Thursday, March 31, 2011

Beth leaves ER and the Hospital: 'make her comfortable'

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.


JaneB said...


No words, just listening and caring

Jaimie said...

I wish I could say something to help, but there really isn't anything to say. Just know that someone is thinking about you and wishing that things were easier.

Aviatrix said...

This is the only situation in which "make her comfortable" actually means, "see if you can find enough drugs so that the pain drops below the threshold that makes her scream in her sleep."

Wouldn't it be wonderful if there really were a way to make you comfortable, physically, emotionally, spiritually, intellectually, sexually, socially comfortable?

If there is any victory here, it is that you are able to maintain your self through all this. I think I would have allowed it to beat me into the form of patient they wanted.

tinarussell said...

(hugs) I’m so sorry, Beth. That’s so awful. I want to yell at everyone there for giving up on my friend when I know she is so, so strong.

Noisyworld said...

At least the doctors listened and you got the right paramedics.
Other that that I send my best wishes that you may sleep comfortably, not because it's some phrase but because sleep will help you cope with all the **** life's throwing at you :)

Lorna Bob and Liam said...

Like JaneB, still listening, still bearing witness.

Elizabeth McClung said...

Noisy: those paramedics pick the call outs, and that I had heart problems and passed out when outside the home, also they read my medalert braclet when making the 911 call, but I am glad I got paramedics to assist (the other solution for vascular constriction was high-G aviation suit).

I had thought that the guy wanting a 'main line' was going to admit me to the hospital and wanted to be admitted into the hospital this time - now I know that there isn't a point to that as there isn't going to a magic cure if I can get past the doors of ER and admitted into the hospital for tests or an operation. So I guess knowing that, focusing on pain control is a reasonable plan. Kind of sucks in the life expectancy plan but at least it is focusing the energy to an achievable goal.

Aviatrix: I though about that when I watched a DVD on the history of CIA torture techniques after coming back from the hospital - that for the caregiver like Linda, two days of the kind of sleep depro and she should be non functional - it is cruel to expect someone to maintain that level of care, and for me, most of the torture stuff, the 'inhumane' stuff was the life of disability.

Paula Apodaca said...

Daarling girl,
You are loved and will always be loved. I don't think of you as scary, but then, I am in orange county, struggling with my MFA project, preparing for my first public reading. I will send you what I read.

Meantime, you and Linda keep yourselves together the best way you can...I will keep reading and praying for you.
Paula Apodaca

Raccoon said...

Nice paramedics? Knowledgeable doctor?



You are still here, and I'm still reading.

I don't know really what else to say.

SharonMV said...

Dear Beth,
I love you You & Linda give each other a hug from me. I hope the patches help.

I've been going through a rough patch, you know the usual - infections, the flu, which cause Lupus flares & Addisons acting up which leads to more steroids & thus to bad blood sugar & shots of insulin.

Anyway, as I was lying about the other day,(unable to work on any crafts, which really pisses me off & gets me down), and dealing with the depression lupus often brings on - I was thinking about the last few years since my CVID was diagnosed, how I had not gotten better, only dealt with illness after illness. And I thought there has been really nothing to mark these years for me, nothing good to give meaning. And then it flashed into my mind - there's been Beth! There is Beth!


Linda McClung said...

Just wrote a long response and the one time I forget to copy it is the one time I lose it. Grrrrr!

So, an abbreviated version...

I'm glad you had understanding paramedics - they seemed very nice when I talked with them. I liked that one stayed with you in ER until I arrived 30 minutes later and you were given a cubicle.

I was surprised by how long it took for you to see the ER doctor - nearly 5 hours waiting in your cubicle.

I was relieved that there wasn't any structural damage and had never considered that better pain control would help. I was also a bit frustrated when this doctor's advice contradicted the ER doctor from our previous visit. The pain solution seemed to make more sense than upping the beta blockers (which would just cause more passing out and BP problems).

While we were waiting I was torn between hanging around on the chances of getting a solution and watching you suffer, getting weaker and weaker. You had been up about 10 hours and should have had a nap hours ago. You couldn't sleep more than a minute or two before the noise woke you up. And the heat was turning you into a lobster.

I was glad to bring you home where it was cooler and quieter where you could eat and sleep. Doesn't seem right that you could sit in ER for over 6 hours without any food or drink offered to you.

Neil said...

I'm here, I care, I'm praying for less pain and fewer erratics. I wish I could be there, and could hold your hand, or give Linda a break now and then.

Love and zen hugs,

SharonMV said...

Dear Beth,
Thinking of you through the night & today. I hope the increased pain meds are helping. It must be so scary to have had heart pains & pass out while on your own. I'm glad that the special unit of paramedics picked you up. It is very ironic & frustrating that only now are the medical people aware of your disease and how serious it is. Yet they have other ways now to keep their distance. I'm glad you had a good paramedic and the doctor who upped your pain meds.

I wish we could wake up & be in a world where there were good treatments to improve quality of life and (and quantity!) for diseases like yours. Easy access to medical care and all doctors were compassionate & smart. I don't ask for a cure even, just the chance for those of us who are chronically ill to LIVE with our diseases, to live a good life.

Lene Andersen said...

I'm here, I'm reading and I'm sending you love.

Fugzilla said...

I don't know you, and I just happened upon your blog... Just want to say that I care and I'm sending positive thoughts your way. <3

wendryn said...

I'm here. We're both thinking about you & sending good thoughts. I don't know what to say other than that. *hugs*

Baba Yaga said...

Oh, my dear.

I understand medics (and associated types) who can't help and are scared of the patient - for me, it was being too loopy for them. Or loopy in the wrong way, or something. It's dehumanising, the way they react, when they feel powerless and don't want to admit it. And when decent (mostly decent) people react that way, what is one to understand by it?

On the other hand (shrunken and shrivelled, beside the bloated medical hand), there is a palliative group. You've noted often that there was no group for you: why were you not made aware of this one, sooner?

It's appalling that it takes so long and so much work to get night care. I understand it from the bureaucratic point of view, but bureaucracy and heart are not synonyms. & meantime, you and Linda suffer, and that cannot be right.

kita said...

ah Beth, I am so so sorry to hear of this. I hope the patches help you. Holding your hand in spirit. hugz.