I have finally started PD and I have got to say, all of the material I was given prior to making this choice was very misleading. *I was told there would be a FEW inches of cather that was actually exteriorized. I have about six inches of catheter then a titanium connector and then a white and blue connector, with a total of about 12 inches of stuff hanging out of my gut.
* I was told that people would not be able to tell that I had a catheter. I have a bulge on my left side, where my catheter is. It is very obvious and impossible to conceal.
* I was told that I would hook up at bed-time and my dialysis would be done at night, freeing up my evenings with no need to dialize at any other time. I have to do a manual exchange at 2:30pm, at work, another exchange, on the machine at 6:00 and then hook up to the machine at 9pm, remaining on the machine until approximately 6:30am.
I do feel better, energy wise but I am constantly bloated due to the 2.5 liters of dialisate in my peritonial cavity. I am not so sure that I would have made this choice had I known everything.
Does it get better? Is it normal to have to do so many exchanges? I had really hoped to just do it at night.

Mick,

PD has changed since the early 80's and continously changing. Your exchanges may change as your KT/V increases or decreases. PD is no different than Hemodialysis. HEmo patients are frequently asked to change their run times from 3 to 3.5 to 4 hours.

When the RN is changing your exchanges, just remember that they are doing it to benefit your health, and they are not doing it to be mean. You may want to ask yourself, Do I want to go to a Hemodialysis unit and sit for 4 hours every other day, or do I enjoy my freedom and will continue to do PD because it allows me to work and travel?

Just a thought my friend, life is full of changes, we just need to roll with the punches

Another thought, If it's available in your area have you considered slow nocturnal. It is done at night and no need for extra treatment time. It's the same as in-center treatment with the exception of running at a slower speed and getting an 7-8 hrs treatment 6 nights a week instead of 3 to 4 hrs. 3 times a week-in center.

Jon,

I changed to PD to get some of my life back. However, with an exchange at 2:30 (about 45 minutes) another one at 6:30 (another 45 minutes) having to get on the machine at 9pm, and doing this every day as apposed to three times each week, I have not really freed up any time. As a matter of fact I have lost about 6 additional hours each week. That does not include time it takes to set up the machine, clean up, etc. My main complaint is that I was told that I would be dializing at night, no additional exchanges. I was not told about the afternoon and evening exchange until about an hour before I loaded up my supplies to go home. I think the staff and doctor should have given me more information upfront, before I went in to have the cather put in. This is just another case of very poor communication with the patient.

Hi:

In addition to JoAnn�s contribution, I might say that I was on home hemo for quite some time and could not recommend it strongly enough.

I�ve written of my experiences under the "Your Words" section at www.renalweb.com
You might want have a look.

Best,
Mike

[This message has been edited by Michael Williams (edited 09-10-2001).]

Hi
Sorry you are having a rough adjustment. I have been a home hemo patient, dialyzed at two different centers as an in-patient, and have been on Peritoneal Dialysis for 6 years. My current dialysis perscription is very similiar to yours. Yes, it is a bother...but, you are getting very good care. Be gratful for that. It seems that every time I have to change dialysis modalities, its rough. You just have to get over it and make what you have work for you. I am sure you can look around and find people much worse off than you. Never stop counting your blessings and never stop looking for a better way to do things. I think providers tend to overlook the constancy of P.D. I mean there are no breaks and it does get oh so tedious. But, you know so does washing clothes, cooking, and paying bills. Make the best of it.

Mick,
I can sympathize with your frustration and malcontent about the communication that you received about the PD. I try to inform my pts. that PD is a second full time job that you can't afford to quit. However, let me offer to you some very important things to think about in being very satisfied with your choice.
If you had chosen intermittent Hemo in a center, yes, you'd only be going for 4 hours times 3 tx's per week. On those off dialysis days, you'd accumulate a certain amount of fluid. This fluid accumulates in your vascular system and your heart has to work all the harder to pump it around. This enlarges the heart, and does so much quicker than with PD. So, you are extending the life of your heart function with PD.
I don't know your weight, but it should be taken into consideration when determining which modality to choose. If you are quite large of frame and heavy, the time factor needed for PD to clear you properly may breake over into the impractical range, and should have been a factor presented to you in your decision process. Good Luck.

Mick,

I have to agree they should have told you there would be a possibility of you needing extra exchanges. This is just one of the reasons I traveled so far with my father to do slow nocturnal instead of PD.

Mick: I don't know what to tell ya. I've been on PD for one year now, and I've got to say, it has probably saved my life. I too have a catheter that hangs out, and I have to do four and sometimes five exchanges a day, I can't work, and right now my feet are swollen badly as a result of fluid overload. But trust me, compared to hemodiaylsis, this is a breeze. Would you rather be hooked to a machine for five hours a day three days a week? No getting up and walking around, and no doing it at home-you'd be at some center. It will get better. Just hang in there. You are not alone.



[This message has been edited by Michael Williams (edited 09-10-2001).]

all that are dissatisfied with dialysis, just quit doing it......then see how much un it is pushing up daiseys;

Jeppitts,

I was on hemo for over four years so do know what it is like. I much prefer PD. I have now been on it since August and have adjusted well. My only complaint is that the doctor and nurses did not give me accurate and complete information. As patients, we have a right to be fully informed, before we make a decision concerning our treatment. If we are fully informed, adjustment to the new treatment would be much smoother and shorter.

As for PD Patients comment about those that are not happy, they can just stop dializing- All I can say is, we all have the right to be fully informed about our treatment options and then we have the right to choose. If we are unhappy with the level of care, treatment, or communication involved in our medical affairs, we have every right to express those concerns. If we do not express those concerns, things will never improve.

I just have to stick in my 2 cents worth. My husband has been on traditional home hemo for over 21 years, using an AV fistula until 1 year ago when a graft was inserted. Just a few comments from that perspective. Not every modality works for every patient. In center may work for some, home for others. The advantage to hemo is that, if done meticuously, there is less infection. (in our case, NO infections in 21 years) Also, being done three times per week, once you're done, you don't have to worry about it for 2 days. Home patients can set their own schedule, in our case, after work, in the evening. Obviously, home hemo offers other advantages--simply being at home, able to do some paperwork, talk on the phone,etc. (friends have even come over for pizza and a movie, etc.)
However, this may not be for everyone. Fluid must be monitored, lab values may fluctuate more, etc. It seems to me the real issue here is the availability of treatment options based on medical conditions, the information needed to make an informed choice, and a good support system after treatment is initiated.