Looks like progress is being made in lymphedema research. Hopefully current sufferers may see this in our lifetime but if not hopefully in future generations. Science Daily reports – Resolving a lymphatic riddle: Researchers to grow, for the first time, lymphatic cells in the lab
So now that it has been 9 months past the surgery I'm doing pretty good with the right leg that had the suction-assisted protein lipectomy surgery. The recovery was pretty gnarly having to have my awesome husband Steve put on the double layered compression on my super sore leg for weeks before I could do it my self. I had pins and needles nerve pain in my leg for months that has finally gone away. So if I had the money I would fix my left leg which is getting worse from lymphedema. Thanks for all of you that have checked in with me to decide if you want to have Dr. Granzow help you. It is too bad that health insurance who caused my lymphedema won't help to fix it. Hopefully future generations will change how we are treated. Happy Lymphedema Awareness Month!
Aug. 13, 2014 will mark three weeks after my liposuction surgery to remove 4.3 liters of lymphedema sludge out of my leg. I woke up out of surgery fine and my physical therapist Julie had my right leg bandaged. I could get out of bed and use the bathroom. Yeah!! That is always the trick after coming out of anesthesia. The surgery went well according to Dr. Granzow. The second night the bandage really irritated the top of my right foot and I would get up every hour to walk around to relieve the pressure. The first two weeks were pretty rough as I was super sore and had to be bandaged to keep the leg from swelling. I got my new compression garments - $1,800 - hopefully to be paid for by insurance (submitted the claim but haven't heard if HealthNet is going to pay up). I have a left leg thigh high (I have lymphedema also in that leg). Plus two thigh highs for the right leg. I wear the number 3 and the number 2 on my right leg – taking the top number 2 garment off at night. Plus I have the biker shorts. My right leg is a lot smaller than before the surgery and even smaller than the left leg which has lymphedema but not as bad as my right leg was before surgery. Lucky for me, my husband Steve is helping me get the right leg compression garments on. They are super tight. I even need Steve to take off the right leg garments. This past week I have been able to get the top right garment off at the end of the day. The left leg is easy for me to take on and off. Putting the right leg garments on and off the first two weeks were pretty rough as my leg is super sore from the surgery.
I will be seeing Julie the PT on Wed. to see how it all looks. I met with the Dr. Granzow the first week after and he was very happy with how my leg looks. I tried to do to much 10 days after. I went to the barn to teach a lesson, off to the office 90 miles north, lunch with friends and then home. Not good - leg was super throbbing from being in the car and not elevated. Julie said it really takes 6-8 weeks to feel better. The last two days I have been doing a pretty busy out and about schedule. I taught a couple of lessons (even rode one of the horses for 2 minutes. Yesterday I coached a rider at a local show in 90 degree heat and did pretty good. I can't walk too fast and I can't bend my right knee completely with the two compression garments on it. My right foot is pretty swollen by night time and I have open toe thigh highs. Last night Steve wrapped my foot over the compression garment and that felt a lot better.
The compression garments will need to be replaced in 3 months. So I'm not sure if I can get insurance to pay for next set in only 3 months. Will see. The next step is either to do liposuction on my left leg or do the lymph node transfer. That will be another $40K plus or minus per surgery so lots of money and lots to think about. I was lucky that my friends donated over $24K through my go fund me website for the first surgery and really helped us out. Hopefully those of us that try these surgical procedures will help get the ball rolling for better support / coverage from the health insurance industry. Everyone I tell my story to can't believe that health insurance doesn't cover any of this.
Dr. Granzow took out 4.3 liters of lymph sludge out of my right leg. I'm checking out of Providence Little Company of Mary Medical Center in Torrance, CA tomorrow. Will post more later.
I am looking forward to my surgery on Wed. the 23rd of July. Dr. Granzow will be liposuctioning the lymph protein solids out of my right leg. I did my EKG and blood work and I am all ready to go. My husband Steve will take me up to Providence Little Company of Mary Medical Center in Torrance on Wed. morning. Surgery will be 4 hours starting at 11am. I stay over two nights. My lymphedema therapist will measure my leg and order my new compression stocking but I will be in bandages until they come to keep my legs from swelling. I'm getting excited and will really be looking forward to the Lymph Node Transfer surgery 8-12 months after this surgery.
I just found out via the Lymphedema Guru on Facebook that California requires health insurance companies to pay for lymphedema wraps and garments. So my job today will be to call them and find out if they will now help me!!
I posted on my Facebook page: Looks like California health insurance companies have to pay for compression garments for lymphedema patients as of July 2013. Thank you Lymphedema Guru for sharing that info - now I get to educate my health insurance company - wonder if they will reimburse me for my $900 jobst custom panty hose I paid for last Dec. - be better if they paid for my surgeries and help me get rid of this expense - $1800/year for Jobst to wear every day and $3,600 / year for CircAid to sleep in every night to prevent me from swelling up like a fat tick / getting cellulitis and other medically expensive stuff - wish me luck!!!
Only 26 days to go for my first surgery. I’m getting excited!!
A good source for lymphedema sufferers: www.lymphactivist.org
The link for the news about California: http://www.lymphactivist.org/efficacy_of_cdt.php
Also share the Lymphedema Treatment Act with your congressman: http://lymphedematreatmentact.org
If you want to help me here’s my gofundme site: http://www.gofundme.com/8ewey0
Cheryl Erpelding beat uterine cancer in 2010, but was stricken a year later with a major complication after her surgery – secondary lymphedema. Lymphedema can occur years after cancer surgery involving lymph node dissection. Lymphedema is a chronic lifelong condition in which excess lymph fluid collects in tissues causing swelling which can be very debilitating.
Cheryl founded San Diego County Riding Magazine in 1986 and grew her start-up into a million dollar publishing company – Riding’s Publications. Last year Cheryl sold her company to MPM Publications and remains on the team as the sales manager. She continues to help write articles, shoot photos and video, and helps with the layout of the monthly California Riding Magazine and the annual California Horseman’s Directory. She currently also is the sales manager for the nationwide and growing Horse Advertising Network.
Although Cheryl has health insurance through her husband’s employment with AT&T, her medical costs from lymphedema are not covered. Currently Cheryl needs to wear a custom compression pantyhose-type garment every day to keep her legs from swelling and sleep in a CircAid compression wraps at night. These garments need to be replaced every 6 months and cost $2,700.
Always a lover of puzzles and a fanatic problem solver, Cheryl has been on the quest to fix her broken lymphatic system. In her research she found several doctors who are performing surgeries that will fix lymphedema. She has met with Dr. Jay Granzow in Los Angeles and is going to have two surgeries to restore her lymphatic function. The first surgery will remove the lymph protein solids in her right leg. The second surgery, about 12 months later, will transfer a lymph node from her under arm to her groin area to restore lymphatic function in her body.
Of course, these surgeries are also not covered by heath insurance and Cheryl has established a gofundme website http://www.gofundme.com/8ewey0. As of mid-June she has raised $19,000 towards the first surgery and is hoping to reach $35,000 from her supporters to add to her and her husband’s $15,000 to pay for the first surgery.
One of her longtime dressage trainer friends, Elizabeth Johnson is hosting a benefit clinic June 21, 2014, which along with some silent auction items is expected to raise another $1,000. Cheryl thanks all of her contributors and if her friends cannot help out financially they are welcome to help by sending the Lymphedema Treatment Act information to their congressman to help her change the way the health insurance industry treats lymphedema sufferers. http://lymphedematreatmentact.org
Cheryl is on a mission to help herself get better and also improve the health care for lymphedema sufferers everywhere. She is blogging about her experiences – www.LymphedemaSucks.com
I am working at the Western States Horse Expo and met Liz Helms CEO of Calif. Chronic Care Coalition. She wants to help me get help from my insurance for my secondary lymphedema needs. Already I have raised $18K for my first surgery! Check out her company at www.chroniccareca.org
On her home page her headline states: 75 cents of every health care dollar is being spent on chronic conditions "unnecessarily." It's time for that to change!!
Thank you Liz and Elizabeth McCall for the introduction! Hoping to help myself and many others with lymphedema.
Going to get approval from the cardiologist for surgery on July 24th.
1st surgery is SUCTION-ASSISTED PROTEIN LIPECTOMY - http://www.lymphedemasurgeon.com/lymphedema-procedures-los-angeles/liposuction/
I sent my first $10,000 - sending the second $10,000 tonight!
I just got this from the Lymphedema Treatment Act - The LTA was recently endorsed by the American Academy of Physical Medicine and Rehabilitation!
This is an important milestone for us because it is the first physicians group to join our list of supporting organizations.
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.