LE in the summer

MinusTwo

LE in the summer - Great article from CURE reprinted courtesy of WearEase. I know I've posted on multiple LE threads, but this one is really worth reading.

https://www.curetoday.com/community/bonnie-annis/2...

Mavericksmom

Good article. My left arm is twice the size of my right arm due to removal of 24 lymphnodes (entire fat pad) in 2003. My sentinel node dissection failed so my breast surgeon reverted to the old standard of removing the entire fat pad. The lymphedema occurred immediately after my surgery. I was treated by over 5 therapists since then and wore custom made garments for years. I stopped because they no longer fit properly and they were made in Germany, so took quite some time going back and forth to get a correct fit.

After my 2019 mastectomy, I went to see a new therapist. First appointment was great, and I was psychologically ready to start wearing garments again. At my second appointment, I was psyched for the lymph drainage and wrapping, but in the first five minutes the therapist gave me the bad news. Medicare won't pay for it! I can't afford to pay for them outright. I have a pretty good Medicare Advantage plan through my husband's retirement from a major pharmaceutical company, but they only cover what Medicare covers. She told me there are grants available with funding but one must re-apply every six months or so when new garments are needed. I said "thanks, but no thanks." I went back to the way I dealt with this the past 12 years, wearing long sleeve shirts all year round to hide my hideous arm. I found some super light weight, button down blouses by St Johns Bay, at J.C. Penneys. I get them a size larger than I need so there is room for my arms. They are comfortable and have some pretty prints.

I have not had any infections and I even had total reverse shoulder replacements in both shoulders, and it didn't make the lymphedema worse. My orthopedic surgeon did wrap it during the surgery and for awhile afterwards.

There used to be a fabulous site called "Lymphedema People." The originator passed away, I believe, and the site was shut down years ago. Really sad because they had all the latest news on lymphedema.

I don't think other than the lymph node transplants, there is anything that can be done for lymphedema and honestly, I don't think I would ever go back to see a therapist again. I learned to live with it. I wouldn't do anything dumb, but I definitely do not pamper myself. If I can move or lift something safely, I do it. I am more concerned about my replaced joints than lymphedema.

It makes me very happy knowing that they rarely, if ever, take more than 4 lymph nodes even with "failed" sentinel node dissection now. That is a huge step in the right direction as prevention is the BEST way to deal with lymphedema.

HersheyKiss

I'm debating whether I need an LE therapist or not. I was periodically seeing someone pre-coronavirus and paying for treatment out-of-pocket. Between wearing sleeves and doing my exercises, I managed quite well all by myself during lockdown. It was useful in the beginning to have a knowledgeable therapist measure and treat me, but I now can do a lot of care on my own.

MinusTwo

Hershey - I do the same. I went regularly when I was first diagnosed. Then once every 6 months. Then checked in once a year for a couple of refresher treatments & educaton. Hopefully I'll be able to keep trucking along by myself. I do have an Rx for antibiotics that I carry when I travel away from my docs in case I get a cut or a bug bit . But who's traveling now anyway....