Mar 29, 2014 22:50
This is the most incompetent stay I’ve had to endure for a very long time
A little history and Know about my dialysis graft. It is over ten years old, it has been revised around 7 times. It is a loop of synthetic material that connects to an arterial vein that blood flows through so two large needles may be inserted(one for pulling blood out, and one for putting it back in once it flows through the fake kidney that is my dialyzer) for dialysis. My dialysis access was revised in January, the first time in 5 years since it had been revised. This means they put in another stretch of synthetic material, bypassing an overly used and thin walled or aneurysm- riddled part of the access. It takes 4-6 weeks for the area to heal before you can use it on dialysis. We started using it beginning of this month. The history of a revised graft has shown that there is clots on the wall of the new graft and putting a needle in will cause the needle to clot almost instantly. It is important to differentiate between the access itself clotting, meaning there is no flow through the loop of synthetic material, and just the large needle clotting. The access might clot once after being revised, but historically not more than that. It might take a few weeks for the needles to stop clotting.
So like the second week of this month I started using it and I’d have 3 needle days where we'd try 3 in the new area, and they’d clot, then we'd stick in the old access site and I’d dialize.
Well then for some reason the whole thing clotted on Wednesday the 11th when we put 3 needles in. I had them take the needles out and the pulse came back so I ended up dializing on it on the side they hadn't revised yet. The next day I went to radiology at HCMC and they mapped it with dye and used a balloon to make a narrowing larger
Thursday was a five needle day. Saturday was a three needle day
Tuesday the 18th the whole access clotted again after one needle
So the next day I went in for a declot and they not only declotted it, but they revised the side that didn't clot the needles as soon as you stuck it in. plus it would need 4-6 weeks to heal not to mention it would then clot needles as soon as you put needles in (as the side revised in January has been)
Ok this is last week, Wednesday, Thursday, Friday, I was in the hospital. Wednesday was declot and they also revised the other side of the access where dialysis had been able to stick needles in if the January-revised part clotted the needles. Essentially they took away a part of my access you could use that did not clot. And as I said, they could not even use that side for dialysis for another 4-6 weeks now. Pretty much right after surgery they sent me to dialysis. It was a 3 needle dialysis run.
The access completely clotted again at dialysis after 3 needles. No flow in the loop.
Wednesday my potassium was high so they treated that with insulin and glucose, for someone who is not diabetic, it will chase the potassium back in the cells. They did this during the surgery where they declotted and revised my access. My sugars were outta whack wed day/eve/ thus and it killed my appetite.
Since they didn't/couldn't dialize me wed eve/afternoon and my potassium was still high (leeched back out of the cells) they decided to put a temp shunt in my neck. I laid in bed at dialysis wed from 3pm to 8 for no dam reason
Around midnight they put the shunt in and moved me to a not quite ICU but similar room and dialized me. They gave me some good drugs and I woke up near the end of dialysis around 2 am
The shunt in my neck, while I appreciate being able to dialize while my access was being poopy, I couldn't look to the right because either the shunt or the access kept me from being able to turn my head.
Also, and more annoyingly, when they moved me to the new room, they gathered my items and brought them with me. The Mountain Dew Mom bought me earlier and which I’d only drank half the bottle was put in with my purse and the book I had brought with me. My favorite book. This particular book I have read literally more than 23 times from front to back, and a few times from middle or near end just for the hells of it. They put the Mountain Dew bottle in this bag upside down. Without checking the bottle’s green cap. WHO DOESN’T CHECK THE TIGHTNESS OF THE CAP? Well the Mountain Dew bottle peed all over my book and my purse. I’m not reading a sticky sugar coated book. So much anger. I threw the book out. My favorite book. Which I’ve read 23 times or more.
They dialized me Thursday afternoon since the narcotics they gave me to put the shunt in killed my blood pressure so they couldn’t pull fluid at the midnight dialysis.
Friday they declotted again and ran me at dialysis through my access. I forget how many needles it took. I think it didn't take many. Maybe 3. So after dialysis they sent me back to my hospital room and removed the shunt and then sent me home.
YAY
I woke up at 6 am Saturday morning to give Rumour her insulin and checked the pulse on my access. It was clotted. Damnation.
I called dialysis and they suggested I go to the ER to have them declot it. I hadn't had a shower since Tuesday, maybe Monday so I was like hell no I’m getting a shower in. besides, going into the hospital on the weekends is bad. They have less competent and generally people who don't know what they're doing. Plus less people to work in the OR
But I went in on Sunday morning thinking maybe they'd declot it. Nope. Not enough people to work the OR and I wasn't exactly a 911 case.
So I went home with the plan of declotting on Monday.
Monday the plan was originally declot, dialysis then discharge
Then later that day it was declot, dialysis, stay overnight for observation
Then it was declot, dialysis, let's start you on cumadin(bloodthiner) and a heparin drip to thin your blood so you don't clot anymore. We’re going to keep you until your blood is as thin as we want it to be, heparin will keep it thinnish (it only has an hour half-life before its potency wears off) but we’ll use the heparin as a bridge while we wait for the cumadin to take effect.
Well, all that's great. Logical even. I’m okay with reasoning that makes sense. I like to think of myself as a sensible person when it comes to my health. Things sounded good. The plan sounded good.
Except Monday night into Tuesday morning the night doc decided that my hemoglobin going from 13 to 8 to 6 might mean the recent declotting area might be bleeding internally. So let’s take a minute and think of all the loss of blood I’d had in the last week- two trips to Radiology, 3 declots, one that time of the month, and one shunt application. The access didn't hurt (other than someone cut into me and monkey'd around pain) and it wasn't hard like it would be if it were bleeding internally. But no shit Sherlock my hemoglobin is down. Derr. Still, it caused me a loss of a day while they rang their hands in fear of internal bleeding. They’re not going to give you blood thinners if they think you’re bleeding internally.
Compounded, my temp was also 101.3 around 2am when they took my temp, 15 minutes after I’d tossed the blankets off me because the bed was throwing heat off. Or..holding the heat in next to my body. Whatevs.
So they were bound and determined to get blood. they had already told me that they'd want blood every 6 hours once they started the heparin drip (hadn’t started it yet) and I was playing the long game with my veins knowing they wouldn't stand up to a crapload of pokes so I argued all Tuesday earlyass AM against lab draws. Across the street is where I had done DaVita Research studies and they have thing called a Lock that is like an IV but it’s main use is for drawing blood. I wanted one of those but since HCMC doesn’t know about Locks somehow, I asked for an IV they could draw labs out of. Since I thought they were going to start the heparin drip Tuesday, I didn't want to start not necessary lab draws. I wasn’t feverish, I was overheated. When I have a fever sickly i have chills. Therefore this was an instance of them wanting but not needing blood.
My nurse was a bully and my doctor that morn was incompetent. I know my patient rights. The more they bullied me the more my inner Taurus reared and I dug my heel in. You cannot bully me by saying “Ok, I’m going to get the doctor then” like it’s some sort of threat. I’m willing to work with you but if you’re not going to listen and negotiate with me, you can take a long walk off a short pier.
There was something else but I’m blanking it out. Maybe it's just the lab draws...
Tuesday they tried to have dialysis at noon but after 4 needles it wasn't working. Heparin drip hadn’t been started yet
So they're like well “we'll send you back to your room and start heparin and see if that helps" I sat in my room until six, no drip. Then they came back and took me back to dialysis
This is where I made a mistake this evening
They managed to get 2 needles working, but they were practically humping each other and they were at a part of the access where you shouldn't go. I should have put my foot down and made them put in a shunt so they could do dialysis when the needles clot. The idea behind the shunt is it is a backup for when my access clots my needles. If the needles don’t work, they can use the shunt. I only wanted the shunt in until my access starts behaving itself.
So Wednesday they started the heparin drip and cumadin.
That was my entire Wednesday, sitting with an IV heparin pump. Which would have been fine but every time they put me out, under for surgery they'd done NPO, no food or water after midnight morning before the surgery. And each damn time they did not take me off no NPO so I’d have no food for 24 hours
that happened 3 times, and another 2 times the night doc put me on NPO just in case the surgeons wanted to revise my access, which was nowhere in the plan. They’d not be revising it again
Thursday was fun. They brought me to dialysis around 10am and did 4 needles, we all realized we couldn't go where we had gone Tuesday so it didn’t work. One needle worked but you need 2 to dialize.
So no dialysis Thursday. But thanks to the heparin and cumadin, the needle sites, where they had put the needles in did not stop bleeding.
Even the one they’d put in that clotted right away just oozed blood. Slow ooze, but the mf wouldn’t stop
They said they'd decided to try to dialize me Friday which didn't make sense to me. What the hell would change but ok
At some point, it's gettng sorta jumbled at this point, they finally caved to my suggestion of getting me a shunt in my chest for dialysis, a backup for when the needles clotted. it meant they had to reverse at least in part some of the blood thinning they’d done the last day or so
They didn’t stop the heparin drip until Thursday at 11pm and my access sites didn't stop bleeding until around 3 am. Every time you took the gauze off it'd start oozing blood again
No gushers, thankfully but still...
Friday they took me to surgery, morning, 8ish? and put the shunt in yay I win
They had considered keeping me longer, they wanted to restart the blood thinning but since my access bleed like it did and not stopping, it was not a good idea since the goal of the catheter is a back up to using my access and I did not want to bleed for 24 hour after each dialysis run
PLUS I do believe the catheter they put in my chest just now stopped oozing blood
I can see their reason for wanting me on blood thinners to keep the access from clotting, but all the hoopla kept them from giving me heparin until Wednesday SO AND since it clotted so quickly on Wed and Fri, and it was taking its sweet time to clot now (the whole access clotting) I do not think thinning my blood was the real problem
The needle clotting will have to go away on its own, it is just how my body protects itself
And it did not exactly help with dialysis when i was in there, needles still clotted