It’s another post where I need to purge. Another day where End Stage Renal Disease (ESRD) is effecting my mental, emotional and physical strength as a caregiver wife and working mom.
WARNING: This is another post that is dealing with blood. This may be a trigger to some.
He had another bleed out. This is the 3rd one in 10-years. It’s the nightmare you think about when you are on Hemo Dialysis (HD). We are doing it at Home, so we are part of the special HHD group who must fend for themselves. But, the advantages are, we get to dialyze at home instead of at the hospital 3 times a week, a slow and gentle dialysis over 8 hours instead of a high-speed 4-hour session (less stress on the heart), and you have the comfort of family with you. There’s disadvantages too like, having to store your supplies, never getting away from dialysis being in your face everyday when the machine is beside your bed, not having a nurse watch over you in case an emergency happens, self cannulation, etc. But, I digress. The bleed out….
The panic from the Hubby’s yells breaks my deep sleep at 3:23 AM:
Lisa! Lisa! I’m bleeding!!
I run over to his side of the bed and the blood is squirting everywhere.
I get it on my face and body. It’s all over the dialysis machine, the carpet, a huge puddle on the bed, the tanks, the R/O, just everywhere. The machine is beeping and just adding to the fear.
BEEP! BEEP! BEEP!
I’ve been here before. In 2011 and in 2014 where he lost so much blood and we had to call the ambulance. My two young kids not understanding what was happening. I still remember like it was last year. These complications scar you and induces anxiety every time I hear him call out in the night. But, no matter the fear I feel, I keep my calm to save him and the kids from feeling the full extent of what is happening.
I am in automatic mode. Disconnected from the freak out from seeing the blood everywhere and getting it on me that I look like Carrie.
I get to it:
- I get put the guaze “pillows” and tape the venus hole of his cannulation sites
- I pause the alarm
- I take out the other line, tape a guaze “pillow”
- Constantly telling him
- it’s ok
- you’re fine
- it’s a bit of blood
- it’s not as bad as before
- I’ve got you
- stay calm
- Have him roll over to get out of the pool of blood
- start cleaning up a bit because seeing the blood everywhere is freaking him out more, but it’s everywhere. I try the machine, the floor, the bed, and that’s when I just put a towel over it the bed as he starts to break out in a sweat
He whispers he has to go to the bathroom. I’m just thankful he can still recognize his body’s cues! I lift him and he’s dead fucking weight. I try and steer him to the other bathroom and he bangs into the wall and falls onto the floor. Fuck! Don’t wake the children. I don’t mean to yell at him. It’s not like he can control it, but I cannot have my kids see this and calm everyone down. I get him onto the toilet and it’s a #2. I go to leave him but he starts slumping over. Fuck! It just reminds me how Hubby’s close friend passed away in the bathroom from a massive heart attack. Apparently from a 1st responder friend that many people think they have to do a #2 and they die on the toilet. Anyway, I can’t leave him like that. So I put my foot on the tub and he leans against my leg. And then the farts and smells happen. BARF! This is where I earn the fucking wife of forever award. I tell him he needs to wipe his own butt. He’s like give me a minute. He cannot lift his head and his full body weight is on my leg. Ugh. Thank God he was able to get it together enough to take care of himself after 15 minutes.
We stumble back to the bedroom and he passes out again. He bounces off the bed and onto the ground with a thump.
No answer.. I am all up in his face to check if he’s breather. He moans faintly.
I just let him lie on the floor. The bed is a mess. I point the fan on him. He’s sweating. He’s hot and I put a wet cold cloth on the back of his neck. Now he’s cold but also hot.
Babe, do we need to go to the hospital?
I really hope we don’t have to. It’s covid-19 pandemic. It’s 3:43 am. I have all the kids home. I also don’t want to send him on his own in an ambulance. My only calming thought is that this was not as bad as in 2014 , so I tell myself it’s not a big deal. We’ve been through worse and survived. God I hope I’m right.
I email work to advise what’s happening and I may need to take a sick day. I am exhausted. But, in the end I log in for my 10 am call and work the rest of the day. It’s fucking bananas. I don’t know why I do that to myself. But, I do know. I’m afraid to lose my job during this time. I need to work. Be invaluable. Provide.
I break to feed the masses and myself.
- 2 breakfast burritos
- a ham and cheese quesadilla
- 3 banana/orange slush smoothies
The boys are amazing. Middle boy watches Baby when he wakes up and keeps him out of the master bedroom. Feeds him a banana. Eldest helps boil water and make lemonade as requested by hubby. He drinks none of it, but wants liquids. The water I provide on demand is not cutting it. I sit in the bedroom with my laptop and just work and hold his hand to help calm him.
It’s 15-hours later and hubby has finally woken up and wants food. This is a good sign.
I try not to feel overwhelmed that it’s only Monday. I want to cry. I am tired.