Sorry about this, but I need to rant...

[angela515]

Also, there is a trade-off, since if you want to have less trouble with fluids by having more frequent dialysis, then you have to accept the burden of more medicalization of your life with additional time on dialysis.

I disagree. I am on PD, and I do the cycler (CCPD). Yes that means I do dialysis 365 days a year, which is obviously a lot more than 3 x a week on hemo, HOWEVER, I do my dialysis while I am sleeping...therefore, it's not taking up any of my time, or messing up my schedules.. in fact if it wasn't for the fact I hook myself up, I wouldn't know I do it because I don't feel it... so when I am sleeping... I'm doing just that, sleeping. (Not thinking about how I am also doing dialysis.)

It usually takes me 5-10 minutes to set my machine up, which is also no burden because if it wasn't for my kidneys not working I would use a 5-10 minute slot multiple times a day to go to the bathroom, so 5-10 minutes to setup my machine is again, not taking up any of my time. It takes me 5 minutes to hook up my drain line and I walk away while my machine drains and I get my children ready for school, when they are gone I throw away the empty bags and again, I haven't wasted any of my time.

The machine itself does not make noise so that is not a burden, and it don't take up any space that is needed for anything, it sits next to one side of my bed where nothing would sit if I didn't have the machine there. As for the boxes of supplies, i'm fortunate my parents have a huge house so they are no trouble.

So for me, MORE dialysis, doesn't mean any burdens. 

[Zach]

More frequent dialysis is simply not available in many countries, and 3 times a week is the standard frequence in first-world countries.  Also, there is a trade-off, since if you want to have less trouble with fluids by having more frequent dialysis, then you have to accept the burden of more medicalization of your life with additional time on dialysis.

And what about transplantation?  Don't you have to accept a burden of more medicalization of your life for that?
The problem is that you can no longer fit into your fantasy of living a "Type-A" lifestyle, so the alternative in your mind can only be tragic.

Alack and alas.

[stauffenberg]

With a transplant the degree to which my life is medicalized is thoroughly minimal, whereas with dialysis I found that the medical intrusion on my life became the central fact of my existence.  All I do for the transplant is: 1) I can't eat grapefruit, which interferes with metabolism of the immunosuppressive drugs, but I didn't like grapefruit anyway; 2) I have to take five pills in the morning and four pills at night; 3) once every three months I go for a check up.  That is nothing compared to dialysis.

Although overnight dialysis at home might reduce some aspects of the medicalization burden, the program of home dialysis in which I was trained at my center required me to spend about an hour a day setting up and taking down the machine; to sleep in an uncomfortable position, totally worried about detaching the lines by moving the wrong way; to spend a large amount of time one day a week cleaning the machine; to be in charge of managing the inventory and delivery of supplies for the machine; to lose one room of my house to the machine and all the supplies; and finally, I still had to report into the hospital once a week for lab work which I could not do at home!  That was still a major intrusion on my existence.

It is important to keep in mind as well that many dialysis patients do not even have access to a home dialysis program where they are treated.  The one at my center only opened up a few years ago, and still only has about 15 patients using it, while the number on in-center dialysis is about 300.

[kitkatz]

Stauffenburg, you are indeed a Ray of Sunshine on our site!

I am happy your transplant is working for you and you are having minimal problems.  However some of us on dialysis are trying to cope with an already difficult situation and find comments such as yours degrading towards our struggle.  I realize dialysis is not a picnic in the park, but I think it can tolerable to an extent.  I know several people on this site who choose dialysis over transplantation and you cannot fault them their lives.  Everyone deals with things differently.

[angela515]

With a transplant the degree to which my life is medicalized is thoroughly minimal, whereas with dialysis I found that the medical intrusion on my life became the central fact of my existence.  All I do for the transplant is: 1) I can't eat grapefruit, which interferes with metabolism of the immunosuppressive drugs, but I didn't like grapefruit anyway; 2) I have to take five pills in the morning and four pills at night; 3) once every three months I go for a check up.  That is nothing compared to dialysis.

I agree, however I disagree with how you talk about dialysis.

Although overnight dialysis at home might reduce some aspects of the medicalization burden, the program of home dialysis in which I was trained at my center required me to spend about an hour a day setting up and taking down the machine; to sleep in an uncomfortable position, totally worried about detaching the lines by moving the wrong way; to spend a large amount of time one day a week cleaning the machine; to be in charge of managing the inventory and delivery of supplies for the machine; to lose one room of my house to the machine and all the supplies; and finally, I still had to report into the hospital once a week for lab work which I could not do at home!  That was still a major intrusion on my existence.

Like I said, there is different types of home dialysis. The type I do does not require me to spend an hour a day to setup and take down my machine. It does not require me to sleep in an uncomfortable position and worry about detaching any line by moving the wrong way. It does not require me to spend ANY time cleaning my machine as my machine does not need to be cleaned. It does not require me to be in charge of managing my inventory or delivery of supplies, the company does that for me and does a great job. It also does not require me to lose one room of my house for supplies and the machine. It also does not require me to go to the hospital once a week for labs, I go once a month, which isn't a burden... and shouldn't be for anyone.

It is important to keep in mind as well that many dialysis patients do not even have access to a home dialysis program where they are treated.  The one at my center only opened up a few years ago, and still only has about 15 patients using it, while the number on in-center dialysis is about 300.

I understand this, I was simply pointing out there is the option to a lot of people, and most don't even know about it. Correct it's not an option for EVERYONE or EVERYWHERE, but it's becoming more available.

And as I said, for ME, it's no burden.

[DeLana]

As a nurse, I understand that hemodialysis patients will sometimes drink more than they should.  I would never berate them for it (I sometimes eat and drink things that I shouldn't as well).  However, I just wanted to point out why it's not a good idea to gain a lot of fluid that your body cannot eliminate on a daily basis (i.e., only via dialysis every 2-3 days).  In the meantime, this fluid creates a lot of pressure in your vascular system - picture a gardenhose with increasing water pressure.  This pressure will damage your blood vessels and also your heart and can cause cardiomegaly (heart enlargement) and subsequent heart failure.  Needless to say, it also contributes to hypertension and the damage that it does to your body.

I have seen patients who tolerate having several kilos taken off each treatment; however, many of them have significant heart disease.  In my experience, patient education is often ineffective, but as nurses - and caring human beings - we do it anyway.

Best wishes,

DeLana   

[nkviking75]

Hang in there Pigsty, While a good number of people may have the discipline to have low weight gains there are probably just as many of us lacking that ability.  I usually gain about 4 kilo's during the week and about seven on the weekend.  I used to get the lectures, but I think they finally accepted the things they cannot change.  I can usually pull off 6 without much problem.  I take 4 tablets of quinine, which virtually eliminates the cramps.  Everyone has to have their own definition of living. I feel like crap 3 days a week (which us 43% of the time) the other 57% of the time I just live life.

Strate, my experiences are pretty similar to yours, although our nurses would say no more than two quinine at a time.  I am very large, so 5 or 6 kilos is a smaller percentage of my body weight than people closer to "normal" sizes.  That being said, I'd still would like to do better with my fluids than I do.  Discipline doesn't come easy to me (no excuse, just a fact).

[Bajanne]

I am really trying to comply with the liquid restriction.  What I plan to do is what my dietitian suggested.  I will use smaller glasses when I do drink.  Sometimes I only need a sip of liquid, but because I had more in the glass, I drank more.

[angieskidney]

I am really trying to comply with the liquid restriction.  What I plan to do is what my dietitian suggested.  I will use smaller glasses when I do drink.  Sometimes I only need a sip of liquid, but because I had more in the glass, I drank more.

I keep my drink in the fridge and only take sips at the fridge and leave it there so I don't drink it all. Hope that helps  

In the meantime, this fluid creates a lot of pressure in your vascular system - picture a gardenhose with increasing water pressure.  This pressure will damage your blood vessels and also your heart and can cause cardiomegaly (heart enlargement) and subsequent heart failure.  Needless to say, it also contributes to hypertension and the damage that it does to your body.

Awesome and informative post DeLana! 

[Zach]

I keep my drink in the fridge and only take sips at the fridge and leave it there so I don't drink it all. Hope that helps  

That's a great idea!  Nice and cold helps the thirst.     

[Sara]

I will use smaller glasses when I do drink. 

That's what I'm trying to do, to help Joe.  Right now we have HUGE glasses and I'm trying to gradually get rid of them and replace with smaller ones.  I can't do it all at once or he will rebel!

[Sluff]

I will use smaller glasses when I do drink. 

That's what I'm trying to do, to help Joe.  Right now we have HUGE glasses and I'm trying to gradually get rid of them and replace with smaller ones.  I can't do it all at once or he will rebel!

Thats a cool way to do it.

[jbeany]

Someone on the website suggested not pouring a glass and setting it on the table with the meal in the first place.  I've been doing that a lot - if it's not in front of me, I won't drink it on auto-pilot.

My biggest problem at the moment is all the pills I have to take.  I'm used to chugging a whole glass of water with every couple of pills.  Given the amount of pills I'm on, I could use up my entire fluid allowance just getting my meds down.

[nkviking75]

Someone on the website suggested not pouring a glass and setting it on the table with the meal in the first place.  I've been doing that a lot - if it's not in front of me, I won't drink it on auto-pilot.

My biggest problem at the moment is all the pills I have to take.  I'm used to chugging a whole glass of water with every couple of pills.  Given the amount of pills I'm on, I could use up my entire fluid allowance just getting my meds down.

My mom often takes her meds with applesauce instead of water.  Maybe that will help.