Sitting in the doctors’ office after another battery of tests, my wife Karen and I made small talk as we waited for the doctor to return. We somehow had a feeling that this time was going to be unlike all the other umpteen times she had come in for testing. This time was going to different.
Karen had been diagnosed with diabetes when she was 9 years old, and had been on insulin ever since. The life adjustments she needed to accomplish for that alone had been mind boggling, and she had told me horror stories of somnambulistic diabetic coma episodes, insulin shock emergencies, and all in all having to cope with a disease that needed to be regulated so very precisely, starting at such a young age.
Now, at 30 years old, there appeared to be something else that was happening to her body. Something sinister that sapped her strength, made her increasingly groggy when she was awake, and caused her to sleep almost 20 hours per day.
As the doctor came back into the room, our ears perked up as he moved to the front of his desk and sat down on the top. “Well” he began, “The tests confirm pretty much as I had expected.” He continued as he looked directly at Karen. “Your kidneys are failing, and we will have to get you on a schedule for dialysis”
With a look of abject horror that I have never seen before she screamed “NO!!! NO, I won’t let you hook me up to a machine!” and she fell into my arms sobbing as I looked at the doctor with shattered eyes. “And I don’t have any intention of hooking you up to a machine” our doctor quickly said in as soothing a tone as he could. “You are young, strong, and there is an alternative way to do this, a better way. Have either of you ever heard of peritoneal dialysis-”
“No” I said speaking for both of us as Karen sobbed in my arms, as our doctor began explaining the procedure, how it worked, what’s required for it’s success, and guarding against infection. The more he spoke, the harder I listened, and the more it made sense, especially for my wife.
She had always been very independent and active with many social pursuits, and had never let her diabetes get the best of her. Peritoneal dialysis (or PD as it was referred to) seemed to be the perfect way to allow her to remain active, and perhaps even more importantly, allow her to remain independent.
The procedure went something like this. She needed to come back for outpatient surgery to have a sterile plastic catheter inserted into her abdominal cavity. This was placed below and off to the left side of her navel. After that, they wanted her to wait a couple of weeks before any dialysis, or as they called them, ‘exchanges’ occurred.
In the interim, we both attended classes and training sessions, and a medical supply company was called to make sure she received all of her dialysis fluid delivered to our door. We learned that there were 4 different peritoneal ‘dextrose’ solutions, as they were called, and that they would be administered at different times of the day and for different reasons.
The two most common ones would be the 1.5% and the 2.5% solutions. The dextrose in these would literally pull the liquid impurities from her body through the peritoneal wall, and maintain the status quo of waste removal that her kidneys once did. As long as she stayed on a regular diet with typical fluid consumption, these two solutions would be more than adequate for the job.
The 3.5% solution, and in particular, the 4.25% solution would only be used for specific circumstances of body fluid retention. This could be very critical since her kidneys could no longer handle the usual job of getting rid of excess fluids.
If she drank too many soft drinks or water on a given day, she would bloat up. Bloating means a person's venal and arterial function becomes constricted, and this can put a tremendous amount of stress on the heart, making it work that much harder to get blood into her extremities. Because she could no longer get rid of this excess naturally, she needed to pull it out of her system quickly, and the higher concentration of dextrose in the solution, the quicker the liquid would be pulled out.
This also meant that they wanted her to do exchanges 4 times per day, or roughly, every 4 hours. The 4-hour period was called the ‘dwell’ time, and the longer the dwell time that the fluid remained inside, the less effective it became at drawing out the impurities in her system. Granted, there was a little leeway for this time-wise, but ideally, a 4-hour dwell time would suit her body the best.
Before even attempting a first exchange, however, the medical staff wanted to let the incision around the catheter build up some scar tissue. This would firm up the area, or toughen it up, and allow the protruding catheter to be handled in a pain free manner.
Through all of this, I did my best to make sure Karen had a pillar of support, as I handled all of the logistics with supplies, and continued to make her as comfortable as possible in any way that I could.
When, after a couple of weeks as the incision healed properly, we did the initial two exchanges at the hospital clinic, as the nurses went over every procedure in detail. Karen handled it all very well, soaking in all of the information like a sponge, and even from those first moments, the fact that she was able to control this aspect of these new procedures, was softening the blow of dialysis as a whole. The next day, however, it would be up to us.
There were actual butterflies in my gut on that first morning when we were on our own. Following the procedure that was taught to the letter, she had lain out the transfer set (the tubing which attaches to the permanent catheter which is then connected to the fluid bags) the correct solution bag, a drain bag for used fluid, rubber gloves, a mask, and a sterile hand cleaner, which we both used. After attaching the transfer tubing and hooking it all up to the drain bag, the time had come.
"OK, ready," I told my wife while lying on my stomach at her feet, as she sat on the bed. An instant later, she released the clamp, and a steady stream of 'used' dialysis fluid began entering the heavy plastic bag that was directly in front of my face.
I watched carefully as the solution ran into the bag, making sure it was crystal clear. I placed my hand beneath the bag and looked through the liquid that was pouring in, making sure I could see every fingerprint on my fingers directly through the liquid.
The enemy here was cloudiness in the fluid. Had there had been any sign of that, red flags of danger would have sprung up in my head, and I would have instantly alerted her to the seriousness of the situation. You see, cloudy peritoneal solution is the first sign of infection. And for a diabetic with non-functioning kidneys, an infection, no matter how small, can become a very serious problem. That was why I studied the solution so intently, and that is why by running my hand beneath the bag and making sure I could see even intricate details like my fingerprints, I was able to breathe a sigh of relief during this transfer of peritoneal solution, as it remained crystal clear.
From this moment on, and as often as I could, 4 times per day I would ‘assume the position’ as we called it, by taking my place at her feet and watching the used fluid drain into the bag. As we found out, this became an incredibly effective way to see cloudy drain fluid, and although rare, when the solution exhibited even the least bit of cloudiness, antibiotics could be administered and at no time was Karen ever adversely affected by a rampant infection.
After a few weeks of doing exchanges, she began to literally tune in to her body’s need. If she had an active day, she had less fluid in her system, so the 1.5% was the best choice. For special occasions and holidays, which invariably meant a higher liquid consumption, she would typically use a 3.5% solution.
From that first moment on, we always carried a dialysis emergency ‘kit’ inside the trunk of our car. This consisted of 4 transfer tubes, 2 of each kind of solution, several pairs of rubber gloves, a clean folded sheet, and a couple cans of spray disinfectant hand cleaner as well as a bottle of Isopropyl alcohol. In this way and no matter where we were, if the need arose, she was always able to do an exchange at a moments notice.
As we found out, PD was certainly annoying, but it never became such a hindrance that we stopped doing the things we loved. We were still able to go camping, hiking, fishing and all of the other outdoor activities that she so much enjoyed, as long as Karen was able to do exchanges on a regular basis.
During tent camping, we always informed the ranger on site about Karen’s dialysis, just in case there was an emergency. Although usually limiting our time to 3 or 4 days, a few times we tent camping for as long as a week, making sure to bring plenty of solution, gloves, transfer sets, a fold up chair to allow gravity to drain the solution, and everything else we needed.
Our biggest concern was keeping the area sterile, and this was absolutely critical, particularly in an out of doors scenario, which is anything but. For these excursions we always brought along several bleached white sheets with us, spreading one on the floor before every exchange, then spraying over the top with an antibacterial spray as a precaution.
We would go to the local laundromat and wash these sheets a couple times during that week, and in this way, the sheets always remained clean and usable. Doing this consistently, taking the time to set up and make sure everything was clean and sterile when out of doors, made sure her dialysis always went off without a hitch.
From then on, that was the life that Karen and I led. Since we were married and partners, I did the best I could do to share that life and do everything I could to make sure that her life continued to be a part of my life, no matter what it entailed.