So not sure why I got the dealt the card that said, "You get lymphedema after hysterectomy for uterine cancer." Maybe God wants me to change the health insurance industry. The health industry caused my lymphedema and now they don't want to help me or the 3 million others that get it - either after prostrate, breast or cancer surgeries or born with it – we are out in the cold. Most insurance companies don't even pay for the exhorbitant compression garments we are destined to wear. But there are microsurgeries available to help those of us with this terrible condition and I am determined to get fixed.
I received this email today – hopefully California is next:
Last week Louisiana passed a state lymphedema treatment mandate!
Like the North Carolina and Virginia mandates already in effect, this law will require that all private insurance policies sold in that state cover compression supplies. The Louisiana bill was passed unanimously by both its state House and Senate, and now all that remains is for the bill to be signed into law by the Governor. I’ll be in touch with more details when that occurs.
How did this happen? It’s all thanks to one amazing advocate on our Louisiana State Team.
She made change happen and so can you!
We need your help to pass the Lymphedema Treatment Act so that patients everywhere, including Medicare beneficiaries who can’t be helped by state mandates, have coverage for their compression supplies. If your Representative is not yet amongst our cosponsors, please continue to contact his or her office.
I urge you to call your Rep’s DC office, this week, and speak to the Health Aide. When you do, ask for his or her direct email address so that you can send this information about the bill. A link to look up the phone number, as well as lots of helpful tips on what to say and what questions to expect, can be found in our Advocacy Handbook.
I can’t stress enough the importance of you making this phone call. Personal contact is the key. We need your Rep as a cosponsor and you have the power to make that happen.
Thank you in advance and Happy Memorial Day!
Founder and Executive Director
Lymphedema Advocacy Group
I am looking forward to getting my first surgery done to remove the lymphatic proteins in my right leg. My fundraising is coming along great. I have tremendous support from my friends. I have gotten $11,347 to date. My friend Elizabeth Johnson is doing a dressage clinic June 21st with all proceeds going to my surgery fund!!!! Rebecca Cook is donating breedings from her stallion owners plus auctioning off her young foal!! Thanks for everyone that has supported me in donations, prayers and by sending letters to their congressman to get them to support the Lymphedema Treatment Act.
So far my goal of getting lymphedema surgery is coming together. I have lots of help from my many friends. Already donations amount to over $8,500 in my first month of fundraises. I will be checking in with Dr. Granzow’s team to see if they have a date for my first surgery: suction-assisted protein lipectomy. The second surgery will be about 12 months later and will be a lymph node transfer. It is pretty excited to know I can get better. For more info on Dr. Granzow please visit http://www.lymphedemasurgeon.com/lymphedema-los-angeles/ and thanks again for your interest an help.
In 2011, one year later after my hysterectomy for uterine cancer, I developed secondary lymphedema in my right leg and has now also progressed to my left leg. I was warned by a friend who had the same surgery to look out for this condition which can develop years after surgery. The surgeon dissected my lymph nodes to look for cancer and this can cause damage to the lymphatic system. I have to wear compression garments 24/7 to keep from swelling up like a fat tick. These garments need to be replaced every six months and my health insurance doesn't cover the $900 for the Jobst pantyhose or the $1,800 Circaid garments I sleep in every night. Having this condition feels like I am dragging around 10 pounds of wet sand in my lower extremities.
I have tried all kinds of things to help reverse the swelling. I did a drug trial with Stanford and Dr. Rockson for 6 months. The trial included taking tissue samples out of both my legs in the beginning of the trial and also at the end. But the drug didn't help me and while in the trial the lymphedema spread to my left leg. Which meant they didn't need to take more tissue samples out of my legs again to see if it worked.
I also tried to rounds of stem cells. I had stem cells derived from my own fat and had the stem cells put back in my system via IV. The first time I felt some improvement in my right foot. I did a second treatment but so far that hasn't fixed my lymphatic system.
Now I have found a surgeon in Los Angeles that is treating this terrible condition. My first surgery to remove the lymphatic protein solids in my right leg will happen July 2014. The cost is $50,000 and my husband Steve and I have $15,000 of the funds and currently have a gofundme.com website to help raise the rest of the money.