Introduction and questions about PD vs. Hemo

[joseph_towey]

Hello all...
I'm fairly new to this group and as of yet haven't been active in the forum. However, I think that the decision that lies before me now is an important one and I'm hoping that I can get some advice from those of you who have been there.
Allow me to catch you up to speed...
I was diagnosed with Systemic Lupus Erythematosis (SLE) in 1993, at the age of 19. My symptoms included, but were not limited to, the malar rash that is often associated with lupus; constant fatigue; joint pain and swelling; and most worrisome of all kidney involvement (nephritis).
My Rheumatologist began my treatment fortwith, which included high doses of prednisone (which I would eventually be weaned off of), plaquenil, and cytoxan. A fairly standard treatment plan for someone in my shoes. Under this plan, we were able to control the lupus for a number of years.
However, this past December, while visiting my family for the holidays, things took a turn for the worse. I thought that maybe I just had a cold as the flu seemed to be going around...but after a few days my nagging cough turned into my gasping for air and coughing up blood. My parents immediately took me to the ER where I was admitted and a kidney biopsy was scheduled for the following day. As the night progressed, my breathing became more taxing and so the decision was made to perform a lung biopsy as well. To make long story short, while I was undergoing my lung biopsy, my kidneys failed...I woke up nearly a month later to learn that I would now need to be on dialysis.
Well, I have now been on Hemodialysis for two months. And today I met with a surgeon to discuss replacing my perm-cath with a more permanent access (ie fistula or graft). The doctor provided me with some basic information regarding each, as well as the obvious advantages and disadvantages. He also mentioned that he thought I would be a good candidate for Peritoneal Dialysis (PD). Lastly, he mentioned that I should also consider a transplant.
What I'd like to know is this...
Were one of you in my situation (and I'm sure some of you have been) which would you choose and why? For those of you on PD, I'd like to know what you consider the advantages and disadvantages of choosing this option. Same for those that have had a transplant. Any such advice, comments, or encouragement you could provide would be greatly appreciated. Thank you.

Joey

[Ginger]

Joey,
For a good side-by-side comparison of pros and cons of PD vs HD, see 'homedialysis.org'. You can also see what the different machines look like. Some of the other threads in this section also have information from other similar questions.

I personally prefer PD as it keeps my body in a more even state without the ups and downs of HD.
I used a cycler at night and did not carry fluid during the day and can't wait to get back to it so I can go back to work. I currently am on HD after having a nephrectomy and I DO NOT LIKE needles. I am also on the transplant list. PD is more flexible. HD is very scheduled and for me does not match with my work schedule.

Both types of dialysis work so that it really comes down to your preferences and how they fit into your lifestyle. Good luck with whichever you choose. Home is good for either also.

[del]

Joey,  Have you consider home nocturnal hemodialysis. Hubby started this last Oct. and it is fantastic.  He has been on dialysis for 10 years.  He started out on PD and that stopped working after about 2 and a half years.  He then did in center hemo 3 days a week 4.25 hrs per treatment.  There is so much more freedom at home. Might be an option you would like to look at. 

[Maggi]

Hemo at night? Please elaborate

[Rerun]

Hemo at night? Please elaborate

Nocturnal Dialysis is done while you sleep (or try to sleep) and it is done at a lower blood pump speed because it is longer hours.  This combination gives you a better dialysis.  It gets the middle molecule out which is Phosphorous.  You can eat dairy once again.

I would like to do incenter Nocturnal dialysis once I move to Spokane where they offer it.

[George Jung]

I have decided not to go with PD or home dialysis at this point.  I felt like I wanted days off of dialysis and not to have it in my home.  I was severely depressed and felt like if I had to look at a machine at home all of the time that there would be no escape.  I am also under the impression that PD requires constant attention and I enjoy my days without dialysis, otherwise I would feel consumed.  There are clear benefits of various treatments, 3 days a week  seems to be working out fine, my gains in between treatments are under controll, although there are issues such as energy and insomnia (among others), these too are becoming controllable.  There is plenty of material to read here on IHD to aid in your decision, take your time with it and good luck.

[goofynina]

George, i have a machine in my home and it doesnt bother me at all, its just as if i had a DVD player or any other video equipment.  It is in my room which i really dont spend too much time in.  All my supplies are in boxes in my office which dont bother me either.  But you also have your fluid consumption so much better controlled than i ever had, being on PD has been the best for me,  to each their own as they say   Keep doing what your doing brother, especially if that is what works for you 

[tamara]

Well, I have my machine at home  being on nocturnal haemo. I'm on every second night so I still get a "break from it". My machine is in our spare room, supplies are in a

cupboard and the garage, I get three months supply at once, so takes up a bit of space. I have days where I don't want to look at the machine and slam the bedroom

door as I walk out, and I'm only in the spare room mainly when I'm on dialysis so it doesn't bother me that much, especially since I have my days back, and my energy and

blood results can't compare to when I was on three days a week. If you are able to do dialysis at home, this is a great option. But most importantly take it all in, and do

whats best for you. 

[Joanniebop]

Joseph, we, my husband  Chuck is the patient,  are new to PD and have been thru a transplant.

With a transplant ours was not a real favorable result in that Chuck developed othostatic hypotension and wasn't able to get around too well which lead to a few debilitating falls and eventually his diabetes lead to blindness. Because of the immunosupressive drugs he developed numerous skin cancers, which have to be dealt with on a regular basis.

But, that's just what happened to him. I have 2 girlfriends that have had their transplants for over 10 years and are doing great. And no real  "upkeep" like being on dialysis.

We choose PD because of the flexibility to travel, comfort of doing it our home while sleeping, less wear and tear on the body. Just a mild solution swooshing around with no discomfort, no needles.

Hope this helps., but do a lot of research, a little praying,  and then you can decide what is best for you and your life situation.

Joannie

[tweetykiss]

How come a PD does not last long?

[goofynina]

The peritoneum is a very thin membrane that holds  your organs and unfortunately it does give out over a period of time, that is why it is so extremely important that you take all precautions not to get peritonitis.  At least that is what i remember them telling me 

[tweetykiss]

The peritoneum is a very thin membrane that holds  your organs and unfortunately it does give out over a period of time, that is why it is so extremely important that you take all precautions not to get peritonitis.  At least that is what i remember them telling me 

What is peritonitis?  Can it be cured or is it treatable?

[kitkatz]

Peritonitis is an infection of the abdomen lining. Bad, really bad for a PD patient!

[goofynina]

If you catch it early, it is treatable with antibiotics, however, it is very painful 

[rimbo74]

I can only respond to the PD.  I have been on PD since Feb and I'm starting to get used to it.  Advantages are that most people do it at night while they are in bed, since you do it everyday there are no diet restrictions really except to limit phosphorus intake, and since you do it at night you are free to keep your normal work/day routine.

I will admit that the machines can be very annoying at night.  If the machine is not filling or draining fast enough, the machine will alarm at you.  Waking you up to adjust the lines.  There also can be a unpleasant "pulling" or "pinching" pain when the machine is draining (generally caused by catheter sucking on something).  This does not happen to everybody, but I have experienced it and it does get better over time.  Also, the machines are setup to do its required work within a set period of time.  If it drains slow during the night, you will lose valueable dwell time which in return will not help you feel your best.

Instead of a graft/fistula, PD uses a catheter that is placed in the peritionial membrane through the abdomin.  Generally to one side or the other of the navel.  The catheter will stick out about 1ft and the exit site of the tube needs to be cleaned and covered on a daily basis (suggested I should say).

Overall I like doing PD because it allows me to stay active during the day and without a strict diet.

Peritonitis - infection of the peritonitis membrane.  Painful, but can be cured with antibiotics.

[carson]

I just want to let y'all know that there's a lady in my clinic who has been on PD for 27 yrs now, and has never had peritonitis!
I've been on 10 yrs, so I have a ways to go!
 

[goofynina]

I just want to let y'all know that there's a lady in my clinic who has been on PD for 27 yrs now, and has never had peritonitis!
I've been on 10 yrs, so I have a ways to go!
 

  WOAH    Just knowing that is possible is a little bit of a comfort to me (weird huh)   

[Wattle]

I just want to let y'all know that there's a lady in my clinic who has been on PD for 27 yrs now, and has never had peritonitis!
I've been on 10 yrs, so I have a ways to go!
 

  WOAH    Just knowing that is possible is a little bit of a comfort to me (weird huh)   

I don't  think you are weird or crazy ... I feel the same way. We are told over and over PD wont last forever you will have to move to Hemo eventually. Hemo patients do much better than PD patients. I am not hoping for 27 years but I will be happy to keep going for as long as the PD gods will have me!   

[MiSSis]

I'm currently in my 3rd year of my 2nd time on PD with a 16 yr break in between times for a successful kidney transplant.  The first time on PD I was single, able to do PD at home by myself and also worked full time.  Not things I was able to do on Hemo (this was back in the mid-80's).  There was no question in my mind, when my transplant failed, that I'd return to PD.  I had two pretty major cases of peritonitis during my first stint on PD which involved being hospitalized for a week or more, lots of antibiotics, morphine for the pain, etc.  But this didn't stop me from being able to do PD again although the scarring of my peritoneum has reduced my ability to exchange fluids quite as rapidly as someone who's never had a problem.  As a result, my dwell times are longer than those of most of the other patients at my clinic.  I love the more relaxed dietary restrictions of PD versus Hemo.  More fluid, protein, potassium is allowed although I do still have to be aware of the phosphorus and in my case, calcium.  We have a TV, DVD, CD player and stereo all available in our bedroom so I can pretty much occupy my time there while not sleeping.  The only thing missing is my computer and I already spend so much time on it that it's probably best I don't have one there or I'd never sleep!   

Oh, by the way, I lost my native kidneys to SLE also at the age of 23.

[Bette]

I think PD is best for me.  I am a mom of a 1st grader and with PD I am able to be home with her.  I have my days free to do whatever I want, and the PD exchanges are not painful at all.  On hemo I was usually very tired after a treatment, so 3 days a week were usually spent on the machine or in bed.  Now I usually feel the same every day.  I am able to eat fresh fruits and vegtables, which I had to really restrict on hemo.  It is also pretty easy to travel on PD.   They will ship your solution for you anywhere in the world.  I have taken several trips and had no problems.

The best bet however, is a transplant.  My transplant lasted or 13 years.  I has only a few side effects to the medications, mainly weight gain, some hair thinning, and more colds, but I essentially felt like a healthy person.  I was able to live an almost normal life.  I am on the list for another transplant right now.

[goofynina]

I must agree, I feel so much better on PD than i EVER did on Hemo!!!  Mentally and physically, and i also pray that it lasts and lasts and lasts 

[tubes]

I just want to let y'all know that there's a lady in my clinic who has been on PD for 27 yrs now, and has never had peritonitis!
I've been on 10 yrs, so I have a ways to go!
 

27yrs, whoa, that is amazing.  10 yrs for u carson that is great.  i only lasted 9yrs on pd before my membrane wore out.  i couldnt pull fluid anymore and i swelled up like a balloon.  i will tell u this; i did prefer pd over hemo and i wish i could go back.  i did pd during the daytime becuz i partied at night so nighttime pd didnt work for me. i did try thou.
good luck to every1 on pd and i hope u never have to do hemo.   

[Chicken Little]

I've done both and I'm so happy to be back on PD.  Hemo was soooooo boring, but it was easier.  My labs and how I feel are so much better on PD though. 

[MiSSis]

My neph prefers that I try and use the lowest concentration of dextrose solution as possible.  Right now I'm getting great labs and feel great using mainly 1.5%.  I do a 2 hr. pause exchange each evening using 2000 ml 2.5% because I find I don't absorb any fluid that way during the longer dwell time.  For the remainder of my 5 exchanges, I use 2000 ml 1.5% solution.  If I notice my BP is up or I seem to be retaining some fluid, I will use 1- 5000 ml bag of 2.5% and 1-5000 ml bag of 1.5%.  I usually have to do this only 3 or 4 times per month.  My neph's theory is that using the lower concentrations of dextrose is easier on the peritoneum and you won't wear it out as quickly.  As I've mentioned in other posts, I'm in my 4th year of my 2nd time on PD and have been on PD for a total now of 7 1/2 years.  I generally get a UF of around 700-750 ml per night and still pee around the same amount so using the lower % is seeming to work well for me.  Not sure if there's any truth to his theory though.  Has anyone else's doctor mentioned this?

[Ken Shelmerdine]

I chose PD and I'm so glad I did. In choosing PD I feel that dialysis is has not been the life restricting experience that I thought it would be. I do have some diagnosis issues which I'll not go into now as I've covered them in other posts, but generally speaking dialysis has not stopped me getting on with my life. I use the baxter cycler each night which takes about ten minutes to set up and about the same time to dismantle each morning. Nowadays I just hook up, get in bed and forget about it and as long as my restless legs don't start doing the river dance, I usually get to sleep after the first fill when the machines's gone quiet. It does have its disadvantages particularly during warm weather cos you can't just take a quick shower, you've got to also change the exit site dressing afterwards. Also there are swimming restrictions. Swimming in the sea is out because of infection risks although the use of a chlorinated pool is allowed. Can anyone tell me if you can get any kind of waterproof dressing for swimming?