My Primary Lymphedema story...

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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My Primary Lymphedema story...

Postby bbkmomma » Sat May 12, 2007 8:28 pm

OK – this is VERY long – please bear with me…

The first time I remember noticing my "fat calves" was in my freshman year of college. I had put on the freshman 40 pounds (as opposed to the freshman 15!). My parents were quite critical of me, and they both commented “Look at your calves, they are so swollen!”

Well, as a bullet-proof 19 year old, I ignored their concern.

Years went by and as I moved into my late 20s, I really started to notice the "hump" on my left calf just above my ankle. Being totally clueless, I consulted a cosmetic surgeon about having liposuction on my calf. He was supposed to call me back after our consultation, but never did. God was protecting me from that nightmare!

Other health problems took center stage as I struggled with infertility, miscarriage, and finally the birth of my son. Then as a busy mom I just ignored my ugly fat legs and covered them up with pants. We adopted our second son, and my hectic life continued. Any time I briefly pointed my legs out to my gynecologist or internal medicine doctor, it was acknowledged as fat. Well, it did seem to “bounce back” like fat!

So here I am at 41 – helping my mom out after double knee replacement surgery. She was referred to MLD therapy at Presbyterian Hospital of Dallas and was a little apprehensive. So I went with her to her first appointment. As the therapist (Wendy) started to describe Lymphedema, I thought “That sounds like what is wrong with my leg!” Wendy kindly let me lift up my long pants and as soon as she saw my leg she said “YOU are the one who needs to be here!”

Thankfully, my internal medicine doctor realized that more attention was needed. When I went to see him, he referred me to a vascular surgeon (Dr. Dennis Gable). Dr. Gable took one look at my legs and said – yes, you have Lymphedema in BOTH legs. After ruling out any further complications with a CAT scan and vascular sonogram, Dr. Gable recommended me for therapy.

Now, I sit here 4 weeks after starting with some very good results! I have been wrapping my legs from first thing in the morning until right as I get in bed at night. Since my ankles and feet were not as affected as my calves, the bandages were digging into my ankles and keeping me awake at night -- even with extra padding.

So far, I have lost 2 liters of fluid from my left leg and 1.5 liters from my right! After reading some of the stories on this site, I feel extremely blessed that my condition has not been worse. However, I want you all to know that I am praying for your health daily. I truly believe in the power of prayer.

It is such a relief to know that I am not alone. When I start getting stressed out about the bandages and how much they are slowing me down, I remember that the alternative could be so much worse had I not discovered the true nature of my problem.

Now I am just counting the days until I get my support hose. Who knew I would be excited about that!

I hope I have helped in some small way by sharing and I really appreciate this message board. Thanks!
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Postby patoco » Tue May 15, 2007 7:19 pm

Hi bbkmomma :)

Just wanted to give you a super welcome to our family here. :!: :!:

Outstanding fluid loss there :D ...keep up the good work :!:

I am soooo glad you finally found someone who could identify and help get you into treatment. It's encouraging to hear and hopefully as the info about lymphedema gets out there to the medical world, more and more of us will be getting earlier diagnosis and help.

Very much look forward to hearing more good reports and again, welcome to our family :wink:

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Happy For You

Postby lleggs1371 » Wed May 16, 2007 10:14 am

I am so happy for you, and I wish you the best. It is so amazing, you feel like a little kid in the candy store when you are awaiting your stockings, or going to get fitted for them. Take care.

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Postby bbkmomma » Tue May 22, 2007 12:51 am

Thanks you guys for all the "support" ha ha.
You are a blessing.
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