Updates

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  Kit Minden: I don't trust them much either. Funding and education shortages... too few workers who know too little. Here's hoping for the new clinic. 

  • July 12, 2012

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    Patty Smith Just found out about 1 hour ago that I'm being admitted to the IN-PATIENT portion of the Long Term Care Facility in the...  

    • July 13, 2012
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  Kit Minden: It sounds to me like the philosophy at this hospital is out of whack! Can you go to a different group of clinicians?

  • July 10, 2012

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    Patty Smith Been to many different places and hospitals. Now trying to get into LifeCare Hospital in their...  

    • July 11, 2012
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  Patty Smith Kit, I'm glad you like the post.  I've gotten to the place that I'm very, very tired of the supposed "experts" telling me what I'm doing wrong.  Why don't they just fix it instead?  I've gone hither and yon, with no results.  I'm going on 9 months...  moreKit, I'm glad you like the post.  I've gotten to the place that I'm very, very tired of the supposed "experts" telling me what I'm doing wrong.  Why don't they just fix it instead?  I've gone hither and yon, with no results.  I'm going on 9 months now (next week!) with the draining legs.  The only response I've gotten is to RETURN to the vascular surgeon who messed up on the first place.  I don't think so!  

  • April 23, 2012
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  Kit Minden: What about those ideas of the staff person? The Norton School or Klose Training? 

  • April 23, 2012
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  Kit Minden: Mine is not from cancer, Patty. Mine is multiple sclerosis. So my lymphedema is systemic. Whole body and about 65 pounds of it. Frustrating. 
  
  Is there a cancer center near you? Often have great lymphedema support at those. Glad you got away from that...  moreMine is not from cancer, Patty. Mine is multiple sclerosis. So my lymphedema is systemic. Whole body and about 65 pounds of it. Frustrating. 
  
  Is there a cancer center near you? Often have great lymphedema support at those. Glad you got away from that jerk of a doctor. We need to find you some better help. What city are you near?   

  • April 23, 2012
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  Patty Smith Thanks for replying.  I live in SW PA. The Vascular Surgeon supposedly IS a Wound Care Specialist; at least he passes himself off as one!  I saw a Lymphedema Therapist; she told me, after burning my skin 2 times with Biatin pads that there is...  moreThanks for replying.  I live in SW PA. The Vascular Surgeon supposedly IS a Wound Care Specialist; at least he passes himself off as one!  I saw a Lymphedema Therapist; she told me, after burning my skin 2 times with Biatin pads that there is nothing more she can do. Now I've got infection and I'm seeing the Chief of Wound Care in a local hospital tomorrow.  Diapers sound good, but I can't take anymore of these bandages and tape--it's been close to NINE months now!  The good skin is coming off with the tape.  I carry clean wrappings where ever I go.  The smell is awful and I can't take the pain anymore!!  This needs STOPPED now!  I need HELP!!  Anyone have a solution???????????  PLEASE HELP!!!!!
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  • April 19, 2012

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    Kit Minden I couldn't do the bandaging either. My therapist got me some compression stockings by Juzo. They are great. Farrow gave me lower leg Farrow wraps - they're wonderful. Still need a pump. I don't have insurance so it's all rather time consuming. I do have...  moreI couldn't do the bandaging either. My therapist got me some compression stockings by Juzo. They are great. Farrow gave me lower leg Farrow wraps - they're wonderful. Still need a pump. I don't have insurance so it's all rather time consuming. I do have blisters on my elbow but have them wrapped and it's getting better.  

    • April 19, 2012
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    Kit Minden Oh, my therapist is in a cancer center though I did not have cancer, they see me. Do you have a cancer center nearby you can call?

    • April 19, 2012
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    Staff Certified Lymphedema Therapist Patty, I am frustrated for you! Please check out the NortonSchool web site or even Klose Training for a list of therapists in your area and make some phone calls. The NLN has a garment fund that you can apply to for garments. Your therapist needs to...  morePatty, I am frustrated for you! Please check out the NortonSchool web site or even Klose Training for a list of therapists in your area and make some phone calls. The NLN has a garment fund that you can apply to for garments. Your therapist needs to help you with that process. There is no reason that you should be suffering this way. Keep my posted!  

    • April 20, 2012
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    Patty Smith Totally agree that I should NOT be suffering like this, but I've learned that many of the hospital staff today are into needing the job and seem to want to do whatever it takes to keep it. Was in a Pittsburgh Hospital yesterday and signed myself out...  moreTotally agree that I should NOT be suffering like this, but I've learned that many of the hospital staff today are into needing the job and seem to want to do whatever it takes to keep it. Was in a Pittsburgh Hospital yesterday and signed myself out AMA. They kept injecting one drug after another into me without any concern about allergies and side effects. AFTER they managed to cause severe pain to the legs again, one ER doctor gave me 2 Vicodin. When that didn't work within 20 minutes, he gave me a shot of a drug that made me sleepy. Then that shot didn't work after 15 minutes, he gave me a second shot. I told him it worked just to have him let me alone. Don't know where to go from here. Very...    less

    • April 21, 2012
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  Patty Smith has just joined the community. Say hello!

  • April 18, 2012

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    Lymphedema Community Staff Welcome!

    • April 18, 2012
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    Patty Smith Can anyone help me?? I am desperate! Both legs have been draining for 8 months, and I must keep them bandaged because the lymph runs down my legs. My insurance will not pay for the dressings and I've already maxed out 1 credit card paying for the...  moreCan anyone help me?? I am desperate! Both legs have been draining for 8 months, and I must keep them bandaged because the lymph runs down my legs. My insurance will not pay for the dressings and I've already maxed out 1 credit card paying for the supplies and working on #2. This is 24/7! The pain is excruciating. I've seen a vascular surgeon who "debreeded" one ulcer and made it worse, then said he would see me in TWO months! The ulcers have gotten huge, taking up at leasat half legs. After wanting me in his office every week for several months, my PCP decided to drop me because I've become "too complicated of a patient!" He said that I've had Lymphedema since he's known me. Does he think it...    less

    • April 18, 2012
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    Staff Certified Lymphedema Therapist Hi Patty, I am so sorry that you are struggling so much with your lymphedema. Where do you live? I would suggest finding a lymphedema therapist in your area (you can go onto the Norton School web site and ask for a therapist referral) that has wound...  moreHi Patty, I am so sorry that you are struggling so much with your lymphedema. Where do you live? I would suggest finding a lymphedema therapist in your area (you can go onto the Norton School web site and ask for a therapist referral) that has wound care experience. You can also look for a Wound Care Center in your area, not just a vascular surgeon. As for catching drainage under bandages, baby diapers work great! They are cost effective and wick the moisture away from your skin so as not to spread any germs. Just cut away the elastic sides, but don't expose the inner material that gels up. Good luck, and let me know if you need any more support!  less

    • April 19, 2012
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