Betty Thornley

I believe my story is unique, one that would be interesting to all NF survivors and others. It was June of 1999, Bill and I had just retired and planned to sell our lake shore and that along with his 33 years retirement money would allow us to travel as we love the western states and I always wanted to go to Australia and Alaska, and spend lots of time with the grandchildren. Our lives were about to become fun. Wrong. July 1999 everything came down upon us. Our lives changed forever. I was a 20-year EMT (emergency medical technician) on a local ambulance and a 20-year school bus driver, both during the same period. July of 1999, while on vacation, I became ill with a severe stomachache. After a short time, my daughter Tammy discovered I was running a fever and took me to the local hospital in Spooner, Wisconsin. Dr. Goellner discovered a mass on my colon and called in surgeon Reichsteiner. Together they removed a large mason my colon but it was too late as it had already perforated and was draining through my body. They felt that the condition was more than a small hospital could handle and I was flown by helicopter to North Memorial Hospital in Robbinsdale, Minnesota, a suburb of Minneapolis. It was here that my story really starts. Surgeon Ulland immediately diagnosed my illness as "Necrotizing Fasciitis" more commonly known as the "flesh eating disease". My family was at my side as much as possible. Dr. Ulland did my surgeries and Dr. Whitley internist and Dr. Shrock was my medicine doctor. There were many others but these were the major doctors on my case. Dr. Ulland game me 5% chance to survive for the first eight months, always telling my husband, Bill, that everything was being don that could be done but still only 5% chance to survive. I don't remember a lot of what happened as I was in and out of consciousness. I was in hospitals and rehabilitation centers for thirty of the next thirty-six months. I had forty-six surgeries and debredements, over 250 units of blood transfer, and I was on dialysis daily for three months. I had a tracheotomy put in my throat that was later removed. I have an eliostomy bag and a foley catheter, during the surgeries, both of my thighs were cut open, one calf and my stomach cavity and left open for five months so Dr. Ulland could go back each day and remove infected tissue and muscle. During this time in ICU my femoral artery gave way and both times the nurses who applied pressure and got me to surgery where it was repaired saved me. After eight months in the hospital, Dr. Ulland said he had removed all he could; any more removal of body parts would kill me. The infection was still present and at this time Dr. C Kovanda, a young plastic surgeon, came forward and suggested that I be transferred to another hospital and put in a hypo baric chamber which is full of pressurized oxygen like those used by divers that get the bends. I guess full oxygen can kill this bacteria, so it was tried. I had three dives of two hour duration in a twenty-four hour period and it worked. Finally the infection appeared to be gone. Now the job of putting me back together again. Oh yes, my husband Bill, who stayed by my side for the full thirty months, finally got Dr. Ulland to shake his hand and say "it looks like she beat the odds". The flesh and muscle of my left thigh and buttocks was removed to the bone so Dr. Kovanda reconstructed them and closed my other wounds. At one time I had sixteen IV's in me at one time, Dr. Shrock gave me the right meds to help pull me through, and Dr. Whitley held the whole team together, making most of the final decisions. I did lose the use of my legs, as I can't stand or walk. I have a power wheelchair to get around. However mostly I am confined to bed and house, as I am susceptible to infection. I am fed by IV as I have a short small intestine; everything else is gone, so eating orally doesn't give me enough nourishment to survive. I have become diabetic and must take insulin daily. I am on a 24-hour morphine drip for pain plus I take 24 pills a day. The estimate charge to keep me alive is $400 to $500 a day. My total bills were near $7,000,000. All of the hospitals and doctors have been great, as many have written off thousands of dollars as they realize we will never be able to pay them. My neighbors, friends, and family have been wonderful, holding fundraisers and all the prayer vigils in all the area churches, surely helped. I think God simply felt, hey, they want this lady for a while more, so he let me survive. I had three near death experiences, and the local Native American tribe held a meeting (I don't know what they call it) but it worked. On the 5th day, when I was very critical, the Chief proclaimed that an eagle feather be sent to me and that they were releasing three doves to go to the hospital to watch over me. I consider that as Angels to watch over me, whatever it was a strange thing happened that night. My family was told that I probably wouldn't make it through the night, however these doves were released at midnight and by 3 AM I made a turn for the better, so no one will ever convince me that there isn't a supreme being, no matter what shape or color you feel it to be, he is watching over us. I have now been through three rehab centers and five hospitals and am now home. Bill and I had to sell our home of forty years and 100 ft. of lakeshore land to help with the medical bills. I am now on Medicare and Wisconsin medical assistance and am doing pretty well, except I get lazy and don't want to get up or do my exercises, however my granddaughter Heather has moved in with us to help take care of "gramma". I don't know how Bill could make it without her as it is a 36-hour a day job to take care of me. Yes my life has changed but I am still here and I pray I'll be able to see all my grandchildren grow up. Bill and I will celebrate our 46th anniversary, and though we will never go to Alaska or other distant places, it's sure fun to read travel logs and just think of the money we're saving, as if there is anything left anyway. There are so many stories inside of this story that it would take a book to write them, however one that really touched our hearts was, during the fundraising days, I received a card from Spooner, Wisconsin, with no return address. And I opened it, it said, "you don't know me and I don't know you, my name is Wendy and I'm eight years old and want to help" and there was a one-dollar bill enclosed. Needless to say that card and dollar bill was framed and hangs in our home. Another story is that on Christmas day 1000 when I was still very ill, the nurses painted my toenails red for Christmas, and one of the nurse practitioners "Susie" is a friend of Steve Grimm who runs the "Showboat" in Branson, MO and was one of the original New Christy Minstrels. He also performed in "The Odd Couple" and "Who's Afraid of Virginia Wolf". On Christmas day, this man came to my hospital room and sang love songs to me for two hours; This may have had something to do with my recovery also. I could go on and on with my story but only wanted to tell you that, "No matter how bad things may seem, if you keep the faith and don't give up, you can make it." Update: It is now December 6, 2002. I came down with a temperature of 103.4 on Thanksgiving and was rushed to the hospital where it was discovered that I had a severe infection in my blood. The only option was to remove the problem, so my left leg was amputated above the knee. This was very hard to take, but now I realize it could be a blessing in disguise as the infection is gone, there was no damage to my heart as was thought. And my pain appears to be lessening. It is hopeful that my pain will reduce by 70% to 80% and I may end up with a better way of life after all this. Sincerely, Betty Thornley 28645 Crescent Lake Lane Webster, WI 54893 Update April 28, 2003 Betty is back in hospital. Last week she vomited blood and not sure where from or why. Doctors are investigating. Also for a month or so, she has been sleeping 18-20 hours a day and at times can not be woken up. It really scares me. Doctors say its her meds and they must be changed but so far not much improvement. We are concerned for Betty, as it has been a long fight and is not over yet. God Bless. Bill Thornley Update July 27, 2003 Dear Friends, BAD NEWS, We lost Betty today (Sunday, July 27, 2003) at 3:30 as she is now with GOD & will have no more pain and suffering. Betty was one of a kind, "an angel in disguise". She loved life and lived it to the fullest. She touched many people and will be sadly missed by many. She was such a fighter right to the end when she told me, "I have talked with God and I know where I'm going and I'm ready." Being strong willed as she was, she let nature take its course and past away very peacefully with at least 20 friends and family around her. Sincerely, Bill Thornley Link to Betty Thornley's Dedication.