I’ve heard the statement before that a patient needs to do all aspects of his/her dialysis himself/herself to be considered “self-care” or a home dialysis patient. This is not true. Medicare understands home dialysis patients are not always physically or mentally capable of doing 100% of their own care at home. Some patients need help. This is why home training programs know they must also train partners for home hemodialysis and for PD when the patient is not capable of doing PD alone. I don’t know what Bob’s mental abilities are, but Bob may be able to do more of his dialysis than some people believe. His home training nurse can ask him to follow instructions and see what he is able to do. If he can follow a recipe and understands the importance of doing the process step-by-step in a very clean environment and will not wave his hands over the supplies that are needed to do the exchange, he may be able to do much of his dialysis.
PD patients in nursing homes are considered “home” dialysis patients because the nursing home is their residence. They may do all their PD themselves. However, if they can’t do their own PD, a trained partner can help them. In most cases, the partner is a family member or friend. However, in some cases, nursing home staff have learned to do PD to help their residents. Medicare does not pay for partners to do home dialysis, even if they are staff from a dialysis clinic or in a nursing home.
The Medicare Benefit Policy Manual (www.cms.hhs.gov/manuals/102_policy/bp102c11.pdf) discusses situations where a home patient may need his/her partner to perform much of the home dialysis treatment.
Bob will need help but we are happy to do so. We have cared for him for 21 years so far. My husband and I believe he will be more comfortable at home with the PD and therefore happier. He has been a trooper through all of this including today’s surgery. I know he grasps what this means for him. If he were not sure about it he would not have been compliant. He is so tired of 10+ years of HD. I really hated having to drug him so much he had to be dragged out of the house and onto the van. I think this PD will be physically and mentally healthier for Bob. During the turmoil with the current HD hospital I developed high blood pressure…I have never had high blood pressure. I will be curious to see if it comes back down as we settle into a calmer routine. Personally I am tired of fighting, yes this will be something we have to do every day for Bob…but we all are looking forward to less stress and we are believing the PD will be the answer.
When staff are quick to tell patients and caregivers that having to deal with dialysis at home is stressful, they fail to consider how much stress there is on the patient and caregiver who are having to deal with all the negative things that patients and their loved ones may face when patients do in-center dialysis.
Is Bob planning to do CAPD (4-5 daily exchanges) or CCPD using the cycler overnight while he sleeps? It may be that he is only able to do one or the other based on how his peritoneal membrane transports wastes, but CCPD would probably be less disruptive to his (and your) life.
Please keep us posted on how Bob does. I’ll keep my fingers (and toes) crossed that he has a higher quality of life doing dialysis at home.
Bob is going to use the Cycler while he sleeps. Bob has a Day program he attends during the day. Soon he will be able to attend that 5 days per week.
Thanks so much again for all your support.
The bandage from the surgery is having the tape unstick and our man’s tube is hanging out. We go back Thurs. for a post op exam. The tube is long. My question is once the bandage is off does this long tube just dangle? I fear it could get caught on something? Is there some way to keep it contained some what? Guess I will find out Thurs. I tried to retape the bandage…I do not know how well it will hold.
Call the clinic and ask them if you should retape the tube or bring Bob in earlier than Thursday?
Went to the appt. today and Bob received a “pouch” for his cathater.
The healing is going remarkably well and Bob had the cathater flushed. We go back in a week for another flushing. So far so good and Bob is very excited about this, we all are.
Yippee we gave our handicapped man his first PD treatment at home in his bed last night with his very own cycler!
Fantastic–how did it go? I’ve been following your progress, and admire your tenacity in caring for Bob. He’s lucky to have you advocating for him.