There used to be a television show back in my day where the robot would flail his mechanical arms, blink all his lights and yell “Danger, Danger Will Robinson.” Well, we have had our own HHD episodes of “Danger, Danger.” I sort of smile, not laugh at them now. But oh boy….
It seems amazing to be that it has been 3 months now. We are home only a month. If I knew that it was like starting over when we came home, I would have not spent 8 weeks at the center, training. I would have come home sooner. It was totally different. The first day home, I had the Head Nurse come for the visit. She was assigned to me from the beginning and so she is sticking with me. She let me set up on my own, and she cannulated me. We went over so much stuff again, and truthfully, I have no recollection of what she said. The visit went well and no mechanical issues.
Then the next time, my med tech came out. We absolutely love her. She is wonderful. She again let me set up, and stayed for the whole visit. No issues. Again, I did all the set up and take down with her. Things were going too smoothly. She has to cannulate me because my fistula is still very new and tender. One mistake, and I will have a big issue. Personally, she likes us and likes to get out of the office.
Then day 3 hit. I forgot to stop the machine before I primed the lines. “Danger, Danger, Will Robinson.” Once we hit go, alarms started going off like crazy. The med tech let me make the mistake instead of stopping me. There was air in the system, actually the dialyzer, because I did not prime it right. She attached a syringe, pulled put the air and things were fine. The alarms are scary as, well can’t type what I want to say. Needless to say, that won’t happen again, and it hasn’t.
I made myself instruction that are now huge and pasted on the wall with a big stop sign where I need it.
The next week, my Med Tech came out to just get me cannulated. She poked me and then after my pressures adjusted, she left. I have been taking me off the machine for a while, with her assistance, and thought, "piece of cake".
“Danger, Danger, Will Robinson.” I go to hook up the arterial line to the saline bag to do the return of my blood….. and forgot to open the clamps. OH BOY, did we have alarms. We called the company who was so very calming. I was pretty hysterical. They get to you immediately if you are on treatment. He gave us directions to try to fix the issue. Once I took a breath, I realized the clamps were closed. But it was too late. He directed my husband on the steps to do, and he was panicking. He hit the end of the table where I have all the supplies and they go flying. He couldn’t find the right syringe. Finally, we were told to abandon ship and just pull out my needles and leave it. By that time, I was coagulating and that is more dangerous.
Turns out that abandoning ship is recommended more than they tell you in training. They go over all the alarms, but until you are in an actual situation, you cannot imagine what it is like. You call the company, they try, and if no-go in a short amount of time, you just stop and remove your needles. There is less than 50 cc or 1.5 ounces of blood loss. Easy peasy. Come to find out from my med tech, they don’t tell you this in the beginning, but in anytime something happens and you cannot fix it. Just stop. You can start clean later on or the next day or in my case, skip it. They do not want you to do that very often. Also turns out that if you stop the alarm, hit stop on the machine and then go, it will clear a lot of the alarms as well. They show you this in training, but it is totally different when you are on the machine, blood flowing and alarms screaming.
The next faux pas, (ooops) was so pathetic. We had just changed the sak (the dialysate). There is a large claw with three ports on it to connect to the cycler and one of the twist-off ends was gone. I had just primed the machine, saline flowing like crazy and I hear water running. I'm thinking, that’s not right. And sure enough, the open port on the claw was spilling fluid out all like crazy all over my floor. Clamped it, problem solved. Mopped up the dialysate and we were good to go because we had plenty to do the treatment. Funny thing was in center training, I had a line come undone because I did not check the connection. And it poured saline out all over the floor. Now I check every clamp and every connector.
The issue we are having now, and I do not understand it all, is pressures. There is a certain level you want the machine to run at and if the pressure is off, it can be dangerous or stop the cycler. The pressure reading comes from the fistula and how the needle is placed. If it is not drawing correctly, the pressure will go above 250. That is a no no. If the little “do hicky” (access pressure control connector) is on too tight or too loose or it is a full moon, or it is the third Tuesday in Sagittarius…. it will screw up the pressure. You simply stop the machine, adjust where you need to, either the needles or the “do hicky”, and off you go.
I am going to say, and I did not think I would, it gets easier every day. The inventory is not difficult to manage. They do send you a ton of stuff in the beginning to get you going. But you reorder only what you need. The set up and take down are getting smoother and easier every time.
The best news is it is working pretty well. Two months ago, my Nephrologist was really pushing me to go either another hour or another day. I do only 2 hours, 3 days a week. I was not running at full speed yet, which is blood flow rate. And I was on a smaller needle. Getting up to speed (400) regularly and using a 15-gauge needle has proven to be great. This month’s clinic, she said I will stay at this treatment prescription for now. The difference for me, which many people do not have is I still pee A LOT. So, my body is not retaining any fluid and the dialysis is cleaning it sufficiently for now. They have a scale they use which is called Kt/V. Low is 1.2 and the high-end range is 2.4. They want you above 1.2. My clearance is 3.2….. way over the high level. So, I am good.
Would I recommend home hemo now? Yes, I would. Pluses include having everything you could possibly need at home to do this is provided. I am in my jammies and slippers, hair a mess and I sit and read for two hours and talk with my husband or med tech. I start the prep at 8:15. I am usually on treatment by 9:15, and we are removing needles and stopping the blood, clean up and turn off by 12:15 or sooner. All the problems are sort-out-able. Am I still stress? Oh yeah, no lie, I am. But it is getting better with every failure and every success. I am not sure I would want to do this on my own, but many, MANY, do. In Europe, this is the treatment they use much more than us. Single-in-home-HHD.
difficulty with fistula
