Update June 1996
Update July 1996
Update Dec. 1996
Update, 1 yr. Anniversary, Feb. 1997
Starting non-profit organization!
The story, as written March 1996, two months after it happened:
I went skiing in Steamboat Springs Jan. 24, 1996. That night I got the flu, but felt better around noon the next day. I went skiing the following day (Friday), and again on Saturday. I noticed on Saturday that the back of my arm was sore, it felt the way a muscle feels if you've worked out, and since I had been skiing, I thought nothing of it.
Another thing I noticed was a little cut on my finger Friday when I took my ski glove off for a moment. I remember thinking I needed to get it cleaned and put a band aid on it because fuzz from my glove was getting in it.
Well, I kind of forgot about the cut, until I was out shopping later and did get a band aid for it...but then I never gave that another thought.
The next day the little soreness in my arm was more sore. Then it actually became annoyingly uncomfortable. I commented on it to the other people I was with (it was a ski club trip) and thought it was odd, particularly since my left arm was not hurting too, which would seem logical if it was from exercising the muscles.
Sunday was a miserable day for skiing. I was not feeling confident and told the people I was skiing with that I felt I would get hurt if I stayed on the mountain...a lot of people were giving up that day. Only the diehard or stupid stayed out... so I went back to our condo. By the time I got there I was feeling unusually weak. I was so cold. I took a hot shower and started a fire, then wrapped up in a blanket. I fell asleep for several hours until my condo mates (not sure if they were diehard or stupid) came in from skiing. I felt a little better, had something to eat and we started watching the Super Bowl.
During the fourth quarter I began to really feel ill (and it wasn't because I didn't like Dallas!), like the same flu I had Wednesday night was returning. I began a cycle of vomiting and diarrhea that continued most of the night.
THE TRIP HOME
We were to go home the next day. When I awoke Monday I was so weak and felt so ill I couldn't even pack my own suitcases. The arm had become so painful I made a makeshift sling. I even had my roommate call the condo people to see if I could stay another night because I felt too ill to travel. They said I could stay but I would have to move to another condo. Since my goal was to put off packing or exerting any energy until I felt better I decided that rather than move to another condo I would just travel home.
That was a decision that almost surely saved my life.
People from the ski club handled all my bags for me, including carry on stuff. They helped me onto the bus to the airport, when we got there I just stayed on the bus while everyone else checked in. Eventually they brought a wheelchair and we got to the gate. They gave me a row on the plane so I could lie down. When we landed in Minneapolis I was taken by wheelchair from the plane to a waiting motorized cart. At the gate I found a place to lie down. Unfortunately this flight was full and I had to endure sitting up into Grand Rapids.
Again in Grand Rapids a wheelchair was waiting. We went to baggage where my friend Kevin picked me up. He took me home, put me to bed and I intended to get a doctors appointment Tuesday and have him take me.
Finally about five a.m. I called my friend Linda and told her to come over., I wanted to be at my doctors office the moment they opened, which we did.
AT THE DOCTOR'S
They tried to start an IV and couldn't get a vein after several tries. They also could not get a blood pressure....they sent me (gave me permission actually, since it is a health plan with strict rules) to the emergency room at Blodgett Hospital. (An excellent facility, by the way.)
AT THE HOSPITAL
From the moment I entered the ER I was treated as a very ill person. They eventually got an IV going...in my foot...and began to try and figure out what was wrong with me. My arm was swollen and painful, I was dehydrated, they couldn not get my blood pressure up even with fluids. Still it never entered my mind that my painful arm, the little cut and my "flu" symptoms were related.
Thank goodness the doctors did. They determined I had some kind of severe infection that needed to be fought. They put me in intensive care and began administering a multitude of fluids, antibiotics, blood pressure medicine, etc. The doctor said he thought my system was septic...they put in a central IV in my neck and punctured my lung. I was very sedated at this point. They did a cat scan of my arm, and around 11 pm I remember lying there pissed off because I had to wear the oxygen mask and have a punctured lung when I already felt so lousy........that was January 30
.....that would be the last thing I would remember until I woke up on February 10.
THE 12 DAY SLEEP
Apparently my body crashed about 3 a.m. Jan. 31 and they put me on life support. They called my close friends who had brought me in and told them they were afraid I might not make it.
My sister who lives in North Carolina and is my only family, was called (she had been notified the day before that I was in the hospital) and she began making travel arrangements to come up. She has been a nurse for 22 years so that was helpful.
What I had was caused by a strep type A infection, sometimes dubbed as the "flesh eating disease". It had entered through that little cut in my finger and marched right into the soft tissue of my arm. It features flu-like symptoms as one of its outward signs.
(For a quick definition of necrotizing fasciitis click here. (To return to this page, hit "back" in your browser's header bar.) During my long nap, there were 5 surgeries, one taking a lot of tissue from my arm, one to cut off the finger where the infection entered, one to scrape some fingertips, and to close up the drainage areas from the arm, and finally skin grafting from my thighs to my arm.
When I awoke my poor sister, she is now Saint Judy in my eyes, had to explain everything to me.
Once I did wake up my progress was rapid, the first 2 days I couldn't walk, even with help from 2 people, four feet to a potty chair. Four days later I was taking a long walk down the hall accompanied by just one person for gentle support if I needed it.
AT HOME AND ON THE MEND
They moved me out of intensive care Feb. 12 and discharged me Feb. 18. Friends spent the night for the first two weeks, but now that I've been out of the hospital for over a month I'm pretty much on my own. In fact I went back to aerobics tonight for the first time.
I go to an an occupational therapist to work on my range of motion and build strength in my arm and hand three times a week. And I see someone daily to do dressing changes on my arm. It's pretty well healed now, but it needs to be wrapped to keep down swelling and to manage the scar tissue.
I've been working pretty much full time, although it takes me longer than usual to do everything as my right fingers are still swollen, but it's amazing how well I get along with my left hand and my right hand pinky which is fully functional at this point.
I was extremely lucky to have excellent medical care from the ER doctors, to the nursing staff at Blodgett, to my infectious disease doctor, Dr. Trisenberg, my hand surgeon Dr. Costanza, and my wonderful plastic surgeon Dr. Dennis Hammond. Grand Rapids has some of the best medical care in the country and I thank God I live here.
Due to these professionals, I will be able to make a full physical recovery as all of the tissue they took from the arm was soft tissue. No muscle had to be taken at all. I may or may not get finger prostheses, depending on appearance once the swelling goes down and how I function. The last challenge will be the follow-up surgery on my arm to improve the appearance.
So, that's my story.
Take care more than ever...because this should prove you can't be too careful and that the theory that things only happen to "other people" is false!
June 9, 1996
Things are getting better all the time! I planted four flats of flowers the other day, and have been rollerblading regularly, on about an 8 mile trail.
My scars are fading exceptionally well and my doctor wants to do revision of the scars in the fall.
In a wave of optimism I bought two sleeveless dresses today!
July 19, 1996
This is an exciting time! Sunday I am leaving for New York to get fitted for prosthetic fingers. They are so lifelike it's unbelievable! I will put pictures on the internet when they are done. (It takes about six weeks.)
Everything is contining to improve, except my golf game...that's still just as bad as it ever was...but I CAN golf and that makes me happy.
Last night I was involved in helping put on a concert (Ken Mellons, for any country fans who might be curious), and I was carrying lighting equipment, hanging banners, etc. It's amazing to me how the body heals itself.
There was a little girl at the concert, she was so frail it tore my heart out. She apparently has Cystic Fibrosis and didn't have much time to live. She was skin and bones, had an IV drip going and an oxygen tube in her nose.
All a person has to do is take a look around and it's clear to see "it could always be worse!"
December 29, 1996
It's hard to believe so much time has passed since I last made an entry on this page...I guess that just goes to show how well things are going! By the end of the summer I was biking 90 miles a week and alternating that with rollerblading and aerobics. I just got back from skiing in Colorado for Christmas and it went great. I didn't hurt myself or come home sick...but I did lose a diamond earring. Maybe skiing just isn't meant for me!
I got my prosthesis in September, and they are incredible! I see people who know I lost my fingers and they can't remember which ones are missing.
See what you think!
By the way, the photo at the top of this web page was taken New Year's Eve 1996-97, can you believe there are three prosthetic fingers on the hand holding that glass of champagne?
I had some revisionary surgery done on a scar in November, and afterward my (wonderful) doctor- Dr. Dennis Hammond of Grand Rapids- the same doctor who was involved in my illness from the beginning-- touched my prosthesis and asked if I had any tingling in the tip of that finger! We all had a good laugh over that!
He shouldn't feel too badly, however, because when I met with my infectious disease doctor recently he was inspecting my hand and arm, and remarking how good they looked. I had to remind him of the damage to my fingers because he did not notice the prosthesis.
For more information on the prosthetic fingers, please contact :
March 2, 1997
It's now been over a year since I was in the hospital. It is a reflective time for me as each day when I look at the calendar I think of where I was in my recovery process a year ago.
So much has changed, and all for the better. It is amazing how something like this can change your life in a positive way and make you appreciate even the smallest things. My arm may be scarred, but I have my arm. I may have lost parts of my fingers, but I have fingers. I'm healthy, I'm active, and I'm 100% recovered. I am more active than most people, work out almost daily in aerobics classess and can do pushups using that arm I almost lost a year ago!
People ask how it has changed my life. For one thing it does make me stop and evaluate how I spend my time. I have become constructively selfish, I make sure that what I commit time to is worthwhile. Keeping in touch with friends, taking leisure time I need, not working long hours, getting enough sleep, listening to my mind and body about what my needs are.
I have bailed out of a few volunteer things that were not really satisfying and pciked up new ones that I feel more personally.
I tend to stay calmer in the day to day things that come up. Don't get me wrong, I don't walk around with a halo. I still have my moments of bad temperment, for instance I can still rip off a good line of explicatives at someone who cuts me off in traffic. But my lapses in temperment are shorter, less intense, and very selective. I keep things in perspective more now though and don't let things ruin my day.
Another thing it has changed is that I just marvel at the small things in life and in particular how precious every little function of our bodies can be.
When I was recovering, when I had bandages on four out of five digits on my right hand, doing dressing changes three times a day, one would have thought that hand was pretty much useless.
But because my little pinky was intact, unbandaged, completely unaffected and healthy I was able to do things I couldn't have otherwise done. That little pinky enabled me to hold a piece of bread still to butter it, to hold a piece of paper still so I could try and write on it left handed... to give a little bit of pull in putting on clothing. It allowed me to put in my contact lenses. Who would think that one little thing like your small finger could pick up so much slack when the others quit working? Not me, that's for sure...and I believe that same theory relates to the universe. When one thing falls short, something else generally puts in a little extra effort.
People still ask me if the infection is "all gone". I try to explain that this is the kind of thing that is "all gone" immediately or you die from it. It's not something that can linger and reoccur, the doctors either get it in time or you die, and quickly. It's not like cancer where there are miniscule portions left or affected cells that can regrow. In order for me to have it "come back" I would have to reinjure myself and come in contact with the bacteria again through a new source. That's probably less likely than lightning striking the same place twice.
I'm no more prone to it than anyone else now, no less either.
I have gotten email from so many people because of this page. Some have had loved ones in the hospital at the time they wrote, wondering if they were going to live. Sadly some didn't live, joyously some did.
I have had messages from people doing research, and from others who have survived.
I've had many messages from people who had a kind word to say and an "atta girl" to pass along.
It is with the hope that I will inspire, encourage and educate others that I expose myself so thoroughly on this page.
I may make an occasional update if something or someone moves me to do so, but I believe it is time to close this chapter (the recovery chapter) in my life.
I have four closing remarks I'd like to leave for those readers who have come all the way to the bottom of the page :
1. Always, always, always wash and treat even the smallest abrasion or cut
2. Drop the thought that things only happen to other people, it CAN happen to anyone! (and run, don't walk to the doctor quicker than I did if you suffer symptoms you don't understand!)
3. Do not shun anyone because they have a physical defect, I am the same person I ever was. Losing a little flesh didn't change that. I used to be "afraid" of people who were different. Now I realize we're all as much the same as we are different.
4. Live life to the fullest and don't sweat the small stuff!
April 22, 1997
I mentioned in the last section that I had slowed down on volunteer work and would only do things I felt personally from now on. I am happy to announce that another survivor and I are starting a non-profit organization for the purpose of educating the public and offering support to victims and families of victims associated with necrotizing fasciitis!
If anyone reading this has advice about the non profit sector, starting up etc. please email me.
Also, needless to say, if anyone reading this knows someone who has had this, has had it themselves, or has information that could help us builld a database of information, please contact me.
Through education we can save lives!
In addition, I went to Dr. Hammond today and he things he can do a little more surgery on my arm to make the scaring a little better!
| UPDATE FEBRUARY 2015
So much time has passed, almost 20 years! I remain healthy. Our organization has touched people around the world. We've heard from thousands of survivors, and unfortunately from family of those who have not made it. I feel like what happened to me served a purpose and has shaped me to be the person I am. These days I travel a lot with my standard poodle Gingerella, (who is now 7) competing in agility. I bake cakes and cookies for fun and profit (?) and sell real estate for a living.
Copyright © 1997-2003 National Necrotizing Fasciitis Foundation (NNFF)
All Rights Reserved.
April 23 2006