So what is your experience with ur nurse and nephrologist on helping you through with PD?My clinic basically put me on cycler ONCE. I was not able to get through initial drain that one time. And now they are not doing anything to help me out in learning how to get on the cycler. There’s no plan at all to try again, they have completely ruled that out on the one and only try. Immediately they are talking about “PD might not be right for you” and starting to suggest I consider in center hemo.
This doesn’t seem right. How can one try it only once and conclude? They made no helpful suggestions on how to get around drain pain (all the good suggestions, I am getting from this forum).
Is this how clinics are supposed to treat patients?
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curiousmind2019
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Wow, this certainly seems like they should try longer. I’m not on dialysis yet. But I’ll expect more support from my center when the time comes. Have you talked with your nephrologist about this? Also, do you have the option to try a different center for dialysis?
It was actually the nephrologist that was saying all this. I brought up some of the suggestions around tidal, different machine settings, or even suggestions that I do a manual drain everyday so they can be sure no overfill at least at the end. That was so disappointing and frustrating.
I am starting to call around other dialysis centers and will go check them out. See if there’s some more friendly staff that are willing to work with me to figure things out.
I moved to my current home in July of 2018. Of course I had to change medical people. My original nephrologist, prior to the move, had spent a lot of time providing patient education for me regarding renal failure treatment options. He had STRONGLY suggested PD dialysis for me. Thus I had made the decision to try PD dialysis first.
My first nephrologist in my new location didn’t bother to tell me that he doesn’t prescribe home dialysis, ie, either PD or HD, for any of his patients. His words, “I only do in center HD so that’s what all my patients do.” His prescription apparently has nothing to do with what his patients can do nor what his patients would prefer to do. I’m still working full time and intend to do so for another 5-6 years. So the other problem was the clinic he would force me to use. It’s relatively new; a fresenius Clinic. I’m fine with fresenius; however, this new clinic is only open to serve patients three days a week from 8am-2pm. Even if I was willing to do in center HD, doing it at this clinic would wipe out 3 of 5 work days each week for me.
I still remember how intractable he was. I asked him about halfway through this somewhat alarming conversation whether he had any patients on in home dialysis, either PD or HD. That’s when he said what I quoted earlier.
Mind you, I had been talking about PD dialysis in EVERY appointment. I had been seeing him for close to 9 months when he finally shared his plans for me with me in a November appointment. I was shocked and very concerned.
At that point I began hunting for a new nephrologist. I talked with nurses who direct all the dialysis clinics within 10 miles of my new house. My goal was to get their advice finding a new nephrologist who at least supports in home dialysis options, HD, PD, and solo HD. (I live alone.) The nephrologist practice I have shifted to was recommended as either the best or second best by all nurses. The nephrologist I selected in that practice had the highest healthgrades rating and was one of the top three recommended by these nurses. (The top nephrologist in this practice doesn’t serve patients in my area of the city ...)
I’ve been seeing my current nephrologist and nurse practitioners since late May of 2019. He definitely embraces PD dialysis and sees no reason why we shouldn’t try it for me when the time comes. He’s also open to considering solo HD for me should PD not work well. Unlike the poor nephrologist, my current nephrologist has actually actively treated my renal condition as a few new issues have cropped up. He also insisted that I get through transplant eligibility testing...
This is your life and your body. You’ve got to live with this treatment option. As long as its not medically dangerous to try to work with PD dialysis longer, I’d certainly expect my medical team to work with me on this treatment option! Frankly, this is pretty tough to embrace as it is—we need medical teams who have OUR best interests at heart and truly consider us to be team members whose input is invaluable to achieving strong treatment outcomes!
I'm sorry you're having so many problems with your clinic. My experience has been the opposite. They are very helpful. I and my daughter in law received servers afternoons of training to do manual PD. Then, as I switched over to using a cycle, we received another 2 training sessions to make sure we knew what we were doing. I feel much better doing PD than I did during several months of HD. I did have some draining problems that require me tho wake up and sit up to complete d drain. I've had 2 surgical procedures to try and improve draining but still only drain about half before the alarm awakens me to sit up. I'm getting used to it and it's worth doing. I feel so much better this way that I don't want to go back to HD.
Thanks for your interest. Both surgeries repositioned the catheter and sewed it to hold it in place. The first time he used dissolvable stiches. After they dissolved, the catheter moved and stopped draining. A few days ago, he repeated the procedure using permanent stitches. So far, it's draining very well except that I still need to sit up to completely drain. Lowering the cycler, which is a Baxter Amia, doesn't help. I suspect of be ok if I slept on my back in an elevated bed. That's my story so far.
Hi, I just found this thread. I'll be starting Manual PD training in a few weeks, just had the catheter put in place this past monday. I've also requested the Baster Amia since it's more "portable". Other than sleeping on your back in an elevated bed, do you have any other suggestions for using the Amia?
No this is not ordinary behavior. My first suggestion would be to reach out to your home nurse and discuss your concerns with her. If you need to write them down and have them read it, do it that way. If you feel they are not giving you enough help and/or listening to you and communicating with you it may be best to seek out a different nephrologist and clinic. Best of luck.
Get a new Nephrologist which usually means a new PD Nurse. One time attempting to use the Cycler shouldn't be the end of using PD to dialyze. Unfortunately some doctors and nurses shouldn't be practicing Medicine any longer. Especially when patient care is no longer on your radar. The holidays are approaching. Hurry and find you a new Nephrologist. Try Healthgrades it has patient reviews of doctors regarding their experience. Good Luck!
I sold agree with a new Dr. And a new clinic. My clinic was super helpful they did 2 days of training and made sure I was comfortable and understood everything. They also had a nurse come to my house set everything up for me and again made sure I was comfortable with everything. I did have to sit up after my last drain so I could do another drain because I never did fully drain out. So that is just something u might have to do everytime. Good luck with everything.
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