The Beginning.
On Thursday, June 3, 2004, while giving a piano lesson, my husband noticed his left thigh was hurting as if he had bumped into a table. He couldn’t recall doing so, but as he is a diabetic and sometimes he does not realize when he has hurt himself on his feet or legs, he just brushed it off as nothing. By Monday morning, the intensity of pain in his thigh was growing, his knee was beginning to give out on him on occasion, he was very noticeably limping as he walked, and there was a small mass growing just above his left knee on the side of his leg.

Doctor # 1, Misdiagnosis # 1.
We made an appointment at a family doctor for Tuesday, June 8th. He was diagnosed as having tendonitis. The doctor sent him home, told him to put heat and ice on his leg alternating every 20 minutes, and gave him a Vicodin prescription. Donnie opted to take Ibuprofen instead because of the highly addictable reputation Vicodin has. His pain grew more and more intense and by Wednesday evening, he was having much difficulty walking. We are Music Pastors and had a service at 7:00 pm. He cried from pain as he dressed for church and fell walking down the hallway of our home to go to the car. The church had crutches on hand, so I dropped him off at the door and he hobbled in on crutches…we didn’t know “tendonitis” could be so debilitating.

Doctor # 2, Misdiagnosis #2.
Just six days later on Monday, June 14th, we made another appointment at the same clinic since Donnie’s pain had become so much worse and he was incapable of walking or working. We saw a different doctor, (actually it was the first doctor’s father) who also diagnosed Donnie with “acute tendonitis”. He prescribed Naproxen (an anti-inflamatory) and Vicodin for the pain. This time we filled both prescriptions.

Within less than a week, Donnie’s appetite waned to nearly nothing, he had chills and low fevers off and on, occasional vomiting and was staying in bed nearly 24 hours a day. The mass on the side of his knee became larger and the side of his left thigh was swelling. He explained the pain as a deep ache, kind of how an irritating toothache feels, constantly gnawing away with more and more intensity.

Doctor # 3, Misdiagnosis #3.
The doctor we had seen for misdiagnosis # 2 said if the pain continued and became worse he wanted to refer us to an orthopedic doctor. A friend from church who is a chiropractor referred us to an orthopedic friend of his. We saw the orthopedic doctor on Friday, June 18th. They took inconclusive X-rays, bent and poked his leg and then diagnosed him as having a “torn meniscus” behind the knee. The doctor discussed the possibility of taking an MRI to assess the torn meniscus, but suggested that we didn’t take one because it would be $1000.00 we could put towards his surgery and he (the doctor) was 99% certain that it was a torn meniscus and didn’t really feel that an MRI was needed.

Before we left the doctor’s office, I shared a concern of some of our friends. Several of our friends had mentioned the possibility of a blood clot. I told the doctor, I know I’m not a professional and neither are our friends, but could this be a possibility? He had Donnie stand up felt up and down his leg with his hands, said “the blood flow is good, nope, no blood clot here, it’s a torn meniscus.” We were told he needed arthroscopic surgery to have it corrected, otherwise he would just have to live with the pain. We do not have insurance because Donnie has diabetes, his employer does not have a group health plan, I do not work and so I do not have insurance to cover him under, and individual health insurance providers have refused him. The quote for surgery we were given was astronomical to our ears. We were severely distressed and did not know what to do next, because there was no way we could afford surgery.

Doctor # 4, A Step in the Right Direction.
A few days later, I was discussing our situation with our Associate Pastor, and he immediately pulled out the phone book and started calling local doctors for price quotes on the arthroscopic surgery. We found a fantastic orthopedic doctor (actually he is the doctor to the university football players in our area) whose rate was considerably less, and made an appointment with him for Thursday, June 24th.

When we walked into this 4th doctor’s office, 4 weeks after Donnie’s pain began, we received our first glimmer of hope. The doctor did not agree with Doctors’ 1, 2 and 3 diagnoses. He believed all Donnie’s pain, symptoms and presenting was indicative of a possible hematoma. He scheduled an MRI for us for the following day, Friday, June 25th.

The MRI was very painful for Donnie and the evening after the MRI his leg began presenting discoloration for the first time. Before this point it was swelling back and forth across his thigh and the mass was becoming larger and harder. After the MRI, his leg below his left knee began hurting on the back of the calf and small knots started forming behind his calf as well as swelling. The doctor called back on Tuesday, June 29th with the MRI results, confirming the suspected hematoma, a lot of fluid build up and suggested Donnie take med’s to break down the hematoma and eventually clear up the swelling, etc. in his leg. Donnie’s pain once again was considerably worse since the last appointment and so we asked to see him again.

Two days later, on Thursday, July 1st, we had our 2nd appointment with this doctor. When the doctor saw the worsened condition of Donnie’s leg, discoloration, swelling, new knots, etc., he said “there’s nothing more I can do to help you. You need to see a surgeon.” and referred us to a surgeon for the following day.

Doctor # 5, Finally Some Answers.
On Friday, July 2nd, Dr. Wood, a general surgeon, walked into the room where we had been waiting for him, leaned back on the counter, folded his arms and said “You’re sick. You’re septic…you have sepsis all over your body. What’s wrong with you?” (That’s what we wanted to know!) He listened to our story of 4 doctors in 4 weeks, Donnie’s increasing pain, swelling, discoloration, then assessed Donnie’s body from head to toe. Within an hour, he admitted Donnie to the hospital and told us he would be having surgery the following day, that his leg had a hematoma that had abscessed and he needed to drain it. Dr. Wood told us later it was as if he could see inside Donnie’s body and he knew what was wrong.

On Saturday, July 3rd, Dr. Wood saved my husband’s life. After surgery, he told me it would have been a matter of just a couple days and he would have died had he not had surgery.

Over the course of the next 6 weeks Donnie had 7 surgeries total. Five to dibride his left leg from just below his groin to his lower calf, one to perform skin grafts from his right leg to his left leg. And…the 7th surgery was to dibride his right thigh. A few days before he was to come home, Donnie’s right thigh began hurting like his left thigh had begun. The day he was to go home, the doctor ordered a CAT scan of his right leg and found another abscess. We have no idea how it got to his right leg… it didn’t spread from one leg to the other, just showed up as if a “mirror image”. They caught it before it became as bad as his left leg, and sent him home about a week ½ later.

Recovering.
We did not even realize until a follow up appointment 2 ½ weeks after being released from the hospital that NF is what he was diagnosed with. The doctor had written it on the forms after the first surgery, but never verbalized it to us. After finding out what his sickness was, we researched online and discovered this wonderful and terrible website and all the survival stories and memorials and devastations of NF. We know even more so now how very blessed we have been that Donnie survived 4 weeks of NF before even being diagnosed correctly…so many NF stories we read spanned only a few days. Donnie did not suffer renal failure, he retained his leg, and most importantly his life.

We still have no idea what initiated the NF. No open wounds to start, no scratches, no cuts, no recent surgeries before the onset of the NF. He has had to learn to walk again, and of course has a long way to go in recovering completely, but can you ever recover completely from NF? The mental and emotional traumas that he went through were nearly as excruciating as the physical traumas of NF. Altogether NF has changed our lives unexpectedly through the worse for the better. Life has become more precious, priorities have changed, and we have changed. This has been such an awakening experience. We are just so thankful that Donnie is a survivor. I still have a husband, my little boy still has a daddy and my little girl to be born in just a couple of months will be able to know her daddy. Thank you God. Thank you God. Thank you God!

Please note: The following linked images are very graphic and may be upsetting.

Images of Donnie's Experience