It has been a while since I have posted about my journey with HHD. It has been five months. Big difference from when I started. A week ago, Friday was our first time totally alone. Up to this point, I had a med tech who was coming to make sure I cannulated ok and got on. She had stopped cannulating me actually the week prior. Of all the things people said would be the hardest, sticking myself with 15-gauge needles was supposed to be the hardest. It is not. Matter of fact, since I am doing it myself, my placement is better and my pressures, once on, are perfect.
But the getting on is the hill to get over. Here is what happened the first time we were to be alone: Thursday night, I had gone to bed at 9:30pm. Around 11:30, we had a power failure. I have lived in this house for over 20 years and the only time we have had a power failure was with an ice storm, The weather was fine. No wind, no ice, no nothing. I got up and went to look around, and our neighbor next to us on one side, had power. Across the street had power. My husband and I are thinking, “it’s just our house”. It seemed a couple of houses near were out but it was also 11:30pm. He got in the car and drove around and he couldn’t tell. He is so nervous that he decided to call 911. They were very kind, but when he told him I had to do dialysis at home, they started asking if it was a medical emergency. Of course, we said no. However, after he hung up, about five minutes later, there is the local police at our door. He also was very kind. He told us there were pockets of outages all over the Village. And as we stood outside with the officer, the whole Village went black. It was the weirdest thing to be outside when it happened. From bright street lights to total black.
We tried to go back to bed, but neither of us can sleep without our CPAP machines. We decided to sit in our matching recliners and pull up a dog to keep warm. He, of course, fell asleep. Around 3:30, the power came back on. And the alarms on my machine went off. I had a sak made and was keeping it ready. I looked up what to do and by 4:00am, went to bed.
By 9:30, I knew we had to get going and so I got up. I went to set up my machine and iPad, and realized we had no internet. My husband went downstairs where the router is and eventually, we got connected. This was all before we even started the process to get on.
I was glad I had practiced with the med tech self-cannulating. I was shaking, but it was from all the stress of everything. Actually, the poke was the easiest of it all. We get the lines connected, and of course, it was alarm time. I honestly do not remember them all, but there were five. We did get eventually going and it was fine.
Now it has been a week all alone. Other than the initial hitting of that little green kidney, I am ok. Sticking myself is easy. Priming and setting up is now almost automatic. I still follow a cheat sheet because ONE mistake screws up everything. It’s pushing the start of flow and seeing what alarms will happen. We are getting a false alarm for blood detection and was told to just push through the alarm. We have had air alarms and pressure pod alarms and mustard up and got through. There is great support when you need it a phone call away. But we have been able to get through on our own last week.
How does it feel? The stress of the initial starting of flow is the only thing that is bothering me. With time, it will get better and less stressful. My labs are improving to the point where they stopped nagging me for more time. My kt/v is over 3. They want a range between 1.4 and 2 and I am way over. My Bun level came down and did others. With less stress, my BP is back to my normal. My phosphorous is coming down but I am on binders. The only thing that went the wrong way was potassium, and that was my fault. My two labs before, my potassium level was normal. After not being able to eat fruit for over six years, I went hog wild. I was eating grapes like crazy which also impacting my blood, making it thinner. We were having a hard time stopping my bleed after pulling the needles. No more grapes for me. I am back to just apples and cherries.
We sort of have our retired life back. We get up but there is no rush to get on. We prefer to be completely done, documentation and cleaned up before noon. That gives us the rest of the day to ourselves. We are on no one else’s schedule. Hubby sleeps in a bit more while I prime. I did my own lab draws. I am doing all the testing of the equipment and cleaning and making paks. Now that we know what we need for supplies, we are not overwhelmed with shipments. What was astronomical to do in the beginning is already on auto pilot. I sit in my chair, read lovely books, and our dogs come down to visit.
I want to add this. I am still grieving. I am not as overwhelmed and crying all the time, but I have my moments. The best thing I did for myself is found through the NKF a great mentor. I am mentor and have been for years for newly diagnosed CKD patients. But I knew I needed support of someone who is walking my walk. My mentor is the best. She has been on home hemo for 26 years. She gives me hope, lets me vent, gives me tricks to work with the machines. But most important, she lets me talk about my anger and frustrations. She validates my feelings and that is important. When I am a bit stronger, I will return to mentoring people who are new to HHD. It is a hard transition and there is little mental health support in the process. If you are thinking about doing HHD or are newly on, find a good mentor. If you are transitioning to any dialysis, and struggling with the life changing process, find a good mentor. You are not alone in your feelings, nor are they insignificant.
Bad luck ! Newly Diagnosed
Bad test results, don't know if I can do this
October 15, 1999 - 2023
Lithium damage, need support
