Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Bedbounders: how do you get essential medical treatment?

Discussion in 'General ME/CFS Discussion' started by Ravn, Aug 25, 2017.

  1. Ravn

    Ravn

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    Problem 1: ME + POTS mean I can only sit in the passenger seat of a car for about 20 min before symptoms become bad.

    Problem 2: The nearest medical centre is a 1-hour drive away. Cue major PEM. Worse, recovery from PEM is only partial: each time I loose about 2% functionality. If I continue at this rate they'll have to extend the functionality scale into negative % :(.

    Problem 3: I also have haemochromatosis. Treated haemo is no big deal. Untreated haemo, on the other hand, leads to organ damage and is ultimately fatal. Treatment is essentially the same procedure as donating blood, except at the end of it they destroy my blood because obviously they can't give nasty ME blood to other patients. Anyway, they only do the treatment in the clinic, no home visits, and I need at least 6 per year.

    Talk about being caught between a rock and a hard place!

    Have tried breaking up the travel, 2 days to get there and 2 days to get back! Still crashed badly.

    My doctor tried to track down some sort of ambulance transport, hoping that travelling lying down might be easier, but has found nothing.

    Any bright ideas?

    Footnote: Untreated haemo becomes a fatiguing condition and can get in the road of an ME diagnosis. Hasn't happened to me but have heard of somebody with haemo who was told if you have haemo you cannot have ME.
     
    Last edited: Aug 26, 2017
  2. Dainty

    Dainty Senior Member

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    A vehicle you can lay down in?

    When I was at my worst, my family tried taking out all the seats in our minivan and put cushions and blankets and pillows down in the back. It didn't have a seatbelt and technically wasn't too safe, but we were desperate.

    For problem 3, I don't know if you're in the US or not, but if so you should be able to hire a phlebotomist to do it. EDIT: just saw your "kiwis" thread, I don't know anything about over there sorry!

    Wish I could be of more help. :/
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    Do you already use a wheelchair both outside and in your home? If not, this will make a HUGE difference, especially if you have POTS, and you would be seated the entire time. And if such a thing exists in your country, having a mobile phlebotemist come to your home like @Dainty said above.
     
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  4. alex3619

    alex3619 Senior Member

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    The problem with haemochromatosis is that a regular phlebotomist cannot perform a venesection. It requires a specialized location.

    These will probably help. I know of at least one patient with severe issues traveling who uses both these things combined. I do not know if a sedative would help, but it might, and could be discussed with your doctor.
     
  5. Ravn

    Ravn

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    Vehicle @Dainty - have considered that, just a bit worried about the safety issue. But may get desperate enough eventually
    Wheelchair @Ginger- a useful item for sure, except that I can't sit for more than 20min or so then need several hours rest lying down. Which would be a lot of time lying on the backseat on the side of the road, freezing (it's winter here)...
    Phlebotomist @alex3619 - correct, special training and equipment required so they don't do home visits, at least not here.
    No easy solutions here but thanks for trying :bouquet:
     
  6. NelliePledge

    NelliePledge plodder

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    @Ravn left field suggestion if youre in the UK maybe St Johns Ambulance could help with transport in one of their vehicles
     
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  7. Ravn

    Ravn

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    In NZ. We do have St Johns ambulances though. Currently trying to bribe one of the local drivers. Sadly he is a very upright citizen disinclined to break any rules which are emergency transport only and it appears I'm not an emergency. Guess I should be glad about that at least ;)
     
  8. Dainty

    Dainty Senior Member

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    Wishing there were solutions to suggest, @Ravn . Offering a hug instead!:hug:
     
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  9. Hutan

    Hutan Senior Member

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    From the NZ St John website:

    Have you tried contacting your regional St Johns office rather than your local driver? They may be able to work something out for you.
     
  10. Ravn

    Ravn

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    Yes, in principle they do transfers, at a very hefty fee (about NZ$1500.00 per return trip), but I happen to live in the wopwops and our local volunteer St Johns is seriously understaffed plus they don't want their one ambulance out for hours on non-emergency business. Classic case of unequal access to healthcare for rural folks.

    Update: St John's have now decided that they can offer me private ambulance transport, at the lower fee of 650 per return trip. While I greatly appreciate this given the difficulties they operate under, and accept that they have costs to cover, that's still rather too expensive, especially that I need treatment at least 6 times/year, often more.
     
    Last edited: Aug 30, 2017
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  11. Subtropical island

    Subtropical island

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    I can't imagine it would be easy to arrange this for you but

    Instead of a car
    We have a Toyota hiace we converted into a self-contained vehicle
    just as I was starting to realise I was never going to be well enough to go camping again.

    When I go to an appointment:

    First water-shuttle from our wharf.
    (I am usually well enough to walk to it - 100m and 20m down from house - by resting absolutely 2 days before and after any trip)

    Sometimes I lean into my husband's lap if he's there, otherwise I just pretend I'm fine,
    15min-1hr depending on who they pick up. 1hr usually means PEM later.
    (Not diagnosed with POTs, haven't tried to find out, but find lying down helps
    Sometimes sitting on the deck with my head one step below my knees helps the pain)

    Then I sit or lie on the wharf til he brings the van
    Or I walk to the van 500m

    And lie down for half an hour in the back of the van.

    We drive with me in the front but every 20-30min, depending on how I'm doing,
    We/I park on a side road and lie in the back.

    Next time I'll remember to bring earmuffs. Really helping today.

    This works well enough.

    Still best to rest fully before and after but no crashes, just bad days if I don't stop.

    And we can stealth camp anywhere if I need to stop.
     
  12. Subtropical island

    Subtropical island

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    @Ravn i've been thinking about you and that cost for the ambulance transfer.
    I know that you can choose to have an ambulance and pay for it but
    Here in Rodney, north of Auckland, there's a service to get you to your hospital appointments for free or low cost ($25 for 1hr drive) - paid for by the DHB.
    Odd if your doctor doesn't know about it though ... do they not have a lot of elderly patients maybe? Mostly old folks who use it.
    Age Concern do one too.

    Still, you need to recline or lie down so don't know if they do.

    Google gave me this:
    They might not be the right thing but they might know where to find it.

    Get your doctor to call if it's not easy for you?
     
    Last edited: Aug 30, 2017
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  13. Ravn

    Ravn

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    I believe in our area it's St John's running this service and it's seated transport only but I'll double-check anyway, just in case. Thanks.

    Update:
    Red Cross inform me that their Community Transport does not operate in all areas of NZ and transport is seated where they do operate.
    Other providers such as St John's do operate in some other areas where the Red Cross does not, but still seated transport only.
     
    Last edited: Aug 30, 2017
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  14. mhrps

    mhrps

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    I don't get any treatment at all. I can't imagine staying at a hospital or any public place. What is interesting I can manage to live on my own. I am not sure how long it will last but that is how it goes at the moment.
     
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  15. Subtropical island

    Subtropical island

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    :( :bang-head: :sleep:
    I'm so sorry.

    ... stokes basket, head packed tightly with towel or foam and all secured with seat belt? Would need big enough vehicle.

    Don't want to drain you with dead end suggestions.

    Dainty was right, maybe all I can give is a hug.
    :hug:
     
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