If your husband chose to do PD, it probably would be necessary for him to take some time off for the surgery, healing, and training. If he chose to do CCPD, he’d have little or no fluid in his abdomen during the time he was off the cycler. This would reduce the chances that he’d develop a leak or a hernia, even if he had to occasionally lift something. From what I’'ve heard from PD nurse friends, if the catheter cuffs are sewn in correctly and the fluid exchanges aren’t too large, the chance of developing a leak is small. Straining to have a bowel movement, coughing, or lifting can cause cause intra-abdominal pressure. Having 2 L of fluid in the abdomen when you do that kind of straining can theoretically cause a hernia. However, from what I’ve read of research in PD, hernia and leaking is much more likely with CAPD than with CCPD and some people are more prone to hernias than others.
Dori discussed the FMLA briefly. People with kidney disease/kidney failure are protected under the Americans with Disabilities Act (ADA) if they work in companies with 15 or more employees. An employee with a disability has the right to request an accommodation that will allow him/her to perform the essential functions of his/her job. As long as the accommodation requested is not an undue burden (usually translates to money), the employer is supposed to accommodate the person with the disability. The employer is also not supposed to discriminate against the person with a disability (whether or not he/she asks for accommodation) in raises, promotions, etc. There are various ways that your husband could ask to be accommodated. For example, he could request to have a partner who could do lifting for him while his PD catheter is healing or he could ask for a shift that would work with your schedule so you could always help him do dialysis. If he worked days all the time, he could “job share” with someone who might prefer to work nights all the time. Some people just don’t do well with rotating shifts and he may find that someone he works with would appreciate having the same shift all the time for personal reasons too. He may be reluctant to ask, but I’d much rather see him ask for accommodation and be able to keep his job long-term than to see him try to “tough it out” and have to shift back and forth from in-center to home hemo and possibly not feel well enough (especially doing in-center dialysis) to continue to work. Having a job that you enjoy is too important in this world.
He could ask the nephrologist and the dialysis clinic about if it would be possible for him to be trained to do everything so if you weren’t available, he could do dialysis with a friend or neighbor as the extra pair of hands to get something when he’s on dialysis or make a phone call in an emergency. With short daily dialysis, this wouldn’t be asking too, too much of someone occasionally. And some patients have hired helpers. When I worked in dialysis, we had a patient who had a hired helper. We trained the technician to assure that she knew what she was doing and the patient was her employer. I don’t know if his health coverage would pay for a helper, but Medicare won’t pay for a helper.
Patients that do dialysis during the day (conventional 3 times a week or daily home hemo) generally have helpers. However, I know some patients on nocturnal home hemo who do not have partners. Even if they have a partner, both are sleeping while dialysis is going on so no one is actually watching every minute. Even though the machine makers have to say that a partner is recommended for the FDA to approve machines, the clinic sets the rules on whether a partner is required. It often depends on the level of trust between the patient and the clinic and, most importantly, whether the patient is medically stable.
I’d also ask the home training nurse if you can talk with patients who have been doing PD or home hemo for at least a year and who have talked with other patients. This is a great way to find out what it’s really like to do dialysis. Staff can tell you what it’s like from a clinical standpoint, but patients can give you the “lived experience.” The people that post on our message boards are another source of information and support.
Finally, I hate to hear staff describe their in-center clinic as depressing. It is true that in-center patients are likely to be more unstable than patients at home, but there are probably some dialysis shifts where patients are less ill than others. Besides, there are ways to make the clinic environment less depressing, including promoting exercise on dialysis, encouraging patients to bring in things to do while they dialyze instead of sleeping, educating and encouraging patients to do as much of their care as possible, and finally, encouraging staff to spend time talking with patients instead of talking with one another.
Plus, you and Dave are somehow going through all this with a new, tiny baby–and probably not too much sleep! More power to you.