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ME/CFS: A disease at war with itself
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Update on Alex3619: in hospital but doing well

Discussion in 'General ME/CFS News' started by WillowJ, Feb 27, 2013.

  1. alex3619

    alex3619 Senior Member

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    Hi allyb, we need every advocate we can get! Please welcome Ruby to the team for me.

    Sadly Sandy Hair and Raven Hair were at the old hospital. I would like to add though that I have yet to meet one staff person in either hospital who isn't nice. I guess it takes a certain type of person to work under these conditions. They care. The problem with ME is one of ignorance and misunderstanding, not lack of concern.

    CBA - couldn't be as**d ?

    I am counting down the days till I get home again.
     
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  2. alex3619

    alex3619 Senior Member

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    The Laptop story. The first places I rang don't deliver to hospitals. So I rang my phone provider, Optus. Delivery is no problem they assured me. The day before it was to be delivered I was moved to Beaudesert Hospital so I organized for redelivery. No problem they said, but it will take longer.

    Nine days later I rang Optus to check on delivery. It was not being delivered, it was on administrative hold. They do not deliver to hospitals. They had not told me. I cancelled the order for an ASUS tablet.

    I then saw a sale on at one of our large department stores, Harvey Norman. Laptops half price. So I put in an order, and got it delivered by Australia Post. I was expecting issues, and as it turns out such issues were likely. They finally delivered early this week, and I am back online as a result. However, an orderly was responsible for the delivery. He knew I was waiting, and the post office guy was about to card me at the nurses desk, requiring me to go to the post office. The orderly said NO, he is waiting for you. The postman said he is not required to go beyond the nurses station. The orderly was insistent though, and has my thanks. The postman delivered and then took credit - you can trust Australia Post he said. I trust them enough to start writing emails about how to fix the system. People stuck in hospital beds still need parcel delivery, and cannot just get up and go to a post office at will.

    This is not a question of getting an extra free service from couriers or post office. I was happy to pay extra. Its a problem in that nobody does it - the option is simply not available.
     
  3. alex3619

    alex3619 Senior Member

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    Politics and Logistics. I was just moved to yet another room. This one is a two bed room, with me as the only occupant. When I woke up from surgery and a nap on the 26th February, I was in a room with three other people. One had surgery to fix a previous implant issue - this was an orthopedic ward, everyone had broken bones. Then they took him away to a
    private room - he had an infection. Then we found out we were all to be tested for MRSA, multiply resistant staph aureus.

    Several days later I came back testing positive as a carrier - I was not infected, I already had it. They moved me to aprivate room.

    While all this was happening many of the nurses and other staff were being informed that they were losing their jobs. The hospital was losing twenty beds and four operating theatres (I think).
    I was in a private room. I am not infectious, but I am a carrier. The MRSA superbug is now in over half of all medical staff here, and probably in half of all people with a lot of contact with the public. In time everyone will be carrying it. There is no real risk unless someone has a severe injury through the skin, or the immune system becomes very depleted. Even then most can fight it off. The problem arises only when someone can't fight it off, because we are pretty well out of antibiotics that can fight it effectively.

    When I moved to the new hospital, I was put in a room with another MRSA+ patient, though she only remained a further day. The other two beds were empty. For the next several weeks I was in the room alone. Today they moved me to a smaller room.

    I suspect I was a political football. MRSA is not a big issue unless the person is infectious. Precautions are a joke
    because many patients and staff are MRSA+ but nobody knows - they have not been tested. This is politics, not really science as we know it. Its a politics of fear and manipulation. I think the claim that we need special rooms for MRSA+ patients is used as an excuse to keep more hospital beds open, beds which the state government might want to close.

    I may say more on this issue, but probably when I get home - which should be about 10-12 days away.
     
  4. Kina

    Kina Moderation Team Lead

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    My uncle died of an MRSA infection. I don't believe that removing MRSA-positive patients into single rooms reduces cross-infection. I think it might be prudent to look at more effective means of preventing spread of MRSA as the way to go. I looked after quite a few patients when I was a Community Nurse needing antibiotics because they were infected after surgery etc. It's a shame -- you go into hospital for one thing and come out with another. It is a serious issues for those who have had surgery and have incisions especially if one is in an intensive care unit.
     
  5. dannybex

    dannybex Senior Member

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    Glad to hear you're on the mend Alex. I find it quite amazing that they're insisting you stay at least six weeks, let alone ten. Here in the US, you'd be back in your house/apt within a week or maybe two at the most...at least that's been the experience of friends.
     
  6. alex3619

    alex3619 Senior Member

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    When I got into hospital, I was expecting to be there hours or days. After surgery, I thought a week. I wasn't expecting to still be here either.

    If I were fit, had no other health problems, lived in suitable accommodation, or had close family who could look after me, I think I would have been sent home. Living alone, with multiple health issues, unfit, with no nearby family, and being assessed as a moderate fall risk is what made the difference. There was a high risk I would re-break my leg and start the whole thing all over again, that is if I did not break something else.

    However this is costing on the order of $50,000, paid for under our free hospitals. If I had my choice I would be sent home early and they could credit me $40,000 for treating my ME, or even just send me home early so I could get back to the usual. That is not how it works though. Things are definitely wrong with the system, though for once this is in patients' best interests.
     
  7. Valentijn

    Valentijn Activity Level: 3

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    When my aunt broke her ankle, with the bone going out the skin, they sent her home the day after surgery - plates and screws. She couldn't rest her foot on the ground, but her leg was still numbed from the surgery so she couldn't really lift it, and she lives in a three story townhouse (entry on the bottom, kitchen in the middle, bedroom on top). So I moved in a few hours after she broke her leg to take care of her and the new dog she was walking when she broke her leg. When she first got home she had to scoot backwards up the stairs with me supporting her leg so it wouldn't drag or bang against the stairs.

    If I hadn't been able to move in with her on very short notice, she would've been pretty screwed. And that's with "good" health insurance in the US.
     
  8. Nielk

    Nielk

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    Hi Alex,

    I'm glad to hear that you are recovering well and back "on-line".
    Because of your personal circumstances, I am relieved to hear that they are keeping you on there. Financially, it probably would make more sense to send you home with an aide to look after you but, if that's not an option, this is the next best thing.
    I wish you continued good recovery,
    Nielk
     
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  9. dannybex

    dannybex Senior Member

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    I've heard similar stories from friends with CFS, cancer, etc., who have broken ankles, legs, arms...

    Just inexcusable. If members of Congress were treated this way, perhaps (?) things would be different...
     
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  10. Lynne B

    Lynne B Senior Member

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    Hi, Alex, It's great to hear you're online at last and your leg is on the mend. Hope everything goes alright from now on and you get back home none the worse for it all.

    Cheers, Lynne
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Alex, have u run out of corn chips yet??:lol:
    hopefully the wardsman who scored your computer is helping u out with some goodies :thumbsup:
    I see deed next week so will fill him in about your leg.

    cheers!!
     
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  12. alex3619

    alex3619 Senior Member

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    This has been discussed and is one of the proposals that I will be emphasizing when I write to Queensland Health. The government has talked about this but done nothing. At the same time we have a nursing crisis. We are training lots of nurses, but there are no places to put them because the government is slashing medical budgets. At the same time we are heading for a major nursing crisis projected in about ten years - not nearly enough nurses. So they will have to import nurses. Meanwhile our nursing graduates are facing their qualifications expiring because they cannot get enough nursing practice.

    I think we could REDUCE costs by hiring some of these to attend patients at home, mixing it up with more experienced nurses. Its a win-win-win and I will be contacting the nursing and medical associations as well. I can't see a downside, except that some of the duties of a home attending nurse might not fit traditional nursing practices. So maybe they get hired in a dual role? Nurse/carer or something?
     
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  13. alex3619

    alex3619 Senior Member

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    I am sorry to read this Kina. MRSA is about to become a reality for the entire population, they cannot stop it. Every operation or major injury will then have the risk of a lethal infection. Until we find better ways of fighting MRSA this will be the reality. Its one of the urgent medical research priorities. We can only reduce the risk, we can't stop it.
     
  14. alex3619

    alex3619 Senior Member

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    This is more or less what I was expecting here, but it never happened. Its so sad that this happens. People are left to fend for themselves in too many circumstances. The history of ME is a major example of this, but as others have said here this is common. There must be ways to fix this, but I doubt anything will be done anywhere until a large percentage of society wants it to change.

    I can recall reading of an ME patient years ago who could barely crawl to the door. People used to leave her food. I then heard nothing more. I hope that things worked out for her.

    Abandoning sick people too early is not a good idea. There needs to be checks. People with wealth or support networks have additional options. People without those ... if a sick or injured person goes home, then gets worse through neglect, then goes back to hospital incurring major new costs, is that a saving? Minimal home help can save the medical system a fortune.

    These things need to be monitored and medical and insurance practices modified to reduce the downside. Is anyone doing that? I don't recall reading much about this.
     
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  15. alex3619

    alex3619 Senior Member

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    I have been described two nurses and a doc in terms of TV characters. Here is one more. One of the ladies working here said she figured out who I sounded like: James Earl Jones. I took that a compliment, as he has a very impressive voice. Its good she did not hear me at one of my weaker moments though, my voice is more a whisper at such times. Instead she tends to catch me during better hours, when have a positive and deep voice.

    My voice and knowledge on certain issues is creating a mirage about my capacity. My issues are made even more invisible by these things. Smart people don't have cognitive issues. Strong voices mean you are not sick. A positive attitude means you don't have emotional issues. The list goes on. People quickly make judgements based on what they have seen. The unseen never counts. When something contrary to their expectations occurs, they tend to dismiss it.

    We are said to have an invisible disease. I think we are also fighting an invisible war for recognition, research and treatment.
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    patients arent suppose to know more then the docs and nursing staff.
    Alex if 50% of your brain was working it would still be better then alot of the wombats in society. its a pitty we can plug them into our brain and see what its like with the fog and the constant pressure building within. Our memory recall can be great with somethings but then cant remember some basic things the next. Its like we understand how something works but cant explain it and for me recalling names is another shocker for me, hey bill? i mean Alex:lol:
     
  17. Dreambirdie

    Dreambirdie work in progress

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    Ooooh! James Earl Jones meets Einstein. That's quite a persona you have there, Alex. :cool: :)

    This is always a pisser for me too. My cognitive functioning benefits greatly from reading, which I do a lot of. And I enjoy sharing what I read with others, (sometimes very enthusiastically!), which leads to conclusion that my brain and my attitude is just fine. But put me behind the wheel of a car (with so many distractions bouncing in from all directions), and within a few minutes I feel like I'm going to pass out from the stress.

    I have learned that there are certain people (my creative compadres) that I have to pump myself up for and "act well," in order to convince them I'm able to pull off a project, and then there are others that I have to dump a litany of complaints on, to ensure they don't conclude that "I am fine."

    This illness has been a very weird long poker game. There have been many times where my life has depended on exactly how well I bluffed my way through it.
     
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    When I was working in a hospital they checked everyone for MRSA when they were admitted. About a third of patients coming in were carrying it. :aghhh:

    Sushi
     
  19. alex3619

    alex3619 Senior Member

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    I touched upon this kind of idea in my blog Masks. So often we are driven to wear the masks we do. However if we can gain enough mastery to control the masks, to match the game to circumstances, I think that is very empowering.

    I too don't drive. For me to drive would be like drinking a bottle of tequila then getting behind the wheel. Indeed most drunk people might be safer drivers.

    So much of what I do too is a bluff. People simply do not see the issues, and as a result questions never arise and I can get on with doing things. However there are times when this causes conflict, because when someone does see a problem, but doesn't see the cause, they speculate/guess about the cause - and usually get it wrong. In part this is because the guess usually results in stereotype.

    So the ignorance of ME and our issues leads to problems in recognition and reasonable treatment, but it also empowers us in that we can sometimes (at least for mild and moderate patients) get through without running into discrimination. I don't know how right that is for those more severely affected. If I were currently playing the ME card here in hospital, I suspect things would be much harder for me.

    Yet by not raising the ME issue more often I am playing into current views based on ignorance and discrimination. When placed in vulnerable position its much harder to act. Instead I have been focussing on issues and carefully mentioning research that is based on strong evidence - one example is I have discussed Amy Yasko's research in autism and methylation, and discussed the issues on methylation and folic acid. I even mentioned Rich a few times. Other research I have discussed involved orthostatic intolerance. On an issue by issue basis, sticking to the stronger research, its easier to gain ground.

    There are people here who think I have good memory (episodic, not semantic). Others think I am just unfit etc. Some don't realize I have major sleep issues. Their views are on what they see. That narrow slice of reality seems to largely define how people react. Hmmmmm .... this hospital is my laboratory I guess. It even came up during blood pressure testing - I was tested during eating lunch, and wanted to know what the results were as it would give me a clue on how much blood was being diverted to the GI tract.

    So far my periods of fog, which are less common on resveratrol, do not correlate with regular blood pressure or blood glucose issues. My guess is its more about brain vasoconstriction. Doh, I don't want to keep rambling, I can do it all day.
     
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  20. alex3619

    alex3619 Senior Member

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    Yes, my memory can be really good when I am on a roll, and I can talk/chat for hours on a narrow topic. Yet like you I can sometimes not remember even basic things - its all a blank. Its very hard to show that to people though, they have to see it repeatedly I think, and most are not around long enough for that to happen.

    You might notice that I have not given examples of the things I cannot remember. I couldn't think of any till now - "adenosyl". I keep forgetting that word, doh. Now for most that might not be an issue, but I am a biochemist interested in adenosyl and related compounds. Doh.

    One of the reasons I am dangerous for things like driving is that to function I have to focus so tightly that nothing else exists. I literally would not see a traffic accident coming. Even when walking I can lose so much attention that I kick my feet into any local furniture - even if that furniture has never been moved. That concerns me at the moment as I don't want to damage my ankle further while it is healing. So that tight focus is my compensating mechanism for diffuse fog, and even that it fails quite often. It also took many years to develop, though in retrospect I was a bit like that decades ago.
     
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