Here is my latest on my journey in home hemodialysis. I started this process on October 16th. And we came home on December 18th. Many people get home faster but I had issues with a couple of weeks of when they infiltrated my fistula (poked through it and I was bleeding internally). The problem was the fistula was too new. It was weird going through training because I was dealing with so much that the lessons were pretty much bouncing off my head. It was not anything they were doing; it was all me. But, then one day I got it. But for me not being in control and being so confused was very hard. Now I look back and think why was this so hard. It really all comes down to attitude.
One of the things that was not done for me was a preview and a session or two to go over things before I was hooked up. Seems the company went through some changes, and I fell through the cracks on that. This would have made the introduction so much easier for my husband and I instead of walking in and being hooked up that very first day, with no prior knowledge.
We had NO idea what was involved. And now, it is very overwhelming. I am not going to lie here. But things are getting more comfortable. The set up of the machine is no joke. Many things can happen if you don't do it right. Being a trainer for so many years, I took their documents and rewrote them, and color coded it. All the lines and connections are color coded. Now they have a step-by-step color-coded training guide. There is a plastic sheet with all the tubes and cartridge on it and you simply slide it into the machine and lock it. First mistake is that you only get one shot at it. Can't reopen the machine if you get a line in there that shouldn't be.
The bottom of the machine holds they dialysate. There is a whole process for making that. If you get a line kinked or something else, it will alarm. My husband and I do it together with him doing it and me reading the directions to him. You put the empty bag in the tub and connect everything and push go, and 7 hours later it is done. So far, we have been successful. You really have to plan out the timing because the sak, as they call it, is good for only so long. For me, I get two treatments if they are within 96 hours. The whole maintenance for the bottom of the machine is a LOT. We have not learned it all. There is cleaning and changing the pak and some lines which we have not done because they are not due. There are all sorts of water tests which sounds easy, but they are not. She just showed us one that has to be done monthly yesterday. There is a whole schedule of processes that have to be done. To say that home hemo won't take up a big part or your life is a mistake.
Once you figure out the connections and get everything together and it does not alarm, you are set to get poked. There are simple alarms that are pretty easy to fix and others that are very serious. We had one training day when the Nurse went through 28 of them. The pressures are my biggest issue, but that is again because of the fistula. They just need to move the needle now, but before they had to repoke me and that was when we got into trouble.
Now the poking is something else. I had to start with a smaller needle and a slower speed on the machine. What I mean by speed is the amount of times the blood travels through the filter to be cleaned. When I started, I was at 200. The goal is 400 and I did 400 for the first time yesterday. Again, with my fistula being new, I could not take a higher speed for some time. If they push that too soon, it can blow out the fistula. This is one thing that home care can do that you might not get at a center. Also, I now have gone up in a needle size. It looks huge, I am just saying. We decided to go with buttonhole soon. This way, there is little pain when I self-cannulate. For now, I have a tech who comes to the house and will continue to do that for quite some time. Again, this is the big plus for home hemo. She comes in and I have set up as far as cannulation. She pokes me and we watch the pressures to make sure I am good. She has stayed because it's all new, but she doesn't have to stay for the whole process. My husband and I are good now at getting me off the machine.
There are many things to consider. One is space. I have my chair (which is very large) and the machine in my office. If that were it, it wouldn't be so bad. But I have a second wheeley pole so I can reach the saline bag and lines. I have a shelf and an area on the end of my desk table with all the "stuff" like syringes and sponges and so forth. I set up little bins in the room for the everyday stuff and the extras went into the bathroom in a cabinet I put together. THEN, downstairs in our lower lever what was the family room is now storage for all the boxes and boxes of dialysate, saline, cartridges, paks, and saks. OMG. Be prepared. Our first shipment was 30 boxes, and they were not small. We have another shipment coming for 9 more boxes this Friday.
If you are knowing that this is a direction you want to plan on, get the fistula way in advance. My was only 3 and half months in the making and that was too soon. Also depending on your vein size, it may take longer to get strong. Mine is much better now, but we still have to be careful which is why I do not cannulate.
Make sure your partner knows what they are getting into. I have a lot of guilt that my husband's life is so dependent on my dialysis now. Eventually it will be more flexible when we do everything ourselves and do not have to worry about the tech coming over. But I will say, there is still great comfort in having her here and I really like her a lot.
There is so much to all of it, but I still believe the pluses outweigh the negatives. I love the one-on-one care. I really like all the people at the training center because they like what they do, and it shows. I like the fact that I am at home. It is much more relaxed and will be the more I do it. I stress about everything still. Yesterday, I forgot a step (popping the lines for air) and it resulted in air in the line. The tech fixed it in a second but, I am not sure I would have been so cool on my own. Right now, we are working around the tech's schedule, so she comes early in the morning. I am not a morning person. We had to rearrange a few things, and she did also to accommodate us.
Each patient is different. Some who have someone helping them get it sooner and faster. Many patients have someone who does everything and that's wonderful, especially when you are getting used to being on dialysis. Some people do home hemo all by themselves. I cannot imagine it, but I was told there is a lot more training that is done. We would be on our own sooner if we were not going with buttonhole cannulation. That is where they build up a spot on the fistula where they cannulate you every time. It builds up like a earring hole. You then pick the scab off, and the needle goes in painlessly, so they say. But it takes at least 16 treatments to do that and so the tech is coming every time for that especially. Her stopping in gives me great comfort.
The last thing to get in place is attitude. Mine is not there yet. It gets better with time, I am told. It is very hard to accept this is my new life. Someday, it will be not so hard. But for now, for me, it is still overwhelming. There is such an adjustment when you start being on dialysis in itself alone. Then you add all the maintenance and set up on top of it and YIKES.
For anyone considered home hemo, I still recommend it highly. I would suggest that you and whoever is going to be working with you go and see the facility where they train you and have a good understanding of what you are getting into. The process itself is not bad and I would certainly take it over in-center. I also recommend talking to other patients who are on home hemo. That is really great because you get the true picture. Someday I will look back on this all and think why was I so upset and stressed. But for now, it is a lot.
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