Lymphedema support Network
This is a personal story from Kimber who has very bravely agreed to allow me to share her story. This is the first part which gives the history of her life with Lymphedema, from the age of six, and will continue with updates as she has surgery in New York with Dr Corine Becker and Dr Vasile … I am so proud of Kimber for writing this as every time someone shares we give a voice to Primary Lymphedema… Mostly we hear the stories of secondary Lymphedema after cancer treatment, but this is only the tip of the iceberg. Primary Lymphedema can be far more severe and truly a lifetime sentence, often misdiagnosed and misunderstood.
Thank you so much Kimber for allowing me to share your story and I wish you good luck and good fortune in your on going surgery.. I am sure that everyone who reads this will thank you as well.
Like most six-year olds, I went to sleep on a summer night as a perfectly happy, healthy, very energetic child. Waking up early the next morning though was completely different. I was very sick with what would be my first of hundreds (this is no exaggeration) of bouts of horrible infections known as cellulitis. My cellulitis is EXTREMELY painful inflicting high fevers, vomiting, and chills that would actually make me shake and tremble. Each instance was so bad that I would be completely incapacitated within about 20 minutes of the first symptom of an infection. The very first infection started in my right thigh. It was very swollen and so infected it had actually turned a shade of purple. After being hospitalized for 10 days, the doctors released me and told my parents they believed I had an allergic reaction to a spider bite. While the infection finally went away I was left with swelling that never completely went down. From that point on, even though I was only six, I became very self conscious of both myself and what others might think of me.
Things progressively got worse when I reached age twelve. I woke up one morning to get ready for school and found that my right thigh was absolutely huge. Unlike previous times, I had no symptoms of an infection, but the swelling was so bad that I couldn’t fit into any of my pants. My only option forced me to wear my father’s sweat pants to see the doctor. My parents managed to have me seen by a specialist that same day at a very well-known and famous hospital called John Hopkins. It’s located in Maryland which is the same state I live in. After my hospital visit, I was put through one test after another to try to determine what was going on. Each test was incredibly painful and horrifying. It would be one thing if the test revealed a cause but the doctor had no idea what was wrong. He ended up telling my parents that he thought maybe I had a form of Elephantitis and there wasn’t anything he could do. We were sent on our way with more questions than answers. By the time I was thirteen years old the swelling had continued in my leg and then extended down to my right ankle. From there my leg continued to get bigger and bigger. This was a very hard thing to accept because I used to be very athletic and hadn’t been allowed to play sports due to my doctor thinking it would only cause me more harm.
At some point the doctor’s believed I needed surgery to try to correct all the issues from the swelling. I was fifteen years old when I had my first of fifteen surgeries on my right leg. It started with liposuction and then a “de-bulking” procedure. The latter consisted of opening my leg from top to bottom, removing all fatty tissue and draining whatever fluid possible. Then as you’re closed up the skin is pulled tightly together as if you’re tying a pair of shoe strings. With the excess fluid and tissue removed they had to cut away any excess skin. All of this was done in hopes of having a smaller leg yet each time the swelling would gradually come back and they’d recommend doing it again. I had this done five more separate times thinking each time it would make it better. What my parents and I didn’t know was that I shouldn’t have ever been operated on in the first place. Any surgery makes Primary Lymphedema become worse because it destroys anything that might still be working in the lymphatic system. We didn’t know and neither did the doctors during that time. Like any teenager struggling with body image, all I wanted to do was feel the same as the other kids and live a “normal” life. I wanted to fit in with the rest of society and more importantly wear the clothes and shoes my friends were wearing. Sadly none of that happened. Instead of having a smaller leg, I was left with a HORRIBLE scar that runs from the top of my leg by my groin down to my ankle. Having these surgeries have caused me nothing but pain, heartache, and opened myself to having one infection after another.
Right before I graduated high school, I got yet another infection that unbeknownst to me has set the tone for what my life was going to be like. I started getting back to back infections so quickly that it put me on a first name basis with the hospital staff. At one point I was in the hospital every two weeks. It became so bad that I started to believe I would never be able to live outside of a hospital again. My life completely revolved around four hospital walls. I was afraid to even walk out of the house because it felt like no matter what I did it was going to cause another infection. My plans to become a high school music teacher never came to fruition as I couldn’t finish college due to missing so much school work and constantly being sick. I felt as if I had no life at all.
In my early twenties I got married and two years later pregnant with our first child. My husband and I were told by two different doctors that pregnancy wouldn’t affect my lymphedema and everything would be ok. My pregnancy was great because I didn’t have any infections the entire time. It was so nice to have any type of reprieve from an endless cycle. While this was supposed to be one of the happiest times in my life it also was a little bitter-sweet. Unfortunately the stress of pregnancy caused my lymphedema to cross over into my left leg. I woke up one morning to not just one very swollen leg, but two swollen legs as each was just as big as the other. I know the good out ways the bad and want to point out that I have absolutely NO regrets in having children as I’ve been asked that question so many times. I would go through it all again as our three children are the best blessings we could have hoped for. As long as each is happy, healthy, honest, and productive it’s all that matters regarding our children.
Two months ago I woke up in the middle of the night with the worst infection I’ve ever had. It scared me and shook me to my core that the thought actually crossed my mind if I was actually going to make it out of the hospital. When I came home and finally recovered, I decided to get on the internet and start doing research for possible new treatments, surgeries, etc. This is when I found Helen’s WONDERFUL website and became glued to it for hours. Because of Helen’s site I first learned of lymph node transplant. I had no idea this even existed. From there I got the information from her about Dr. Becker who is from France. She comes to New York City every two months and works with three other surgeons and performs lymph node transplants. Last month (July) I went to NYC and was able to meet Dr. Becker along with the other surgeons and found out I’m a candidate for the transplant. With having such a severe case of lymphedema I will need three transplants altogether. Two in my right leg and one in my left. I can’t even begin to tell you how nice it is to have a doctor educate me on my disease as it’s always been the other way around. I’m a bundle of nerves when it comes to this but I believe this is a very positive step and huge break through for all of us lymphies, whether its primary or secondary. I have a lot of preparation that needs to be done before the surgery and will have my work cut out for me afterwards. However, as scared as I sometimes feel, I know I’m very much ready for this because I never thought something like this would ever be possible in my life time. My first transplant is scheduled at the end of next month in NYC.
Since the age of six I’ve always felt isolated as the emotional, mental, and physical toll this has taken there is just no word or words to even describe. Helen’s website is an excellent way to share my thoughts and feelings openly. I’m about to turn thirty-eight years old at the end of this month. Even if I had to think about it I can’t put a number on how many infections I’ve been through. I am constantly worrying about scrapes, cuts, shaving, minor burns, bruising, mosquito and insect bites as just the smallest things trigger an infection. I’ve had over 20 surgeries now including having multiple medi-ports implanted on alternating sides of my chest. This is the only way to provide me antibiotics to help fight off the infections. My veins have been burned and weakened from numerous IVs to my arms and central lines in my neck. I’ve had every type of antibiotic you can think of injected into my body as it is the only way to rapidly reduce the infections on top of high doses of pain medication. I’ve traveled to different states, doctors, hospitals, and clinics and no one has ever known what to do with me. The constant fear is sometimes enough to drive me crazy and definitely leads to a downward spiral into bouts of depression. There is no doubt in my mind there were times where I felt like I was living in absolute hell.
As I’ve told Helen in a personal email that I would like for her to post my story as it’s a very personal decision. I’m tired of feeling that I need to hide or be embarrassed by my story and the disease itself. I’m so incredibly thankful that I found Helen’s website as this is a perfect way to share and educate yourself and other’s about lymphedema. I also thank God everyday as he blessed me with a wonderful husband who has always been understanding, patient, and supportive. It’s because of him and our three awesome children as to why I’ve been able to get out of bed every day and not let this disease consume me. I’m also blessed with loving extended family and friends to help see me through the good and the bad. Along with my very strong faith I know the good Lord up above has blessed me with this opportunity….keeping my fingers crossed! By Kimber