Why are there not more people on PD versus HD?

[HouseOfDialysis]

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.

[RealityCheck]

HouseofDialysis, I have great respect for the way you make things work for you.

[Lillupie]

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

[HouseOfDialysis]

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.

[Phil]

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

[Lillupie]

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

[rsudock]

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.
[/quote]

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

[galvo]

"dialysis brain" - love it!!

[RightSide]

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.

[cath-hater]

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.

[YLGuy]

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.

[cath-hater]

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.

[rsudock]

"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

[Lillupie]

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
 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

[Hemodoc]

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.

[lawphi]

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. 

[rsudock]

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

[brandi1leigh]

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.

[Chris]

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.

[Hemodoc]

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.

[lioness]

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.

[M3Riddler]

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....

[romanyscarlett]

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