ticking time bomb or elevation?

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

Moderators: jenjay, Cassie, patoco, Birdwatcher, Senior Moderators

ticking time bomb or elevation?

Postby kkwhitmore » Mon Apr 07, 2008 7:42 pm

In 2000, when I was 29 years old, I was on a road trip with my family driving through the Rocky mountains. The elevation made me feel like I was in a bubble-- it was hard to breathe and everything took on a "dream" quality... and my feet swelled up. They looked like inflated surgical gloves. I connected it to the elevation, but it never went away. In fact, it got worse. The swelling made its nasty little way to my knees over the next couple of years. I saw several doctors who ran tests for heart problems, hypertension, diabetes, kidney issues.... each shrugged their shoulders, said, "lose weight" and put me on diuretics. That went on for 4 years. {I was about 20 lbs overweight, then}

Then one day, my toe itched, so I scratched it. I ended up in the hospital for a week -- on two different I.V. antibiotics. My left leg was streaked and inflamed from foot to just above the knee. My doctor decided that while I was in there, she would look deeper into my "edema". I had elevated liver enzymes and she suspected Hepatitis..... thank God that was not the case. (I still don't know what caused the elevated liver enzymes?) Before I left, she prescribed diuretics.... and an appointment with a physical therapist she thought might be able to help me.

I met with her. She looked at my leg, listened to my symptoms, said, "Lymphedema, honey. Throw away those pills." Over the next few weeks she taught me how to massage myself and wrap my legs with cotton "leg warmers" and 2 layers of bandages. I learned which exercises to do...

Something she said hit me.... "you're lucky it hasn't progressed further. I see people all the time who end up with tough skin and blisters before they even know what the problem is." My older sister had swollen legs, tough skin, and "blisters", but everyone assumed it was due to diabetes, blood pressure, or weight issues (pick one). I told her about it immediately and she made an appointment. She's doing so much better, now!! I'm so glad she didn't have to end up in the hospital the way I did.

I thought it was possibly the elevation.... raised my blood pressure just long enough to cause some damage or caused a ticking bomb to go off(?)
But now, I don't know. As far as I know, she and I are the only ones in the family with this issue. We have the same mother, but she doesn't have lymphedema.

Anyway, I moved out west and got a new doctor.... who knows NOTHING about it and doesn't seem interested in finding out about it.... so I have to find a new doctor. I think I'll ask for a specialist referral, first, though. I've been procrastinating.

I don't understand why people don't know about it, especially with it's connection to cancer!

I HATE wearing my bandages. I HATE massaging myself. I HATE that I have to wear bigger shoes and feel uncomfortable in capris, shorts, and dresses. I'm a shoe fanatic. Figures..... I hate the pain.

But I am so glad I found SOMEONE who could help me AND my sister.

Now, though, I really, really, would like to know WHY. I would also appreciate a cure. :D
User avatar
kkwhitmore
 
Posts: 3
Joined: Sun Apr 06, 2008 3:16 am
Location: Tucson U.S.

Postby patoco » Wed Apr 09, 2008 7:12 pm

Hey Karla

Sooooooo glad to hear you got rid of those diuretic pills...in the long run, tbey can really leave your lymphedema in much worse condition. Here's a page on diuretics.

Diuretics are not for lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

There is a doctor in Tucson that is considered top notch in lymphedema:

Marlys H. Witte, MD
http://www.surgery.arizona.edu/faculty/Witte-M.htm
Director, Medical Student Research Program
Professor of Surgery

Arizona Health Sciences Center
Department of Surgery
1501 N. Campbell Avenue, Rm. 4406
PO Box 245063
Tucson, AZ 85724-5063

Office Phone: (520) 626-6118
Clinic Phone: (520) 694-6144
Email: lymph@u.arizona.edu

Clinical Specialties
Internal Medicine
Lymphedema

Board Certification
American Board of Internal Medicine, 1967

Research
Genetics of lymph vascular disease; Medical Student Research; vascular biology, including endothelial growth and proliferation; splanchnic hemodynamics and microvascular gas exchange; animal models of lymphatic disorders; lymph dynamics and its pathophysiology

If she isn't seeing patients, she may be able to help refer you to someone else. She's quite well known for her research.

I wish I could give you an answer to "why." There is nothing about this condition that gives an easy answer. Go figure, there are many in my family that have it, while others have never been sick a day in their lives, plus after hitting several generations in a row, it suddenluy hasn't showed up in my children's generation or their children's generation.

Lawd....am I happy about that though :!: :!: :!:

Was your sister ever able to get any treatment?

This page will link you to resources where you can find a certified lymphedema therapist in your area:

LYMPHEDEMA THERAPISTS - SCHOOLS OF THERAPY

http://www.lymphedemapeople.com/thesite ... herapy.htm

Pat
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

ticking time bomb or elevation?

Postby kkwhitmore » Thu Apr 10, 2008 1:27 am

Thank you! 8)
User avatar
kkwhitmore
 
Posts: 3
Joined: Sun Apr 06, 2008 3:16 am
Location: Tucson U.S.


Return to Lymphedema Personal stories

Who is online

Users browsing this forum: No registered users and 8 guests