written on November 25, 2014
I had my perma-cath removed last Tuesday (November 18). Can I tell you what a relief it is to finally be free of that thing? I had it installed on Monday May 19, and I had it removed on Tuesday November 18 – almost 6 months to the day. Now that I’ve been catheter-free for the last week, I can tell you I don’t miss it. Not at all.
The procedure turned out to be not that bad. I didn’t work myself up into quite as much of a panic as I did when the stent had been removed (there’s clearly far more anxiety for a man when the penis is involved in a procedure). But since the stent removal went better than I had anticipated (thankfully), I didn’t feel as worried about the catheter removal.
My parents came with me and we got to the Procedure Center at Cedars about half an hour early (yes, it’s called the Procedure Center – it’s the same place I went back when I had the Rituximab infusion in September). The staff there is very nice and welcoming. I wasn’t called in until almost 3, but they led me into my own room, where two nurses took my vitals and had me lie down on the bed. I had to take off my shirt and put on the gown.
A few minutes later, the doctor came in. I took a few pictures of the catheter in my chest with and without the dressing. Then the doctor started washing the area. He scrubbed it with soap, then he wiped it with alcohol – I think it was six different times he used the alcohol swabs. So all the adhesive residue that’s been sitting on my skin for months was gone. How awesome! My skin allergy to the adhesive has been driving me crazy for months, so this was one of the best things that could have happened (my skin still itched for a few days after the procedure, but now it’s completely fine).
Once he was done washing the area, he put on the surgical scrub outfit (the same one I wore on Halloween!) – the gown, the gloves (which go outside the elastic sleeves – I messed that up on Halloween), the mask, the hair net; then he started putting the drapes on me. Five drapes he put over my face, my chest, everywhere. He left a small square around the exit wound. Then he pulled out the lidocaine needle.
He told me beforehand that the lidocaine would be the most painful part. The little bee sting when he pushes it in, and the burning you feel as he injects it under your skin. He managed to inject a bunch of lidocaine around that exit site – three different pokes in three different areas (so three bee stings – which really aren’t that painful) and then the burning. It lasted about two minutes (that’s how long it took him to do the injections) and then he told me he was going to start.
While the burning was going on, I started freaking out. I was clenching my fists – I asked the nurse if she had something I could squeeze and she gave me her hand. I told her that wasn’t a good idea, but she did it anyway. I probably squeezed the life out of it, but she kept saying it was okay. Once the burning went away, I managed to relax a little.
The doctor started by tugging at the exit site. I felt the tugging, because it kept pulling my chest off the bed. But there was absolutely no pain at all. He told me he had to cut through some scar tissue – I assumed that’s what the tugging was. He kept tugging and tugging.
He had put a drape over my face, so I couldn’t see what he was doing. My head was turned to the left side so I could breathe and talk (the catheter was on my right) and it started getting really hot under those drapes (I still had my pants and shoes on – no point in getting undressed when all the doctor needed was my right shoulder). Surprisingly, this was the first time I have ever been in a procedure room where it’s not freezing cold. I started sweating like crazy and the doctor just kept tugging and tugging. I mentioned to the nurse that there must be a lot of scar tissue for him to keep tugging like that. She nodded and said yes, there was.
After a couple of minutes, the tugging stopped and the doctor held up the catheter and said he was finished. He pulled the drape down and showed me the tube that had been sitting inside me since May. It was covered in my blood (of course, since it had been in my jugular vein this whole time). He asked the nurse to come over and apply pressure, which she did after he pulled all the drapes off me.
I think she had the worst job – she had to stand there and talk to me for 15 minutes while applying pressure to my neck to make sure the jugular wouldn’t bleed out. I’m very grateful that she did that. I didn’t want that darn catheter to be the death of me. It had lived its life, and had made it to the end of its useful run (perma-caths like mine are only rated to be used no more than 6 months – after that, lots of bad things can start to happen (the main one being the deterioration of the tubing while still inside of you, and let’s not forget the infection risk which apparently increases after 6 months also).
Luckily, I got it out before anything bad happened. When the nurse finished with the pressure, she applied some gauze and put some Tegaderm over it (Tegaderm are these wonderful window view bandages that are also water-proof. They are a royal pain to peel off (if you have hair where it’s applied, you will lose the hair) but they’re pretty cool. She sent me home and said no shower and no getting it wet for 48 hours. I figured I’d waited six months to take a real shower, two more days wasn’t going to kill me. She also told me if I started to bleed, just apply pressure. I asked her what I should do if applying pressure didn’t stop the bleeding. She assured me that pressure would stop the bleeding. So I gently asked again, but what if it didn’t stop. She looked at me and said – “go to the ER.” I asked what the incidence of recurrent bleeding was in patients with a catheter removal like mine – she said less than 2% of patients experienced it. Good to know.
I left the procedure room, met my parents in the waiting area and we went back to the apartment. For the next few days, it felt weird not to have the catheter in my chest. I had gotten so used to living with it, so used to sleeping in certain positions so I didn’t have the tubing push against my skin in uncomfortable ways, so used to leaving my shirt on anytime I washed my face or hair (so water wouldn’t drip on it). Here I was, free at last, able to resume a normal life. No more tubes!
I removed the bandage and gauze Thursday evening – no bleeding. Just a nice scabbed over wound. I know I’ll have a scar there, probably for the rest of my life. You better believe once the scab heals over, I’ll be using the Scar Away bandages to get rid of as much of it as I can (the Scar Away I’ve been using on the kidney incision is actually helping it to fade already – Scar Away is the best!).
I still have two little scars on my chest from where the splitter had been sewn into my skin (the catheter comes out of my chest and was attached to a y-splitter that split the blood into incoming and outgoing – the top of the y was a plastic piece that had originally been sewn into my skin so the tubes of the y wouldn’t move around – once the dialysis center had pulled those stitches out in August, the end of my catheter would bounce around on my chest if I didn’t tape it down).
I’m not worried about the scars. I’m not one to run around without a shirt, especially now that one of the side effects of one of my anti-rejection drugs (Myfortic) is an increased risk of skin cancer. I won’t be much of a sun worshipper ever again, I’m afraid. So most people will never see them or know they’re there.
I finally took a real shower on Friday morning. I’ll save those details for another post. That’s a whole story of joy and happiness that deserves it’s own entry.
It’s been a week since the catheter was removed and I feel great. I’ve taken three showers since Friday and each one is a wonderment to me. To stand under the water and let it flow over my entire body – there is truly no finer feeling.
All of this has made me hope that I never have to go through anything like this ever again. All the pain, all the anxiety, all the lifestyle changes that had to be endured. As humans we are exceptionally resilient, and we are able to change and adapt to new circumstances, even when they aren’t the most favorable. And modern medicine is quite remarkable in that they can keep you alive with catheters and machines and even surgeries to replace organs. In the end though, it’s worth it to maintain your health.
I understand that things happen in life, and trust me when I say we don’t always have control over what happens to our bodies or our health. But when we do have the ability to control it, we should. Stay healthy, stay well and above all, stay positive. Every day is a new day and every day is a chance for everything in life to be better.
I know all about it – I’m living proof that it can, and does, happen to anyone.