Dialysis Hell, Here We Go Again…!

I am finding myself once again wishing to God I did not have to do dialysis anymore because of the toll it is taking on my mental, emotional and physical health. I cannot sleep at night, and am in a consistent state of mental chaos having to continue to deal with the ableism and refusal to accommodate my support needs at my lifesaving vital dialysis treatments that I am forced to go to if I care to live.

Each time I have a bad experience at dialysis, my poor caregivers suffer, because the meltdowns I have at Davita do not stop after I leave your clinic after one of my bad days there.

Bad days that **can** be mitigated. I repeat: bad days that **can** be mitigated.

I have told all y’all how to mitigate these meltdowns, and shit just keeps happening that sends me home in full-blown mental emotional sensory hell. Which gets straight on projected onto my caregivers. Because I am unable to hold my state of sheer sensory upheaval and distress IN.

Yesterday could have been mitigated. Just by Angel letting Nurse Jenni K. go ahead and put me on the damn machine. But no, She forced me to work with a nurse I had never worked with before in my life. It was early morning for me, and that early in the morning, I am not gonna have the spoons (energy) it takes for me to get to know a strange new nurse and tell them all about my put on routine.

Again—my autism is a disability. A disability that comes with meltdowns if I am forced to march to all y’all’s neurotypical beat when I am unable to do so.

I am asking you all to once and for all take my autism seriously, as accommodating me will make me be able to continue on with my hemo dialysis therapy. Otherwise, I am seriously contemplating quitting and having Hospice come into care for me.

Angel, you always tell me you love me, that I am beautiful and that you have my back. But you did not have my back yesterday. And the results were a spectacular fail—for all of us involved. There’s a good reason for my trust issues, and If I cannot trust my care team at dialysis, this won’t work for me.

Below is the post I wrote on Facebook last night, because guess what? I was unable to get to sleep until after 2 AM this morning.

Please, for the love of God, take my autism disability seriously, once and for ALL. PLEASE!!!!!

My post:

I usually watch General Hospital at about this time. (I began writing this post at 10:00 PM tonight and it is now 12:14 AM).

I am not doing so tonight.

Instead, I am still wide awake, binge eating bomb popsicles and playing over and over again today’s—now yesterday’s—horrible tapes of all of the hell I was forced to endure at dialysis today / yesterday.

I STILL can’t calm down. I am hot, so I have the A/C on, and this stress is also affecting the vision in my left eye. Lately when I get highly upset, my left eye gets blurry / double vision in it.

What’s it going to take for all y’all non-autistic folks to realize that autism is a D I S A B I L I T Y and not a B R A T T Y B E H A V I O R? I can’t take my autism off wherever I go. It goes _with_ me. My autism is a part of _all_ that I am and do and say and think and experience.

My autism requires certain accommodations. I’m 62 years old, and old enough to K N O W what works and does not work for me and the way my entire body is wired neurologically.

I went to this day’s treatment and **everything** was changed. For one, I found out the tech I loved, Bre, no longer works there. I didn’t have the other tech that I usually have, either–his name is Robert, and they had him working on Side B today—-and I also had a new nurse, a traveler, who //only just met me// the last time I was there.

He was working my side on my last visit, but was not my nurse that day.

I don’t do well with abrupt and sudden changes, and this threw me literally for a loop. Right off the bat.

I got to my machine and found no call button and one of the big blood pressure cuffs instead of the small teal-colored one I use that is comfortable, that goes just above my right wrist area.

That upset me.

Then this new nurse turned around and very curtly introduced himself to me, and I just _froze up_. I couldn’t do my treatment if I had to go through and have to use spoons I really didn’t have this morning, to explain to him how to tape down my shirt and then do my catheter and machine and blood pressure cuff and etc.

I began to panic. And then panic and panic. AND panic.

My old nurse, Jenni K., seeing how distressed I was, came over, offering to put me on the machine. That made me happy! I calmed down, ready to get put on the machine so I could dialyze and get it over with.

But then the head nurse, who is usually very sweet and understanding with me, seeing that Jenni was going to put me on, even though she could see how happy it made me, shooed her away, saying curtly that I would _have_ to deal with the unfriendly strange new nurse today.

I said “Oh HELL no, no, no, no, no!” and went back in my wheelchair and called Connie to come pick me up, that I was not going to do my treatment today under these circumstances.

I went on and on pleading with them to get my social worker to come help me.

Oh well—I missed Friday because of severe stress and anxiety due to last Wednesday’s shitty dialysis day and that same afternoon’s doctor appointment, so what’s me missing today too? /s

When the new nurse heard me talking to Connie on my cell phone, he suddenly softened, and said he wanted to work _with_ me and said I could tell him how I wanted everything to be done and he would do everything as I directed him to do.

Well—that_didn’t_happen.

I called for my social worker to be there at chairside for me. He was unable to come at first. So I was a hot mess trying to tell / explain to this new person how I like everything done.

Things did not go well at all. He lifted my leg rest up to get my feet and legs up in the reclining chair, but he only lifted my legs up by the addition part, not the actual leg rest that is underneath the leg rest add-on, and that set me off into a whole new meltdown.

Then he entered my prescription in wrong. I had told both him and the tech who brought me back, I only wanted them to remove _1_ kilo_of_fluid because my body cannot handle them taking off too much fluid at a time—and he went and put in _1.4 kilos_!. I said in sheer alarm: “NO, I do NOT DO that much!”, and he began to argue with me that the 1.4 was the norm.

I snapped and told him I knew my own fucking body–that I’ve been going there for 4 years now, and I knew how much I could handle and to fix it.

It did get fixed.

But then there was no heparin in the machine. I played hell trying to tell him to set my heparin at 0.7.

He finally did, and then when he went to tape my shirt, he began to tape the tape right onto my skin! Another no-no-no-no-no-no-nooooo!!!!

The blood pressure cuff the same thing, he kept putting it on my arm wrong with the lead of it stuck in my chair, which I HATE, because it makes me feel even more stuck in my chair to not be able to freely move while I am on the machine.

I did not get put on the machine until 10:25, and I came at 9 AM for my normal put on time of 9:15. I was not even taken back to my chair until 9:25.

At 10 AM, my assigned tech came…it was Cheryl, another young lady who I like, so that calmed me down somewhat.

I got to finally talk to my social worker, who said he would have a talk with the head nurse about how my get on went this morning. He said he would also find out what I would be in for when I come for treatment on Wednesday.

On Wednesday, I will start with Nurse Sadat, another nurse I have worked with who I like, and then my regular nurse Lauren will be on at 10. I will again have Cheryl also at 10 AM— but he was unable to find out what tech I would have before Cheryl’s clock-in time.

Larry, my social worker sat with me and I also got to talk to the head nurse and tell her how much I want to quit dialysis, because I can’t handle all of these changes. Her sweet side was back.

I still wish she_had_just_let_Jenni K._put me on. if she had of let Jenni put me on, I would have gotten put on at about 9:30 instead of 10:25.

I got 3 hours and 35 minutes of my treatment done, but ended up having Sadat take me off the machine. Because during my treatment, I noticed the new nurse, who had a runny nose, which he kept pulling his mask down to wipe—with his hand—and he never bothered to use hand sanitizer or wash his hands afterwards, and went onto handle other patients’ access ports and machines. With his germy hands.

Another HUGE pile of no. I was not about to have him touch me again after witnessing his poor hand hygiene. And then end up in the hospital with sepsis again—on my chest port which goes straight into my heart! Which could kill me!

I told the front office that I am requesting to never have this man as my nurse again.

And well, it’s past midnight now, and I still just can’t fucking calm down.

This clinic needs to hire more people who are actually caring, patient and compassionate human beings, because I am sick of having to go do a lifesaving treatment when I never know what kind of land mine I will be walking into when I go there.

Thanx to all who took the time to listen.

Sincerely,

Melissa Fields

Advertisement

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s