My heart, keeping me out of commission since Monday had me going to the ER this morning, then not (ending up in the ER anyway) and after seven hours back home to recover.
My heart woke me up this morning, as it shook my body awake, like a plush toy in dogs mouth. That is how it has been, and growing worse in the three weeks since I was last in ER. And I learned some important things but also, looking back, I have found that the other side of Alice’s looking glass is also a looking glass: I worked hard and long to document and bring the evidence of the problems in hopes of having them solve them. Now I realize that instead of that happening, there is a language of code words and questions half answered or pretended not to be heard which create another barrier.
The difference between you and I; the difference between me of a year ago and now is that a year ago, I was trying to get people to take the disease A.A.N. seriously, which I believed would lead to treatment. The difference now is that the ER doctors, the EMT’s, the GP’s, the specialist DO take the disease seriously, which is why they have a hard time looking at me or talking to me.
I am going through the paper-pushing of dying, when I don’t have that ability. I was email the representation agreement (which is required in Victoria, even if you have a Power of Attorney agreement, in order for Linda to make medical decisions). It was because this was not yet signed that I did not have task 2’s, which were taken away because I had night workers so Linda could sleep and Beacon didn’t want them. Now, due to the amount of medication, and the high levels of drugs, opiates, and actions, Beacon wasn’t going to do ANYTHING until we had a representation agreement. We went to the University law clinic and got that started. Then the RN saw me, talked to me, or talked for a bit, then decided she really didn’t want to talk with me at all, and I haven’t seen her since. And the Task 2’s, which HAD to be signed and such in person…we are notified by phone they are approved.
I’m scary. This is because people my age in my condition aren’t around for long. So they are waiting for me to die.
The GP is putting me into the pallative society, and talks with Linda about the ways, the three ways in which deal is likely to occur. The start of these ‘death scenerios’ occur regularly in everyday life. They are about as abstract as ‘Beth will pick up a book, then Beth with start reading.’ Only have, ‘Beth with start with heart autonomic failure which will be followed, likely due to the strain on a weakened system by other systems in a cascade of autonomic failure which leads to death, perhaps from toxicity from liver or kidney failure, or suffocation due to lung failure.’
This morning, my abdomin was rigid, an internal organ was outline pushing through my back, and my heart was not functioning to the level I could not sleep. I decide to go to ER. I decide not to, as I have my support meeting, the other walking and talking dead people.
I go to the support group, first time in three months – only, on months with five Wednesdays, they don’t meet on the last one. It is an empty room, but I chat with a society member. Left alone, I have heart pains, lose consciousness due to overheating and wake, disoriented on the floor. It is some time until I am found.
In the US there are usually EMT’s and EMT-medics, known as the ‘driver’ and the ‘medic’. The paramedics who come to pick me up are a special group called Paramedic Specialist, which are two heart and lung specialist medics who take calls involving heart problems. They have high training skills and put in a line while I am on the floor, better than in the hospital. I think due to the senior citizen, the need for this unit exists, as they take only heart, passing out and heart related problems. They have a monitor on the fly and can see that my ventricles, the two bottom chambers are not working, and yet, enough of a flow is passing through them to keep me conscious. They know about POTS, and they know about progressive central autonomic failure to ‘get it’. They can see that the erratic are causing changes in my breathing due to the pain. The pain is only like you get if you have PAT’s or an AV node or even if you drink WAY too much caffinee as a student and your heart makes that funny feeling (that’s like a flutter), or if you have a goat kick you in the chest (that is a counter AV node beat), or a ‘ug’ which makes you feel like your blood should be flowing and is stuck, and then it goes away. Those are a ‘single’ heart erratic. I used to have 40-80 erratic in a day when they started the heart medicine.
Now I have, during an hour, 300-500 erratics, which I work through, or try to ignore, until they get so bad I pass out, or are too painful to endure, in which case I just lie there as they make my shoulder and breast jump while I gasp for air. That means, 3000-6000 erratic heart beats of different kinds each day.
S, one of the Paramedics was talking to G, explaining about POTS, and also how they had seen someone with a heart like mine. They transported him this morning and he might be going to get a risky operation behind his heart to eliminate the electrical failure. ‘It is not a heart, or beats we see in someone your age (more like double).’ I wanted to know about D, the operation guy. Was it going to cure him?
“No,” S, the senior para finally answers, “It won’t stop the progression.”
‘The progression’, is like, ‘Quality of life’, or ‘no need to worry about coming in anymore’ – it means, no, he is fucked and like you will die, but maybe without as much pain. That is confirmed when they ask if there is anywhere that ‘I’ know might help.
I am in the hallway talking to S. A guy is wheeled by and looking in pain, followed by three police officers. I can hear him being questioned about what drugs he has taken today other than pot.
S. and I are talking about my problem with low blood pressure and if there is an external way to shrink the veins. He can’t think of any, except, as I remember, cocaine. But that has problems too. The guy in the room and the Police don’t realize that later I will be given to take home more drugs than that guy took today. Because that is ‘my’ deemed medical solution.
One advantage of being T, (terminal) is you get to talk about taking cocaine around police officers and no one thinks it is a problem.
The good news is that, one test deemed that the erratics over the last two weeks have NOT structurally damaged my heart. Linda had called the general reception and found that to get quick tests, push for the tests you want, and say them over and over again. We wanted to know if structural damage was occurring, and if I had a Bladder UTI I could not feel.
I gave blood. Linda said I screamed for over a minute, without taking in a breath. I guess that music training paid off: go breath control. All I remember is the pain and purple, and then going funny and almost passing out as he had this huge syringe of musky dark blood, with silt and a layer of clear atop, putting the syringe into the various vials for testing. That and the needle sticking out of my arm, the the line to match was a bit much.
The answer? If I had cancer stage 4 and it was affecting my heart, they would say, ‘You don’t need to come in anymore. The pain is not due to structural damage.” (to heart people and ER people almost all ‘pain’ in the heart is ‘structural’ while the PAT’s and such are merely ‘interpreted as pain by the body, lungs and brain’. So they would say that I need higher doses of pain medication and concentrate on that. Because late stage cancer causes central autonomic failure and there isn’t anything they can do, but give you the lollipop.
And that’s pretty much it. I asked the heart specialist paramedics, I asked the RN’s, the woman who I said, ‘oh, start recording now, here comes a bunch’ and who was the only person to clean up the ‘medical litter’ left on me. No, they had never seen a heart like it, not in thousands or tens of thousands of ER patients.
I didn’t have a UTI, and no current structure problems so I got a Fentynal patch slapped on me, next to the one already there. “How long has it been since it was increased?” The doctor, who was good, knowledgeable and trustworthy asked.
Linda thought it had been two weeks, maybe heading towards three. “Okay, good enough.”
I tried to talk to him about this steady progression up the Fentynal ladder (since what he ‘added’ was more than twice what I started on with Fentynal), as with the expectation I would tak this or soon more during the day, there was going to be a limit reached of the maximum amount of patches soon enough.
“That’s why Fentyrnal was made,” he said, “To take care of pain.” Then he moved onto increasing the opiates for when I sleep, so that the pain doesn’t wake me up.
When people give you morphine so you can talk to them, or give you some Fentynal to cover you until you see your GP in a few days, that means you are needing to ‘be made comfortable’. No big tests to run, no looking out for side issues, just ‘more pain, cover it up’ I don’t have to go to ER because I am in pain due to dying, not because I am someone they can help from dying.
“Except you are still here,” one person said. Yes, I am still here, can still get tartar problems due to tooth brushing, and still need to stabilize all functions possible, but those I can’t, just cover them over, like Wilkie Collins, with vase quantities of laudanum.
Off to sleep now, and adjust to the new pain meds. Neither I or Linda had counted the heart pain from erratics in the pain medication for day or sleeping because, well, it was supposed to get fixed right? Except now it is too far to fix, and there are no nodes to burn out, and no failing of the heart to beat, which could use a pace-maker, just pain, and autonomic failure. It was a very tiring day.
2 days ago