I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: HouseOfDialysis on May 15, 2011, 07:47:36 AM
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I was having a discussion with my Clinic Nurse about this and she's alarmed by how many folks on hemo don't know about PD as an option. I've always wondered that if they are physically viable patients, then why not make the move to PD from in-center hemo? Home hemo I would encourage as well, but I would move anything towards independence as much as possible.
There are quite a few younger people at the hemo clinic that I see from when I walk out of the Home Program building. I see their arms wrapped up in cellophane or gauze after their treatment.
Anyways, my nurse tells me that several nephrologists have put patients right to hemo, be it emergencies or not, and never even put PD on the table as an option. I would think care providers would outline all possible modalities, and let the patient have some input since it is their lives after all.
So why aren't more people going after PD or more home dialysis than in-center? Is it because they don't have to be as pro-active? Do they not know? Physically unable?
I think the ratio of in center HD to PD patients is greater than 10 to 1, and I'd like to see that swing around if possible. I'm just sayin'.
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50% of ESRD patients in my area are on PD. Maybe that's because I'm in the UK where the medical profession has no financial incentive to increase the proportion of patients on HD.
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I would not want to have all that fluid dwelling in my gut.
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I barely notice it, actually. Only if I move too swiftly for my center of balance, that's when I actually notice...
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I think my neph assumed (correctly) that if I need to go on dialysis, I'd choose PD. The conversation went something like this: Her: "If you need dialysis, you want PD, right?" Me: "Yes." end of discussion.
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My doctor did just the opposite... "when you start Dialysis let me know what clinic you want to go to and we can see if there is a opening....." My insurance company has classes for pre-dialysis people.. there they talk about all the options.... but not Home Hemo....as they said there was no one who did home hemo.. just PD... after the class I was given a appt to see a surgeon for a fistula and was told that fistulas are the best... when I went in to the surgeon he did ultra sound on my arm ... and never did talk to me about PD... really no one did...
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I am a youngish new Hemo patient. I do not want to do PD because I don't want to look pregnant (I have always been slender, and do not want to lose that part of my identity) and I do not want to be hooked up to a machine for at least 8 hrs a day *every single day* which to me sounds like hell. So far, I am doing fine on in center hemo. I know I am lucky. My treatments so far have been boring and uneventful, which is just fine with me. I get to catch up on my reading, which isn't so bad after all. I have only had labs done a couple of times, and the #'s show that the D is working. I am getting epo and iron for my anemia, and Zemplar for vitamin D. The only thing I need to figure out is if I am eating enough protein, but even for being on this less than a month, my alubumin was only slightly below normal. Not too bad for a newbie!
KarenInWA
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PD does horrible things to diabetics - it messes with their blood sugar and makes them gain huge amounts of weight. Hemo does neither of those things, which makes hemo a better choice for the majority of diabetic ESRD patients.
Anyone with abdominal scarring may not qualify for PD, either.
Plus, don't forget that plenty of people start on PD but end up with repeated infections so that they have to switch to hemo.
You are right, H of D, that part of it is lack of information, though. Plenty of docs prefer to funnel all their patients into the same path, so the docs don't have to think too hard! They do love that one-size-fits-all approach.
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I think it is a shame when patients are not informed of the option of PD or home hemo, but I can think of many reasons why young patients would choose hemo over.
I've done both PD and Hemo, so I can see the pros and cons of each. The advantages of Hemo is that you get to be free of dialysis whenever you are out of the clinic, so you get four days a week free of dialysis PD would be difficult for someone who has small children at home that they need to care for. I found that after I had my daughter, I wanted my home to be a dialysis free zone.
I was on PD a long time, and is a lot of work, and some people may not want to do that. Plus, I hated the cycler. I didn't mind doing the 4 exchanges a day because I was able to work that into my schedule.
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Medicare's financial incentives are aligned to encourage PD but it has dwindled to a bit more than 7% of the census today (over 90% using incenter, between 1 and 2% using home hemo).
I've heard a lot of explanations as to why but Tyefly's experience is very common. Studies show that when people are told about PD they are much more likely to want to start dialysis using PD. The conditions for coverage require that providers tell people about all treatment options - even ones not offered by that provider - but how that information is conveyed varies a great deal.
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It's all horses for courses really isn't it? I realise that things are different in the States, but those younger people you see with their arms wrapped up in gauze may know about PD but be unable to do it/choose not to do it.
My Blokey can't do PD; it just doesn't work for him and we struggled through a couple of emotionally painful and physically challenging months of trying to make it work. He would love to be able to do PD and I would love for him to be able to do it (although I've made no secret of the fact that I prefer him being on haemoD) if it made him happier/healthier/better. As it happened, he improved dramatically the moment he started using his fistula.
One of the best things for us is that weekends are dialysis free.
;D
If people aren't being told their options, then yes, something isn't right. There should always be a choice, if the choice is applicable.
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Well if you read all above, you get the idea. There are pros and cons to both types of dialysis and treatment choices are individulized based on choice, lifestyle, mental disposition, ability, preexisting diseases and surgery, cost, and physician preference. Myself, I am apprehensive about hemodialysis for issues of nausea and vomiting, fluid and diet restrictions, and driving to a boring center 3 days a week. Also the cathetar looks more disfiguring.
The biggest downsides to peritoneal is drain pain and having to stay hooked up for 8 hours at night or late afternoon and evening.
a
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I did PD nine years ago and last year when I started dialysis it was an emergency situation so I had to start on hemo but I was given the choice to switch later on. Given my past experience, I did not want to do it again. Personally I did not gain any sort of independence from it, I was stuck to a machine all night long and half an hour in the afternoon, which meant I could not go out with friends, I couldn't participate in after school activities, I could spend weekends anywhere, etc. Then there's the pain of setting the machine up each day, writing down my vitals, stuff I don't want to deal with. I also felt too full and would never eat, which drove my mother insane with worry and in turn drove me insane... I know she meant well, it was still aggravating none the less. Also I couldn't hear the machine alarm, I have a hearing problem where I can't hear high pitched noises so my mom invested in a baby monitor, I was 17 at the time, talk about embarrassing when friends came over. The one thing I hated above all was having that stomach catheter, I hate, hate, hated it. So this time around I stuck with hemo, I only do treatment three days a week for three hours, I go in early morning and get out just before noon so I have the rest of the day to go about my business. My weekends are open, I can go out at night, I can pretty much do what I want with no worries of having to be tied down to a machine.
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My husband did PD for two years, but developed too much scar tissue after surgery.
We switched to home hemo as soon as possible.
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Thank you all for sharing your experiences and thoughts. Very valuable.
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yeah,
I think about 90% of those on dialysis are on hemo. Many people i have met at the hemo centers do not know anything about PD as an option. Most places I know dont make a big deal about it or they make it seem like hemo is the ONLY option.
I have been on PD since 2007. I have has two hernia surgeries. My second surgery was in 2009. Lol, I had 2 cathaters, the permath in the chest, and the PD one, of course. And would you believe my center pushed the hemo so much that they wanted me to get a fistula! I got nagged to get a fistula, and I repeatedly told them "I am NOT staying here on hemo, but going back to PD". They said "oh but you can take the fistula whereever you go". Really? you mean to tell me that I am going to get another surgery for somehting that I may or may not need for years to come?" I mean come on! And I dont regret not getting a fistula for one minute since that. Since then I have been on PD wihtout a problem. No need for a fistula. (that was just a side story). Can you believe that? lol
Lisa
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Information on all dialysis options should be made available to people and they should have a choice. PD does not work for everybody and even if it does work at the beginning there is no guarantee that it will keep working (hubby's worked for 2 1/2 years). Not everybody wants the body chjange that goes with PD or the fact that they are responsible for the treatments and have to ahve the supplies in their home. Same goes for home hemo. You are responsible for the treatments and having the supplies in your home. Some people don't want that. Some people have to do in center because of medical reasons. You should be informed of all options and make the best decision with your dialysis team as to what is best for you.
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you have to take which option your neph advises/suggests will give the best outcomes.
me was always haemo, pkd ,kidneys were 27/28 centimetres huge.
the bonus for was knowing 3 times a week i had to go to my volunteer job for 5/6 hours ,
not having to worry exchange here,there and everywhere.
not to mention the risks of infection with PD
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when I was diagnosed and given the options in the hospital if I wanted PD or Hemo I did not know anything betwen the 2. They gave me little information and the only question I could come up with is Can I still go swimming? That's how I made my decision, but after joining here I still thik I made the correct one even though I was going to school and was active riding my bike or walking to dialysis. The thing is I would not have the room for all the supplies and do not care for the tube coming out of my abdomen. I think I like it or feel better when someone else is monitoring and doing something like this on me when I have no support at home. I will go back on hemo when the time comes.
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House- have you called CMC Charlotte and Wake Forest about listing yet?
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All the reasons why I don't want to do PD...
1)don't want a catheter in my stomach...too vain for that.
2)with my type of autosomal recessive polycystic kidney disease I have other internal organs affect by the disease so, PD is not a good option for me.
3) I don't really want to do dialysis everyday...it is already such a mentally draining disease having to deal with it everyday no thanks
4) Don't want to turn my house into a hospital
5)Don't want to turn my significant other into a nurse
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Here in Oz you are offered a choice and both options are explained in some detail including training classes. The doctors recommend PD as a first preference and warn that it has some drawbacks such as scarring and infection. In my case I didn't get past the surgeon who spotted a hernia and directed me to the HD fall back.
Based on my experience of CKD I'd suggest to anyone starting down the same path to try PD first because it certainly lets you live a nearly normal life and go to HD as a fall back solution.
I'm assuming those choices are available to you as they are in Oz.
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Well for us, with other medical complications I kinda like the fact that my husband sees a nurse at D sessions, and he sees the Dr. as well. Kinda like "extra protecion" lol. I know a lot of people seem to wonderful on PD and that is great. I guess it's good to have all the types of options available for what ever suits your need best.
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2)with my type of autosomal recessive polycystic kidney disease I have other internal organs affect by the disease so, PD is not a good option for me.
5)Don't want to turn my significant other into a nurse
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What does number 2 mean? How would other internal organs have anything to do with you doing PD?
I think Pd is the only home choice that you can do alone, and noone else in the house has to deal with it, or needs to help you.
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Here in Oz you are offered a choice and both options are explained in some detail including training classes. The doctors recommend PD as a first preference and warn that it has some drawbacks such as scarring and infection. In my case I didn't get past the surgeon who spotted a hernia and directed me to the HD fall back.
Based on my experience of CKD I'd suggest to anyone starting down the same path to try PD first because it certainly lets you live a nearly normal life and go to HD as a fall back solution.
I'm assuming those choices are available to you as they are in Oz.
I completely agree. Start with PD, and especially if you have residual kidney function left. PD helps keep the residual kidney function longer then hemo. THat sucks about your surgeon and your hernia. You could of got the hernia fixed before going on PD. Oh well. Ive had two hernia surgeries since starting dialysis. But atleast I got a taste of hemo, and a break from doing dialysis every single day.
Lisa
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I don't even think about it now being on the cycler. Sure, I hook up at 8pm, do the dishes, cook, etc, while dialyzing. I sleep for the majority of the nine hours, and yes, I'm tethered to a machine, but I can still live my "normal" life. It just so happens that this is my new normal. Travelling just means I do manuals until I get back to the House of Dialysis. It's my handle and what I call my home, now.
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HouseofDialysis, I have great respect for the way you make things work for you.
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I don't even think about it now being on the cycler. Sure, I hook up at 8pm, do the dishes, cook, etc, while dialyzing. I sleep for the majority of the nine hours, and yes, I'm tethered to a machine, but I can still live my "normal" life. It just so happens that this is my new normal. Travelling just means I do manuals until I get back to the House of Dialysis. It's my handle and what I call my home, now.
If you travel in the US, you can still take your cycler and just have the boxes there when you get to your destination.
Lisa
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HouseofDialysis, I have great respect for the way you make things work for you.
I appreciate that, but all I can do is accept my circumstances and change what I can to suit me. Other than that, no need to fight against something when you go with the flow. It's like water. Swim with the current to get where you need to be.
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At my center ever since I started my predialysis checkups, PD simply wasnt a option. My center only does HD. But frankly....after 1 year in HD I've gotten used to the routine, and wouldnt choose PD if I had a choice. Sure....a fistula isnt something I'd want to have...but at least with HD once I'm done with my session I'm 'OUT'. I might feel a little tired in the afternoon after my session, or have a little nausea...but with PD you basically live with dialysis 24/7.....exchanges every few hours, keeping everything sterile at home (and everywhere else), keeping stocks of equipment at home...not to mention a permacath and all the problems related to that..... no...I'm 'Happy' on HD lol
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not to mention a permacath and all the problems related to that..... no...I'm 'Happy' on HD lol
Phil, PD does NOT have a permacath! Yes it is a catheter. Huge difference between a permacath and PD catheter. From my understanding a permath almost always, always, gets an infection at one time or another. For the PD catheter, I have had mine for almost 4 years and never, ever had to replace it or get another one. Did I have an infection? Yes, once, but that was MY fault. And I also did not have to have the catheter removed.
A permacath, you will and should replace every so often, and it is not a permanant solution, from what many say on here, neither is the PD cath/. However, I doubt that there are very many people who can say they had the exact same permacath on hemo for 4 years. THe PD catheter is surgerically placed. THe permacath can be done in radiology and you dont need to go completely under for it.
Just thought I would clear that up for you.
I hope you are not mad at me.
Lisa
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2)with my type of autosomal recessive polycystic kidney disease I have other internal organs affect by the disease so, PD is not a good option for me.
5)Don't want to turn my significant other into a nurse
What does number 2 mean? How would other internal organs have anything to do with you doing PD?
I think Pd is the only home choice that you can do alone, and noone else in the house has to deal with it, or needs to help you.
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Hi Lillupie great question...
when I was first looking into the different types of dialysis my liver doc told me that PD would not be a good choice for me. I can not remember exactly why but I am thinking that with the portal hypertension, liver disease, and enlarged spleen I had, that the extra pressure from the fluid would be bad for me since I have so much going on in there. I am going to see the doc today, so I will ask him for a more detailed reason why...I am curious now!! (of course if I didn't have my dialysis brain maybe I could remember!)
xo,
R
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"dialysis brain" - love it!!
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I had asked my clinic what the statistics were on peritonitis for PD patients. They told me that on the average, a patient gets one attack of peritonitis every 2 years. At their clinic, anyway.
Since I'm allergic to a number of different antibiotics, I have to avoid getting systemic infections as much as possible. So I couldn't afford to get one attack of peritonitis after another.
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I've done PD for 9 years. Never did HD. I think PD would have less of an impact on your life than HD does. I do my PD at night while I'm sleeping. I can't see a more efficient way to do DX than while one is sleeping. It doesn't take up any of your time during the day.
I couldn't see how I can manage my full work schedule if I had to go to clinic 3 times a week for 4 hours at a time. That would mean I either had to get up really really early (dialyze before work) or come home really really late (dialyze after work).
As for the "vanity" aspect of it. True that PD patients have a catheter hanging out their tummy, but correct me if I'm wrong, but HD either has a perma-cath hanging out their chest/neck or get a fistula. And I've seen pics of fistulas and sorry to say, some are NOT pretty. Hope I didn't offend anybody by saying this.
Since my PD cath is hidden from public view, you'd never guess that I was a dialysis patient.
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1) The reason I do not do Home Hemo is that I am a single dad without another adult at home.
2) PD is really not an option for me as I LOVE to swim. I swam competitively in high school. I was a lifeguard and swim instructor. I like to snorkel and SCUBA. I live in a place where I can do this year round.
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So everybody has their own personal reasons why they chose one method over the other. Both are fine and both have their pros and cons. I think it's just a matter of personal preference and particular life style.
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"dialysis brain" - love it!!
ha ha! Thanks Galvo!! The other day I was running in to the store to pick something up and I had to walk around 15 minutes before I remembered what I needed! ugh!
xo,
R
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As for the "vanity" aspect of it. True that PD patients have a catheter hanging out their tummy, but correct me if I'm wrong, but HD either has a perma-cath hanging out their chest/neck or get a fistula. And I've seen pics of fistulas and sorry to say, some are NOT pretty. Hope I didn't offend anybody by saying this.
Since my PD cath is hidden from public view, you'd never guess that I was a dialysis patient.
Whoo hoo another dialysis patient who sees things my way :cheer: :thumbup; :2thumbsup;
Exactly and I totally agree with you. I didnt realize how ugly those things look until I went to a hemo unit. Yeah my PD cath is hidden well too. Noone will ever know I was on dialysis unless I tell them.
Lisa
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My wife's cousin is a hemodialysis nurse that we saw last weekend. Being in the business of in-center dialysis, I educated her on the aspects of home hemodialysis which she had not yet had any experience. During this converstation, she looked at my fistula and said why is it so small, referring to the fact that I don't have any aneurysms on my fistula. (It is actually 1.6 cm in diameter at the arterial site, so it is a good pipeline) I explained that I have had a buttonhole since I could handle the 15 ga needles. My fistula is now 5 year old and doing well. Ugly fistulas can be prevented if folks learn how to self cannulate and use the buttonhole needles.
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RSU: I wonder if PKD can affect the ascites sometimes found in the liver? Hammett has a cystic disease like ARPKD, but no liver issues.
Hammett's fistula sounds just like Hemodocs. It is nice and flat. He has a minor round scar from the button holes and a scar from the surgery on his lower arm. Retin A would improve the surgical scar in a few years. Now, it does buzz if you were to touch his arm.
Hindsight is 20/20. It would have saved me a lot of tears to have known that my husband would not be deformed with a fistula and could use NxStage at home.
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RSU: I wonder if PKD can affect the ascites sometimes found in the liver? Hammett has a cystic disease like ARPKD, but no liver issues.
Well from what the docs tell me and the studies I have read about ARPKD this disease presents with cysts in the liver. Also the liver ends up getting scarred b/c of the portal hypertension. Also the spleen sequesters platelets making it enlarged. Of course Neil and I have scarring of the liver but no cysts...that I know about....
xo,
R
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I'm a relatively young Hemo patient. I was given all the options, but ultimately decided in center was probably best for me. There were lots of pros and cons for both PD and HD. While I liked the idea that traveling was easier on PD, my reasons for choosing in center are:
1) My doctor said I could do either one, but because of the size of my PKD kidneys she didn't think PD would be an option for too long. Eventually I would just run out of room inside. I didn't want to get used to PD only to have to switch to in center. I don't do well with change, so I really wanted to get settled.
2) I live alone. Completely alone. While I realize that you can do PD by yourself, I was uncomfortable with the idea of being by myself if something went wrong. I'm educated about my disease and dialysis, but at the time it just seemed really overwhelming to deal with PD by myself.
My center is really good about providing all the options. In fact, every 6 months or so, someone (who doesn't regularly work at my clinic) comes by to ask if PD or home dialysis might be a better option and to just check in. While I find in center very difficult, I would still make the same decision now that I made a year ago when I started.
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This came to mind about Hemo vs PD
"Miller Lite Taste Great, No! Less Filing" TV ad years back and P.T. Barnums quote of "You can please some of the people some of the time, but you can't please them all" That's if I remember his quote right.
Just glad there is a choice and not forced into oe of them I may not like. While PD maybe best, it is not best for some of us due to various reasons.
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If you look at survival data, you get some interesting match ups.
PD = in-center conventional hemodialysis.
Daily, home, nocturnal dialysis = cadaveric transplant. (There is some evidence that short daily approaches this as well)
Living donor transplant has the best survival but is not in any sense a cure. There is still a survival loss compared to people with no renal disease.
So, when looking at these issues from a survival basis, with risks outside of the usual in my case, I chose daily home hemodialysis.
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Here in Germany there are only about 5% of dialysis patients doing PD. On cycler or manual. As I had to experience myself, there definitely is a lack of information by the docs. My nephrologist just started talking about setting a date for getting a fistula. He had never before even mentioned dialysis as a possible outcome of my kidneys not working as they should. I was totally shocked. Fortunately my sweetheart knows a female nephrologist who (unfortunately) practices about 400km from where we live. But I could talk to her on the phone, fax her my data. She was the one telling me about PD and that she thinks it the better alternative for people who still want to go to work. When I asked my own doc about PD, he reluctantly told me that yes, we do PD also, but we don't like it ... because of the infections it might cause. Now I know the only one who does not like it is he himself. All the other nephrologists there (all but one younger than him) recommend it for active patients.
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I was having a discussion with my Clinic Nurse about this and she's alarmed by how many folks on hemo don't know about PD as an option. I've always wondered that if they are physically viable patients, then why not make the move to PD from in-center hemo? Home hemo I would encourage as well, but I would move anything towards independence as much as possible.
There are quite a few younger people at the hemo clinic that I see from when I walk out of the Home Program building. I see their arms wrapped up in cellophane or gauze after their treatment.
Anyways, my nurse tells me that several nephrologists have put patients right to hemo, be it emergencies or not, and never even put PD on the table as an option. I would think care providers would outline all possible modalities, and let the patient have some input since it is their lives after all.
So why aren't more people going after PD or more home dialysis than in-center? Is it because they don't have to be as pro-active? Do they not know? Physically unable?
I think the ratio of in center HD to PD patients is greater than 10 to 1, and I'd like to see that swing around if possible. I'm just sayin'.
There are many reasons for this.... One reason is that the nephrologists/center does not give the patient a choice..... They are not practicing " informed consent" Which is unethical but it still goes on. It should be up to the patient to decide which modality of dialysis to go on after all the facts and figures have been put on the table.....
We all need to let our centers/nephrologists know that we want to be involved in our treatment.... We are our own best advocates........
IF someone hands you a pill and tells you to take it, do you take it, or do you ask what the pill is and what it does? The same goes for dialysis....
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I think the concept of PD puts a lot of people off. I find the idea of having a "tap" in my stomach absolutely repulsive and I'm not the only person at my HD centre with this view.
I know someone on PD and he is always lamenting being unable to go swimming with his kids. I am a bath devotee so there's no way I could give them up!
I know you have more freedom in terms of diet and fluid intake but that freedom is not enough to entice me over to PD when weighed up against having to change the water so often and finding somewhere to store all the supplies.
I know in the UK you get a discount on your council tax if you do PD because the supplies take up so much space.
I was offered the choice of going on PD although they did say it may not have been possible due to the plans to remove both my polycystic kidneys and the scarring it would leave. I told them I wasn't interested in PD in the slightest anyway and I was told that they hear that a lot from young women because they don't like the idea of having a large tummy :rofl;