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Thread: WHEN YOU HAVE DIFFICULTY COMMUNICATING AND MEDICAL STAFF HAVE NO KNOWLEDGE

  1. #1
    Join Date
    Jul 2012
    Location
    Tecoma Vic
    Posts
    9,148

    Talking WHEN YOU HAVE DIFFICULTY COMMUNICATING AND MEDICAL STAFF HAVE NO KNOWLEDGE

    Last Thursday and Friday I developed extreme cramp like pain throughout both of my legs, just continuous pain that didn't let up. I had sleepless night. It wasn't the usual spasms of Electrical pain I have been getting. After 2 days , I couldn't stand it any more, I just wished some one would just amputate my legs to relieve me of the pain. Tramadol did nothing for me and
    I then started to get severe pain in both sides of the groin, it felt like a tourniquet had applied to my groin area and was getting tightened.

    I am aware the MSA ( Multiple System Atrophy) has various symptoms like joint and muscle pain. I inquired on a private MSA suffers face book page, about this and was told it was one the joys of having MSA, but should get checked out my a doctors as it could be Deep Vein problems, It was highly unlikely though as none of the other tell tale signs of DVT was shown and was in both legs and no redness.
    I tried to contact my neurologist but could only have his booking service email him, late that afternoon I never heard back from him.

    I couldn't talk to my GP that is assisting my management of my MSA. As my mobility is severely limited I was given a phone consultation with another doctor, who had no knowledge of what MSA is or what it does to people suffering from it, it was a complete waste of time.

    Saturday l couldn't bear it any longer l wanted to call an ambulance, we had a bit of a squabble over it as we constantly have problems with health professionals unawareness of this rare disease.

    I called 000 and asked for an Ambulance when asked which suburb I replied, Tecoma and got the reply Lalor
    tried 3 times and had to spell the first 3 letters. Heather came back in and told them Tecoma.

    Lately MSA has been taking away my ability to use voice function. I have been trying to avoid using a electronic voice, but that will probably be something I will require. Yooralla assessed me earlier in the year and showed me electronic voice devices Damn expensive they are.

    The ambos came from the station 1 km away and gave me of whistle of Methoxiflurane and told me that it should last me 20 -30 mins enough to get me to hospital. They put on a stair chair and bumped me down the back steps then when out side put me on the stretcher. 10mins later l as at the local hospital where I got triaged and covid swabbed then to an examination room.

    there a young nurse asked me what Mulitple System Atrophy was as she had never heard of it. I tried to tell her with difficulty as me voice volume drops too low and sometimes no voice comes out, she asked if I would like to hold her hand, l took her hand and explained what MSA did and what the future for sufferers have to face which is quite confronting for the suffer and the carers. I could see the look in her eyes and she showed compassion.


    The doctor then tied to put and IV line in but failed then tried a further 2 veins using a ultra sound before they got the canular in. They then injected morphine into me and took me to a ward.

    In the ward I was placed in crowded room with 3 woman , then a nurse came in a said because I have sleep apnea I will have to go into another room as my machine would annoy the other patients. So I was transferred to a room on my own.
    They the started me on regular does of endone to ease the pain.

    Shortly after a doctor to my room and informed my my UTI came back ( I had a UTI 3 weeks ago, and had been treated, He thought it may be re infecting via a germ left inside the catheter inner tube and it might best to remove it and replace it he would organise that.

    Then he asked me if I wanted to be revived if something happened, and explained that choosing revival doesn't mean they will be successful and I may not come back the same way,.
    This was quite confronting, and I said so If die don't have to die again later as this heinous disease advances further.
    I him told a had too many ends to fix up and couldn't leave Heather with the burden. I said I have seen my youngest son who is overseas for 3 years. I also told him I don't want to die in hospital and want in my own home .

    On Sunday a social worker came in to see me as the Doctor said I was bit distraught.

    I was a bit ,having to deal with not being able to to verbally communicate easily and the medical staff not understanding what MSA is. The prodding and poking

    The nurse came later and told me they had ordered an inflatable air pressure reliving mattress for me, they must have hired it, as a medical hire company delivered it on Monday morning and the nurse set it up and inflated it on the room's floor. later they used a sling and ceiling host to lift me up and change my beds mattress.

    The nurses were always rushed and worked part time or restricted shifts there were always new ones each shift, some l found caring, some it was just a job. I noticed this many times when dealing with a certain ethic group when I dealt with them in home care or times I have been in hospital in the past. They are just robots programmed to do stuff without compassion .

    I have very little mobility at times and can not roll in bed, numerous times I required assistance to move in to another position as I was getting pressure sores , and every time they came after I pressed the nurse call button and they asked me what was wrong , I had trouble talking and to be understood.

    After every time a new nurse came they would move my bed head higher, which caused me breathing difficulties then they would hang the bed controls where I couldn't reach them so l pressed the nurse call, they seemed to get annoyed they didn't say it but there body language showed it as the were understaffed , but l said stop putting the remote out of my reach.

    I took all my meds 36 tablets I pop every day with me in chemist packed blister pack with each days doses. Under hospital policy these can't be used, being the weekend on admission their pharmacy dept didn't have some of my meds so I was cold turkey for 2 days until they got them in on Monday, even though they could have used mine they confiscated. I can understand why the do it but.

    Monday night 2 shift nurses ( the robot nurses) came in and ripped off my boxer shorts and were clean and fitted a nappy to me . they call it a pad, in fact l was rolled over every day to check my pad which I didn't have.
    The next morning the 2 young day shift nurses came to wash me and asked me who put that on me as l was not incontinent.
    Early that morning prior to the day shift nurses, I woke up in the early hours with my shoulder jammed against thec bed rail and my arm under me. I had a pinched nerve and in a lot of pain, my nurse call button was not in reach. i could hear the nurses outside my door talking and laughing. I tried to call out but my voice is not loud, l called please help me, repeated over and over l was tying to yell and getting frustrated, l was in pain.

    Eventually some one heard me and asked what was wrong, l couldn't talk, I couldn't see who came, but they said they would get the nurses.

    When the nurses came all they heard was the word pain, ad asked if I wanted pain relief?
    I tried to say pinched nerve and they just grabbed me and yanked over on to my back. l screamed in pain when they did that. They then positioned me which wasn't really comfortable and left, the bed controller was also out of reach again.

    I apparently was on a restricted liquid diet, so had little to drink except thickened cordial , juice, lemonade and thickened water, but was thicker than l normally have. Then the doctor comes and tells me l'm dehydrated and they put a drip into me.

    Then the time comes, I need to poo, I press the nurse call , they take for what seem ages to come and then come and don't back quickly, so l end up soiling myself. It happened a few times after one nurses gave me laxatives, pan requests are not a priority and the key is try not to need a pan on shift change.

    The night shift robot nurse cam with my medications and told me to open my mouth and poured the cup full of pills into my mouth , I have aspiration risks , and take 1 or 2 at a time, but this apparently must have been to hard for her. No other nurses wold do this to me.

    With MSA is is common to have fainting or light headedness due to orthostatic hypotension, a condition in which blood pressure drops when rising from a seated or lying down position.
    There was panic when my blood pressure was taken with me lying and rested when readings of 205/100, sitting up the pressure dropped to 75/55 when standing and then feeing like I am about to go down . The doctors were worried, but I showed no other signs like eyes sight going or dizziness in my head when it was high, I felt normal, considering.

    Another time I was clammy and sweaty, the doctors were worried, again another symptom of MSA, I lost the ability to control my body temperature.

    Anyway after I had the doctors visited on Thursday I was informed that medically there was no reason to keep me there, but the physio had concerns that if I was allowed home I might be in danger with only Heather there.
    The physio wanted to keep me at least to Tuesday net week and do an extensive rehabilitation course in house. So l had to work on gg the physios approval.
    Then the doctor whilst on a 3 way telephone conversation asked whether Heather or myself had considered a nursing home for me.
    I was gob smacked.
    Friday morning the physio cane to see me , she was reluctant to release me due to the lack of mobility and only having Heather to care for me. and how it took 3 people to get out of bed on to the a chair the day previous.
    I told her that I had daily 4hours of personal care workers available but due to covid don't feel safe having people in the house. I told her my doorways have been widened and I have a powered wheel chair an a lift will be installed so I can use it in e no s4side, and a harness and an electric hoist installed on the ceiling to lift me out of bed and have a $10,000 wheeled commode for toileting and showering and that the shower is a drive in type.
    She said she looked up what MSA was. I told her if she wanted to improve my mobility then l would never be able to leave the hospital and the fact I already have Neuro physio that sees me twice a week and is more qualified than a normal physio.

    She would talk in a loud slow voice, I wasn't sure if she normally talks this way or it was because I cant talk properly and thought I was death and talked slow because I was mentally challenged. Anyway she agreed to sign them release.

    Then at 5pm on discharge and the patient transfer ambulance arrived and I had the high blood pressure reading which would have jeopardised me leaving.


    Now I am in my own home for 2 days now my BP has gone down and I slept well.


  2. #2
    Join Date
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    It's good to know that you're home Mario, regardless of how crook you are, home is one's haven.
    I know what you mean about a certain ethnicity and compassion.
    If you don't like trucks, stop buying stuff.
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  3. #3
    Join Date
    Jul 2012
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    Tecoma Vic
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    Quote Originally Posted by V8Ian View Post
    It's good to know that you're home Mario, regardless of how crook you are, home is one's haven.
    I know what you mean about a certain ethnicity and compassion.
    it's also very regimented in hospital like dinner at 5pm, I never have it that early, the nothing until breakfast, then strained porridge for breakfast. i had no tv, i only had my mobile, when that was flat i could reach the power point. a nurse did plug it in but didnt flick the power switch to on, so spent hours on my back looking at the ceiling for hours each day. they did bring a recliner in on Thursday, I was put in that and sat there for hours until. no one checks on you unless it's to give you pills or drain blood. I couldn't move with out help and was getting pressure sores and the blasted call button was never put where i could reach it. the nurses did have the bed rails up that l could try and pull myself around a bit but then some nurse lowered one side and said it is not allowed as it is deemed entrapment and takes away liberties or something
    I dont expect hotel service but they are understaffed..


  4. #4
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    Mar 2018
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    Perth
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    Jesus H tapdancing christ (name that quote) Mario. I've seen inadequacy in the health system from another angle, but that really brings it home.

    I'm afraid all I have to offer is a stream of expletives. If you ever want someone to swear on your behalf, or just to swear then let me know. It's about all I'm good for these days.

    On another note, your typing appears really good. There are excellent bits of speech synth software that might be useful coupled with a laptop. That way you could at least let the nurses know what you think reliably. A bit of a pain having to carry a laptop, but you could always throw it at them for "punctuation".

  5. #5
    Join Date
    Jul 2012
    Location
    Tecoma Vic
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    Quote Originally Posted by BradC View Post
    Jesus H tapdancing christ (name that quote) Mario. I've seen inadequacy in the health system from another angle, but that really brings it home.

    I'm afraid all I have to offer is a stream of expletives. If you ever want someone to swear on your behalf, or just to swear then let me know. It's about all I'm good for these days.

    On another note, your typing appears really good. There are excellent bits of speech synth software that might be useful coupled with a laptop. That way you could at least let the nurses know what you think reliably. A bit of a pain having to carry a laptop, but you could always throw it at them for "punctuation".
    rhat took me all day to type. i trialled on of thosse prest set word machnes monhs agio with yooralla


  6. #6
    Join Date
    Mar 2016
    Location
    Adelaide
    Posts
    1,721
    Good to hear you’re home again Mario. Working in health care it’s interesting to read your story from a patients perspective.

    Sadly health care workers are like mechanics - there are good ones, average ones and crap ones.
    "Land Rover - making mechanics out of everyday motorists for nearly 70 years"

  7. #7
    Join Date
    Jul 2009
    Location
    Hobart
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    2,850
    Hi, and others who don't really want to be there. Fortunately there are some dedicated staff who devote their life to the care of others.
    Cheers

  8. #8
    Join Date
    Oct 2007
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    Fleurieu Peninsula, SA
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    3,782
    Glad you're home again Mario.

    We have a close family friend going through exactly the same thing with MSA.

  9. #9
    Join Date
    Jan 1970
    Location
    Logan
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    25,304
    Great you're home and able to describe your experiences. All I can do is encourage you to look for positives to balance the negatives. Heather would obviously be the biggest positive.
    2009 Defender 110 2.4. ARB bulbar, Ironman winch, Safari snorkel, Steinbauer chip, AP HD clutch, Lightforce spots, larger tank, Off Road Systems drawer, Traxide 160 controller, Tekonsha brakes, Mulgo seat runners, Uniden UHF, Nuggetstuff seat corners, breathers, Polaris GPS.

  10. #10
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    thoughts are with you Mario...
    1995 Defender 130 Dualcab Ute

    "Make the lie big, make it simple, keep saying it, and eventually they will believe it." -- a warning from Adolf Hitler
    "If you don't have a sense of humour, you probably don't have any sense at all!" -- a wise observation by someone else
    'If everyone colludes in believing that war is the norm, nobody will recognize the imperative of peace." -- Anne Deveson
    “What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.” - Pericles

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