL NO MATCH! :banghead;
-
they don't need to start dialysis until later in life and they (especially those 70+) don't question doctors because they believe them to be all knowing.
Watch it!! Here's a 70+ who puts her doctors through the wringer with curly questions. I think any generalisation is possibly going to cause offense and is best ignored if it doesn't 'match' you.
Besides I remember feeding my (doctor) sister caterpillars, and almost hanging her while practising circus tricks under the house. She volunteered! I know doctors don't know everything. They're fallible humans just like the rest of us. Supervision is the best course of action.
-
I may be wrong on this but on this quote "They won't have to worry about storage or learn how to cannulate or what the numbers mean. They can just lay there and let the Professionals take care of them." I saw it as a lovely thing...Not as saying something bad AT ALL! . I think it's on of those things as to 'where' you put the empfasis on. I heard it completly different from the rest of ya here and though i can see where your commen from, I dont think it was ment at all like that. If it were me and not hubby,, i honestly am pretty sure i'd Let the "Professionals" take care of me with no qualms. It doesnt mean lazy or anything, Just 'letting' someone else take care of me... Sooo, just another take on it, but i really am pretty dang sure it was ment with no ill intentions :flower;
THANK YOU BOSWIFE. You got exactly what I was trying to say & my intentions were not mean spirited at all, but aparently some read it a different way.
Sorry to those who were "offended" by what I said. And maybe I should clarify it more by just saying, when John was in-center over 2/3 of the people there were zombies including my husband. They all just sat there sleeping. I of course, knew nothing cause the clinic he went to, did not inform me of anything. I felt left out and very unenvolved and very lost as to why. I knew a little about dialysis from doing PD at home. Never knew Home dialysis was an option. When I spoke to his neph about how the clinic would not let me in on anything they were doing to him and I wanted to switch him to another center, she suggested I look into home hemo. I was all for it. Never knew it was available, cause quite frankly, we had not yet found IHD.
NxStage training is when we were told about IHD. I love this site, and if I offened anyone, then please except my apology, cause that was never my intention! I was just trying to make a point towards our experiences.
God Bless,
lmunchkin :kickstart;
-
[..]
I meet with the dialysis clinic and the nurses there are excited to learn something new. My doctor is young and didnot want anything to do with it. So I now have a different doctor (not so young) who said "lets make it happen". So I schedule surgery in a hospital 2 hours from home to get this cath.
I will let you know how it goes!
You, my friend, totally rock.
A standing ovation for the lady here. :yahoo; :2thumbsup; :clap; :clap; :clap; :clap; :clap; :clap; :clap;
- rocker
-
My mother had a PD cath that came through her belly. The doctors here developed a cath that runs through a tunnel and comes through your chest. They have had great success from this cath as you constantly use your belly muscles all day long. I know from the incisions that this is very true. I hope to start my 2nd PD training on May 20th for my own dialysis. I watch the in center tech and the nurses like a hawk while the hook into my permcath to do my hemo. They know I know a lot so they feel under my thumb. Having all these tubes protruding from my chest makes me feel right at home. I have worked on machinery all my life and now I am an accessory. Just plug me up to hemo or PD and I am ready to go! I attached a photo of the permcath and the Missouri PD cath protruding from my chest.
-
But MooseMom, I don't feel "left behind" because I do in centre dialysis. I'm in no way passive in my treatment. Nothing is done without my say so. I decide where the needles go (I have 3 available sites and one more developing), I decide how much fluid is taken off. If I don't feel well halfway through the treatment, I decide if I should come off and go home. I watch the machine, and I can alert the nurses if there's a problem with the pressures before the alarm goes off. I don't in any way feel that I get poor treatment because in centre hemo is all that is available to me. Would I try other modalities if they were available to me? Sure, if I thought they'd be beneficial, but the notion that I or others on in centre hemo are lazy or are getting inferior treatment simply because we are in centre is offensive.
Riki I'am with you on this!! This year will be 8 yrs In-Center Hemo & I am very pro-active in what gets done during my treatments & my nurses are with me on what I say! I don't have a problem with anyone's choice on what Dialysis is best, but I do agree with Riki on this !
-
wow jj... trip!!
-
Hi,
As you read from my earlier post I was feeling REALLY desprate. I joined ihatedialysis because I needed to know if all things I learned from my health care professionals were my only options. I am 45 and very active. I work to jobs - both very physical. I am so energetic (until this ESRD) that I don't even sit down to watch TV. I CANNOT ever see myself sitting in a chair for several hours - several days a week. I think I would have some serious depression over that. So, I asked about PDTI was immediately told that the cath went in my belly and my physical jobs would have to altered AND no pool and no TUB. WHAT? I am a water girl. Then the dogs. I have two small dogs who are litter box trained. (BIG NO)
The post here were what had me looking into PD further. Many had animals. Some had cats with litter boxes. So I search on. Low and behold I find a "bath tub" cath posted somewhere in my travels. WOW! I research it and not only does it allow me to a bath tub but also in my pool because the cath is above my water line! SERIOUSLY? Why didn't my doctor tell me about this? I as her.....she never heard of it! So I search on. I can't find a surgeon to do it! THEN.....I call large hospital within 3 hours of my home. AND what do I find? A surgeon who specializes in what they call a "missouri" cath.
I meet with the dialysis clinic and the nurses there are excited to learn something new. My doctor is young and didnot want anything to do with it. So I now have a different doctor (not so young) who said "lets make it happen". So I schedule surgery in a hospital 2 hours from home to get this cath.
I will let you know how it goes!
You are a perfect example of how we should take charge of our health! Hats off to you for being your own advocate and making it work for you! Hope everything continues to work out! Keep us posted!
-
I went to University of Maryland Medical Center yesterday and got my presternal PD cath placed. More painful than I expected, but done! If anyone here is a Star Trek fan....resistance is futile....i have been assimilated. I feel like the Borg queen.......
-
I went to University of Maryland Medical Center yesterday and got my presternal PD cath placed. More painful than I expected, but done! If anyone here is a Star Trek fan....resistance is futile....i have been assimilated. I feel like the Borg queen.......
You are not the first to feel "assimilated"! Just do an IHD search for "Borg", and you'll see what I mean! :rofl;
I really hope your cath serves you well. I'm sure everyone at your clinic will be really impressed! I hope your pain goes away very soon. Good for you for doing your research and getting what you want. You are an inspiration!
-
I went to University of Maryland Medical Center yesterday and got my presternal PD cath placed. More painful than I expected, but done! If anyone here is a Star Trek fan....resistance is futile....i have been assimilated. I feel like the Borg queen.......
You are not the first to feel "assimilated"! Just do an IHD search for "Borg", and you'll see what I mean! :rofl;
I really hope your cath serves you well. I'm sure everyone at your clinic will be really impressed! I hope your pain goes away very soon. Good for you for doing your research and getting what you want. You are an inspiration!
yep.. I say that I have regeneration cycles 3 times a week. *G*
-
I refer to it as "resetting my death clock"
-
I refer to it as "resetting my death clock"
-
I refer to it as "resetting my death clock"
I call it "getting my oil changed" lol. I like yours better!
-
I refer to it as "resetting my death clock"
I call it "getting my oil changed" lol. I like yours better!
that's what my dad calls it. I told my best friend one day that I was getting my oil changed, and she asked me if I also got a lube and filter. *LOL*
-
I refer to it as "resetting my death clock"
I call it "getting my oil changed" lol. I like yours better!
that's what my dad calls it. I told my best friend one day that I was getting my oil changed, and she asked me if I also got a lube and filter. *LOL*
It would be reasonable to consider the heparin the lube, and you already do get a filter, so your answer would be yes.
-
I refer to it as "resetting my death clock"
I call it "getting my oil changed" lol. I like yours better!
that's what my dad calls it. I told my best friend one day that I was getting my oil changed, and she asked me if I also got a lube and filter. *LOL*
It would be reasonable to consider the heparin the lube, and you already do get a filter, so your answer would be yes.
She knew what I meant by oil change, but you're right.. I never really thought of it that way... there was another day when I was talking to her and I told her that I was on my way home from dialysis and she asked me how I was feeling. I said, "drained." She thought that was funny