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Thread: My pressure sore nightmare

  1. #1

    My pressure sore nightmare

    It has almost killed me! I just got out of ICU yesterday and still hospitalized. Why? Sepsis! I got to the ER just in time and had never felt closer to death, I guess because I was. I'm very angry given I also have osteomylitis too.


    So this was my first pressure sore in 10 years and I have had a nightmare experience as if the whole deal isn't bad enough! At first things seemed to be healing great with the wound vac but my home health nurse was concerned it wasn't draining enough and being one who loved and did alot of wound care, had never heard of this wound vac. You probably know where I'm going. ..it wasn't a KCI. It was a Modello, a piece of crap that has highly disrupted my life for who knows how long along with my Dr. First we were fighting with the rep to get 3 tubing a week. He kept using some double lumen hose BS as if it wouldn't grow bacteria. My home health nurse was fighting but my Dr office wouldn't. Nor would they take care of getting a KCI and my nurse finally got it ordegood. She also called another Wound Dr she liked to get my records moved ASAP.By the time insurance approved it and I got it, too late. The crappy one had leaked without alarming at night. We did wet to dry until the KCI came the next day. The nurse felt it was important to get me on abx quickly. There was no on call Dr for the Wound Center. Went in on Monday and he wasn't bothered enough even though it didn't look good. Prescribed Dakins but it had to be ordered. They could have just given me the recipe. Used it and then changed to wound vac after a week. My new Dr appointment was set for the 6th and I went back to the original Dr for debridement. Too late, he suspected osteomylitis and infection due to the amount of drainage. Now he wants to start IV abx at home and continue with Dakins. Also scheduled appointment with Infectious Disease Dr the next day and plastic surgeon to discuss flap the following day. While in his office, I was running 99? but no concern. Within 4 hours I was in the ER with 102? dehydrated,hurtling like hell, extremely low blood pressure and honestly thought I was dying. The started IV fluids and abx immediately.


    Since then my blood pressures have went from one extreme to the next, had 2 units of blood, started potassium and have been in so much pain. The Dakins dressings hurt really bad and were causing dysreflexia so it has been changed to Aqua Cell rope? The drainage has calmed down significantly. No fever in 3 days, getting Vanc aand Zosin? Culture is only showing staph and strep aureus so far. CT showed osteomylitis. I'm happy with my Dr's except for the wound Dr which I said I didn't want. He still visited anyways. I told him how I feel about things mentioned here. I included the fact some nurse follows him speaking over everything he has ever suggested since day one. He says it's "a collaborative decision"...so why are you titled the Dr?


    Another thing that bugs me is in all wound centers here, their are multiple Dr's but each only work one day a week. Not very comforting. I feel like not only did I fall between the crack but I was a guinea pig for this new product. My hubby is ready to hurt somebody. I hope hes really at home depressed with our kitties. Poor thing.

    Last edited by quad79; 07-03-2016 at 02:25 AM.

  2. #2
    Senior Member lynnifer's Avatar
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    Well, we're Vanco sisters. I get my PICC on Monday. Glad they caught it and you survived the sepsis! We really have to take control and be our own advocates.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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

  3. #3
    Quote Originally Posted by lynnifer View Post
    Well, we're Vanco sisters. I get my PICC on Monday. Glad they caught it and you survived the sepsis! We really have to take control and be our own advocates.
    Yeah I know and I've learned to do a good job at that. This time I felt totally out of control. No matter what this Dr was not listening. No other Dr in that practice would see me. I couldn't get in anywhere else. I was afraid of further tunneling if we did no wound vac and just wet to dry. Not to mention home health has to take orders from the Dr. The ER says to take it up with the Dr that has been treating it. Ugh! I've never felt so violated.

    On top of that, I'd been sitting on a gel jay 2 since my injury(not the same on all10 years of course) and nobody had mentioned pressure mapping as my body changed, no rehabs and no seating specialist. I'd never heard of them. My booty turned pretty bony and now i know I have to go with roho. Atleast I know now for sure I do awesome pressure shifts to get full bottom off when doing each side. It still bugs the rap out of me as to how i got a deep tissue injury. I'm frustrated I have(of course) since I've tried so damn hard to take special care there and then someone else doesn't give a crap either.

    Sorry lynnifer, I know you've been through it with ulcers and osteo for an incredibly long time. I'd give you a huge hug if I could!

  4. #4
    I don't know this particular wound vac product but this is a common problem with pressure ulcers. A deep tissue injury is from the pressure of your bones. Pressure injuries start from the inside out, not the outside in as we used to think. Unless very superficial. And if it isn't healing then osteo is usuly the culprit. The wound vac only works on no infected wounds if it works. It sounds like you are on the right track.CWO

  5. #5
    Senior Member darty's Avatar
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    Sorry you have to go through this I have a nightmare story of my own that I wont bore you with. Some of the things I have learned are:

    Doctors can not fix everything and quality of life is what means the most to me.

    Like they told me in Rehab so many moons ago "you should never get a pressure sore" "there is no reason to ever get one". But anyone who lives from a wheelchair knows this is virtually impossible. Some diligent paras with strong arms and walking SCI's have managed to do it but it's not the normal reality for most of us.

    Most Doctors, surgeons included don't know a thing about SCI. They are guessing at best. They sometimes look at me like I'm a unicorn. They cannot treat our specific set of problems like they treat "normal/AB" patients. The smart/caring ones will listen to you and learn from you before they treat you but they are few and hard to find.

    Wound clinics are often run or staffed by part time "wound care Doctors" where an Orthopedic specialist and board certified plastic surgeon team would be preferable. But most plastic surgeons are too busy getting rich doing boob jobs and face lifts to properly treat a pressure ulcer.

    Wound clinics are a good place to get infection. They may try to be sterile but no matter how hard they try there is cross contamination. For instance they may change gloves and even change gowns and masks between patients but they bring the same pen and clipboard from room to room and everybody touches that. Don't even get me started on Hospitals they are a cesspool of infection.

    The wound vac and all these high tech sterile dressings have a place but they are not a cure all. They are expensive and will only help a small number of patients who have the optimum situation. You need a specialized diet high in protein with supplements, no pressure on the area, sterile and consistent dressing changes, lots of fluids, increased blood flow to the area and most of all you need to be healthy which by the time we get a sore we are not.

    Pressure re leaving mattresses, cushions and pressure mapping are all good things but are not a cure all. They are expensive, insurance balks at paying for them and our body's change from year to year and are not assessed often enough. Our posture changes and we atrophy as we age so it is very difficult to say how long a pressure map evaluation is good for.

    During my last bout with Osteo I was told by one of the top ID Docs in the country that we are almost out of useful antibiotics and that Osteo is really never cured. The IV drugs they use to fight Osteo can knock it out but it lays dormant in your bones and can return at any time.

    Last but not least we are a minority. There are only about 250,000 to 300,000 of us in the United States so our injury is not a priority. Fortunately safety features on cars and other vehicles have improved and prevention is much more emphasized than it ever was. The car I was injured in was a big hunk of Detroit steel with only a lap belt for protection. No airbags, poor breaking and no crumple zones. When I was in Rehab most injury's were either divers or drivers but now we have to add gun shot victims to the list.

    I wish you the best and I hope this doesn't depress you in any way! This is just my .02
    ^^(A)^^

  6. #6
    Like you and others I had a wound nightmare aided and abetted by ''professionals.'' If you can afford it skip the dakins and try MicrocynAH wound care spray,$18 free prime delivery on Amazon.I had great success using it.It cleared out MRSA and the neon green pseudomonas discharge as well.Obviously it won't help the osteo but it can fight off a lot the bugs that infect wounds.

  7. #7
    Been there. You really do have to be your own advocate, but even then, luck plays a huge part in this paralysis game. If you end up having surgery, make sure that they grind down any bony prominences.

  8. #8
    Quote Originally Posted by ouch View Post
    Been there. You really do have to be your own advocate, but even then, luck plays a huge part in this paralysis game. If you end up having surgery, make sure that they grind down any bony prominences.
    This is outdated and potentially dangerous advice. Routine ischiectomies, etc. are no longer recommended, as in the long run they increase your risks for osteomyelitis and hematoma formation under the flap, and can cause serious pelvic obliquities that can lead to additional pressure ulcers in your future.

    (KLD)

  9. #9
    Senior Member lynnifer's Avatar
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    Dakins solution is old school too, isn't it? Like bleach?

    They have old school thinking in Toronto too in that they like to use betadine on everything .. but I'd rather that the 'burning' Dakins!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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

  10. #10
    been there done that glad they finally listened and you went to the ER and survived sepsis. that's rough. i can finally say after 2 years my sore has closed completely for now.
    T6 Incomplete due to a Spinal cord infarction July 2009

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