My name is Stacie and I'm a 33 year old mother of 3. At my highest, I weighed 450# and have had RNY surgery to lose weight. I stumbled upon this site while searching for information on Lymphedema. Amy Williams's story was an inspiration to me and is my driving force behind pursuing a normal life while managing my own Lymphedema. Here is my story. Any input, advice, or otherwise is welcome.
I was diagnosed with Lymphedema in 2008 after bout after bout of cellulitis infections and hospitalizations. In May of that year, I spent 9 days in the hospital, spiking a fever of 105.4 and having my WBC as high as 26000. I ended up with blisters up the back of my leg and an incredible amount of pain. It was awful. I had infections every 3-4 weeks that year until they finally stopped for the time being. Over the years, it has been frustrating, especially since I lived an hour away from the nearest Lymphedema Therapist with no vehicle.
I entered into the Surgical Weight Loss Program at Geisinger Medical Center in Danville, PA with hopes of having RNY surgery to help lose weight since my doctors told me that losing weight would ease the swelling in my leg (only my lower right leg is affected). I was in the program for well over a year due to 2 barriers to my progress in the program. The first was a fee that the program charged which was not covered by insurance. I simply couldn't come up with the money. The Doctor overseeing the program was considering waiving the fee, but I had to lose a certain amount of weight first. That became my second barrier. I had lost the weight that I needed to lose, but thanks to my lymphedema, I gained it back and the water retention was preventing me from losing anymore.
In a strange twist of fate, I was forced to move from my home and moved down to the Hanover, PA area. I was too far from Danville to continue in the program, so I had to quit. My new doctor was concerned about the swelling in my leg, so I found a Certified Lymphedema Therapist named Cindy and we moved forward with that. Unfortunately, my insurance at the time would only pay for so many sessions. I wasn't able to wrap my own legs and because I was new to the area, didn't have anyone who could help me to wrap daily like I should have. The therapist told me about some compression garments called Farrow Wraps which I could use by myself, but insurance wouldn't pay for them either as they are considered a "luxury". They are pricey and I have to have custom ones because of the shape/size of my leg. I can't use compression stockings because my ankle is very small while the rest of my leg is large and all the stockings do is slip down my leg, strangle my ankle, and cut off circulation to my foot. I was discharged 2 months later with a BIOCompression Pump, but still had no one to help wrap my leg.
In May of 2011, I was finally eligible for Medicare (I had been pursuing disability for a few years and won in Sept of 2010) and went back for a second course of therapy. While the wrapping, pumping, and manual drainage helped, without wrapping at home, I was stuck in a rut. After 2 more months, was discharged from therapy again.
I also decided to pursue WLS again once I was eligible for Medicare. I contacted Dr. John Monk with Apple Hill Surgical Associates in York, PA and had my first appointment with him in July of 2011. Thanks to my lenghty time with Geisinger, he allowed me to forgo the educational portion of the pre-op process and go straight to the consultations to qualify me for the surgery. During that process, I ended up getting 3 more infections, with 2 hospitalizing me (I should have been hospitalized with the first of the 3, but the hospital I went to sent me home on oral antibiotics). The last infection landed me in the hospital for 10 days. I almost ended up in Critical Care because I spiked a fever of 104.8 (again!) and they were worried. Dr, Monk stressed the importance of having WLS saying it would help to relieve some of the swelling in my leg because I would retain less water. Finally, in November, I was approved and set the date for RNY surgery.
After my last infection, I started another course of treatment with my Lymphedema Therapist. I really didn't want to go, but this last infection gave me blisters up the back of my leg and the doctor at the Wound Care Center demanded that I go back to her. I went back and we started another aggressive course of manual drainage, wrapping, and pumping. She stated over and over that without wrapping at home, I wouldn't be able to get my leg back to a more normal size. The Farrow Wraps were a necessity. I'm still seeing her twice a week and we are having fun watching my weight drop. As of my surgery, I'm down 56 lbs (I was 412# on the morning of surgery). My weight loss has slowed down and we both think it's because of the water I'm retaining in my leg. I would love to stay home and take the 80 mg of Lasix that I'm prescribed, but I've such an incredible amount of energy that I can't sit still! When I take it, I'm peeing every 3 minutes. Next week, I'll have to slow down a bit, bite the bullet, and take those darn pills so I can see more of these pounds that I know I'm losing come off on the scale. Cindy stresses the importance of moving and exercizing. She says the "muscle pump" gets the fluid moving. I can do so much more and spend more time on exercize equipment than I had before.
I can't wait to finally get my Farrow Wraps within the next month! I will be paying for them on the 2nd when I get my SSDI payment and hopefully they won't take too long to get to me. I'm anxious to see the difference that daily wrapping will have on my leg and hopefully I'll be able to wear shorts/capris/skirts/dresses with pride once again. I must note that I don't care what people think about me or my leg. I've had to overcome the feelings that come with having a misshapen leg and the worry of what people think when they see it. "If they don't like what they see, they don't have to look!"
I'm sharing my story with you in the hopes that I can inspire someone like Amy has inspired me. God Bless you all and good luck with your own journeys!