my fistula: good, bad, and the ugly, part II

One thing about dialysis, it is not for the faint of heart! You have to get used to the sight of blood very quickly. Another day I waited the usual 10 minutes after taking the needles off, and holding the sight to stop the bleeding, I stood up to gather my things. I heard the nurse up front yell” Sit down, Mrs. G, sit down! I looked down just in time to see  blood spewing from my arm like a volcano; all over me, my gear, my clothes, my feet, and the floor. That was the last time I wore a pink shirt and khaki pants to dialysis. Black is the new red, in my book!!

While I held on to the needle sites for dear life, that sweet nurse cleaned up the floor, the chair, and even washed my feet. No one had ever done that for me, ever! I was truly humbled. Humiliated, and humbled. Nothing brings you to your knees faster than a dialysis treatment gone awry.

The next time I went to stick my venous, I must have hesitated just a hair too long, and in a split second, there was this spray of blood that arced across the room. Fortunately, the quick thinking nurse took hold of the needle and shoved it in, stopping the flow before everyone nearby showered in my blood.

Which brings me to the ugly. So far things really hadn’t been that bad. They joked in-center about my “mt. vesuvious” vein, and the nurses and techs were great at encouraging me to self cannulate, teaching me some tricks along the way.

But only three short weeks after starting to use my fistula I moved over to home hemo-dialysis training.  It was what I wanted, but I was truly ambivalent about leaving my comfortable nest in the center so soon.

After getting my treatments every Monday, Wednesday, and Friday evenings for the last few months, I had to report at 9 am, four days a week for the next 2 weeks. I have never in my life been a morning person, and dialysis was definitely not the place to start.

I started to learn about the Nxstage System One and the Pureflow, making dialysate, setting the cycler, hanging bags, filling out the chart, determining the fluid takeoff, and of course, self-cannulation (the act of sticking myself with needles!).

Truthfully, it wasn’t going so well. By now, cold feet had set in, and, then my home hemo nurse admitted she hated to stick people. It was not a match made in heaven. In short, my venous infiltrated 4 times in 3 long weeks. My blood pressure crashed twice. I was not happy. I was exhausted, I couldn’t eat on the current dialysis schedule, my hemoglobin was dropping, and for the first time in my life, so was my blood pressure!

Before I knew it, and before I was really ready, I was at home, with an entire store room of supplies, the NxStage system, and my care partner, who doubled as my 90 year old mother’s aide. We struggled through the sticks, the alarms, the spills, clamping when I should have unclamped, and unclamping when I should have clamped. It really was trial by fire. I hated it.

Then on a Monday (God, how I hated Mondays by now), my venous infiltrated yet again. It was huge, bruised, black and blue, and swollen beyond belief. I couldn’t do a reverse rinseback, so there went a pint of blood. I nursed my wounds, and told my nurse I would not be able to stick myself on Wednesday. She stopped by, popped the needle in, and went on her way,

Now comes the ugly. She wasn’t gone 15 minutes, when I noticed the arterial and venous pressures on the machine were off the chart, and when I reached over to lower the BFR (blood flow rate) on the machine, the venous needle literally flew out!

I called for the aide, grabbed some gauze and held my arm with all my might, but the blood was flowing freely! We managed to stop the machine, but I couldn’t think fast enough to do a manual reverse rinseback, so there went another pint of blood. Still bleeding, even with ice on it, I called 911. I was more than a little scared, and kept holding on for dear life.

This just about sums up the good, the bad and the ugly, all in one photograph!

Stone Manor 001

After what seemed like hours, but was really only about 20 minutes, the EMT’s showed up, en masse. Five strapping young men crowded around in my treatment room, and not one of them knew what to do. So we waited it out together, telling jokes, and after about an hour, the bleeding finally stopped and I removed the arterial needle, bandaged my arm, and drove myself to the emergency room in the hospital where my surgeon and nephrologist practiced, in another state, almost 50 miles away.

To say I was not pleased is an understatement. Mostly I was mad at myself for not taking control of the situation from the beginning. I hated the crash course in home hemo, and switching from 3 to 4 days a week for treatments. My body wasn’t ready for it, and it rebelled, many times, but I refused to listen to it, and speak up. The end result could have been fatal. I will never become complacent again. No matter how hard it is to speak up, I will, because, honestly, I now know my life depends on it.

However, I am really an optimist at heart, and when all was said and done, the tests showed my fistula was OK, the bruising would eventually go away, and the three pints of blood I lost would quickly regenerate itself, thanks to IV iron and shots of epogen.

But the very best thing that happened, because of this unfortunate episode, was that I got my own “needle nurse”, who was truly gifted at cannulating! She started new sites, taught me and my care partner how to properly stick my fistula, and we haven’t looked back!

As the sticks became easier, the treatments smoother, and the alarms fewer and farther between, I settled into dialysis at home. It definitely put me back in the driver seat, And I liked that.

Here I am, driving through  Monument National Park in  Grand Junction CO,  July 2012.The canyon walls symbolize my struggle with HHD, but in the end, the road took me home, no matter how high the wall!

aspen in July 033

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