I have had Primary Lymphedema since I was six years old

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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

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37 thoughts on “I have had Primary Lymphedema since I was six years old

  1. Hello Kimber,
    Thank you for telling us all your story,it must have been a difficult decision to collate all your many visits and surgerys and tell all of us, but it must have been even harder for a young 6 year old to try and understand why all that was happening to you
    I wish you all the best for the surgery you are about to have ..but you have great courage and faith so I am sure you will accept whatever the result is
    I am a friend of Helen’s and read her blogs with great interest. I do not suffer from Lymphedema but have followed Helen and what she has gone through since she was diagnosed and it has been very hard for her.
    All the best from me here in OZ . It is great to see so much information about Lymphedema reaching out all over the world ..and again thanks for writing about your journey

    Cheers

    Julianne

    • Thank you for your support. While I don’t know Helen personally, I do believe she’s an incredible woman! You must be a wonderful friend to her…Australia is a bucket list destination for my husband, Scott, and I. When all my transplants are over we plan on making a trip there. Maybe we can all actually meet? Once again, thanks so much for your support!!

  2. Thank you for sharing your story. I cross my fingers for you and Your operations. Hope you will keep sharing Your experience from Your operations With us.

  3. Dear Kimber,

    your story is heartbreaking… I know it is very hard to talk about this in public, but I find you so courageous that you are willing to do it. Every time I read about primary le that it is a ‘rare condition’ and it is not painful… Uhu… Who has the guts to say this? Someone who obvious has never talked with somebody with primary le. And what it might do to someone to live with a chronic condition, pain, fear and stress that it will worsen no matter what you do. Some people have no illness and have lots of complexes that they get some kind of depression.
    People with primary le have to live with this burden and daily struggle and still, like you Kimber, you find a reason to wake up, to deal with it and raise your kids and take care of your family.
    It has been to long that people with this condition were embarrassed but why? Because everyday you are strong to fight something you did not ask for? When I read your story it is heartbreaking to see how much courage and strength somebody can have to deal with this from when you are six… You deserve lots of respect!
    This disease is not a rare disease like some doctors like to put it cus they are embarrassed off their lack of knowledge regarding to this disease… They say 1/6000 persons is born with this! This is not rare, in a football arena they are like already 10!
    It is just rare, cus no one who has it dares to speak up, and they try to hide it as much as possible. Thank god, now there is internet, more awareness and doctors are less ignorant! I hope everything works out for you Kimber, I really do! Thank you for your important story, and the best for you, your family and with your recovery!

    • Thank you for this Kharimata I will make sure that Kimber reads it.. Yes a very strong women to tell her story.. I am very proud of her and I hope it will help her… Helen

    • Wow, thanks so much, Kharimata for your comment and support!! I couldn’t agree more with everything you have said. Do you have lymphedema or know some one that does? You’ve definitely hit the nail on the head with your complete understanding of lymphedema.

  4. Kimber: thank you for sharing your story and I wish you much luck with your surgery. I look forward to future posts from you and commend you on your bravery in taking this next important step.

  5. Thank you sooo much, everyone!! I really do appreciate your comments and support more than you could possibly ever know. I will definitely keep you posted as I go through this next journey. And when I’m down in the dumps I’ll be sure to come back and read all your comments as I know it will help lift my spirits. Much love to you all!!

  6. Thank you for sharing your story with us and masses of good luck for the transplants – you deserve it after all you have been through. Let us know how it goes! X

  7. Hi, my child was born with Lymphedema in the left foot. It moved to the other foot a few years ago. Now at age 13 he has it from the stomach to his toes. He has been in and out of so many Hospitals. He feels like a freak!!!!!!!!! Now they want to operate on him. I don’t know what to do… Konnie

    • I am so very sorry that your son would have this problem….What sort of surgery do they want to do??… Make sure to investigate, ask lots of questions make sure you feel happy with any decisions.. There is a lot of new surgeries and research taking place …. I am sure that Kimber will respond to this too … Helen

  8. Konnie, what type of surgery do they want to do on your son? Be VERY careful as the type of surgery is so important with Primary. What type of doctors want to perform this surgery? I’m so incredibly sorry to hear about your son as I know EXACTLY what he’s thinking, feeling, and going through. If you would like you can email me directly. I can answer any questions and try to help/guide you in anyway possible. Once again, I’m so sorry and my heart goes out to you and your son. kimberstrong@comcast.net

  9. Dear Kimber,

    Yes unfortunately I am familiar with primary le as I have it myself since I was 19 in both lower limbs (and now starting a little bit in upper limb). Luckily I had a careless childhood until I was 19 (what concerns health problems and this is in fact the most important… when you get something like this you start to understand that all the other problems are in fact peanuts 😉 ). Before I never knew that it was possible to have this from when you were a child (my doctor told me it usually shows after puberty), but now that I am also in a search for a solution, I start to read other stories…. and I really hope that whenever I have kids I will not pass it on to them. I think in my family there is some kind of history, but they where never proper diagnosed but it was always quite manageable.
    Recently a doctor told my mom she has ‘nothing to worry about’ cus today there are lots of treatments so my case will not worsen… Uhu… i had a stupid accident and it left me some cm’s… I can show him my legs and even afterwords he would still think the same …
    I would love to meet a doctor that is pro-active: or they frighten me to death with all there ‘ 100 % sure it will worsen no matter what you do and there is no cure ‘ or ‘ nowadays there are many treatments that are effective’ talks…
    But I guess, until there is a cure, this is what we have to deal with.

    Konnie, I hope your son gets the best treatment. I see how my mother worries for me , and it must be horrible to see your child go through all this. Hopefully in the near future there will be more options available. Your son needs to keep faith and hope in this!

  10. Pingback: I have Primary Lymphedema .. Update | My Lymph Node Transplant

  11. Dear Kimber. You story is amazing. What an inspiration you are to us. I have had secondary Lymphodema in my right leg for 14 years as a result of cancer treatment. I am 52 years old and cannot fathom what you so gracefully endured as a young lady. I am meeting Dr. Beeker in Nov in NY. My prayers are for your healing and I so look forward to hearing how you are progressing
    God Bless you
    Paula

  12. Pingback: Guest Column: Primary Lymphedema since I was six years old | Lymphedema Diary by Britta Vander Linden

  13. Hi Kimber, Thank you for sharing. Your story is incredibly powerful and moving. I am hoping for the best possible outcomes with your upcoming surgery. Keep us posted. And thank you, Helen, for all that you do. So much good is coming from your passion and hard work.

  14. Pingback: Kimber’s third LNT… And Update | My Lymph Node Transplant

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