Like a fortune teller, I see my challenges ahead in the crystal ball of the dialysis machine’s banshee-like screaming. Not the typical alerting blips and beeps. It’s long and loud. This-thing-is-fuuucked-up! The-next-few-days-will-be-filled-with-anxiety!!
I immediately start doing calendar math.
- Friday was an off day
- Saturday the machine stopped working and the machine is flashing error codes and screaming bloody murder
- Sunday the dialysis techs don’t work
- Monday is the earliest someone can come
- That’s 4 days of no dialysis – faaaack!
The weekend was filled with kids activities and a birthday and pool parties, so hubby welcomed the break. I page the tech on Sunday just to double check if they cannot come out since he had not had dialysis since Thursday. Nope. They advised that worst case is for him to go to Emergency if he really needs it. I ask if he can request we be seen early on Monday so that he could do a session during the day after it’s fixed. They will. We have some games and a pool party so waiting one more day is a welcomed break still.
When no one calls by 9:30 (they open at 8) I wonder what’s going on. We were planning to do a day trip, but that gets cancelled so we can make sure the machine is taken care of. I’m disappointed, but the priority will always be ESRD and everything that it touches. I call to find out if we are on the schedule and ensure we are on their radar. Apparently someone called the house but there was no answer. I don’t know whom they are calling since I’ve been up since 6:30 am, but that is neither here nor there. A technician is on their way and will be here in 1-1.5 hrs.
It’s one of the regular tech and we chit chat. He works on the dialysis machine and with calls to the home hemo office of technicians works out that a watch battery was needed. He will go buy one and leave it for the a different tech that will come later to install and troubleshoot more. The second tech comes and Franklin back from golf. He stays with tech 2 who put in the battery and runs some other tests. Tells Franklin to run a disinfectant cleaning procedure and he should be good to go with a dialysis run tonight.
NOPE! It didn’t work. FAK!! Yet another day without dialysis. He’s going to go to our hospital home hemo department to see his designated nurse and do a run there. We cannot wait for them to come again tomorrow (Tuesday) and tale a chance it doesn’t work. At night (Monday night) Franklin is having a hard time breathing. He can’t sleep. He feels “fucked up” and wakes me up. I am filled with fear and anxiety, but also tired AF and try to stay calm. I’ve been here before. Who will watch my kids? Who can I call at this late hour? It’s 3 AM! Faaaak! I ask.if we should go to the hospital. I’ll load up the kids and drive hm down. We’ll wait in the car. Can he drive himself? Should I call an ambulance?! Faaak.
Being so under-dialisized is dangerous. He is overloaded with fluids which is why he is having a hard time breathing. God forbid it gets into his lungs. I’m sure his potassium and phosphates are way too high. And if it’s too too high, his heart can stop. None of this is good for his heart health. A “simple” error code on the dialysis machine is now leaving him in bad shape. Lord watch over him.
He drives down at 7 AM and I wait for the tech to come fix the machine. When the tech arrives it takes hours. With many calls to his colleagues for help, several failed tests, fixing one error code only to get a different error code and then finally……success! He leaves and Franklin is still not back. It’s a slight relief. I will finally exhale when he can have several successful dialysis runs and get back down to his target weight by removing all the excess fluid and toxins. He can’t take it all off in one shot. But with God’s will, we will get there.