Note – Since this original post in 2015, my father passed away from adrenocarcinoma in June 2016 after living with lymphedema for 43 years. At the time this was written, we did not know he had cancer. The blog was created with his support and blessing. He said that it was time for us to come together as a community and make our voices known. I have only had the strength to update it now.
If love could have saved you, you would have lived forever. – David Ellsworth
Why Write A Blog?
Am I in it to make a profit off of people that are suffering from a degenerative condition? No. This blog is as personal as it gets. Basically, not only do I know what it is like to have primary bilateral lower extremity and truncal lymphedema, but I also know what it is to grow up watching a family member have it too. Lymphedema has always been part of my life in some form or fashion.
Was that a bad thing or a good thing? Depends on your point of view.
Raising Primary Lymphedema Awareness
First and foremost, I’m doing this to promote awareness for hereditary Lymphedema, specifically the following type that runs in my family: Lymphedema Distichiasis
People can be born with abnormalities in the lymphatic system. This type of lymphedema is known as primary lymphedema, which can impact any part of the body and may involve swelling in multiple limbs or body regions.” Source: What Causes Lymphedema? National Lymphedema Network
Did you know this? Most people don’t, not even doctors. Sad, but true. If you take a sample survey of the population of people with hereditary lymphedema, most will say that they went to multiple doctors before getting a correct diagnosis, or are currently in the process of convincing someone to BELIEVE them. It is pretty rare to have the correct diagnosis the first time, because there can be a number of factors involved in why someone is swelling to begin with. It also depends on where you live. Healthcare options are not the same in every part of the world, much less state to state or city to city in the United States.
Primary LE patients get sick and tired of explaining that this condition just appeared out of thin air. Sometimes finding the origin is just as traumatic because you start to think, “How could I have prevented this?” Mostly we get sick and tired of explaining that we are not making it up.
They also keep saying that we are a rare group. Yet, ironically, I keep meeting people with hereditary lymphedema just about every week.
Multi-generational Lymphedema – It Exists
Secondly, I started this blog because, quite frankly, I haven’t seen many hereditary Lymphedema blogs or blogs with Lymphie families that feature a parent-child that both have it. They are out there somewhere. I know it. In my case, both my grandfather and father had it. Many Lymphies are the first in their families to ever present. You can be a carrier for the gene and never develop symptoms.
Let me say one thing with absolute certainty. The biggest fear of any primary Lymphedema parent is passing this on to their child(ren). I know, because I have a son.
Not a Writer, But I Care
Beyond promoting awareness, people from around the world kept asking me in social media groups and via messaging how I did my bilateral reduction for my legs. I decided, ok, I need a platform that is transparent and easily accessible. A blog. I am not a professional writer or freelance writer. I always say I’m not a doctor, nor do I play one on TV. I have nothing to do with the arts. My background is in Information Technology with 19 years of experience in Unix and Linux based infrastructure and application support as a corporate professional. I hold a Bachelor of Science in Computer Science.
Growing Up in a Lymphedema Family
So what made me decide to dive in and do it? The memories of growing up in a Lymphedema family. Maybe, as you are reading this, you have a daughter (or son) that’s watching you battle LE. Maybe you feel guilty about missing out on certain things with them.
Dad never went swimming with us. He never exposed his leg in public, and I never saw him wear shorts. Ever. Most trips to amusement parks were done with extended family members. As Dad aged with LE, road trips became few and far between. He didn’t like to fly.
Things he managed to do are the memories I cherish, especially now that I know personally how hard it was for him. He taught me how to roller skate verbally, because his foot didn’t fit in the skate. As a kid, I never knew the difference. Same thing with riding a bike. From the sidelines. Yes, I fell. He didn’t run to my side like most parents. He yelled from our yard, “Get up! That’s the only way you’re gonna learn.” He pitched for his company softball team, but never ran the bases. I never noticed until later. Still, he taught me how to bat and trained me to play first base. We played catch over and over until I could catch any type of throw for my age.
See, I’m that girl all grown up. I decided to invest in this blog and name it “Lymphie Strong” in honor of my Dad. Really, in honor of my parents, Pete and Rose, and their love that withstood not only the test of time, but a debilitating condition that would shake any marriage.
They were married 32 years until her passing in 2006. Mom stood by her man. Lymphedema created a bond in our family inasmuch as it has made us suffer. I watched how they coped with it, and there’s only one word to describe it: STRONG.
My parents searched for 24 years from 1974 – 1998 without a diagnosis. We are from a small town in Texas. His GP kept calling it cellulitis. Cellulitis is a complication that arises from having lymphedema. He finally found help when I graduated from college and moved to Houston. I was passing a billboard on the Southwest Fwy in Houston, and I saw two legs that looked like my Dad’s one leg. I couldn’t believe it. That night I called my parents, who put the phone between both of their ears. Remember this is May 1998, this was long distance and no texting back then.
Me: You’re not going to believe this, but I think Dad and I have something called Lymphedema.
Dad: Lymphedema? What the hell is that??
The wound center in Houston took his case, and he was finally diagnosed with Lymphedema. He underwent 8 weeks of CDT and stayed with me the entire time. I helped him roll his bandages. At the time my own lymphedema was mild. We had asked if I could do CDT too, but they said no. They took one look at my foot and said “Don’t worry, you won’t get as bad as your Dad.” (Boy were they wrong.) Dad was able to reduce by 40%, but his leg was never normal looking as compared to his good leg.
The Misdiagnosed & Cellulitis Years
Prior to that, my mother would cry and pray, and I remember watching my father shiver uncontrollably from 104+ fever with cellulitis. Too many times to count. I would help take his temperature and rinse out wash cloths. He would be sweating profusely, and his leg would be bright red. We kept the house dark and quiet when Dad was having his cellulitis episodes. Mom wanted him to rest and recover. I read a lot of books in my room as a child.
Cellulitis is a horrible illness and can be life-threatening. There was one episode that I will never forget for as long as I live. One time I saw nurses dunk him in an ice bath fully dressed in an attempt to bring down his fever. He was screaming, and they were pushing his legs down in the ice. Mom was holding his hand and holding my brother, and I was holding hers. We were a little family chain that wouldn’t be broken. My brother was very little, and my Mom refused to leave or have us split up. This must of been in the early 80’s.
Then I had my own cellulitis episode from a cat scratch at the age of 10, but that’s another blog post. Extreme temperatures are the worse thing for Lymphedema. Later, after his proper diagnosis, they changed to lukewarm packs. As I got older, my mother would leave my brother and me in the waiting room. The ER staff knew our names. I remember watching the ER doors swoosh close and always wonder what would happen next. Would we go home in a couple of hours or would he be admitted yet again?
The Hospital Go Bag & Cellulitis Drills
Over and over again this happened to my Dad throughout the years. Some families have a fire drill plan in place, well we had cellulitis drills.
We would cover him with blankets and pray for antibiotics to kick in. More often than not, he was hospitalized and subsequently laid off from work. In one particular instance, he had a central venous catheter in place, and we took turns driving him up to the hospital to get antibiotics pumped. It was cheaper than a hospital stay, and he had been laid off yet again for missing too much work. Our entire lives revolved around LE because we never knew when cellulitis would strike. Mom had a hospital “go” bag always packed.
As soon as Dad recovered though, he was back at life and back at work. He never let these episodes get him down.
Hand Washing Compression
So way before I was washing and rolling my own compression. I washed Dad’s compression garments by hand. I HATED IT! Sometimes I would complain. My brother didn’t have to do it, why me? The age old comparison, right? Ha! Sometimes I tried to bribe my brother to do it. Funny, he never took me up on it. Don’t laugh. You know how it is. Mom didn’t want to ruin them in the washing machine, because they were so expensive.
One day I said, “It says on the label they are machine washable you know.” She told me to hush it, and that look in her eye said she meant business. I never mentioned it again. It was one of my chores, and that was it. End of story. In retrospect, I’m glad I did it. It made me understand the Lymphie way of life, even though at the time I had no idea that I would develop it myself.
If you do have small children with this illness, teach them about the importance of the lymphatic system. We need future leaders in medicine and healing that will cure this disease.
Standing Up To Lymphedema
I have lived my entire life with this condition watching it try to destroy my father, and I’ll be damned if it takes me down and other people too. So I’m sharing our story. Tomorrow is never promised. Who knows when my time is up for that matter? I have no idea what the future holds. Hopefully there will be a permanent cure for everyone.
From my perspective, I can share that reduction is possible through hard work and partnership with a quality LE therapist up to a certain stage and depending on the presence of fibrosis. If you have Lympedema in 2017, you are so much further ahead than people who had it in generations before you. Surgery is increasingly becoming a viable option for many. There have been so many advancements with the existence of the National Lymphedema Network and the Lymphatic Education & Research Network. My Dad’s story is proof that you can live over 4 decades with LE.
Do not waste time in getting treated. There’s no magic pill or easy way to do it. No pie in the sky claims or magic beans. Get CDT done, compression, and then find what works for you from there to maintain in terms of diet, exercise, and an overall maintenance routine. Whatever it takes.
Daddy, May You Rest in Peace
This is my Dad pictured with me on my wedding day. Thank goodness he fought that Lymphie battle and was able to walk me down the aisle.
He was a welder with LE for 25 years, which is a physical job in the elements – the hot summer sun and the cold. My family never went without. We weren’t rich but we were loved. He was my LE coach, if you will. Much of my LE reduction success was owed to him as a driving force in my life. He knew the symptoms, he knew the pain, and he never let me give up. He had a firm faith in God. Always checked if I was following the LE Do’s and Don’ts, especially MLD, no matter how much I hated to hear him say it yet again.
This is why I’m writing this blog and have dedicated my time to becoming an advocate. I have seen firsthand what LE can do as we grow older. I firmly believe that all of us together can make a difference.
Love my Dad. He would tell you to stay strong with lymphedema, wear your compression, and never give up.