Karlene's NF Survivor Story

In 2003, I had NF in my upper left thigh. I believe I acquired it in the hospital after surgery. I was in a car accident in May, had the neck/spinal cord surgery near the end of September, and then got NF during the first part of November. I had to be transported from our local hospital to a larger facility (Mayo Clinic) in Rochester, MN. I woke up once on the helicopter, but don't remember much after that. I do remember asking a doctor if I was going to lose my leg. I think he said not if he could help it. I don't remember much after going in for debridement surgery. It was days before I woke up again. My hubby and children tell me it was over two weeks, but it seemed like a few days to me.

The surgeons cut me all the way down to the muscle. The resulting wound was 22" L x 6" W and about 5-6" deep. I am a large person, so had a lot of fat to cut through. I remember getting up to take a shower (I had to have assistance) and the dressing dropping off. When I saw my leg for the first time, I almost fainted. I cried and cried. It was so ugly! When I got out of the shower I was in tears and as pale as a ghost, so I tried to get my mind off it by opening the mail my hubby had brought to me the day before. In the mail was a postal slip, dated the day I was flown to Rochester. The slip was for a registered letter that needed to be picked up and signed for. Right behind the slip was the letter my hubby had picked up.

The letter was from my employer, who fired me! I fell apart! I was so shocked I didn't know what to do. I called, but the bank president refused to talk to me over the phone! I tried to explain I was in the hospital and she said she knew from overhearing some teller's talking about my condition. I got NF and lost my job and a lot more. Because I was off work from the car accident they had to pay me long term disability and I also got Social Security Disability. Its nothing compared to what I made working, but it's something. There is a case pending against the guy who let his drunk friends take his car (without a drivers license) that ran into me. We've also tried to tie the NF to the accident, but can't get any doctors to say they agree.

I have a lot of swelling in my whole left leg. It's about 3-4 times bigger then my right leg. I have gone to Lymphedema clinics and other therapies but nothing seems to work. I walk with a cane and sometimes a walker. I gained over 100 pounds during the first two years and have been working on getting that, plus more, off. So far I have reached a little over 75 pounds off. I go to a weight doctor and am on a 1400 calorie diet, but it's so hard! I was also told that my immune system is impaired, so I catch everything going around. Its hard for me to fight off any infections. I have had several boils (all in the area of my NF site) and it always scares me. When all this started, my leg only looked like it had a pimple or small boil, but turned into NF.

I had the best doctor and surgeon anyone could ask for, but the nursing staff were quite different. I did have one wonderful nurse at the hospital here in town and she, still to this day, hugs me and ask how I am doing when I see her. The other nurses who took care of me were okay. One of the night nurses was really wonderful, too, but we graduated together.

My Dad was also ill at the time and his surgeon was an ass, excuse my language, but he was. My Dad had been sick with a knee infection and was in the hospital. His nurses told his surgeon I "have NF" (not that I had it, but that I have it) and he banned me from the hospital. Both my Dad and I cried that I was not allowed to visit him. We talked and cried everyday on the phone. My doctor also happened to be my Dad's doctor, and he was so upset that he went in and argued with the surgeon. But, the surgeon was the one who had the say in it, so I remained banned. This wasn't in Rochester, this was at our local hospital. I was scared to death when they put my Dad in a nursing home. I feared they also wouldn't allow me to visit, but they did, and they were not worried since it was okay with my doctor.

Wow, I just typed away and didn't realize how long this email is. I don't usually open up to a lot of others about all this. But it felt right, so I opened up to you. Well, I should go and get myself busy before I am too worn out to accomplish much for the day. Take care.

Survivor story by Karlene, February 19, 2006. Used by permission. Editing and page by Doreen.


It is with a heavy heart that I must inform you that my dear friend, Karlene Langan, has died. She was 46. Karlene was an NF Survivor since November 7, 2003. She passed away Wednesday, August 22, 2007. My heartfelt condolences to her husband (Mike), her daughter (Shannon), her son (Dakota) and the rest of her family and friends. Here's the address of her MySpace page. Her daughter will be keeping it online as a tribute to her Mom. Feel free to go there and post your condolences, if you would like to: http://www.myspace.com/kklangan

KARLENE, WE SHARED SO MANY EMAILS, I FELT AS IF I KNEW YOU PERSONALLY. WE SHARED SO MUCH: OUR SURVIVAL STORIES, BEING THE SAME AGE, HAVING HAD THE SAME ILLNESS. I WILL MISS YOU MY DEAR, SWEET FRIEND. YOU HAVE YOUR WINGS NOW AND I KNOW YOU WILL USE THEM WELL, AS YOU WERE ALREADY AN ANGEL HERE ON EARTH. -DOREEN


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