Hi Beth,
I’m relatively new to this forum and am glad to have found it . I’m a caregiver to my husband who was recently diagnosed with ESRD. He is on PD and still getting used to it. He has been on short-term disability and is planning to return to work soon.
Currently my husband is at a dialysis facility where it’s often difficult to contact the PD nurse and other personnel because they are either stationed on multiple locations or work only part-time. Other than the once a month blood draw and the MD/RN clinics, all communication to the PD and MD is done via text messages. The PD nurse would like to be contacted during business hours; otherwise, we may contact her only in an “emergency”. This last one gets me because what is an emergency to us may not be an “emergency” to her and not necessarily on her business hours!! Let me also add that we decided to go with this center originally because at the time, my husband was in hospital on an emergency and we did not have time to prepare for this. Case worker at hospital would only discharge if there was a center assigned to us and we were led to believe by the nephrologist(who is also the medical director and co-owner of the dialysis clinic)that this was the only center that offered PD, which turned out not be true as we now know.
I have looked for and found another dialysis facility that offers PD – one with excellent doctors and nurses whom I feel comfortable with. The question I have is if we do change dialysis center, how would the change affect my husband’s current standing on the transplant wait list. Also how does the change affect insurance and Medicare? Currently we have EHP and Medicare. The facility we would like to transfer to is in-network so I should not have any problems switching, nor do I anticipate any issues regarding the carry over treatment to the new place. We would like to know if insurance/Medicare coverage is on a monthly or daily basis? Are we allowed to change dialysis center anytime or are there restrictions on what period the change should take place? Any information you can provide will be greatly appreciated.
Nic.
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I’m sorry that you and your husband are not getting the support you need from your current dialysis clinic . Dialysis regulations require clinics to have sufficient staff to meet patients’ needs and patients need to have a way to reach a staff member when needed. The regulations mention a call service. Do you feel like you and/or your husband had sufficient training to do home dialysis with confidence? Did your clinic send you home with a training manual? Is that helpful?
Having a positive working relationship with the team, including the home training nurse, dietitian, social worker and physician is really important at all times, but especially when someone is new to home dialysis and may have questions or situations that arise that didn’t come up during training. Have you talked with the home training nurse and clinic manager about how you feel? Having a conversation like this can sometimes help to resolve problems.
There are a number of clinics throughout the country that offer PD. Patients can change from one clinic to another at any time. If your husband has an employer health plan that’s in-network and Medicare, there should be no problem with payment if he transfers. Billing for dialysis is done on a daily basis so you don’t have to wait until the end of a month to switch clinics.
Have you talked with the home training nurse and/or clinic manager at the clinic your husband would like to transfer to? I’d suggest making an appointment to do that and to talk with the medical director to make sure they will admit your husband before you let his current clinic know that he wants to transfer. Whenever a patient transfers, the new clinic always requests certain medical records from his old clinic and the old clinic must do that within 1 working day of the transfer by regulation. If he’s using a PD cycler, he may need to return the cycler to the old clinic and get one from the new clinic. The new clinic will want him to demonstrate he knows how to do PD and that clinic may have a slightly different way of doing things. More training may not be a bad thing and may help you feel more confident, Changing clinics and scheduling training before your husband goes back to work would make it easier.
I don’t believe changing clinics would affect your husband’s transplant status. I’d suggest that your husband check with the transplant program to make sure they know who to communicate with at the new clinic if your husband does change clinics. The regulations require dialysis and transplant patients to update each other on a patient’s status.
Our current PD nurse is only available at the center 1 day a week so most of the time, other than the blood draw and RN/MD clinic, we communicate with her via text. I get the feeling she does not want to be bothered too much with mundane questions. I feel very intimated now, after having been told that she would rather get questions during business hours, to have any kind of conversation with her. With regards to the nephrologist, he seems like a nice person but has no bedside manners. He’s the type who expects you to do what you are told. He tells me that I ask too many questions and that I do not have to know all the details! At this clinic, if you are not pro active, you will not receive any attention.
That’s a good point about the new facility may require more training. My husband will not be able to take anymore days off of work. I don’t believe he needs more training because the cycler is pretty easy to use. Instructions as well as pictorials are available on the monitor. We have not had any problems with regards to using the cycler up to now. Most of the questions we had for the nurse were related to other things.
Using the cycler is not a problem, having the manuals is a big help. We have also called the cycler’s hotline when necessary. We are both software engineers so technology is a savior, not a hindrance, to us. It would have helped, though, for her to go over some of the most commonly incurred problems, i.e., slow drainage and possible solutions. But we eventually figured it out ourselves by reading online blogs and being a participant of the home/peritoneal dialysis group on facebook.
The new facility we are interested in is in network and I have spoken to the PD nurse there. The nephrologists associated to his clinic were highly recommended by another doctor, who I have the highest regard and trust. So I’m definitely comfortable with that. The PD nurse who I spoke to said that they are definitely accepting new patients. I do however plan to make an appointment to meet with the new doctors personally, if that is possible. I’m waiting for things to stabilize for my husband before we make the move. In California the waitlist is very long without a living donor so I definitely don’t want to do anything to delay it. We have a patient education day at the transplant center coming up so I will definitely ask about the wait time policy. Good to know we can transfer anytime without getting penalized by insurance. Thank you for your input.
It doesn’t sound like the most ideal experience with the home training nurse. Then again, the dialysis company that owns your clinic may be stretching its home training staff too thin if she’s only in your clinic one day a week.
So far as your doctor saying you ask too many questions, a study that was done by Medical Education Institute that runs this message board found that patients who survived 15 or more years on dialysis had these traits: asking lots of questions, taking action and participating actively in their care, and having a positive attitude. So don’t stop asking questions! Asking questions can keep your husband alive and healthy longer.
So far as “training” it could be very short just to make sure your husband knows how to do PD safely according to the clinic’s procedures. If the clinic is owned by the same company that owns your current clinic, there may not be any differences. Your husband could ask whether any re-training is needed and explain that he can’t miss more work. It might be possible to get the demonstration of competency in your home.
The clinic my husband is currently with is not the same owner as the clinic we want to go to. It would be much easier to transfer if the owners were the same.
Husband’s PD nurse is only there once a week because she is also working at 4 other facilities(within a 30 mile radius). Around my area, it’s not uncommon for PD nurses to work at 2 locations because there aren’t many people on home dialysis, but very unusal for one to work at 4 other ones. You’re right that she is spreading herself pretty thin. The company does not even have enough budget for another PD nurse on staff, to cover for her in case of an emergency. I definitely don’t feel comfortable about that!!!