The van came to get me nice and early, I arrived at the clinic and weighed in and had only gained 1 kg since Saturday, went to my chair, unpacked all my crap, spread out my blanket and waited while they took my standing blood pressure.
As the machine was taking my pressure, I looked around for 'my' nurse. Thus far, the only nurse at the clinic that has successfully been able to stick me. I did not see her. I felt the panic start in the pit of my stomach, but I tried to fight it back.
The alarm on the machine went off however because my heart rate was much higher than it should have been. I didn't want to tell the nurse that the reason was my panic over not seeing the nurse I trusted. I don't want to make the other nurses feel bad, and I know that I have to get used to other people sticking me because they all need to learn how to deal with my fistula.
I sat down in the chair, covered up with my blankie, took a few deep breaths and waited. The nurse that came over was the nurse that on one of my previous fail days, had inadvertently really hurt me by pressing really hard on my horribly bruised arm.
She took her time and felt around for a long time trying to decide where to stick the arterial needle. I thought that was sort of odd, since the arterial portion of my fistula is the easy part to find, but I didn't say anything because she's the nurse... therefore she would know...
When she finally decided to stick me, she did so in a really strange spot. She stuck really far up towards my hand and at least 1/2 an inch below the scar. Nobody had ever stuck me there and as soon as she did, I learned why. She went in and before she could find the fistula, she apparently found a nerve. The shock of pain was HORRIBLE. I toughed it out though, figuring that once she got the needle in, the pain would stop. She eventually found the arterial but the pain, rather than stop, only intensified. At some point, she moved the needle just slightly and I almost came up out of the chair. When that happened, she reacted by pulling the needle out immediately. Well, needless to say, she was already in the arterial so when she pulled the needle, I got to experience spurting blood first hand. Within moments my arm was sitting in a pool of my blood.
At that point I got scared. I started crying because I just couldn't take it any more. Between the pain and frustration and now, downright fear, I just couldn't hold the tears back. I don't bleed. That's kind of my thing. The thing I was always so happy about. Sure, I bled a bit the last couple of times when I finished dialysis, but NEVER like this. I'd never seen so much blood.
She held pressure for a long time and finally the bleeding stopped. When she tried the second needle, she moved back on my arm about 1/2 inch from that first attempt, but still about 1/2 inch below my scar. My arm was still screaming in pain, but the second needle went in and seemed to be ok... until she flushed the line. More pain on top of the already there pain. It was really bad. I just figured it was because my arm had already been traumatized and again, I just told myself that once I was onboard everything would settle down.
Then it was time for the venous stick. Again, for whatever reason, she decided to go into the venous portion of the fistula less than an inch from the arterial needle she had in. To do so, she had to press on the needle already in my arm. It was, again, horrible.
She also missed. :-/ Oh, and she infiltrated...
At that point I asked her to stop. I told her I just wanted to go home. I didn't want to do this any more today. My other nurse, the one that has been successful at sticking me came in and we pulled that venous needle and she tried a 4th time. She got it, but before she could make it a solid line and get it flushed, I clotted it off.
I was done. I begged her to just pull the arterial as well and let me go home. I would try again Thursday, but I couldn't take any more needles today. When she pulled the venous out, again I bled like a stuck pig. I covered another towel in blood and that of course prompted even more tears. I never thought of myself as a wuss before, but this stuff is making me into quite the crybaby.
They clamped me off and iced me down while I texted Dan at work and asked him to please come home so he could get me. Thankfully he has a wonderful Boss who understands medical problems and she told him to go and to be sure to let me know that she would be praying for us.
While I was waiting, all clamped and iced, another nurse came over and asked me if I'd gotten my Hep vaccine. I hadn't. I told her to go ahead and give it to me but she felt so bad about what I'd been through that she wanted to wait until Thursday. Well, Thursday I'm getting the Pneumonia vaccine, and I really didn't want to have both in one day so I told her to just go for it. I don't have a problem getting vaccines at all. Those needles don't phase me.
I got my vaccine and then noticed that all the nurses had disappeared. Apparently they all had to have an impromptu meeting about me and my fistula and the trauma they are inflicting on me. I don't really know what the outcome of that meeting was, but I do know that on Thursday when I go back, the specialist from the Access Center is going to be there to stick me.
I'm tired of this. I'm tired of hurting. I'm tired of crying. I'm just all around tired of being sick. I don't know what the solution is, but they need to figure out something. I don't know how much longer I can do this.
These top two pictures are of my arm before I went to Dialysis today. The bruising is almost cleared up, or well, ok, it's not as bad as it was last week anyway.
Here I am clamped and iced. You can't really see how far up on my arm the arterial stick is in this photo unfortunately.
Here's a shot after everything was said and done. At this point all the blood had been cleaned up and I had completely stopped bleeding because I'd been clamped for a good 20 minutes or more. See those two red spots under my scar? Those are the arterial sticks. You can't really see the venous sticks, but I think that's them up there on the scar itself. You can see that my wrist was already starting to bruise up again at this point.
Here's hoping that Thursday goes better. :(
Do you have a graft, or an actual fistula?
ReplyDeleteI ask, because if it's a graft, what I'm about to suggest isn't possible.
I haven't heard you talk about buttonholes, and maybe that's because you have a graft.
If you do have a 'fistula' ask them about buttonholes, and about catheter lines.
Hubby's fistula started acting up after an infiltration, and on Monday when we return to training, we will be putting in (I'm sorry I can't remember the name) something similar to an IV Cath. It's tubing, goes in with a steel needle, but the needle is backed out, and you are left with only the tubing. They plan to leave these in on hubby for a week to ten days, ad when they are pulled, there should be lovely buttonholes there for future use. So for the week to ten days, things will be tricky as far as showering, but it -should- make dialysis a snap, because you aren't sticking someone at all while these are in.
If you do have a fistula, and CAN use buttonholes, you can then move to blunt needles, as it makes a tunnel much like the ones in our ears when we get them pierced.
I will look into this and ask about it when I go in for my treatment tomorrow. Thus far, the only thing the nurses keep mentioning is a PermCath, and I really don't want to go that route. They want me to consider a PermCath and then they want me to have the Surgeon move my fistula so they can stick it more easily. I'm personally of the opinion that they should just learn how to stick my fistula the way it is since it has been done successfully several times now.
ReplyDeleteWe know that it is possible to use the fistula, it's just a matter of them figuring out how to do it. :-/
I definitely think that what you're describing sounds a lot better than a catheter in my heart.
Yeah. The permacath sucks donkey balls. My husband had one when he first was diagnosed, and they are ooky. You can't shower well, and they are just full on dangerous. He HAD to have one, so it wasn't like they did anything wrong, but it didn't make it suck any less. :(
ReplyDeleteIf they want to move it, I'd definitely look into it. Dialysis unfortunately will be your lifeline, and you gotta know that dialysis techs and even the nurses just aren't that good at it. They deal with a billion patients, and having an expectation of them being successful long term with your fistula could set you up for long term struggles. The more they infiltrate and struggle, the more likely they are to weaken your fistula. If it blows, permacath it your option until a new one can be created. PLUS, if it's moved, and way more readily accessible, you can train to go hooooooome. :)
We head back to training tomorrow (hopefully) and I'll try to remember to ask again what the small catheter lines are called that help create buttonholes. :)
My friend. I wish I could hug you.
ReplyDelete