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

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

    It's been a while since I've posted. My partner has a Stage 4 ulcer on his right upper buttock that has been there for about 2 months. I travel extensively for my career. He was injured in 2005 and for the first 11 years I was home and never traveled. Now I am gone for 5 days at a time and home for 2 days. Don is T11 Asia A. He can provide his own care but this skin issue has really affected his strength and endurance. He sees his wound care people 2 times a week and at those visits they change the dressings. He is unable to change them himself. They have him on a wound vac.

    They are asking him to consider having surgery for a flap and he is refusing. He refuses to stay out of his chair and refuses surgery if it means he will have to stay out of his chair.

    He is 74 years old. He essentially lives by himself for 5 days out of 7. The wound care is way beyond my expertise.

    Can someone live with a stage 4 wound without closing it? Or do they eventually require closing? He is very depressed about the situation and refuses any home nursing.

    Any help or thoughts would be greatly appreciated.

    Thanks.

    #2
    I'm a 68 yr. old T6/7 para 43 years post injury. I had a shearing wound started about 2 years ago from rubbing my bottom transferring over my wheels. First one ever. Went to a wound clinic and thought they had it closed but it was tunneling underneath and opened up again. After 6 more months of trying to get it to close they brought in a plastic surgeon. He thought it was a basic stitch together situation but would have to spend six weeks in a Clinitron bed in an assisted living facility.

    A few days before the surgery, it got infected with sepsis and was tunneling towards my femoral artery. They had to go in and clean out the infected area wait two weeks, laying in a clinitron bed in the hospital. After the infection cleared up, they did the surgery. Two weeks in the hospital then transferred to an assisted living facility for another 6 weeks in a clinitron bed 24/7. After they put me on a low air mattress and finally a regular bed getting me up for longer periods of time. I was then allowed to go home.

    I was terribly weak and had a hard time with transfers etc. Thank God for my wife as she was and is there for me when needed. I may have pushed it too much or there was still some infection left as the flap opened up again. We tried for another three of four months with the Plastic surgeon working on techniques to get it to close. I spent most of the day off my ass but to no avail.

    He went in a second time to see what was going on and found a pocket under the skin he could almost out his whole hand in. This time he did what they call a full rotational flap. Again there was the weeks in hospital and 8 weeks in assisted living in a Clinitron bed. Rather than stay in the facility for rehab, I went home and am rehabbing here. I have better equipment and better care at home than in a facility.

    About three weeks later I started getting delirious for some reason. It came and went. There happened to be a PT at my home and insisted my wife call 911 immediately. They rushed me to the ER and almost lost me as they could not get my blood pulse higher than 60/40. He had one more thing to try and was going to let me go if it didn't work; what they called a clean line. It's a line inserted into the jugular vein that goes to just above the heart for IV antibiotics. They thought I may have had pneunomia or a UTI. once I stabilized, they were going to send me home. I insisted on having a cat scan done on the abdomen before leaving. They found three abscesses surrounding my flap. So back on IV antibiotics and three weeks, in a clinitron, with drains to relieve the fluids from the abscesses. I came home three weeks ago with a picc line for two types of antibiotics for four to six weeks. The infection didn't reach the bone but we're treating it as though it has to be sure. I see the infection doc. this Friday for an update. I feel the infection was there all along and thats what made my fist flap fail.

    This all went down since last May. So is really new to me and like your partner I am very, very active. I'm sure the nurse and other will post that he has to stay off it. Stage four is pretty extensive and prone to infection. I've known guys who have lost their leg and hip due to a sore getting out of hand. Another kid I know had his tunnel up into his bladder to the point he was peeing out of his wound and didn't know it.

    My wife does all my wound care; it's not that difficult to do once you've learned what to do. He should definietly have home nursing if he is living alone. I know his frustration as I had the same attitude but eventually, they get worse and in my case infected.

    Two months is not that long. There are so many different remedies out there that are being used. But if he doesn't stay off it, they won't work. If he does decide on a flap make sure its by a Plastic Surgeon and not a general surgeon. Is he a veteran? If so he may be eligible for VA assistance.

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      #3
      OMG Patrick .. had no idea this was still an issue for you! Jeez!
      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

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        #4
        You have been through hell Patrick, good luck on completing healing. Original poster, please have your partner read Patrick's post.

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          #5
          Thank you Patrick... I don't know what to say except.. you are really lucky to be alive... I have begged Don to join Carecure and he refuses. I have tried to stress the severity of the situation. He is a vet and has seen them in the past for care bu he doesn't like them. He is gong back to them to be re mapped for a new cushion but they may not do that until he is stable. I will print out your response and give it to him. Thanks again.
          Sieg

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            #6
            Crap Pat wish I had checked in with you a bit more often.

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              #7
              Originally posted by ancientgimp View Post
              You have been through hell Patrick, good luck on completing healing. Original poster, please have your partner read Patrick's post.
              Yes. I would also like to say I'm sorry this was such an ordeal for you Patrick. Sending positive thoughts on a lasting recovery.

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                #8
                Thank you all. It has been rather daunting but trustfully this too shall pass. I'm not one to share on the woes in life cause we all have them. I've gotten up in my stander a few times and getting stronger. Once the picc line comes out, it's back in the gym with my trainer and on the Handcycle again.

                My main concern here is for the OP's partner. It's tough he has a P/S but he's in Denver where one of the best rehabs in the world is and is also a vet with VA available. We all know if we don't take care of a challenge; eventually the challenge will make sure it gets the attention it needs; good or bad.

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                  #9
                  Originally posted by ergvepeog View Post
                  They are asking him to consider having surgery for a flap and he is refusing. He refuses to stay out of his chair and refuses surgery if it means he will have to stay out of his chair.

                  Can someone live with a stage 4 wound without closing it?

                  Any help or thoughts would be greatly appreciated.

                  Thanks.
                  The odds are against him if he continues without treatment.
                  "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

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                    #10
                    It's a life or death decision.

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                      #11
                      Thanks everyone. Don had an appointment with his wound people this morning. The wound was closing and becoming more shallow but this morning it was worse. And yes... it is a life or death decision. I have tried to stress that to him. He MUST stay off the wound and out of his chair at the very least. The wound genesis was as a result of a skin staph infection with lesions on his lower extremities. He was on a course of Bactrim and they pretty much cleared up, except he was obsessed with the lesions and kept picking at them. The one on his right buttock he didn't pick at but when I looked at it a couple of months ago, it was tenting. I begged him to go to the wound people and he sat on the wound for a week before going in. By then they debrided it and it was already tunneling at that time... About the size of a quarter and about 2 cm deep. They tried packing it and that helped a little but now he is on a wound vac. This morning I noticed the appearance of a stage 1 area outside of the sacrum wound and inferior to the buttock wound... The skin is still intact but it doesn't look good. The wound care people sent him to the VA wheelchair clinic (where he got his chair and cushion) for emergency evaluation. I am home in Colorado Mondays and Tuesdays and Wednesday mornings and then I go to my job at the University of Chicago on Wednesday afternoons and work there Thursday, Friday, Saturday and Sunday. I teach at the Med School and do research there. I'm hoping that his wound is not infected but I suspect it is... His insurance outside the VA is good but if this goes south, which I think it is, then I think he should be evaluated at the VA. Yes... the odds are against him with or without treatment. I was his caregiver for 12 years after injury to the detriment of my profession and now that I have a really good faculty position, his condition is deteriorating because I am not there. While I was taking care of Don for those 12 years, he did really well...but his age and this wound/skin issue is really taking a toll. Thanks Patrick for sharing your story... it is appreciated more than you know.

                      Sieg

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                        #12
                        I think you need to consider taking FMLA. Move your husband out to you. There is Rehab Institute of Chicago for his SCI care and a world class plastic surgeon at University of Chicago if needed.

                        I suspect you have your reasons for having this living situation, but unless you are getting divorced, I think you are reaching a critical point....

                        his depression needs treatment, as this will worsen his chances of recovery.

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                          #13
                          I was also going to suggest that he needs a mental health evaluation. Does he have other issues beyond the SCI? a T11 doesn't usually require a caregiver.

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                            #14
                            it is only a matter of time that sepsis will occur and i mean it will occur at some point no matter how careful you are! take patrick's account as proof. patrick thank god you were on top of things!! i had a wound for about 4 years started out as a cyst turned into a pressure sore that tunneled and so on. i was in wound care for all of that time trying different things with home nursing and twice weekly visits to the hospital wound center to no avail. i know what he is going thru and most of us do as well. i have had 4 surgeries to try to close the wound the most recent was i think 3 or 4 years ago and was successful. went thru countless of rounds of both oral and IV antibiotics to treat both infection and sepsis which i ended up with before the last surgery. my point is he needs the surgery and he needs help with his depression. and he also needs the family support when your not around to push him to do the right thing.
                            T6 Incomplete due to a Spinal cord infarction July 2009

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                              #15
                              Google for "Dermawound." It's iodine plus sugar....the iodine prevents infection, and the sugar is a vasodilator It healed my stage 4 10 years ago. I took 2 years...but it worked. God knows that there's never been a trial that's followed spinal patients with pressure sores for two years LOL There's no paper I can show you.

                              Also...your partner. Get him a pair of braces....or a frame. Get him veriticle for one hour a day. Do these two things, and bingo you're in

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