Friday, September 13, 2013

September 13, 2013: Looking Back on My Adventures in Lithotripsy



As of tomorrow, it will be a year since I was in hospital for a lithotripsy for kidney stones.  I was promised quite a bit of relief from the pain, and was assured that "...I would be back to normal by Monday..."  This was on the Friday of last year.  I was sedated, and to my surprise, I slept through the procedure.  Sedation doesn't always work with me, but in this case, it did.

I came to in the recovery room, and saw two nurses talking at my right.  I tried getting their attention that I was awake, but no-one noticed.  I am a person who has a heart condition and diabetes, remember.

Finally, someone noticed and I was given a sandwich and a drink.  That was alright, because other than the I.V. fluids, I had nothing to eat that day.  Remember, I was the last person to get lithotripsy on a Friday afternoon, and I was diabetic which meant I hadn't eaten all day.

My wife and me left the hospital, and I was very hungry by that time.  I was warned to watch out for eating too soon, because that could make me nauseated.  I was fine with dinner, and had a pain pill on the way home on the subway. [I later found out that they don't approve of patients going home by TTC, but I can't drive...diabetic, remember?]  Anyway, I was not feeling so good and once we reached home, I was quite sick.

The pain also came back with a vengeance.  I started getting ill and crying out in pain.  You have to understand that I have an incredibly high pain threshold, to the point where someone will hit me and I'll look at them: what?  Not in this instance. [I have since learned that a high threshold of pain is a hallmark of autism, but I digress]

Finally, after vomiting what looked like red - it was apparently the dye from the Tylenol I had taken - my wife called Telehealth Ontario, as we were instructed by the hospital where I had the lithotripsy done.  Telehealth had to be convinced my wife was acting on my behalf: they wanted me to come to the phone, when I was screaming in the background.  Finally the operator was convinced that it was me screaming, and that person told my wife to call 9-1-1.

The ambulance came, and by this time my stomach had settled down and I was able to get upstairs to the front of the house to await the ambulance.  Our neighbours above us heard the noise and were concerned, obviously. I think they offered to drive us to the hospital, but in my physical condition, I wasn't about to allow that to happen.

Here's how high a pain threshold I have: I was able to tell my wife what items I needed in the knapsack and organize the papers that the hospital told us to have ready in case we needed to 'bug-out' as it were.  Anyway, when the ambulance arrived, I was ready to half crab crawl to it, but the attendants told me to wait at the head of the drive.

After we got on the ambulance and found out which hospital we were going to, I then learned that there was no pain medication loaded out on the ambulance at all.  It was all I could do and I was groaning from the pain.  I thought to myself that if I could hold out until we got to the hospital emergency room, I'd be taken care of...

When we arrived in the emergency, at a small regional hospital north-east of Scarborough, north of Highway 7 and east of Markham Road, as the gurney was pulled up to the nurses' desk, I remember hearing screaming in pain won't get you pain medication any faster...  I thought this was funny, because I couldn't help screaming in pain because I was in pain

Anyway, they wheel us to a room...with a closing door...and no windows.  I am in there, and still in pain and a nurse comes to our room, opens the door and says, "...you'll have to keep it down because you're scaring the children..."  My response, and I remember this, was "I don't remember seeing any children in the emergency ward..."   My wife tells me that at one point, I thought I was back at the originating hospital, waiting for the procedure to begin...

I was put on various combinations of tranquilizers and pain meds until, after continuous pain at about four a.m, a nurse came to me and my wife, concerned.  "When was the last time you voided?"  I couldn't remember: my wife had to tell her it was about six that previous evening.  The nurse did an ultrasound as best she could: I was thrashing about on the gurney because I could not get comfortable at all.

The nurse then pronounced, "...It looks like your bladder is fully distended and could burst..."

*from this point onward my memory is fuzzy*

I remember the nurse saying that they were going to put a catheter in.  I am squeamish at the best of times, but this was really bad news.  I asked them to make sure I was really tranquilized, because a) I was thrashing about pretty good and b) I was liable to unconsciously resist.  The original nurse left to be replaced with another one.

"Your bladder's about to burst, do you want us to put a catheter in?" she asked.

I rose up out of the bed and said (I do remember this) "DON'T play games with me...the other nurse sounded like this was a done deal, now get her back in here..."  They were trying to confuse the issue to get me to snap so I would be labeled a difficult patient so they didn't have to deal with me.
 
By this time, they had hooked me up on morphine, which I would have been given in the ambulance - if it had pain medication loaded out.

After this, the pain abated and I was no longer thrashing about.  In fact, before this whole episode, I had convulsions and my wife had to go to the nurses' station - in tears - begging them to do something for me.  We got into the emergency ward at about 9.30 that night - this was at about 3.30 am when this happened.

After the morphine, I relaxed enough to void.  (Took two minutes, filled the jug right to the brim; should have eschewed the jug altogether, but I'm not built that way...as it was I had to get up, go over to the other side of the room and look after my needs myself - my wife was having a meltdown someplace else.

Finally, I fell asleep and my wife - who was by my side the whole time - rested.  In the morning, about seven am, I think, a doctor came to me and listened to what I had to say and I was admitted to a room on the Saturday afternoon.  I was there, in the hospital until Monday afternoon, and most of the time I was on morphine. 

When they took me off morphine on the Sunday afternoon, the pain returned because I was passing the kidney stone fragments all in a bunch, as opposed to a few over time.  They put me back on morphine that night.  I was discharged the next day - Monday.

At no time did the staff at the hospital ever come to either my wife or I and get a summary of what was going on; at no time did they ask my wife what was going on.  My wife tried to hand the nurses at the emergency ward an envelope that had all my papers and charts - from the specialist and the hospital where the procedure was done - and she was flat-out refused.  The first paper they would have seen - and we were told to show this when we got to emerg by Telehealth - would have told them that I was a diabetic with a heart condition.

None of this happened.  I was apparently defined as violent because I was, appropriately for the situation, screaming in pain.  However, and I checked this, at no time was I abusive to the staff; I did not swear; I did not throw things, and other than 'correcting' the one nurse - who I think turned out to be a doctor - I was not combative.  And I had a witness to the event - my wife, who stayed with me for a period of about twenty-four hours.

Remember, we did what we were told; there was no pain medication on the ambulance; I had all my charts and tests etc. with me at the time; and I was told to get to emergency if I was in severe pain or sick.  So the promise that I would be 'back to normal' on Monday didn't come true.  In short, I would say this: make sure you tell whomever is looking after you that they need to listen to you, not just hear.  Make sure you get at least one name - full name - of a person on staff when you deal with them.  Ensure that you have a witness with you at all times so that any disputes can be taken care of, and finally, if you need to, record the conversations so you have an independent record.

I would never recommend a lithotripsy procedure to anyone given what I experienced, because it was only after I ended up at the hospital emergency that we learned that the originating hospital didn't do follow ups - of any kind.  Had I known that, we would have stayed downtown somewhere.

The best part:  I said to my wife that once I was in a position to not be able to work physically, for whatever reason, I would be offered a job with no strings.  At about 6:30 on Monday September 17, 2012, I was called to the phone at home - and offered a job, starting September 18.  I had to say no because of the procedure and the person on the other end of the line hung up.  Oh well.

The Follow-Up

When I went for the follow up appointment in November, I was made to wait for three hours.  The card I had didn't show the correct time; my file was placed at the bottom of the pile because I refused to have an x-ray done: I had had numerous x-rays and a scan done prior to the procedure and didn't feel comfortable getting more fuel for a glow.  So I walked out, after pointing out that I had been there three hours - it was 2pm by this time - and that I had a job interview at 3pm, with just enough time to make it.

I never did get a bill for not showing up to my follow-up appointment, which means OHIP got billed for me waiting there.  At least someone made money.  Oh, and the specialist I was to have the follow-up with?  His office was closed for the following two weeks anyway.   It was standing room only out to the hallway when I was waiting, and I know I saw people come in, wait fifteen minutes, get seen and then go out again.

A year less a day later, and I still have not had their office call me for a follow up.  Guess I'm not a high-priority client...


Nothing like getting good care when you need it, I guess...

5 comments:

  1. wow Adrian. I don't know how you made it through that. It was bad enough when I went in the hospital in April for a psychiatric issue and wound up contracting pneumonia which wound me down in ICU, waking up with tubes up my nose, in my arms, etc. with a nurse telling me that I needed to be still and that the doctor would be with me in a minute. Well over 20 minutes later I finally saw the doctor who proceeded to tell me that I had a serious case of pneumonia and that I would be taken care of in ICU. I asked him how I got down here from the 4th floor and he kept saying you will be all right. Just relax and let the meds work. Needless to say, I was in ICU for over a week, of which time I was put into a seclusion room for 3 more days since they thought I might have contracted TB (ironically the doctor told me that he didn't think I had it, but since my screwy blood work was telling a different story, I had to stay put. All alone in a locked room still hooked up to machines strapped down because they felt I might wind up falling. When I tried to get up to go to the bathroom a loud buzzer would go off and a nurse would rush in, tell me I couldn't go on my own, that i had to use a bedpan. During this time they were all dressed in sterile gowns, gloves and masks. When I finally was released back to the 4th floor, I still had to be on oxygen which was a problem since the 4th floor doesn't normally let patients use portable tanks (I guess they thought I would harm myself). I was released from the hospital 30 days later in total. However, upon seeing my own doctor I found out that I was NOT OVER THE PNEUMONIA and would need 3 more rounds of a super potent antibiotic. To end this hell story, it took 4 months to be finally cleared of all infection. FUN HUH!!!!!! Lavada

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  2. La Vada: the reason you and I survived these experiences is because we are survivors. As well, we have good people in our lives who care for and about us. I know your case was different than mine, and I'm glad you're here. We are tougher than circumstance! I knew I wasn't in mortal danger, but boy, did I wish they had better pain management...and better patient care...my wife is my hero! A.

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  3. thanks. I would have to say that my husband is definitely my hero. He has seen me through so much and still hangs in there.

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  4. WOW....that sounds inhumane and ... well there are no words. My only comparable hospital experience on an emergency basis was about 2 1/2 years ago when the found a 14 lb ovarian tumor.

    I was sent straight from Urgent Care to the hospital with a DVD of my exrays. I was admitted immediately though the ER and given a CAT scan and told only "we don't know WHAT it is, but it is HUGE."

    Tests followed (mammogram, colonoscopy) as I am sure they were looking for cancer. When those tests came back clear, I was sent home to wait for a week until their preferred top of the line oncologist got back into town. (with all my anxiety disorders, I have no idea how I survived that week.)

    I showed up at the hospital, had the chaplain come by, and my own minister, signed DNR papers, organ donation papers and whatever else I needed to not be kept alive by artificial means.

    Throughout all this I tried really hard to keep a sense of humor, telling anyone what wheeled me anywhere that I was grading their 'driving'.

    The morning or surgery arrived, and I was OK...other surgery's I'd had you were out of it before hitting the OR but not this time. I was asked to move from the gurney to the operating table,and I lost it. That's all I remember, they must have given me something to knock me out.

    Bottom line...the predicted 2 hour surgery took over 6. I still suffer from some POCD (Post Operative Cognitive Disorder) which I'm told is frequent in patients over 60 kept under anesthetic for over 6 hours.

    The very special oncologist came to see me once before I was discharged, telling me due to the type of tumor she didn't think I'd have any problems, but would have to be checked annually for between 3 and 5 years. I am at year 2 and clear...and I am positive that is only by the grace of God.

    I told my surgeon (who gave me a picture of the tumor) that I like to watch surgery on TV and I'd like to see my video. He refused...saying "you don't EVEN want to see what we had to do to get that thing out without bursting it." It was the size of a full term pregnancy.

    ALLLLLLLLLLLLLLL that said, the nurses treated me well (I was an insured patient at that time) and I will love forever the nurse that brought me heated blankets one night when I was just freezing.

    I'm still not out of the woods, but at 2+ years, I'm very optimistic.

    I'm soooooooo sorry you were treated so poorly Adrian, I don't know if it's the difference between public and private health care; in patient vs. outpatient surgery; life threatening vs. routine procedure (except for you it was anything BUT procedure)...

    My friend that stayed with me STILL will not tell me what I said or did under the effects of the morphine pump. As a certified pharmacy technician, I knew no matter how many times I pushed the button, I wouldn't get any more than was RX'd but I had some fun with it. To this day, if I ask her, she dissolves into tears and says she'll never tell me. (maybe that is best)

    Just me, Donna, hoping you never have to go through anything like that again :)

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  5. Donna: thank you for sharing, and I appreciate the good wishes. Glad you're okay...and thank you for your support.

    La Vada, I agree...we all need heroes in our lives...

    thank you.

    A.

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