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Jane K

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Everything posted by Jane K

  1. Jane K

    Contact dermatitis

    Hi, I'm am looking to see how other folks have handled contact dermatitis issues. As a through knee amp my socket and silicone liner end on my upper thigh. Over the last several weeks I have had a rash that runs along the top of the silicone liner and shell. Initially I tried a cortisone cream and using non stick pads to treat and protect the area. Having not much luck improving the problem my Primary Doc. gave me a prescription for a steroid cream. It's helping a bit but not completely. I am set to see her on Wednesday but I was hoping other amps have had this problem and could offer their thoughts sooner. My legs folks suggest I may need to replace the silicone liner as they be "contaminated and not easily cleanable". Besides the obvious cost it seems like there should be a mean to clean the liners without damaging the material. Would the shell also need to be treated? How or with what? If I do buy new liners how do I avoid contaminating them? I do have an assortment of older sleeves that I may pull out and try just to see if they help. Price is right too! Any thoughts or suggestions would be appreciated. Jane
  2. Jane K

    Hello There

    Hi Johnny, Any update on a time frame that a email blast might happen? Is this a question for you or some one else? Thanks, Jane
  3. Jane K

    ossur z liner

    Hi Everyone, I'm in my second week using the Ossur Iceross 5 ring liner with a light sock under and in a new socket and so far so good! I had been plagued with scar breakdown, infection, yadaa, yadaa.... since Christmas. The last round kept me out of a leg for a month. I so wish my crutches were wood so I could burn at least one pair as a sign of freedom from the retched things. When the wounds were being so stubborn to heal my wound care person gave me a goop called "Medihoney". The stuff helped work off the dead tissue allowing the new stuff to form. It has worked great and helped me to avoid the Plastic Surgeon office that was next on my wound care person's suggestions. The stuff is a New Zealand product made in Canada. I'm going on line later to order a tube just in case the problem comes back. I'm off to the gym to further test the liner and socket. I also can show off my new socket colors. I went to a "smoke shop" type store were amongst other things they had a great collector of colorful tie dye shirts. Usually the resin coating mute’s colors bur in this case they popped. Bright yellow, vibrant pink blue and green are great. Happy colors and certainly no trying to hide what it is. Why should I. Like my glasses it is part of the package. Have a great day all. Jane
  4. Jane K

    Hello There

    Hi Again to All, Since the site was down for so long folks may not know it has resumed. Would it be appropriate to have a email notification sent to members on record? Could it logistically be done by those masterfull computer folks? Jane
  5. Jane K

    Hello There

    Hi All, I'm very glad to see the forum back up and running! It is a wonderful means to see what other folks have for ideas, laughs, questions, life and everything else under the sun. Thanks again, Jane
  6. Jane K

    Contact dermatitis

    Hi Everyone, Thanks for your thoughts! Can you name what bath soap brand has worked for you that hasn't bothered your skin? Jane PS - Completely unrelated point - but today, November 6th is the USA Election Day! Get out and vote! Jane
  7. Jane K

    I Am Still Alive!!

    Hi Cheryl, So sorry to hear about your side trip to rehap. I am glad to hear you are on the wound vac in that it can help heal so well. There are some very new equipment/techniques in their products. I say this as my best friend is a KSI Wound Vac RN / Support person here in the NH and northern tier MA area. If you have questions the folks who are treating you are not answering I can relay them to her. Best of luck, Jane
  8. Jane K

    Contact dermatitis

    Hi Ann, What is odd in this case is these liners are several months old. I always wash them with the same soap - Ajax dish soap - and I've never had a problem like this before. I do swim 3 to 4 times a week and I almost wonder if I picked up some sort of rash from the water or perhaps the step platform where I scoot myself up onto, then get up on the chair and up onto my crutches. I did try not swimming for a few days but with no evident calming of the rash. Thanks for your input. I'll mention your tactic to my Doc when I see her on Wed. Have a great weekend! Jane
  9. Jane K

    blisters please help??

    Hi Char I've had great luck with using a non-adherent pad over the most sensitive scars. Under the pad I use a product made by Monistate that is designed to avoid chaffing. In my situation it isn't the scars from the amp but earlier sites that have been rehashed over in multiple visits to ER. Each new socket (I'm a through knee amp since Aug '10, version 4 socket) has tested my skin and its tolerance but if I use the non stick pad I don't have scar breakdown, time out of the leg, unable to swim, etc, etc.... I've tried not using the pad but for me it has cost me pain and time out of my leg. I can't say it will work for you but just an idea. Best of luck! Jane
  10. Jane K

    New to forum

    Hi Steve & Dave, Welcome to you both. It sounds like you both have good attitudes which helps so much. My issue is much less involved than you two as I had a bum knee and not a hip/pelvis leg problem. But I can so well relate to the feeling that now - post surgury, recovery, pt etc- life can move on. The chronic huge pain of a failing body part takes over your life. Without the pain you can live again! My amp timing was mine to choose. To not do an amp at all wasn't a choice. I've had some folks look at me like I'm nuts to have had the operation. It is unfortunate that most folks who haven't themselves expierenced horrible chronic pain, infections etc etc can't understand our rational. I will say my close friends, who saw how I existed for 6 years, understood very well, and were very supporitive. Good luck going forward to you both. Jane
  11. Jane K

    Newbie facing hemipelvectomy

    Hi Steve, Welcome to this group. You have a lot on your plate. The previous words encouraging you to take one moment at a time are so important. What your facing can be overwhelming if taken in all at once. The idea to keep a journal is really good. Pictures too. I didn't and at some points regret not do so. Keeping a balanced perspective helps a lot. Best of luck. Jane
  12. Jane K

    Everyones story

    Hi Cathie, Welcome to the group. Have you tried using a ski pole rather than a cane? It can offer some balance - and piece of mind - but doesn't seem quite so cumbersome. A hikers type pole can also be adjustable which is helpful on varying terrain. I keep mine by the front door when I'm heading outside into the yard or woods out back. I've also spent a lot of time in a doorway trying to balance on one foot. Mind you I never really tried this when I had both feet so maybe good balance never was my strength to begin with. My short story how I found this group was from Judy B - the women who began this thread way back ago. Through a high school class mate of my sister I connected with Judy and heard how she was an elective below knee amputee. She had been born with a gimp foot, pain, inability to function as she wanted etc she opted to have an amputation. She saw the amputation not as an end but a chance for a new beginning. Back in the summer of 2010 I wanted a new beginning too. In Sept 2004 I had an simple orthoscopic surgery on my right knee that went to hell. Complications not correctly treated caused infections, septic, pneumonia, etc. Thrown in the mix a April 2005 fall snapped my right knee petella tentdion. Patched but never the same my knee continued to deteriorate. My Dartmouth surgeon made it clear in Aug 2008 that a fused knee or an amputation were my options should another infection occur. Docs at Mass General concurred. In October 2008 I went to Dartmouth for an Friday office visit and didn't leave. Surgery #6 was done to rid more infection. Going in I begged my Doc to save my leg. His words from the August appointment hung over me. He did what he could and I woke up with ten toes. The next two years were spent using crutches, a wheel chair and using the lovely drop hindge brace locked out straight full time. I was functioning, grateful I had a job I could do, but not really living. Living with the leg locked out gave me a real taste of what a fused leg would be like. Frustration, on going and increasing pain I hit my wall in July 2010. I wanted more or at least a chance for more. I was then 49 and I wanted the next half of my life to be great. My through knee amp was done in Aug 2010 and while there have been a few bumps along the way I am living again. None of us always get to always choose what happens in life but this group sure shows what a good attitude can do to help along the way. Jane
  13. Jane K

    I am the new guy

    7/12/2012 Hi Doug, Welcome. The earlier posts offered some great advise. Not mentioned in this conversation is a product called "Chaffing Relief Powder Gel" by Monistat I faithfully use it every day before the liner goes on. In addition I use a small square of a non stick telfa pad over a particularity troublesome section of scars at the end of my femur. Each new socket (on my third in 2yrs) I have tried not using a telfa pad the pre amp scars reopen. Time out of the socket, horrible crutches, not swimming etc.... I'll keep using the non stick pad. The sweating will get better too. I swore I would be carrying around a paper towel roll forever but my leg doesn't sweat at all anymore. If I only could get the rest of my body to do the same! Jane
  14. Jane K

    Hello from Pennsylvania

    Hi Doug, Welcome to the club! I from NH and joined in August 2010 as a right through knee amp. The thoughts, advise and just great camaraderie from so many folks from around the world is amazing. Some one, some where, probably has ideas or experiences that can help with a situation, concern or can just make you laugh. Any of the above is worth so much. Jane
  15. Hi All, Mick's input about getting a knee that works helped me so much when I was new to this club. It is so easy to think the big bucks equipment will give better function but I found there can be merit in using established tried and true technology. At least that is what I have found after trying out different knees and feet. I do plan to check what is available next year when the warranty expires on my Endolite KX06 knee but a high tech knee and its accompanying high price tag, will have to offer a big improvement to upgrade from what already works for me.
  16. Hi Joe, Your outline how to get what you need is great! Persistence and pleasantness can work wonders much of the time. I've learned to keep notes who I spoke to, their full name (way to many Sues', Bills' Steven etc in the world) and direct line and email (if I can). I just return from my first cruise this past Thursday and found your tactics are so right on in everyday life. Gale force winds and all (NJ to Bermuda) the trip was great fun and something I hope to do again. The statement for on board charges was extensive as I found myself to be very thirsty on this trip. Royal Caribbean policy is that any disputes should be addressed on board by 6AM the morning of departure. I didn't see the summary until I left my cabin for breakfast 8AM on the last day. A quick scan showed some charges that looked amiss but there was not time to do anything about it on board. Once home I checked all pockets for receipts and still couldn't match three bar charges totaling $59. Calling the company billing department yesterday I explained getting the summary at the last minute and the three questionable charges. After some more conversation I was offered a compromise that the company would waive half the charges and I would pay the difference. I would not take the offer since I didn't think any of the three charges were mine. I persisted and asked to have the company receipts pulled. Their customer service rep. was pleasant but reluctant to do this but I stood firm that I wouldn't pay for what I didn't think I drank. She explained it would be 5 to 7 business day before she expected a response from the ship. However in just under three hours she called back yesterday with details. All turned out to be nothing that I ordered - though the rum & orange juice drink sounded very tasty - and a full refund will be credited to my bill. The beverage bill was still substantial but it was at least just what I enjoyed. My knee & foot warranties will be up in Nov. 2013 and these tactics will be so important in working with the leg and the insurance company. My Endolite knee may still be my best fit but I plan to look over all options. Not being a newbie should help a lot in selecting what does work best. I think there is a saying out there - "a pinch of sugar can be better than a ton of something, something .... " - can't quite recall but the idea is there. Have a great day everyone! Jane
  17. Hi Kirk, Good for you in pursuing to get what works best for you! Just settling for what is okay will all to quickly become annoying because it isn't good enough. My leg can be upgraded at the end of next year if I understand the insurance jargon correctly. It will be interesting to see if any new technology can work for my leg needs. Time will tell. Enjoy your new parts. Sure sounds like you have had great success! Jane
  18. 3/23/2012 Congrats Johnny, What a wonderful anniversary to have achieved! May there be many, many more to come! Enjoy life! Jane
  19. Hi Everyone, I'm looking for suggestions how to make a silicone liner surface rough. This is an odd question I realize but what I'm trying to do is to be able to use a different type of flipper on my short leg. The flipper wraps around the leg with wide rubber straps. If I can make the sleeve surface rough / gritty I could use the flipper over the liner and not irritate sensitive leg points. The flippers are something I found on line from a company in Australia. The let me have some power on my short leg rather than just kicking with no affect. I thought about trying something like cement glue or some type of super glue but rather than reinvent the wheel I wanted to put the question out to you all. Between everyone there is such a wealth of information to be found. Thanks for your input. Jane
  20. Hi Grum, Thanks for your idea. I'll keep it in mind if the suggestion I received from the fin company doesn't pan out. The idea suggested was to try wetsuit neoprene material under the fins. As it happens there is a small swim suit manufacture down the street from my office. I spoke today with the owner asking could I buy a leg sleeve alone. He's game to see what might work for me. I plan to stop by tomorrow and get a measurement done of my thigh so a sleeve can be stitched together. Nothing ventured...nothing gained! Jane
  21. Hi Cheryl & Cat, Reading the directions - way to easy and logical. Doing that takes all the fun out of the discovery. I was planning to write to Marc - the owner of the "Shinfin" company after I check with this site. Marc has been very helpful when I emailed him with questions before I bought the fins. However I figured this site might reach some one who has tinkered with fins before...went to the well of knowledge and experience. Worth a shot anyway! I'll email Marc this morning and see what he thinks. Thanks, Jane
  22. Jane K

    Swimming fins

    Hi Everyone, I wanted to know if anyone had tried a swimming fin called "Shinfin"? It is made differently from a traditional fin in that is straps to the ankle, calf or whatever one has to work with. The design relies on hip movement to best utilize its design. I meant to ask this question before I ordered it - which I did this morning - but any imput would be appreciated. The fins are made by a company in Australia and they are pricey - about $105 but they will be worth it if they work for me. I've always been a swimmer, but never bothered with fins before but feel my right leg kick lacks some of its old strength. Lacking a foot, calf and knee will do that to a stroke! Thanks for your thoughts. Have a great week! Jane
  23. Jane K

    Swimming fins

    Hi Ann & Mick Thanks for your input - you both have been very kind offering input & support in my time with this club. The new fins have not yet arrived but I will let you know how they work out. I mentioned them to my local PT folks and they seem receptive to hearing how they work for me. I'm always happy to be a guinea pig if it can help some one else. Why reinvent the wheel... Have a great weekend everyone! Jane
  24. Jane K


    Congrats and the best wishes moving forward! I'm also some one who decided an amp was the best course. Huge major decision but it opens up so many opportunities to live again. Upwards and onwards! Jane
  25. Hi, I'm hoping to get ideas how to either get up from a seated position - particularly a low seat - and to do the same in reverse. For reference I am a right leg through knee amputee since August 2010. This question sounds stupidly simple to accomplish but I have managed to add another factor to make it a bit more of a challenge. I have severely over strained my left leg quad muscle over this past month to the point that my leg buckled this past Saturday morning . I was very fortunate to be holding a door open for a fellow and was able to use a death grip to cling onto the door handle rather than going splat on the sidewalk. Having tested the splat technique, in multiple applications, I really haven't wanted to revisit that particular skill set. I will defend myself to say I'm not a klutz. I was overtired and running on fumes. My three siblings and I had been taking turns staying with my Mom since Nov 23 when a bad appendix was not correctly detected. Emergency surgery was performed on Thanksgiving Day but the poisons were not all cleaned out and she passed away on December 14th. The round the clock coverage - which we would all do again in a heart beat - and then the clean out of her home taxed my already aggravated remaining knee. I do present a very interesting picture with a right leg prosthetic and a ortho. velcro wrap around my left knee. Sorry for the rambling... but I am hoping to get pointers how to get up and down without aggravating a very tender left knee. I do use my arms when ever I can and I'm bringing my wheel chair to my office to reduce the constant up/down plight inherent in any office work. Your time and thoughts are appreciated. Thanks, Jane PS If you have pain in your gut and your Doc tries to tells you your just constipated run away fast!