This past week was a rollercoaster ride for me. On Monday I had dialysis but my catheter was on its last leg. I didn’t get a very good session and went home feeling less than stellar. I got a call from the surgery center about getting in to get a new catheter. It’s hard for me to make plans for surgery because I don’t have reliable transportation when I’m sedated. But luckily this surgery center allowed me to Uber home, which took all the stress and worry off my plate.
On a side note, can I tell you how much I love the new Uber woman’s driver option:? It made me feel much more at ease, especially knowing I was going to be slightly out of it when my driver came to take me home. It made me feel safe and secure, and all the women drivers I’ve had so far have been fabulous. I honestly wish I could afford to Uber everywhere, but that’s beyond my means and this post is not sponsored by Uber, so there’s my two cents.
Anyway on Wednesday I was supposed to have an appointment with the surgeon who did my fistula surgery to see what the plans were going forward. This appointment did not happen, nor did dialysis that day due to a massive snow storm that hit our area. I got 7 inches of heavy, wet snow at my apartment complex and when it snows that much its hard for me to walk in the snow with my walker.
I could tell by Wednesday toxins were building up in my blood. I don’t create urine anymore, so for me dialysis is the only way to get the toxins out of my body.
Thursday I felt worse, but I was scheduled for my catheter exchange that morning, there for I was hopeful that it would only be one more day until I could get dialysis to feel better. The morning of my surgery I took my uber to the surgery center and waited patiently for the doctor to finish working on a different patient.
A catheter exchange is nothing new to me, the one being switched out was my 7th catheter in a year and a half. I had some that just stopped working due to a build up of fibrin in my artery, and I’ve even had a couple just fall out when the stitches were removed. That’s right, a catheter can just fall out on its own. This typically happens when the catheter ins’t placed correctly, the artery wears out, someone or thing tugs on it, or the site is infected.
I was accused by a doctor in the ER of just pulling one out and lying that it just fell out. He said he had never heard of a catheter just falling out on its own. I wanted to punch him, but I kindly told him that it happens quite a bit and if he didn’t believe me he could call my nephrologist.
I can’t understand why anyone would purposely pull out their catheter, unless they aren’t in their right mind. Every catheter surgery I’ve had has been painful, and it’s not something I would just willingly pull my catheter out to do because I’m bored. At this point in my life it’s is literally my life line.
As I waited for the doctor I prayed that this surgery wasn’t going to be as painful as my last three. The surgeon who performed them (same surgeon all three time, at a different hospital) was so rough with me it bruised my chest and left6 me crying as I was wheeled out of the OR. I kept thinking positive, that this one was going to be okay because this time it was a different surgeon, different clinic and all they specialize in is dialysis access.
I was met by the doctor and she explained what the procedure entailed. She was going to use a x-ray to see what the issue was with my current catheter. At first she believed it was a fibrin sheath that developed around the catheter and caused it to be blocked. Her solution was to go in with a balloon, break up the fibrin and place a new line.
She did just that, only a little sedation was needed, no pain meds, no chest bruising, it was simple and easy. I was done in about 30 minutes and went home another half hour later. All in all I was hoe by 12:30.
Friday morning I woke up feeling like absolute shit (pardon my language). It took everything in me to get up, get dressed, and go to dialysis. All the while I was telling myself “I’ll feel better after dialysis”.
When I got to dialysis my tech tried to pull the heparin out of my arterial line and nothing happened. They told me to do all the little tricks; turn your head and give a good, deep cough, lay back, flush it aggressively with saline and then they tried the venous line same thing. Nothing was coming out of this new catheter. I coughed with all my might, I put my feet up and down, I almost stood on head… well not really, but if it would’ve helped I would’ve tried.
One of the nurses tried a medication called activace, which had been used on me many times before. It’s like drain cleaner for catheters. Its purpose is to break up any fibrin causing the issue in the artery to get a better flow. This is sometimes needed after a catheter exchange because the fibrin might not break up all the way and it can travel up the new catheter.
I sat for 30 minuted while the magic potion did its thing, again praying I wouldn’t have to go back down to the surgery center. I was frustrated, exhausted, feeling crappy and just so fed up with it all. After 30 minutes the nurse came back and tried to pull the activace out of my catheter and, again, nothing happened.
The nurse called the surgery center and explained to them what was going on and this time the center sent a car to my dialysis center to pick me up. Which I do have to admit was nice, and free of charge to me.
As soon as I got there they whisked me away to the prep area and had me gown up and put a pretty blue bonnet on my head, so stylish I know. It was a different surgeon, and he explained to me different options than I had the previous day. He was going to look and see if it was the fibrin that hadn’t broken up all the way or if the entire thing needed to be scrapped and started over.
This time he did determine it was best to just start over. Apparently when my previous catheters had been placed they ended up winding in on themselves which caused them to kink and not work. He made an incision a little higher on my chest and made a straighter connection. I was relieved to hear this, but honestly didn’t care because I was in a twilight sedation. If you’ve never experienced that, it can be kind of awesome. Unlike anesthesia, it relaxes you, but doesn’t make you fall asleep, so you hear everything that’s going on around you.
Everything was fine. I felt them numb my skin with lidocaine, and I felt them putting pressure on my chest, which was actually them cutting me. But I was in my happy little twilight world, until I felt a pinch and a tug. I told the nurse I hurt and the doctor approved her to give me some pain medicine. I felt relaxed once again, but it wasn’t long until it started to hurt again. The main part that always hurts is when they insert the cusp to hold the catheter in place. It’s takes a lot of force which means you have a full grown person basically banging and pressing on your chest until it “clicks” into place.
I was very vocal about how much it was hurting, as I always am, and the nurse asks me “Is it pain or it is pressure” And I’m laying there thinking, really? You don’t think I know the difference between pain and pressure? Tears started welling up in my eyes and I had to tell myself it was almost over and I could cry when I got home.
Finally the torture ended and I was put in post op where they offered me a snack and some water. At this point in the week the toxins were too much for my body and I wasn’t eating or drinking very much. And that is when I know I’m in really bad shape.
I called my dialysis center and told them what happened hoping they would have me come right back so I could get dialysis that day, but they told me to come in the next day at my normal time. I was highly disappointed not only that I wasn’t getting my dialysis treatment that day, but I’d also have to come in on one of my off days.
The way I feel when toxins build up in my body is hard for me to explain to people. My sister messaged me on Saturday and asked how I was feeling and explained it to her like this; It’s like having the worst achy flu of your life, every part of your body hurts and there’s no way to get comfortable, your either nauseous or not hungry at all, and every small task you do takes 20 minutes because you’re so worn out and exhausted. All of that minus the fever.
I did get my treatment on Saturday and it was the best treatment I’ve had in a while according to my nurses. The new catheter is working great and I have an appointment on the 18th to meet with my fistula surgeon.
Do I feel better now?
I feel a bit better. I can now lay down without it being too uncomfortable, but I know it’s going to take another couple of dialysis sessions to feel much better.
Like any chronic illness, there are good days and there are bad days. And I know I’m blessed to have mostly good days. Until the bad days outweigh the good days, I’ll count that has a win in my book.
