I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MooseMom on November 20, 2011, 01:09:36 AM
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As I have often stated, I am planning to do NxStage at home once I have to start dialysis. I have no idea when that will be; I have been expecting to have to start any day now for 7 years. It has been a looooong slog. I want to be able to get as much dialysis as possible while I await the chance for a transplant. My transplant surgeon said that with my blood type and my 0 PRA, there is a decent chance that I won't have to wait that long. I have a bit over a year under my belt already.
It so happens that my dialysis clinic is a five minute drive away, so I won't have to travel far for treatments. I am seriously considering just doing inclinic dialysis IF I can talk my neph into letting me have an extra session. Does anyone here go to inclinic D more than three times a week? I also want to learn to self-cannulate. Does anyone here go to a clinic where they are allowed to stick themselves? I am just starting to wonder if it might be less hassle to go inclinic and avoid the palaver of NxStage training and of all that home hemo entails...the ordering of supplies, the faffing about with the machine, etc. I figure I can receive dialysis during the day and still be able to look after my husband when he gets home in the evening. I hesitate to mire him down with NxStage stuff after he's come home from a busy day at work. I know he would support me in anything I want to do, but I'd like to give him some respite if possible.
Anyone have any thoughts on this? Is this a terrible idea? I just want to survive fairly well intact so that I can be in good health for a transplant, but I want to keep it as simple as possible, too. If I can't get more than three sessions a week, I won't do it; I'll train on NxStage. If anyone has any suggestions, I'd be grateful. I don't have to make a decision right now, but I want to keep an open mind and not close myself off to other possibilities.
Thanks very much.
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I am no expert on dialysis. I've only been on it 6 weeks, including a week in the hospital, but I've noticed a few things. Hospitals are hard up for cash. Yesterday a suit was in the dialysis center hassling indigents for money as they sat in their dialysis chairs. Dialysis is obviously expensive, and they probably won't go for four sessions, if only for the financial reason. I understand why you want to be on dialysis as much as possible, but there are other ways to accomplish better results. Put on less fluid between sessions. That means less sodium, and really watch what goes into your mouth. You can also ask for a longer dialysis time. This will allow a slower extraction rate, which is easier on the heart. I'd like to go on the home sessions too, but needles creep me out, and the last thing my wife wants to do, after being a charge nurse for a cardiac ward for 12 hours, is come home and help me dialysize.
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Hello MooseMom!
You have very valid points regarding wanting to do in-center vs. NxStage. However, I think you will not have very much luck getting a center to give you a fourth treatment during the week. They have ways and they are set in their ways. That will just muck up their system to no end. However, it's probably worth having a talk with your neph and whatever clinic you have been eyeing to see if it is something that they would even entertain.
Personally, I just made the switch in the opposite direction from in-center to NxStage. I am ecstatic. I feel fabulous after treamtents instead of washed-out. I can do my treatments on my own time. The machine is really not that bad, it took me three weeks of training and it would have been less but there were issues with starting on my fistula. I had a perfect place in my house to put the machine and I'm even planning on making a cover for it when it's not in use. I'm going to be using the PureFlow so I won't have a ton of supplies. I already have my supply delivery dates for all of 2012 so I can plan my work at home days.
The other thing that you have to think about is the intangibles of being in-center. I know you aren't too far away from me here in IL and winter is coming soon. I'd rather be warm and cozy in my house, even though my center was a mere five minutes away. I don't have to worry about staff and their issues. I can watch whatever I want on TV and the Internet is fast and functional instead of a big nightmare like it was in the center. No listening to other patients and their problems (goodbye to the lady who started throwing up violently 1-1/2 hours into treatment and inevitably was seated next to me). No waiting to get on and off the machine and no waiting for staff to deal with alarms.
As far as your husband, mine is going to be minimally involved. He's completely afraid of needles so he will not be sticking me but will be helping me to remove the needles and put pressure on my sites. Luckily, I don't bleed much now and once my buttonholes are ready, it will be even less. I also plan on using him as the muscle to move boxes ;D
If you'd like to talk more, or maybe even a road trip to come see my NxStage setup, please PM me.
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I think you are very smart to explore all of your options. Even if you ultimately decide on NxStage, at least you will know you made the best decision for you. I do in center, and my center allows self cannulation (I don't do it...mental hurdle for me personally), in fact they encourage it. However, I go to a really great center. I know from these boards that every center is different. I would definitely visit the center near you and get a feel for it. As for scheduling a fourth session, if your supervising neph prescribes a fourth session, the center has to accommodate. The trick is getting the supervising neph to prescribe it. That might be more difficult than you think. Good luck.
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I honestly think this plan would be ideal for so many people - it sounds like what monrein did in Canada.
Of course, with our hard focus on capitalism in the US, I also believe that they will never give you that extra day of dialysis, but that should not stop you from asking, demanding, making all sorts of noise to get what you know is best for your health and your situation. Unfortunately, Americans have said 'let the market decide' and the market has decided that keeping dialysis patients just short of incapacitated is good enough for a country that, with no hint of irony, refers to itself as the provider of the Best Healthcare in the World.
I would not want to have all of that equipment and those boxes and have to completely medicalize my home, either. I think I would do it, though, for many of the reasons that cattlekid described. No worries about blizzards or driving home or obnoxious fellow dialyzors. Being the petite woman that you are, you are going to need a shorter run than most, so you could pop in a film or whatever and spend that time with your husband without too much disruption (I think?).
I would take cattlekid up on her offer, too, if you are able. Aleta showed me the remnants of their supplies, and it was so informative and interesting to see how they managed given space restrictions that we all have. Then there is also the idea of nocturnal.
However, you're right that your transplant wait may be short, and since you will start incentre anyhow, you will have some exposure to a clinic first, and you can determine then if you can tolerate the atmosphere or not. (In fact, I was told by Northwestern that dialysis must be initiated in hospital and I do believe that is true. It is a minimum 3 day stay, at least that was what I was told by the nephrologist and surgeon in 2010)
Of course, as you say, you could go preemptive. (fingers crossed!)
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I think it's great for you to consider all of your options. I haven't started yet either, but will need to be in center simply because I live alone. Right now I am preferring it anyway as I'd like the additional support (from the staff and other patients). I do dread having to deal with getting there during the winter months, etc .... but know that some centers offer transportation options, etc.
I think your best bet is to try to get what you want for yourself with in center and then go from there. If 4 sessions is the absolute minimum you'd accept and that doesn't pan out, then you can move to your next option with NxStage. Your husband wants you to be as happy and healthy as you can be, so I expect he'll definitely support you in getting the home hemo situation set up and running. And you may find that doing home hemo also helps you in your desire to be more present and available to him as well. From much of what I read here, your 'partner' in home hemo really only needs to help you with what you might have difficulty with in doing on your own. And you may very well be completely independent and just need him for any potential emergencies.
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I was at a self-care clinic...we were each required to set up our own machines, altho not tear them down at the end. I did 5 days a week, never having more than one day off and I did 2 and a half hours but could have done longer if i'd wanted or needed to. Very few of us did our own needles although they encouraged and supported those who would. I had one consistent person to train me on buttonholes and she was excellent. There were 3 nurses ,+ the admin nurse person who would pitch in if necessary, to about 12 patients and there were the machine maintenance team and one tech whose tore down the machines, made sure supplies were stocked and served us tea or coffee once per shift. We went to the hospital once a month, and one of the clinic nurses was always there, to see the dialysis neph, different person than the preD neph or the post trx neph. Once I was trxed I went back to the same neph I had with the first trx. They all work out of the same hospital and the self-care clinic is a satellite program which serves patients from three different hospitals in different areas of the city. We also had a big drawer to keep our personal things in so didn't have to truck them to and fro.
I do think that longer, slower sessions at home provide more optimum treatment (getting at those larger molecules for example), with more comforts and therefore lead to one feeling better, but especially if one is not on D for years and years, self care is wonderful. They want us doing this here because we save our system significant monies.
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Thanks so much, everyone, for your replies; I'm really grateful.
I know my husband will support me in whatever I want to do, so I'm not really THAT concerned. I'm more concerned about him than he is. :rofl; While it is true that I'd like to keep dialysis out of his life as much as possible, he is a big boy and can handle it, so this is not my greatest concern.
Winter IS a concern, and believe me, I DO think about having to haul my butt to the clinic in January during a blizzard. I am always the one to shovel the drive, but for the past couple of years, we've had a snowplowing service come and do it for us if there is more than 3 inches of snow. I can see myself trying to get out of my drive to get to dialysis before the plow has had time to come. I live at the end of a cul-de-sac, and we are the last road the city plows. So, yes, I can't imagine passing an entire winter without some sort of transportation problem.
I know that most nephs/clinics won't let you do more sessions of dialysis, so this whole thing may be moot. But I was reading a comment on The Kidney Doctor Blog from a neph (not the Kidney Doctor) who said that more frequent dialysis should ONLY be indicated for people awaiting a transplant (I thought this was rather immoral. What if you aren't eligible for a transplant but still want to be as healthy as possible? I was gobsmacked by this statement). I guess all I can do is ask my neph when the time comes. Chances are I won't be given any real choices if I am inclinic, so probably in the end, my choice will be made for me. I probably will end up going the NxStage route, but I did want to explore other options and keep an open mind. But when I find it difficult to summon up the energy just to get out of bed in the morning, the whole idea of teaching myself how to do dialysis makes my eyes glaze over. :P
Thanks again, everyone.
PS...sorry for the enormous typo in my heading. "Rething"? Jeez!
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They might let you do an extra day of dialysis - if you're already doing 4+ hours of dialysis and your Kt/V is still too low - i.e. you need it. Otherwise, the only way you could possibly talk them into it is if you pay for the extra sessions upfront yourself. No insurance will cover it, especially not Medicare. When I travel and I have to temporarily switch from Tues-Thurs-Sat to Mon-Wed-Fri for logistical reasons, they'll still only allow three sessions per week (which sometimes leaves me with two two-day gaps in a row, or one three-day gap).
I haven't been on home hemo, but anything has to be better than in-center hemo. On PD my only problem was being tethered to my bedroom for 10 hours a night. On in-center hemo, I lose three entire days each week because it makes me feel so bad.
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I too think it is great to explore your options I was in clinic for a while, but it just wasent for me, I do Nx stage 5 to 6 days a week and I do stick myself, take my needles out by myself, my daughter is there if I need help, but for the most part its just me. I have my room set with with a recliner, T.V. little table for drinks yes I do have a glass of fluid while on machine. Sometimes the kids come in and watch a show with me. For me this is better than in clinic as I can work around kids appt Dr. appt family things, becasue I set the best times for me each day. but again this is for me, you have to do what is best for you and if being in clinic is then go for it its about making life easier, because dialysis is hard enough so the less stress you can have the better.
best of luck, and do whats best for you. :flower;
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I think you have made some great observations, MM.
If your clinic will not support a fourth treatment (and I doubt they will, since most clinics in the US have this MMF/TTS split regimen), you have to think in terms of keeping your health at its best while waiting for a transplant. There is NO WAY to know how long that will be. It could be tomorrow or five years down the road. Three days/week is the minimum for maintenance. Folks can survive on that. But it falls far short of what a functioning kidney does.
I would really encourage you to take up Cattlekid's offer. :2thumbsup;
Whatever you choose, though, I hope you still have plenty of time to think about it! :cuddle;
Aleta
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Thanks so much, everyone, for your replies; I'm really grateful.
I know my husband will support me in whatever I want to do, so I'm not really THAT concerned. I'm more concerned about him than he is. :rofl; While it is true that I'd like to keep dialysis out of his life as much as possible, he is a big boy and can handle it, so this is not my greatest concern.
Winter IS a concern, and believe me, I DO think about having to haul my butt to the clinic in January during a blizzard. I am always the one to shovel the drive, but for the past couple of years, we've had a snowplowing service come and do it for us if there is more than 3 inches of snow. I can see myself trying to get out of my drive to get to dialysis before the plow has had time to come. I live at the end of a cul-de-sac, and we are the last road the city plows. So, yes, I can't imagine passing an entire winter without some sort of transportation problem.
I know that most nephs/clinics won't let you do more sessions of dialysis, so this whole thing may be moot. But I was reading a comment on The Kidney Doctor Blog from a neph (not the Kidney Doctor) who said that more frequent dialysis should ONLY be indicated for people awaiting a transplant (I thought this was rather immoral. What if you aren't eligible for a transplant but still want to be as healthy as possible? I was gobsmacked by this statement). I guess all I can do is ask my neph when the time comes. Chances are I won't be given any real choices if I am inclinic, so probably in the end, my choice will be made for me. I probably will end up going the NxStage route, but I did want to explore other options and keep an open mind. But when I find it difficult to summon up the energy just to get out of bed in the morning, the whole idea of teaching myself how to do dialysis makes my eyes glaze over. :P
Thanks again, everyone.
PS...sorry for the enormous typo in my heading. "Rething"? Jeez!
Not sure why you are backing away from home hemodialysis which is by far the best way to do dialysis if you have to. Pretty much everyone is going to start in-center. Although many techs take their job seriously and provide excellent care, to others, you are just another widget in the system. Sit down, shut up and give me your arm is their attitude. Hand hygiene in dialysis centers is terrible. In addition, there are times where you will see blood on the chair that they are asking you to sit in even in the so called cleanest units. It is very much a cattle call in many American dialysis units as I have found in my own experience.
In addition, in-center, you will NOT have ultra-pure dialysate as you do with NxStage. For those doing nocturnal home hemodialysis on NxStage, you cannot duplicate the clearances in-center. I seriously doubt you will have an extra session granted, do you think you are something special is what they will ask you? The American dialysis industry is not set up to maximize your outcomes, far from it, it is instead set up to maximize dialysis center profits. Just the plain and simple facts unfortunately.
Self care at home is absolutely the best way to go about dialysis. The big denominator are those that can self cannulate. Not fun, but not hard either, just ask Monrein.
Looking at hygiene and infection factors, regaining independence, longer and more gentle dialysis sessions in the comfort of your own home, in my opinion, there is no comparison to going in-center. In the end, it is all personal preference, but I truly believe the dialysis experience will be much greater in your own home. Once you get the training and comfortable with everything, there is truly no comparison. I would strongly advocate that as your first consideration. Once again, it is all personal choices, but anyone that has done both will certainly also advocate going the home hemodialysis. Talk to Tyefly who went through all of this a couple of years ago. She really mastered the whole process very quickly.
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Here is an excellent review of Home Hemodialysis by Dr. Blagg, a true dialysis advocate and researcher still filled with zeal after 50 years of fighting against the system trying to save lives.
http://www.touchbriefings.com/pdf/2173/blagg.pdf
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Hemodoc, I'm not really backing away from HHD. I think I have just had so long, seven years, to create this monster in my head. While I appreciate having plenty of time to ready myself for dialysis, it can also be said that this has been a rather long psychological slog, and I've probably just inflated the whole thing. I don't want to be just another widget, and I know that the only way I can prevent that from happening is to do dialysis at home. I DO understand all of this, but, well, it just feels like a bridge too far at this moment in time. But I am not starting dialysis at this moment in time, so this is all more of a hypothetical discussion, and I just wanted to see if other IHD members could give me something to think about that I had not already considered.
I don't really have concerns about self-cannulating. I know that's the biggest hurdle for most people, but for whatever reason, for me it just isn't.
I dunno...I guess I'm just feeling a bit overwhelmed these days, and thinking about dialysis doesn't help. It will pass. I'm really bad about anticipating problems that haven't even occurred yet, and I think that's what is happening here. I really need to stop doing that! ::)
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No problem, Moosemom, we all had terrible anxiety before starting dialysis. Quite a natural reaction to such a change in our life. Being nearly 5 years into this venture, once you get on the other side and actually put to practice what you have learned in these last seven years, it all fits together.
I am grateful to have had 5 years I wouldn't have had without this wonderful thing we call dialysis even with all it's warts and pimples so to speak. Not fun, but I am here with my new granddaughter helping her get over the croup. Life is not easy no matter what age. Dialysis is certainly an added burden, but is it really a burden or simply the price of staying alive.
Hang in there and keep doing all of the things you have to stay off dialysis this long. It will take a bit of work to get up to speed with your dialysis treatments when they come, but you may find you feel better than you do now once you get some good dialysis.
God bless,
Peter
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Thanks for that, Hemodoc. Every single word of encouragement is gratefully received!
BTW, did you read that neph's comment on The Kidney Doctor blog referring to daily/nocturnal dialysis as "Extra Cheese Dialysis"?
http://www.thekidneydoctor.org/2011/10/dialysis-unplugged-waiting-for-godot.html
I am not often offended, but this really got up my nose.
dyann, you are right; we each need to do what is best for ourselves. I guess my problem is that I don't yet know what will be best for me, but I'm sure it won't take me long to figure it out! Like Hemodoc said, once you actually start D, the puzzle pieces start falling into place.
Restorer and Willowtreewren, you're right in that I probably won't be allowed to do four sessions a week, anyway.
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I really feel like i want to think this through before i write it down, but i'll give it a quick shot and correct myself later if need be. Soooo, putting aside the 'fear' factor that i had i'll tell ya some stuff that i sometimes think about... I think about how "simple" it was for us to get up, have breakfast, run him to D center, i would hang while he got set up and then i'd do a snack/drink run for the other patients, and then go off to shop, walk, ride my bike, go to the gym and swim with daughter, go to the dog park and play with our dogs and talk about other things besides dialysis with a few other doggie people, watch a movie *I* wanted to watch...etc... then go and pick him up no fuss no muss... Seemed great to me. Then, Bo started fussing about going to D and he said it was he hated different techs sticking him and never knowing if it would be one he liked or not. We had a great center, but theres always going to be your favorite stickers. Well, i sucked it up and told him i would learn to canulate to ease this worry from him... Center wont allow this, only for the patient themselves to canulate.. Well, then they seemed so excited and mistook my intentions and kept saying,,,,,,,,,"oh, your going to do home hemo?".... Yikes!!! NO!! that was not my intent!!!! WEll, we talked it over, and this time we decided we'll give it a shot. You know a whole bunch about the rest of that story, and now, having nearly a year under our belts, i would not want to go back to center but........................ It is not *thee* walk in the park that we were led to believe. Theres ordering, blood tests, finding room for supplies, being here for supplies...etc etc etc......... AND it's not the 2-2 1/2 hour treatment that we had thought we would be doing. It's a big commitment, but one that we have come to be very happy and comfortable with and wouldnt change. We still laugh though at the 'dream' of what was put to us upon start though and say to each other.... "what were we thinken" lol Now, i will say that im a huge advocate of NxStage and am very proud to be doing it at home. It's wonderful,,,but i dont think badly of centers either IF we could canulate, go at the speed we choose, and have the extra days as you are looking into.... I personally never thought they were out just for the money.... Any way,,,, Huge :2thumbsup; for nxStage, but each to his own...
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MooseMom,
you have received so much excellent advice here! I just switched to in-clinic hemo from 8 years of PD. I was looking forward to getting all the crap out of my house and letting someone else worry about everything, even if just for a while. Now I can't wait to get back into home dialysis! My clinic has some great people, and some good stats, but sitting in that clinic is like hell for me. Just having to sit four hours without moving is torture. And, like you, I would have liked to have four days of treatment/week. But after a couple visits, there's no way I want to go there any more than I have to!
You've been so vigilant in your pre-dialysis regimen, I think that you will be able to do really well for as long as you need to do in-clinic dialysis. And, in my opinion, if you feel your doctor is at least partly responsible for you stayiing off D this long, then I think he really does have your best interest at heart. My doctors want the best for me. I only feel sad and disappointed when I learn that they have compromised in some way with the money machine, which they unfortunately do sometimes. More often I see it's the nurses who seem to take it upon themselves to "protect the company". They don't have a problem saying "no" to patients when a request is against company policy. That's why I'm in a hurry to get away from that again.
Blessings.
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BTW, did you read that neph's comment on The Kidney Doctor blog referring to daily/nocturnal dialysis as "Extra Cheese Dialysis"?
http://www.thekidneydoctor.org/2011/10/dialysis-unplugged-waiting-for-godot.html
Jesus H. Christ.
I just read that doctor's comments about how we shouldn't pay for extra dialysis just so patients could have 'extra cheese'. Who in the hell does that Noshi Ishak (nephrologist in New Hampshire - you've all been warned) think that he is? Is that supposed to be funny? So we're all pigs who cannot control our cheese intake and therefore should have our health taken away from us?
How about when he said that the only people who should get extra dialysis are those with high PRA or patients who have, in his exact words "failed their transplant"??!! Uh, that had better be a terribly regrettable typo, because what he is implying is disgusting. I did not realise I had failed my transplant, but I will bet my last cent that he has failed his patients. Where in the world does he get the idea that better dialysis is only for a select few, and he gets to choose? Is it 1962 again? Are doctors supposed to pass these thinly disguised morality judgments on patients?? Not being listed can be a choice, or down to LACK OF INSURANCE which has nothing to do with comorbidities. This "doctor" is wrong, and dangerously wrong. Shame on him!
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I agree wholeheartedly. I was the anonymous comment after MooseMom!
I think I should have been more forceful. But you know what? A doctor like that is unlikely to listen to someone like me anyway.
Oh well.
Gotta just keep fixin' what you can!
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I agree wholeheartedly. I was the anonymous comment after MooseMom!
I think I should have been more forceful. But you know what? A doctor like that is unlikely to listen to someone like me anyway.
Oh well.
Gotta just keep fixin' what you can!
Ooooh, I just read your comment. Good for you! And yes, cariad, he is very wrong. I think about some of our own members who do not have co-morbidities but have chosen not to be listed, anyway. What would this doctor say to Desert Dancer, Hemodoc and Bill Peckham? It has been a very long time since I've read anything that has shocked me quite this much. I hope Hemodoc goes over there and unloads on him. :boxing;
boswife, as you know, I've read a lot about your experiences and feelings about NxStage, and I am very mindful of home hemo being a big commitment. I'm gonna have to start fighting with people just to get my little monthly Gift of Hope box that has strangely gone AWOL, and I'm in a bit tiswas about just one box; I may go absolutely mad if a whole shipment of stuff gets screwed up! I generally have a dogged patience with bureaucracy, but when it comes to life-saving supplies, I may not be my usual lovely self if I have to deal with lazy and incompetent people. :boxing;
But all choices have pros and cons, and I guess when it comes right down to it, if there is no reason I can't do dialysis at home, then having better health is worth it. But I just wish it could be easier. I want to get to where Desert Dancer and Hemodoc and boswife are...already happy and comfortable with their choice and way past the early, anxious days. :P
(We need a "pout" icon as I am in a really pout-y mood tonight. Can ya tell? :P)
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MooseMom,
what about PD? you have to deal with supplies once a month, but other than that, it's not so bad.
If you do hemo, and want to try home hemo, i will be going through it with you (or before you) I want to get out of the clinic. But I, too, am anxious about doing hemo at home.
I will help you, or we will help each other. There are others here who have already promised to help me!
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MooseMom,
what about PD? you have to deal with supplies once a month, but other than that, it's not so bad.
If you do hemo, and want to try home hemo, i will be going through it with you (or before you) I want to get out of the clinic. But I, too, am anxious about doing hemo at home.
I will help you, or we will help each other. There are others here who have already promised to help me!
I have had a fistula for over a year now, so I am prepared for hemo. I thought about doing PD, but I've had several abdominal surgeries and wasn't sure it would work well enough for me. Plus, I'm rather small and round, and I could imagine my belly full of fluid and me resembling a weeble. Plus, I love to swim, and I refuse to let CKD/dialysis rob me of yet one more simple pleasure in life.
Yep, let's help each other. Thank you for the offer of support. That means a lot to me. I haven't really been in the position to help anyone with any practical dialysis problems as I have no experience with it (although my mom was on dialysis for 5 years before she died last year, so I do know something about it), but I am eager to accept any offer of assistance. Thank you! I've been following your own stories and understand that you have had to make the adjustment from PD to hemo, so I am very interested in hearing frequent updates on how you are progressing.
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I think all dialysis options have pros and cons. And when you are about to start dialysis, it's so overwhelming. i do in center because 1) I live alone and when I was starting dialysis, the thought of dealing with all the supplies, etc by myself was just impossible. 2) I am one of those that has a mental block to self canulation. I know its mental, but it is what it is.
Fortunately, my center is pretty great. Don't get me wrong, if I didn't have to go there I wouldn't. But overall, I've been pretty lucky. I've never felt like just a dollar sign. All of the nurses and techs are good people (there are some I like better than others, and some that stick me better, but they try to work with me). I don't love being tied to a chair, but I can do it.
Ultimately, you have to make the decision that's best for you. And don't let anyone convince you to second guess yourself. Only you know. Once again, I want to say how smart I think it is to know all your options. When I was diagnosed and then started D, it happened so fast. I wish I had spent more time learning my options and being informed. I think I ended up more lucky in my choice than informed.
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I agree wholeheartedly. I was the anonymous comment after MooseMom!
I think I should have been more forceful. But you know what? A doctor like that is unlikely to listen to someone like me anyway.
Oh well.
Gotta just keep fixin' what you can!
Ooooh, I just read your comment. Good for you! And yes, cariad, he is very wrong. I think about some of our own members who do not have co-morbidities but have chosen not to be listed, anyway. What would this doctor say to Desert Dancer, Hemodoc and Bill Peckham? It has been a very long time since I've read anything that has shocked me quite this much. I hope Hemodoc goes over there and unloads on him. :boxing;
I put a comment on Hemodoc. Thank you for sending the link. It was a terrible statement that shows how much we still have to encounter in the American nephrology community. In many ways, they are the enemy.
http://www.hemodoc.com/2011/11/extra-cheese-dialysis-or-the-gold-standard.html
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brandi1leigh, you are so right. You are the one living a dialyzing life, so while you can be informed by other's opinions, those opinions shouldn't force you into doing something you are not comfortable with. If your clinic meets your needs and makes your life on the machine reasonably comfortable and successful, then that is really wonderful. I know home dialysis isn't for everyone, and the patients who have to have their dialysis in a clinic should expect good treatment just like anyone who dialyzes at home. I hate the whole idea of inclinic people having to settle for less with fewer choices.
Hemodoc, your blog post was scathing and to the point. After I recover from my righteous indignation, the phrase "Extra Cheese Dialysis" will strike me as actually quite clever. It does make me giggle a bit. Thank you for putting that man straight. That was a hideous entry he posted.
PS...I just saw the link to your blog on RenalWeb. Thanks for the link you put here on this thread. I hope everyone here reads it and feels the same indignation that I do. "Extra Cheese Dialysis" indeed!! Outrageous!
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Thank you Hemodoc!
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Thank you Hemodoc!
You're welcome, but I am in the same boat as everyone else on dialysis. I believe this doc simply said what a lot of nephrologists believe themselves. Sad situation.
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I believe this doc simply said what a lot of nephrologists believe themselves. Sad situation.
To call it "sad" is being way too polite! :rofl; I can think of some other words that would be more fittingly descriptive. :P
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iv been on dialysis 2 and half years, 2years on heamo dailysis were i went in clinic- 6months on pd were i hook myself up at night i also have to go once a week for heamo in clinic as my kidneys were removed pd dosnt give me enough clearence but once a week beats 3times a week sitting there for 4hours can be tough going and sooooo boring! Pd i feel is the best option of dialysis for us dialysis patients it is much gentler on the body you have alot more energy and it frees up your time also the diet is not as strict. For me heamo dialysis wrecked me i had no energy after it and would have trouble sleeping. since iv started pd i feel so much better. I really feel you should give pd ago dont be scared of learning how to set everything up if i can any1 can it is simples!! ok so maybe at the start it would be good ta go and have the nurses care for you as it is daunting but as you get used to the whole dialysis thing give pd ago if the time comes to when you might need dialysis you will soon find that the freedom of home dialysis is much better for you mentally and physically, also though you might not be in the hop as much dont worry the pd nurses or home dialysis nurses if you decide to do heamo at home are great they will keep in contact and check up on you.