I’ve been asked to share my story surrounding lymphedema. I’ve hesitated to do so. This is a serious topic and I don’t take myself that seriously. Also, it will require me to reveal things about myself that not even my close friends and family are aware of. I am willing to tell my truth if it will help build more support for the Lymphedema Treatment Act, S 2373/HR 1608. My low point is in the rearview mirror. Now is the time. This is for those who are suffering with lymphedema far worse than me and may not be willing to share their story. I assure you they need your help.
When I was 23ish, I caught my Med Student brother before leaving an Easter family get together. I told him I felt this big lump in my thigh area. One thing led to another and I was diagnosed with Synovial Sarcoma. I was treated at Mayo Clinic with chemotherapy, radiation, and surgery. I had the normal loss of hair and got very sick. I survived some not so great odds due to the amazing work of healthcare professionals. I was humbled by the love displayed by my family, friends, and even strangers. I lost my ability to father children, but gained a whole new perspective on life.
During that process, I had a surgery to remove lymph nodes and part of the quadriceps in my right leg. I think everyone involved, including myself, was just happy to see I was in remission and we did not put a lot of emphasis on the long-term possibility of lymphedema. I do hope there are now more formal education programs that emphasize this topic.
Over the years, I’ve had subsequent surgeries on my leg due to blood clots and circulation issues. Including a bypass in the leg and a later surgery to put a Bovine patch in to shore up the bypass. In addition – a neck fusion, Achilles surgery, ankle surgery, and hand surgery. I do think the bum leg has forced me to put more pressure on other body parts and that may relate to some of these other issues. I want to live life to the fullest and it frustrates me when I get put on the sidelines due to surgeries, recovery, etc. Anyway, I lost count on the number of stitches I’ve had and my first steps out of bed each morning are a real bitch!
I am now 48. 7 years ago, my leg slowly started swelling. I ended up with an infection/cellulitis/septic shock, 106 degree temperature, teeth chattering uncontrollably, very low blood pressure, and my leg was hot and blistered. I spent 8 days in a hospital (mostly ICU as I recall – expensive). I thank the great staff at Olathe Medical Center for bringing me through that situation. That was my intro to lymphedema. I was totally unprepared for this.
For the first year afterwards, I spent about 2 hours every day wrapping and unwrapping my leg. Some days multiple times to keep it tightly compressed. It was mentally and physically grinding. Also, I spent a lot of time just dealing with the materials (washing, rolling, etc). It completely overwhelmed my life. New wardrobe to accommodate the leg. Lowered expectations about the life I could lead. I had a difficult time staying on track with my job. I would go days with limited sleep. I drive all over the Midwest for my job. I recall wrapping/unwrapping my leg in the rain on a bench at a rest stop, because it was my only option at the time. Eventually, I was able to start using compression stockings and different sleeves to wear at night. Through the great folks at Truman Medical Center – I can now give myself lymphedema massage. The swelling will always be with me, but is under control.
Here’s the really difficult part to divulge. I downplayed my physical and mental condition. I am usually pretty cocksure about me! That’s how I like people to think of me. The truth is I had physical pain, felt angry, alone, ugly. I’d either fake it or isolate myself to avoid being exposed. I leaned on alcohol and painkillers (Vicodin, Oxy) at times. I would never act upon it, but there were times I would get really interested in lymphedema patients who wrote about amputation or even worse. Sometimes my thoughts were very dark. I would never act upon it, but I see some of the blog posts and wonder what the suicide rate is for lymph patients. It can lead one to terrible despair and self-destructive thoughts. I feel weak and embarrassed to admit all of this, but I think it’s important you are aware as you contemplate supporting this legislation. I have unbelievably awesome friends and family who love me. I am certain they would be there for me if I had ever asked for support. I worry about those with lymphedema who don’t have the same type of safety net of friends and family.
It’s taken a toll on my relationships. I think it’s safe to say cancer contributed in part to the end of my first marriage and lymphedema definitely contributed to the end of my second marriage. I definitely do not blame my ex’s, they were just caught in my crossfires and the fallout. You can’t help someone who won’t communicate. I am very regretful in hindsight.
I finally feel like I’m back on track. I am just a regular guy dealing with irregular circumstances. It does take discipline and strength to maintain a positive outlook. Lymphedema/my leg does not define who I am. I am becoming less self-conscious. I have pain, but I no longer rely on alcohol/painkillers. I have limits to what I can do physically, but now I push those limits instead of using them as an excuse. I exercise regularly, play golf, laugh more often, and I’m more open to a relationship with the right woman. I’m starting to realize I do have something to offer. I still notice people observing or talking about my leg. I no longer dread someone asking me about it. It’s not the stigma I had made it in my own head. I now thank them for asking. Lymphedema is not widely known. I want people to be aware it’s a medical condition and I’m not eating stuffed crust pizzas that end up in my leg!
It is difficult to find medical professionals who are familiar with treating lymphedema. Fighting for insurance coverage is a nightmare. I am fortunate that I have a good career and can afford the best in care to treat my lymphedema whether it’s covered by insurance or not. It is a financial sacrifice. My physician has recommended a leg pump I could use while watching tv or reading at night. It’s expensive, but at some point I’ll need to bite the bullet. I can’t imagine how it must be for others who can’t afford compression garments and basic care. I worry about their mental well-being as well. I read the studies, view and respond to the distressed blog posts (http://lymphnet.inspire.com/). There are so many that have a much worse case of lymphedema and may be trying to tackle with less support. That makes me panic for them and I can’t breathe when I think about their state of mind. I am coming out of the weeds and will help anyone I possibly can!
You don’t have to be an Actuary to do the math on this one. If I did not have the ability to treat my leg properly, I’d end up back at the emergency room fighting for my life. I don’t recall the total fees of the last hospital stay, but it is exponentially more expensive than proper care and garments.
Honestly, there’s nothing to debate. This is silly. Please support Lymphedema Treatment Act. Your support of this bipartisan legislation is very important to me. Everyone deserves the chance to live a life full of hope and dignity.