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BILATERAL AMPUTEES & INTERNAL HEMIPELVECTOMIES

 

JUDY (Albuquerque, New Mexico)
I'm 30 years old, originally from Mexico, so I'm bilingual, fluent in Spanish and English!   I lost my right lower extremity from the hip at age 11 from osteosarcoma (I lived in the US by then).  I didn't use my HD prosthesis for a year as I was taking chemotherapy, I was too weak, I couldn't walk far with my prosthesis without getting too tired.  After my year of chemo was up, I began using my prosthesis part time in middle school.  By the 7th grade, I couldn't go without!  I'm a full time user, sometimes I even have it on for 19+ hours/day when I go western country dancing-I love it!!  I do tons of walking being a practitioner in Prosthetics and Orthotics!  I love what I do, I love being able to help people regain life again!  I truly believe that a second chance to life was given to me because of the amputation.  I treasure life and live it to its fullest!  I know I have little limp when I walk, but hey, I can walk and best of all, I can go outside and breathe the air and let the sun's warmth remind me that I live- I celebrate LIFE!

I have recently relocated back to Albuquerque, New Mexico, my home town.  I have taken a great opportunity for both personal and professional growth.  I now work for a small private prosthetic and orthotic company called Center for Prosthetic and Orthodic Design, (www.centerforpandodesign.com).   I have worked with these guys in the past and I like the fact that they really care about the patient.  Personally, my life has been great so far.  I recently celebrated  3 years of marriage, and it’s been great.  We’ve been thinking about starting a family, and prosthetic designs are being researched.  Ideas have been blooming….it’s been an exciting time.  My email has changed for those who would like to contact me.

B. Judy White, CPO and HD amputee
E-mail: bjudywhite@yahoo.com

 

ARLENE (Wyoming)
I have spent my entire life involved in athletics. Including - all track events, horseback trick riding and barrel racing. I was an expert water skier, perfecting tricks, surfing, pyramids, one leg shoulder stand, and hanging by one leg from a mans shoulders. Unfortunately it was a freak water skiing accident in 1994 which took my whole left leg. ..After eight life threatening days, I survived to the amazement of all the doctors! With a left hip disarticulation, broken arm, teeth; my finger and my ear were almost cut off!  I was 64 at the time and thought I would live the rest of my life doing nothing!!!

I made up my mind I was going to go on and continue with all the volunteer activities I had been doing before, including directing the equestrian drill team, the “Dandies” from the Cheyenne Frontier Days and the scheduling and chaperoning for Miss Rodeo America in Las Vegas (which was coming up in 2 months after my amputation). Yes, I realized I would be handicapped, but I soon figured out a bad attitude is the worst handicap anyone can have.  Following a short course of Rehab with a therapist in Cheyenne, I flew to Las Vegas by myself and got in a rental car, walking with crutches, one leg and a broken arm!

Five months after the accident I went against 3 orthopedic doctors advice not to try a prosthesis, they told me they had never seen anyone “at my age” -64, with a hip disarticulation, be able to adapt to a prostheses. However, a prosthetist named Jo Leal was recommended to me and he made my first new leg.  At first I could not even take a step, even with the help of all around me, but then we went down to the swimming pool.  I put it back on, with a 5 lb. weight on my foot. Instantly I could walk while holding on to Jo, and after 45 minutes…by myself!  It was a terrific help to get the feel of how to move my waist and do the pelvic flip.  Being able to put my weight on the prosthesis without the fear of falling was invaluable.  I wish that more people had the opportunity for the hydrotherapy training.

Jo has retired now and I am going to Kevin Kohler and Mike Pack, both C.P.’s at Artificial Limb Specialist in Phoenix AZ. They are up to date on new components and very understanding and accommodation to all my needs and ideas.

I knew in the beginning I had to talk about it and find some humor in all of this to be able to cope and continue my work with all the young girls. They all helped name my leg Jessabelle, she is very human to me and I depend on her a lot. I tease her and even cry with her! I am so thankful I took the extra effort to get the prosthesis.

I lost my husband to a heart attack in 1997, that loss has been much harder than the loss of my leg. He was so supportive to me, always knew just what to say and do.

I have water skied again since I lost my leg. Didn’t stay up too long, but at least I got back in the water behind the boat! I still ride horses, have to be lifted on the horse. I continue with all of my volunteer projects and keep adding more so I keep very busy! I also swim a mile a day, to keep my leg and arms as strong as I can. I also find it good mental therapy.  I believe that staying in good shape and a good attitude are our most important assets,  and only I can control that!
E-mail: arlene.k@earthlink.net

   

TIM (Wyoming)
In August of 1992 I was diagnosed with a benign osteochondroma located on my lower spine (S-1).  I underwent a lengthy and dangerous surgery in an effort to resect the tumor and retain my leg.  Within 5 years I had a reoccurrence of the tumor and underwent a similar surgery.  The tumor had changed into a malignant chondrosarcoma and reoccurred again one year later.  I was not yet willing to lose my leg and again underwent a limb sparing resection.  The tumor was back within 3 years and in December of 2000 I had a complete hemipelvectomy in an attempt to stop the cancer from spreading.  I was born in Mesa, Arizona and have lived on Guam as well as in Quito Ecuador, Fairhaven Maryland, Vail Colorado and Kimball Nebraska before settling in Torrington Wyoming last year.  I am 36 years old and am married to a beautiful and wonderful woman named Dawn.  We have been blessed with two daughters, Sierra and Britney.  Dawn and I are Burger King franchisees operating two restaurants.

At the time of this writing, I am only 6 months into my new life as an amputee.  Although I am dealing with quite a bit of pain I manage to get around quite well.  I prefer to use forearm crutches and a wheelchair for now, but I am looking forward to trying out a prosthetic leg in the near future.  I give credit for my rapid adjustment to life without ˝ my pelvis and my right leg to the support I received from my family, the people who I have met through this website, my other friends and my church.  My advice to any new HP or HD is to learn as much as you can from the small group of people who have already been there.  I feel truly blessed to have become a member of such a strong and caring group.  I have also gained a lot of strength by getting involved with the Rehabilitation Unit of our local hospital.  As an HP or HD we are very visual examples of what obstacles people can overcome with a strong faith and determination to persevere.  Feel free to contact me at:
E-mail:  forces@bresnan.net

KATYA (Arizona)
My name is Katya, and I am 16 years old.  I actually was born a hemipelvectomy, without my left leg.  I was adopted from Russia by my new family in Tucson in 1992.  I used to hop around all over the place but now I cannot do that seeing how I am bigger and I don't want to put any more stress on my joints.

It hasn't been hard to get used to wearing a prosthesis since I started wearing one when I was 5 years old.  I had a little foot at my hip with one toe, but had that amputated after I came to the US which sure makes wearing a prosthesis much easier.  I've also had a lot of surgeries for some other congenital problems.  I still have phantom pain sometimes which actually can get annoying at times.   My friends don't seem to care that I have one leg.  Some of them are surprised when I come to school without my leg, they think I have two legs....what a laugh!  I attend my local school and participate in all activities including P.E.  I have a 504 Accommodation Plan which allows me to modify certain activities, use the elevator, etc.  I enjoy reading, swimming, and all kinds of crafts, especially bead weaving, knitting and sewing, and I'm an enthusiastic participant in our family's informal, backyard soccer games.

 My current prosthesis consists of an acrylic bucket socket, an Otto Bock, modular, titanium hip joint, an Otto Bock safety knee,  and a Flexfoot Vari-flex  foot.   It has an endoskeleton with a foam cosmetic covering.  We would highly recommend our prosthetist, Danette Larson, who is with Pongratz Orthotics and Prosthetics in Tucson.  Danette has made all of my prostheses, since 1993, and has become a good friend, as well as a trusted professional.

I have been to 2 of the I-CAN meetings and met many of the amputees, a great experience I think.  Anyone is welcome to e-mail and ask me questions.
E-mail: beadmaster4@cox.net

Addendum from Katya's Mom:
We have found a wonderful resource for parents of congenital, or early acquired, amputees in the International Child Amputee Network (I-CAN)
. We also offer our personal support to anyone who needs it, particularly to those with children who have limb differences.
E-mail: momto8kids@cox.net

 
JUNE  (COLORADO)
I became a left hip-disartic on January 5, 1999. I had a benign tumor on my sciatic nerve. I have dealt with this since 1989 with various treatments, i.e. surgery, chemo, radiation, experimental drugs. The tumor finally shrank after my second round of radiation therapy and became dormant. However, due to all the radiation I received my leg withered and became paralyzed, no strength, useless. After moving to Zurich Switzerland (1996-2001) I found that I had to have my hip replaced twice. In order for me to get around I resorted to crutches. My doctor and I decided that if I wanted to walk without crutches I would have to have a leg brace. I went through two different leg braces, the second of which caused a wound on my bum that resulted in an infection.

I spent 7 months in the hospital tethered to an IV stuck in my neck feeding me massive doses of antibiotics. Over a seven-week period during that stay I had six operations to get rid of the infection including one to remove my hip replacement. Needless to say, none of this worked and I finally underwent the amputation.  My amputation surgery went well and I healed nicely. I used prosthesis for about a year but gave up. I experienced a number of recurring infections due to having no tissue between my skin and the ischium (sitting bone). I was hospitalized a number of times for a week at a time over a three year period. Finally in February 2001 I went under the knife again to remove part of the ischium. Since then, I have been trouble free. I do not use a prosthesis as I find for my lifestyle I move more easily and quickly on crutches. I use the LiteStix titanium forearm (cuff) crutches from Thomas Fetterman. My life is back to normal. I garden, cook, make stained glass windows, ride my motorcycle, shop, etc.

Throughout this entire ordeal, my husband has been my saving grace. He is always there for me and encourages me to try new things.
E-mail: junes@meretrx.com

 
MARY (Vail, Colorado)
Mary & Family

Mary and her family

I became a (L) Hemipelvectomy in Jan ‘88 due to osteosarcoma. I’m a full time prosthetic user and walk with no assistive devices. I work full time as a Physical Therapist through Home Health Services. I come from a large family and my dream has always been to have a family of my own. This has not come easy, my first husband couldn’t accept my amputation, and our marriage broke up. Now happily married to my second husband, Paul, I’m the mother of three sons, Benjamin, David and Sebastian.  Life is good. As a full time working Mom and wife, it’s not easy, a lot of work, but more than worth it.  

I was out of my leg during the latter part of my pregnancies, but now I'm back into my old prosthesis. I'm having a new leg made and because of my active professional and personal life and I'm going to try the C-Leg.  I'll let you know how this works out for me.  Meanwhile, I stay in shape by skiing, biking, hiking and trying to keep up with my boys.  I'll be attending the next ACA convention in Boston over the July 4th weekend, and will participate in the gait analysis clinic.
E-mail: mwitt@vail.net

 

DORIE (Montana)
I’m a hemipelvectomy since 1993. I live on a farm and ranch in Montana with my husband Jim. We have 4 children, 3 boys and our baby girl Kateri was born in 1998. She is a blessing. I use a wheelchair at home and forearm crutches outside. I had a leg that I used before my pregnancy, but I’m now in the process of getting a new leg. So far I have a strut for the thigh and a locking knee that I really like. I’m very interested to see what works for others.
E-mail:
jrush@midrivers.com

GABRIELLE (Colorado)
Age 29. I was diagnosed with an osteogenic sarcoma my freshman year at college. Following chemotherapy, I had a left hemipelvectomy 11 years ago and was onto a whole new life. I was told by my doctors that I would never be able to "functionally" use a prosthesis and would have to rely solely on crutches, so initially I did. I just wanted to be "whole" again. Thankfully, I found my way to some excellent prosthetists and received my first leg one year later. I wasn’t expecting much, I believed it would be purely cosmetic, but with determination and practice I learned to walk without any aids and became a very good walker.

My greatest supporter has always been my husband. We had been dating for only 4 months before my diagnosis, but he was there for every trial and tribulation and for every celebration. To him, I am just as beautiful now as I ever was, and he tells me so many times a day. We married and are the proud parents of our son, Addison, now 2 ˝ years old.

After my amputation I returned to college and graduated with a BA in Psychology and went on to receive a Masters in Public Health. I’ve been working in the local health department for 5 years as a Health Education Specialist. Family obligations and work duties keep me busy, but when I have free time I enjoy reading, sewing, gardening and just having fun with my husband and my son. I love to swim, and enjoy downhill skiing. I’ve also tried water skiing, but with a little less luck! Overall, life has been very rewarding!

My first socket was made using a silicone material. Although I’m not very knowledgeable about the mechanics and components, I’ve become a little more vocal. I’ve been offered different materials but I have continued to request the silicone. The 3 other parts of my prosthesis that I could not live without are my adjustable foot, a torque absorber and my rotator which allows me to cross my legs. I wear my leg about 12 hours per day, walk without aids. I don’t use it when I’m at home or our and about with my son. Some things I do better with just the crutches, and handling my son is on of them.

I can honestly say that I rarely think about being different and I definitely don’t think that I’m disabled. I am proud of what I have accomplished and of what I can do. Actually my self esteem is stronger now after my amputation than it has ever been. Not to say that I haven’t had some very down trodden moments. For those of you who are new amputees, let me tell you it does take work to get to this point!!! I wasn’t going to let cancer and the loss of a leg alter my goal to have a happy life.
E-mail: Gvergara@co.weld.co.us
 
My daughter, Adalyn Rose Vergara, was born on February 17, 2000 -- 10 lbs. and 20 inches, normal delivery.  I returned to work 3 months after her birth.

USA - EASTERN REGION
USA - CENTRAL REGION
USA - WEST COAST REGION
EUROPE
CANADA & AUSTRALIA
BILATERAL AMPUTEES & INTERNAL HEMIPELVECTOMIES

 

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This site last updated on 12/1/2003