Google if you are lost with understanding the terms used here. I just want a space to rant how the last couple of weeks felt.
In the past 3 weeks I’ve started having anxiety whenever I have to do dialysis sessions. To think I do this thrice a week! This particular issue has been solved last year when I had my permanent catheter (or a “chest catheter”) replaced when I started getting chills during dialysis and because my dialysis machine keeps beeping – it got annoying and eventually the nurses thought I needed to switch to a fistula (no way). Apparently it has became infected.
Maybe because I live in a household where we have dogs? I’m sure I take care of this very very carefully. The dialysis center doesn’t efficiently clean my access and I feel that I secure it better when I am at home.
Now the issue of feeling this chill is back since Monday last last week just because I mistakenly forgot to use my Duralock solution as my alternative to using Heparin to close my access after my dialysis. Things I can think of that I can blame: 1) Making the mistake not to ask my brother to go home and get the Duralock left at home, 2) Informing the nurse not to continue using the Heparin and wait for my brother to come back with the Duralock, 3) Insisting that by not using Duralock this time, I can still get away with it and that nothing bad will happen. Last time I was able to use Heparin (a solution without antibiotic) for 5 times before the orders of Duralock arrived, so I thought hey maybe it’s okay.
I use Duralock instead of the usual Heparin when they close my dialysis access because it has antibiotic properties that’s supposed to protect my access from getting infected.
Well, I was wrong. I should have asked my brother to drive back home to get the Duralock left there, and insisted the nurse to wait for him to inject it to my access.
The next 2 days that followed, my fingernails and toenails were cold and my whole body was also cold. I thought this is normal because as far as I know when this happened before, it means I need to eat. 😂 Again, I am wrong. Next, I thought I have a cold – yet I was not coughing or have the sniffles.
Thursday came, another session of dialysis. I felt relieved. Maybe this will all be over at the end of the day. Once again, I am wrong.
Halfway through dialysis, the last 2 hours, I started to shiver (these so called chilling feeling) and I was trying my best not to have this lead to being a seizure episode. Thirty minutes later I am still aware of what is happening, though my whole lower body hurts so. bad. I requested for the treatment to be shut down because I could not take it anymore. It’s not because they’re sucking up too much fluids from my body but I can’t hold it in any longer for this shivering not to turn to a seizure episode.
Forgot to add that there’s also darkening of my vision because I was hungry, too! During dialysis you should always have a full tummy! You should never undergo hungry or you’ll feel dizzy and possibly die. I’ve seen people there dying from hunger, their heart stops beating and they silently die.
So, I was hungry, had darkened vision (to the point I can’t see any more), and my lower body hurts. My ass hurts. My thighs, legs, feet hurts. All these parts ache so bad. I think these parts hurt the most. I have to hold on to these so I won’t start to shake like how a person would do if they have a seizure.
The ending of Thursday’s dialysis session at our nearby dialysis center, I was rushed to the hospital after the dialysis. I left unable to breathe, my body felt so heavy and my trauma and anxiety started from that point on.
Three hours later, from Parañaque we drove to Quezon City to NKTI to be admitted because of this problem. Three hours! We didn’t have enough money at the time, too! *sigh* All because of a small problem that could have been avoided. Just because of a very small problem. I SHOULD NEVER FORGET DURALOCK SYRINGES AT HOME EVER AGAIN.
First symptom of having an infected dialysis access is having a chilling feeling inside your body. How do I explain this…? Outside, your body feels normal by its temperature, but inside the cold feeling (as if you’re submerged in ice water) is there and you’re shivering for the entire four hours. As someone who is also prone to seizures, these chills can lead to seizure episodes.
It still feels weird to use the word “chill” in this concept. Usually I use the word chill in sentences like “oh they’re just chilling”, y’know what I mean right?
In my case, only my fingernails and toenails are cold to the touch but my whole body is cold on the inside and I am shivering. Teeth are gritting, my mouth is shaking, my arms are shaking.. but they’re hot when you touch them. Like a normal person’s temperature. The longer I am hooked to the machine, the worse it feels. I kept asking for them to fucking inject me a Paracetamol in the bloodlines to relieve this. Doctors passed by to no approval of this, and only gave me a tablet instead of an IV solution. The solution injected in my body works faster!!
We were admitted in NKTI for a week, going back and forth to dialysis every other day. The first three times I had my dialysis there, I experienced the same painful feeling over and over again. Had to stop the dialysis after 15 minutes and beg my mom to just end it all. I was even saying my goodbyes.
They took my blood a couple of times. A CBC test, another for phosphorus, sodium, electrolytes, another for blood culture (strangely they didn’t find anything suspicious in the results?), creatinine. The amusing part of all of this is when the assigned nurse to me just tried to inject me one time for a hep lock. The usual is twenty times. And I took care of this so much so that it wouldn’t stop working.
Last dialysis session before we were discharged it went ok, thank God. Except they didn’t give me the final antibiotic in my IV. I left having doubts, but what can I do..
Next Monday, the week after I was discharged I had dialysis again so this week. I’d put this under a failure attempt to have a successful dialysis. I had a headache and a seizure. To compare Monday’s events to last week at NKI, I would choose (though I’d rather not experience both) the chills during dialysis.
Thursday, today, they took off a small amount of fluids in my body. I felt a little cold but it was manageable. Thank God no seizures too.
And so my anxieties began in the last 3 weeks. I have this anxiety that I’m going to experience that chill feeling and always feel close to death for each future dialysis session. Thought I’d be over this and actually start looking forward to this because I get to eat whatever I want. But naaah.