It has been the hardest month I have ever had in my life. I promised I would write an honest and complete description of the process.
I started on October 16th. The first week, I wrote about already. Not too many issues. But in my head, I was so overwhelmed. I was not ready for dialysis mentally in any way. I have not EVER felt sick. I have had little to no edema. No shortness of breath or other issues. The only time I was every really bad with CKD was when I was passing kidney stones like a goose or in 2018 when I just retiring and majorly stressed. Once I switched to a renal, and then mostly plant-based diet, I felt fine. I was working out and walking 2 miles or more a day.
Well, that is OVER..... for now. Be prepared to mourn. And no matter what anyone says, you have the right to miss your old life. I have fought the fight of not being sick my whole life with first with being a person of size, then the psoriatic arthritis and then the CKD. And since I still do not feel sick, I was in no way prepared for this process. And I was angry and I still am. But I am learning to accept it.
They started me on learning how to set up the machine on day two. This at first is terribly scary. Then, one day it clicks, and you think, why was I so overwhelmed? I was because this thing, this machine, is taking my blood out of my body and putting it through a bunch of tubes and fluids and then pushing it back into my body. MY BLOOD. Any one who does not see this as scary and overwhelming..... But it does get easier.
There is a plastic (oh, don't get me started on the amount of plastic that is used in health care) flat cartridge that has all the tubes and connectors on it. You pull off the tapes and tighten the connectors and slide the whole thing into the machine and close it. You hang the tubes. Easy peasy and I am not making that up.
Fresenius supplies everything including Bluetooth technology. I have an IPAD I sign into and that is what will be monitoring the machine. I have a Bluetooth scale and I could have a Bluetooth blood pressure cuff, and both send their readings right to the IPAD. I will be using an NextStage machine. Unfortunately. BP monitors are terrible on me. So, I use a wrist cuff one that I can turn off and on with my nose.
Now comes the hard part. This was so difficult at first and so scary. YOu connect all the lines to the various other lines. You have to prime them to let out air, and then clamp them. There are basically five lines. But when you first set it up, it seems like there are a million. You have your red arterial, blue venous, saline line and a waste line and a fluid to the machine line. It is all color coded and the more I do it, the easier I get it. But I needed the time to calm down first.
There is more to setting up and I will get into it in another post. But I want to share the good and then the bad first. The Good is,.... if you can do home hemo, DO IT. The people at Fresenius, or at least my center, are the BEST. I have two clinicians assigned to train and monitor me. One is the Charge Nurse. She is Ex-Army with I believe over 20 years of dialysis experience. She is no nonsense and that's just fine with me. And the other is my Med Tech. We just love her to pieces. She also has multiple years of experience. I train with my husband in a private room. He is learning to do many of the maintenance and help me to do things I cannot do be myself. He is my hero right now. The Freedom Center is staffed with wonderful clinicians, and a heck of a riot Admin. It really is like family. I know I am blessed to be there as I know I would not have handled an in-center. My Nephrologist, who I have had for over 20 years, sees me every month right at the clinic. The best thing is they listen. The original plan was for me to do four days a week, 2.5 to 3 hours a day. NO way did I need that. And they were going to take off fluid. The couple of times they tried it was horrendous with the cramps. Not only there, but at home all night. So now, no fluid. As I develop edema, they will address it. So for now, my prescription is 3 days a week, 2 hours.
But here is the bad..... they will not know for a while if that is working and is enough. I had a bad couple of weeks. Two weeks ago, on Monday, they blew through the fistula. It is called infiltration, and it means they went through the vein and popped put the other side. And instead of just stopping it, another clinician came in and poked another place up higher and did the same thing. I will not lie. It was extremely painful, way worse than the surgery. I could not move my arm. They iced it and sent me home. That night I lost it completely. I had a complete and utter meltdown. I cried for hours. The arm blew up and the bruising started. But it was more than that. It was everything. Wednesday, they tried again but the arm was so injured, I was given a reprieve until the following Monday. My arm looked horrible and was in pain for days.
For now, only Nurses can cannulate me. The fistula was too new and needs to harden and get bigger. It was no one's fault really, and it is common to go through this. But it still hurt like a MFer. Two weeks later and it is much better and this week, I was able to have three treatments.
So now I am more comfortable setting up and putting the lines together. We, my dear sweet hubby and I, are learning to work together on things like removing the needles and we practiced cannulating yesterday on a dummy arm. I am beside myself with how amazing my husband has stepped up to help. We pulled needles together on Monday and I spurted a bit a blood on him. He turned white. When we got home, we talked, and it finally hit him what was happening and how much is involved. He is willing and ready now. He too has to learn to accept his fully capable, full on energy wife, who manages everything is not the same anymore.
I will write more because there is so much more. I do want to encourage anyone who is deciding what dialysis to try to go to a home center and check it out. It is possible to do home hemo by yourself. I am learning how to be mostly independent. They have all sorts of tricks and tools to help patients who are by themselves. But this is the best part. You never are really alone. I was afraid that they were going to toss me home before I was ready. Nope. I will probably be training there for another couple of weeks, or as long as I need. Then THEY COME TO ME IN MY HOME FOR AS LONG AS I NEED. I was shocked to hear that. They have had patients who they come out an cannulate for over a year. There is 24 hours clinical and tech service. And there is respite if you need a break and want to come back in house for a bit.
This is long enough. There really is a lot to this. Is it all sunshine and roses? Nope. But if I have to do this, I am glad I went this route.
My 1st week of PD at home
Peritoneal Dialysis
Dialysis or Transplant?
