Sunday, July 4, 2010

dialysis and other stuff

For those who don't know me or my husband I'll give you a short introduction to a couple of things. My husband has kidney failure and has been on dialysis since 2003. From the beginning our goal has been to find a way to dialyze him at home. Our lifestyle has always been more gypsy than settled, so one of our primary concerns when his kidneys failed and we finally had to start dialysis was that we could still enjoy as much freedom as possible. There are two kinds of dialysis, peritoneal and hemo, hemo being the one most folks picture when they think of dialysis, where the blood is filtered. Peritoneal is where the dialysate fluid is pumped into the peritoneal sac (via a port implanted just below the belly-button), and the dialysis is performed on a 24 hour fill-er-up, then go to bed. The machine replaces the fluid over-night the required number of times for your prescription and then you wear the fluid in your abdomen most of the day - with one change mid-day. It's the most flexible form of dialysis, so that's what we opted to do.

Unfortunately you don't always get what you husband had some complications that put him into the hospital and while there we learned that he had some blockages in his legs that meant we could not do peritoneal dialysis. So they inserted a port in his chest (with a line into his heart- called a "perma-cath") and while in the hospital they began his hemodialysis.

With hemodialysis they typically make a "fistula", where they surgically graft the artery and vein together. That, once it has healed and "matured", allows enough blood flow to accommodate the large exchange of blood required for hemodialysis. There are 5 to 6 liters of blood in the human body. During a normal treatment we usually filter more than 60 liters, so that means we cycle all the blood in his body through the filter about 10 times. It's really quite amazing when you think about it!

Hemodialysis is usually done in a dialysis center 3 times a week for about 4 hours a treatment. You can travel, but only if you can make your appointments every-other-day during the week, or if you intend to go somewhere that has another dialysis center where you can get an appointment and take 4 hours (plus travel time) out of your day. Not really what we had in mind! I work every day, and when we get away we didn't want to plan our trips around the availability of a dialysis center and the appointments that were available for him.

One day while he was at the dialysis center our dialysis nurse came out looking for a patient who might be willing to try a new form of home-hemodialysis. She remembered that our goal had been to do the dialysis at home and approached my husband. She gave him some information to bring home and discuss, and told us it was another option if we were interested.

Were we!! We read all the brochures, talked and talked and talked about it, then told her to sign us up! It required that someone be there with him, and because his fistula is on his right arm (and he has stroke damage in his left arm) I had to be a willing participant and put in the needles, start the treatment, and monitor him. I was more than we began a two week training to do the dialysis. We have now been doing this at home for 4 years....I know because every year on the anniversary of our beginning the treatment a dialysis nurse comes to our home to watch the treatment and "re-certify" me to continue dialysis at home. This is the 4th year!

I have to say, it's been both a blessing and a challenge. To begin with I was a wreck, and he was fairly nervous too. Add to that that it seemed that everything that could go wrong DID go wrong (Murphy's law), but we had support through the company available 24 hours a day, and our dialysis nurse gave us her number we made it through all the trials and tribulations.......and we survived them all! Now when something occasionally doesn't go as planned it doesn't even fluster us - we've gained a lot of confidence and know that we can get through almost anything.

It still startles our neighbors, friends and occasional visitors when they come into the house and find him in his easy chair with lines coming out of his arms and blood obviously flowing through the lines, but we are more than happy to tell them what we are doing and what a blessing it truly is! We dialyze 6 days a week, and the day we take off is more for us than for medical reasons. Everybody needs a true day off now and again. We have the flexibility to dialyze any time of day we want, usually on my work days we dialyze in the late-afternoon or early evening. On my days off we dialyze in the morning, unless we don't want's truly our choice what our schedule is!

And the biggest bonus is that we can take our supplies and our machine and go on a trip if we so choose. We make the dialysis fit our day, and don't have to fit our day around the dialysis. Besides, it's so much more comfortable for him to sit in his own home, watching his own television, with his "protector" dog on his lap while he dialyses. I hook him up, then fix dinner, we eat, talk, I can run around and clean if I want (although I need to stay in the house to monitor him in case something unexpected happens. Mostly we are just more comfortable at home than sitting in a sterile center with strangers "performing" dialysis on him.

It's been a grand adventure and one we hope to continue for many years to come. And the very best part of it is that along with all the other advantages the biggest advantage is that by doing the filtering on a daily basis his health is much better...he no longer builds up toxins for 2 days, then has too much fluid and toxin pulled off at one time making him feel like he's been through the ringer. Every day dialysis keeps the toxins and fluid down, much more like kidneys would. Being at home makes him much happier, and since we like each other and enjoy each other's company, he has maintained a remarkable sense of humor about the whole thing!

If any of you happened upon this blog by doing a search for "dialysis" because you or a family member has a pending need I hope this has been of help to you. Talk to your doctor and ask about the home dialysis options. There is so much now available out there that your life, although it will change, doesn't have to change as dramatically as you might think.

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