To Everything--Turn, Turn, Turn

We had a long discussion with one of Jason's kidney doctors earlier this week.  It was similar to many conversations we've had recently with his doctors and nurses.  We have been trying to decide what's best for Jason's health and well-being. 
Even though Jason has been on a strict 1100 calorie diet for months, he has been unable to lose weight.  We briefly considered weight loss surgery, but have chosen not to go that route.  We are afraid he will never be able to reach his target weight for transplant while getting the extra calories from peritoneal dialysis.
Jason's labs have shown that he's not reaching optimum dialysis adequacy.  The remedy would be to try adding a half hour to his already 10 1/2 hour treatment time overnight.  The doctor called this "cruel and unusual punishment", so did not order the change.  We are still doing a manual treatment in the daytime as well. 
Because of these reasons, we have made the difficult decision to begin steps towards switching to hemodialysis.  This would be done at the dialysis center, rather than in our home.  There is an option of doing home hemodialysis at some point, but the training and procedure seem rather daunting.
We are planning for Jason to do nocturnal dialysis at the center.  He would sleep at the center three nights a week, while getting an eight hour treatment each time.  This type of hemodialysis is easier on the body since it's longer and slower.  Patients normally feel much better this way.  He would likely be there from 9pm-5am. 
Jason has an appointment next week with radiology for a vein study.  We will meet with a vascular surgeon the following week.  The surgeon will decide whether a fistula or graft access is better for Jason.  The next step will be an out-patient procedure to place the access.  This access site will heal over several weeks before being used.
We are thankful that we have time to adjust to this change before it actually happens.  Peritoneal dialysis has been beneficial for Jason in many ways.  I could personally do it indefinitely, but it no longer seems best for his future health.  We are grateful there are other options to help move toward transplant.

When my husband finally returned home after spending five months in three different hospitals, my profound joy overshadowed any trepidation about the task ahead of me.  I was determined that I could completely manage his care.  Never mind that he was not yet able to stand or walk on his own, or that he was still receiving some nourishment through a feeding tube.  Forget that I was unable to leave him alone since a brain injury had obliterated his short-term memory.  Even though he still struggled with incontinence, I believed I could handle anything.
Those first weeks he was home are truly still a blur.  Even though I was entirely overwhelmed, I was still convinced I didn't need to accept offers of help.  Thankfully, we'd been assigned a nurse who made regular visits, so I wasn't wholly responsible.  She quickly became not only an ally, but a dear friend.  My fearless attitude lasted until the first time my husband fell.  When I was unable to get him up, I simply had no choice but to ask for help. 
During the next several years of caregiving, I grew more and more comfortable receiving support.  I learned the benefits of allowing others to step in and help.  I became adept at receiving assistance in countless ways.  This change did not occur overnight, and at times I still found myself resisting.  I can clearly remember one instance when I tried to decline an offer for help.  This friend stated, "Please don't rob me of the happiness I would feel by helping you.  You would be taking that gift away from me."
When we got the news last year that my husband would need to begin dialysis, I desperately wanted to do dialysis for him at home.  I knew that I would be unable to do this without receiving support from others.  I didn't hesitate when my sister and a friend offered to go through training with me.  This enabled me to take breaks, knowing they could care for my husband in my absence.  This allowed me precious trips to visit my father in Texas after his devastating cancer diagnosis.
As family caregivers, it is often difficult to receive help.  It may be hard to relinquish that rigid control of certain aspects of care.  We may feel as though no one else can understand exactly what is needed.  I've come to realize that receiving support is essential to a positive caregiving experience.  We can glean countless rewards from the strength and energy of those around us. 
 (I wrote this post for Caregiving.com to encourage other caregivers to be open to receiving help)