so what happened? I don’t know

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I haven’t posted for a while, I will try to fill in the gaps.

I had serious complications from my hysterectomy.  My surgeon refused to treat my pain, and gave me the opioid dose equivalent of an opioid naive patient.  It appears my anaesthetist did NOT give me steroid cover, despite the last thing we talked about before I went under was my Adrenal Insufficiency. Confirmed by short synacthen test.

Briefly, I woke up post op with terrible back pain, worse than the incision pain. I was on a fentanyl  pump, but it did nothing.

After 24 hours they agreed to up the dose. It still did nothing.  The mibraine level headache, nausea and vomitting begain. This would continue for the next ten days.  Each night the pain would become unbearable (I;ve never said ’10’ before, but I did during these nights.) Around 11am it would fade to a 9..then 8..then 7.  I would have a few hours at 7 and it would return around 4pm…8…9…10. By 8pm I was in hell again. I do not know how I survived.

On Saturday I called my sister to get me out of there.  The hospital refused to treat my pain. My surgeon ordered that I was not to be given pain relief, nor a head CT until the following day.  I was told to stay with panadol or discharge myself.

I couldn’t walk. i couldn’t see properly. i was still in agony, yet this hospital was throwing me out. AFter much debate, and calling my GP for help, and a few other people for help, we all agreed I needed to be transfered to the ER, across the road.

I arrived there at 3pm. They gave me a head CT (negative) and watched. I had left side weakness, and still a severe headache.  My vision was blurred and I had sparkles like a migraine. But no migraine has ever been this intense, or lasted this long. And I don’t have a strong history of migraine.  It took 5 hours before they gave me morphine.  I was in agony. I could never go through that again.

By 1am they transferred me to the ward.  They had given me a tonne of morphine and I was still in pain.  But it was milder…just.

The next day they did more investigations and discovered my haemoglobin was dangerously low.  I didn’t know you could die from anaemia.  Watch an wait, six hourly bloods.  Finally I became critical and I was woken at 1am to have more blood taken and two hours later I was transfused.

Without that transfusion, I would have died.

Had I stayed at the other hospital, I would have died.  No question.  I would have been a statistic.  I can’t believe that medical staff would do that, but they did.

My new doctors said the only explanation is that I has serious blood loss in surgery. They said I lost nearly half my blood.  If you lose 40% of your blood, you usually die.  I didn’t.  I’m lucky.  But I can tell you by the time that doctor hung the back of blood, I was ready to die. I’d had enough. I gave up. I wanted to close my eyes and just let it all stop.  The pain was too much.  The cruel treatment was too much.  I couldn’t take anymore.

I did go to sleep, but I woke up. I’m very thankful for that. But I know I gave up, and that in itself is traumatizing.  I couldn’t take any more pain. I am afraid. Of pain. Of doctors. Of people.

No one came to visit me. No one even messaged me. No one answered my messages. My desperate messages pleading for help.  That has crushed me.  My friends..for whom I have done much, whom I have helped, supported, loved…left me for dead.  Didn’t care that I was dying.

My ex husband didn’t bring my kids in to see me.  He was too busy with work.  I begged to see them.  I can’t forgive him for that.

I stayed in hospital for another week and then discharged myself.  the left sided weakness improved.  I had an MRI which was also clear.  Still, the stroke symotoms remained…remain still.

The took me to physio in the hospital, and my weakness, pins and needles, hand and leg pain, and balance all consistent with stroke.  The recommended I stay in hospital longer, but I elected to go out patient.  None of the promised outpatient services have eventuated, but I am doing the work on my own.

I was beaten, but I’m not now. I will recover.

This week I was told my kidney function is falling, now at 30-50%.  It’s serious.  My liver is also not good.  My body is in free fall.

I am in a lot of pain. Mornings are horrific. The pain down my left side is severe, and it takes a long time to get moving.  I spend the whole day lying on the couch and that is all I’m capable of. My kids are doing all the housework and keeping the place running.  They are great kids.  The house is a sty, but i don’t care. Here I have love and hugs and that’s what I need to get better. I’m sorry that they have to see me this way, but it has made them more empathic, caring people. That’s something that the world desperately needs.

One person has come to visit me. It has been just over three weeks since the surgery.

I have lost my voice. It’s a raspy, hoarse whisper. I can’t talk on the phone. I can barely be understood at all.  I also choke on food.  My doc says its vocal fold paralysis, and its a sign of stroke.  The stroke I didn’t have.

I’ve also lost more hearing in my left ear.  My hearing aid is useless.  All of this says to me it was a stroke.  But it doesn’t matter.  All that matters is that I keep doing the physio to get my body working again.

One of my ‘friends’ called me a liar.  She said I was making things up for attention.  (Because I know that medical stuff gets you lots of good attention, from long experience! OMG…). She was fixated on whether I had a stroke or not.  But understand this…the migraine/stroke/neurological problems were NEVER the biggest problem.  The deficits (left sided weakness, odd numbness and pain in my hand and foot, blurred vision left eye, loss of hearing left ear, loss of voice) are distressing, especially not being able to communicate clearly, but they were never life threatening.

The anaemia was life threatening.  The kidney disease could be life-limiting.  THEN comes the possible stroke, and after that comes the original hysterectomy.  There’s a heirarchy.  If you have a bleeding finger, its a problem you fix.  But then if someone drops a sledge hammer on your foot and breaks it, you forget all about your finger!  You only have bandwidth for the worst thing, and when you’re in critical condition, you might not be logical or makings sense at all.

Yet I was judged for my inappropriate reactions.  I didn’t react or respond the way my friend thought I should, therefore I was disbelieved. And she let me down during the worst time of my life.  Never once did she consider she could be WRONG.  Or the consequences of that.  The way the people who I’d lined up before the surgery to help me out with grocery runs and such treated me was almost as damaging and painful as the physical symptoms.  But I’ve always been physically tough as nails, but emotionally fragile.  I never rely on people, but if they convince me that I can count on them, and then they let me down, I’m shattered.

So now I’m alone, and staying that way.  That will change in time, because I don’t want to spend my life alone.  I just need to be self-reliant right now.  I am no longer in danger from the anaemia. My kidneys are my number one problem.  Kidney care involves rest, a kidney friendly diet (low salt, stay hydrated, lower protein than I would normally eat) and wait.  My kidneys might improve on their own, or I might wind up with chronic kidney disease.  I just have to wait and see.  If my kidney function has not improved next week I’ll be referred to a nephrologist.

Then there’s the neurological stuff. I am now strong enough to do several sets of physio exercises.  I don’t know what to do about my hearing, or my voice.  A referral to an otolaryngologist is in order if there is no improvement in two week.

Losing the ability to speak is distressing.  I have no problem with understanding words or meanings, its physically not being able to be heard.  I have bursts of voice, so I hope that my voice might become stronger on its own. Most people won’t be patient enough to try and understand me, I know this.  It’s possible that it will heal spontaneously over time, but I don’t know what the odds of this are.  Not good I think.  But I don’t know so I’m trying not to think about it.  My kids are patient with me.

And how’s my RA?  I’m on 25mg of prednisone, so its fine.  Aches, deep aches at night. The right shoulder, the one with the torn rotator cuff, the one that needs surgery, is very painful, especially at night. It’s hard to get comfortable and the pain is referred up into my neck.  But I will NEVER be having surgery again. I’ll have to learn to live with this, because I will never allow myself to be anaesthetised again, unless its life threatening.  The pain makes me cry most nights.  It is what it is.

My spinal pain is much better, but I’ve been lying down for three weeks.  Rest is good for the severe osteoarthritis in my spine and damaged discs.  The pain might increase as my movement increases, but we’ll see.

And how’s the hysterectomy?  It’s fine. I was walking and managing myself by day 4.  By day 4 the usual every day pain of RA was worse than the hysterectomy wound pain.  People do NOT understand that. I live with pain at that level every single day, so that’s how I get through surgery so well.  I’m not bragging. I’m not competing.  Some pepople take it very personally that I cope with pain so well. If they cared, if they were empathic, if they were compassionate, they would realise that this is because I live with awful pain every day of my life.  Imagine.  That much pain.

And I have opioids, and they work well for me.  It doesn’t take the pain away, certainly not acute pain when you move the wrong way and rip your incision. But I’m three weeks post op and that pain hasn’t been tearing or severe since the end of the first week.

But opioids are the root cause of what went wrong here. My surgeon decided NOT to give me enough opioids to manage my pain.  She gave me the equivalent of 5mg of endone, twice a day. I take the equivalent of 70-80mg of oxycodone daily to manage my RA pain.  SHE threw me into withdrawal, shock and my body went into crisis.  Not to mention the massive blood loss that she must have known about.  All of that caused the intense head pain, and the rest is history.  She is an appalling human being.  Her post-op orders amounted to nothing sort of torture, and almost killed me.

The migraine/head pain was by far the worst pain I have ever experienced.  I am terrified of experiencing it again.  I feel like I would die.  I don’t trust doctors and nurses, except my GP, because I was in a hospital in the worst shape I’ve ever been in, and none of them helped me.  One second year resident tried, but the medical heirarchy meant her hands were tied.  And so, I am afraid.

 

 

8 COMMENTS

  1. Im so glad you’re on the other side of that horrific experience! I have checked in daily and prayed for you constantly. If you were in the US I would come get you and your kids and show you all that there are people out there that you can count on. Shame on that hospital and shame on your support group. Please hang in there.

    • Thanks Janelle, I wish I were in the US. But your good wishes mean the world to me! I am doing better today, I think purging a lot of this has helped. And physically I think the anaemia is improving. It’s easier to be optmistic when you’re feeling physically better. The trend is up, and I plan to keep it that way! thank you for your prayers Xx

  2. Speechless. Utterly speechless. I wish I lived closer, I would come and clean your house, and make ready-to-eat meals. I thought I had become immune to the heartless cruelty of people, but this is just…..I don’t know what to say. Its awful when strangers you pass on the street would treat you better than family and friends. And I know from experience, family will hurt you worse than any. Hang in there girl. Sending prayers and good vibs with gentle hugs. Keep fighting, don’t give up yet.

    • Thanks Melissa, I’m grateful for the support I get here. You’re right, family and close friends will let you down, and the last people you expect shine through. I’m told its because I have expectations of people, how they should treat me, and that I shouldn’t have those. Well, that’s bullshit. My expectations are only what a kind, caring, decent human being would do. But wait, I forgot, its all about SELFCARE now, and we’re supposed to look after ourselves, and other people are too busy looking after THEMSELVES so we’re left with a cold, disconnected society. How is that good? How about we ditch selfcare a little, and think about community care, people care, love? If we all share eachother’s loads, we’ll all be alot lighter!

      • I have some relatives (by marriage, mercifully) one in particular who inspired my motto years ago, and I live by it even today:
        “It stops hurting, when you stop expecting people to do the right thing.”
        This way, if they actually do something good, then its gravy, an extra that wasn’t expected.

        • Yep, I totally agree with your motto, and I expect nothing from now on. I have vowed to be completely self-sufficient again…but isn’t it sad? People have forgotten that it feels good to help other people. All these people stuck in their little silos, counting their dollars and wondering why their lives are hollow and empty. And why they don’t feel good about themselves. Ok, that’s wishful thinking…LOL. But its a shame…makes for a cold, disconnected world.

  3. I’m glad you sound a bit brighter/shinier but still appalled at the way you were treated in
    that “hospital” and by “friends”.I’m sure they would expect you to treat them well and with kindness, it’s shocking that they couldn’t be decent and kind to you when you really needed it. The world would be a much better place if there were more people like you.Take care and rest up.

  4. I understand your fear of doctors etc. After going through such an experience anyone would be fearful with good reason.
    I, too, have suffered abuse at the hands of medical staff who were disbelieving of symptoms etc. Years later, it is revealed that I was likely having a major lupus flare which went undiagnosed, adrenal insufficiency undiagnosed, severe blood loss which was on the wrong side of a very thin line as to whether they would give an infusion or not. They chose not and then had the gall to compare me with some text book that said I “should have recovered by now” and then accused me of malingering when I was suffering the effects of anaemia etc. Patients are people, not text books.

    In one hospitalisation when I was the sickest I had ever been, it turned out that I was suffering from an infection from surgery. At the time the hospital dismissed my inability to even walk and discharged me inappropriately and tried to convince me that I had the flu! (I know flu and it was not the flu!) rather than admit its culpability or take responsibility. Later, records revealed an infection.
    Also like you, I find it hard to rely on anyone and have also been let down at the times I’ve needed it most. People don’t realise how hard it is to allow oneself to be so vulnerable only to have it thrown in one’s face. It just teaches us to isolate ourselves, be as self reliant as possible and steer clear of hospitals as much as possible. I would not recommend anyone being in hospital without having someone with them at all times who can advocate for your interests. Patients are extremely vulnerable.

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