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Thread: Partner with first major pressure sore... not doing well.

  1. #21
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    I'm a 47 year old C7 Quad 23 post injury. Throughout the past ten years I've had a serious problem with pressure sores. I can definitely relate to Patrick's plight. I've had three separate muscle flaps done. All three were severe stage 4 sores and all three ended up with an infection in the bone which required an additional surgery to clean out the infection and a log course of IV antibiotics just to get to the point of being able to have the surgery. One infection resulted in me going into septic shock in the ER and more than likely narrowly (and more luck than anything) avoiding death. When you deteriorate to the point of on open stage 4 wound its a matter of when you get an infection, not if. Throughout all of this, I've tried all of the "magic pills" that the doctors offered (e.g., wound vac, creams, gels, etc.). Most of these are insurance protocols to try to heal it up in order to avoid the inevitable. I can't speak for other patients, but none of that worked for me. It just prolonged the inevitable. While the surgery, and subsequent recovery, is a long miserable process, there is an end to the process and if done correctly, its a favorable end. If you have the surgery and follow the doctors orders to the letter you are healed in a few months. You just have to be diligent about the recovery process and will yourself through it. Laying around trying to heal this severe a wound otherwise is both physically and emotionally debilitating. There just doesn't seem like there is ever going to be an end to it and your whole life is at a stand still.

    All of my sore resulted from sleeping on an inadequate mattress. Over the years I've developed contractures which end up creating pressure points on the bony protrusions of your hip, knees and buttocks. No matter what I did I ended up with sores. The insurance didn't deem it medically necessary for me to have a proper sleeping surface until it was too late. This is an ongoing battle and one that ends up costing the patient their health and well-being. I am not willing to pay that price any longer and nobody should have to go through it. This is hard enough as it is without any more undue burdens. Eventually I bought a used Clinitron online to help prevent any more breakdowns. Throughout all of these issues, It came to my attention that I'm clearly not the only one having issues with both sores and the ability to get the proper equipment to treat them. To that end I've set up a non-profit organization where I acquire many types of sleeping surfaces (e.g., air-fluidized beds, alternating air mattresses, gel overlays, etc.) and with the help a a medical equipment company who specializes in this type of equipment, cleans and refurbishes the equipment and donates to patients in need who otherwise don't have the means to get it. If anyone is in any stage of recovery from a wound and is in need of a piece of equipment. please feel free to contact me I will work with you to get you what you need.

    In the mean time, you need to try to convey to your partner that it is of paramount importance to have the sore taken care of as soon as possible. The alternative is not going to be acceptable to anybody. There are others of us out here who have gone through it and made a full recovery. It may not seem like it but it's worth it.

  2. #22
    Senior Member lynnifer's Avatar
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    There ya go! That's an excellent offer! Thanks for posting that JDellovade
    Make America Sane Again. lol

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #23
    To the OP...I'll defend him this once. High powered antibiotics can alter a persons judgement if he is taking any.

    Have you considered relocating the both of you to Chicago full time?
    "Never turn your back on fear. It should always be in front of you, like a thing that might have to be killed." - Hunter Thompson
    T5/6 complete

  4. #24
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    Thanks Patrick! Don's latest exam showed improvement... The wound is not as deep and less in diameter. They cultured it and it came back negative for MRSA. He is on oral antibiotics (and Augmentin combo and Bactrim) plus probiotics. He is eating alot of protein now. He had an MRI yesterday but we don't know the results yet. They are talking about having a plastic surgery consult next week. He is staying off his butt all but a couple of hours a day. Taking it one day at a time.

  5. #25
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    Thanks Lynnifer... I will get this message to Don and see what he says... Thanks so much for being here and responding.

  6. #26
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    Thank you so much for posting this jdellovade... I am passing all responses onto Don.

    Quote Originally Posted by jdellovade View Post
    I'm a 47 year old C7 Quad 23 post injury. Throughout the past ten years I've had a serious problem with pressure sores. I can definitely relate to Patrick's plight. I've had three separate muscle flaps done. All three were severe stage 4 sores and all three ended up with an infection in the bone which required an additional surgery to clean out the infection and a log course of IV antibiotics just to get to the point of being able to have the surgery. One infection resulted in me going into septic shock in the ER and more than likely narrowly (and more luck than anything) avoiding death. When you deteriorate to the point of on open stage 4 wound its a matter of when you get an infection, not if. Throughout all of this, I've tried all of the "magic pills" that the doctors offered (e.g., wound vac, creams, gels, etc.). Most of these are insurance protocols to try to heal it up in order to avoid the inevitable. I can't speak for other patients, but none of that worked for me. It just prolonged the inevitable. While the surgery, and subsequent recovery, is a long miserable process, there is an end to the process and if done correctly, its a favorable end. If you have the surgery and follow the doctors orders to the letter you are healed in a few months. You just have to be diligent about the recovery process and will yourself through it. Laying around trying to heal this severe a wound otherwise is both physically and emotionally debilitating. There just doesn't seem like there is ever going to be an end to it and your whole life is at a stand still.

    All of my sore resulted from sleeping on an inadequate mattress. Over the years I've developed contractures which end up creating pressure points on the bony protrusions of your hip, knees and buttocks. No matter what I did I ended up with sores. The insurance didn't deem it medically necessary for me to have a proper sleeping surface until it was too late. This is an ongoing battle and one that ends up costing the patient their health and well-being. I am not willing to pay that price any longer and nobody should have to go through it. This is hard enough as it is without any more undue burdens. Eventually I bought a used Clinitron online to help prevent any more breakdowns. Throughout all of these issues, It came to my attention that I'm clearly not the only one having issues with both sores and the ability to get the proper equipment to treat them. To that end I've set up a non-profit organization where I acquire many types of sleeping surfaces (e.g., air-fluidized beds, alternating air mattresses, gel overlays, etc.) and with the help a a medical equipment company who specializes in this type of equipment, cleans and refurbishes the equipment and donates to patients in need who otherwise don't have the means to get it. If anyone is in any stage of recovery from a wound and is in need of a piece of equipment. please feel free to contact me I will work with you to get you what you need.

    In the mean time, you need to try to convey to your partner that it is of paramount importance to have the sore taken care of as soon as possible. The alternative is not going to be acceptable to anybody. There are others of us out here who have gone through it and made a full recovery. It may not seem like it but it's worth it.

  7. #27
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    I would consider it... but I know Don would not... He's firmly established in Colorado...


    Quote Originally Posted by Rook98006 View Post
    To the OP...I'll defend him this once. High powered antibiotics can alter a persons judgement if he is taking any.

    Have you considered relocating the both of you to Chicago full time?

  8. #28
    Senior Member darty's Avatar
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    I remember back in rehab so many years ago they stressed that you should never get a pressure sore. Well all of us know that it is almost impossible. Anyone who sits for years and years is going to have a problem sooner or later. Quads have a tougher time moving and relieving pressure and I don't care what you sit on if you sit long enough it will happen to you. I am going on 37 years and have had my share of skin issues some more serious than others. There is no one perfect solution for everyone but it seams to me in this day and age with full time wheelchair users living longer there should be more systems in place to avoid them from day one.
    ^^(A)^^

  9. #29
    Quote Originally Posted by ergvepeog View Post
    I would consider it... but I know Don would not... He's firmly established in Colorado...
    if he is firmly in colorado then something needs to change for him to be able to be off the wound either you take a leave of absence from work or he move to chicago temporarily. as if left alone could and will eventually kill him.
    T6 Incomplete due to a Spinal cord infarction July 2009

  10. #30
    Please look into this: http://www.acelity.com/products/graftjacket-xpress
    I fooled around with a stage 4 wound, wound vac, infection, etc for 7 months and I stayed off it. I had a wound big enough to put a film canister in (crap, I'm old, they don't use film anymore), with tunnels. Three weeks after I did the graf jacket express I was up and rolling again.
    You or the local VA can get hold of Lauire Kruger at the Orlando VA, she did the procedure. If you PM me I'll give you her number.
    Oh yeah, I'm 70 and a stubborn old f#&%$, too.

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