Carolyn Kilcrease

First let me say that I am a 52 year old female and diabetic since March of 1993 (not insulin dependant though). On Wednesday, December 22, 2005, while taking a shower, I noticed a small bump on the left side of my groin area, near my vaginal area. I thought it was a small cyst beginning, which I have had in the past. I showed it to my husband of 32 years and he agreed with me. Being a floral designer and three days before a major holiday, I put off going to the doctor until the holiday passed. On Tuesday, December 27, 2005, I saw one of the doctors in my OB/GYN office and he examined me and agreed that it may have started out as a small cyst, but was now a boil. He put me on the antibiotic Bactrium for seven days and told me to go home and soak in epsom salt baths 6 to 8 times a day and if it was not better in seven days to return to the office. On New Year's Day 2006 my husband was doctoring the area and told me that I needed to see the doctor again because black spots were showing up and that I had several blisters coming up on the left lip of my vagina. With New Year's Day falling on Sunday, the office was closed on that Monday, January 2nd. I called on the 3rd as soon as the office opened and they said come in at 10:15 a.m. The doctor took one look at me and said that I needed to be in the hospital and needed immediate surgery. They contacted a surgeon and the hospital and did a direct admit. By 2:00 p.m. that afternoon, I was in surgery. At 4:30 p.m. the surgeon met with my husband, David, and explained what I had and what they had had to do and that I was still not out of the woods yet. I was put into CICU and remained there for 2 1/2 days. While there, the nurse asked my permission for other nurses to come in when they were changing the packing and explain to them exactly what I had and how it was being treated. I told her to bring them on. If by seeing what was going on with me could save someone from having to endure this nightmare, it would be well worth it. On the afternoon of Friday, January 6th, I was moved to a private room in the hospital. I don't remember much of the next couple of days because of the medication that was given to me for severe depression. I had given up hope and even told my husband how I wanted my funeral done. Which upset him very, very much. The next memory I have is of Tuesday, the 10th, when the doctors met with my husband in my room and looked at the area. We were told then that I would probably be in the hospital for another week or so. To my surprise, on the morning of Thursday, January 12th, the doctors met again in my room and after examining me, they told me if they could get home health care set up, I could go home that day. They were able to do so and at 4:00 p.m. I was being wheeled out of the hospital, headed home, with a catherater. The home health nurse comes once a day and changes the packing and she taught my husband how to do it, so he does it at night. On Thursday, January 26th, I saw the surgeon and he was totally amazed at how well I am healing and removed the catherater. A big relief. I still have a long way to go. After I heal to a certain degree, then I will have to have some re-constructive surgery. We will deal with that when it is time for it. Right now, I just thank God that He has given me another day to live and that His hand is helping me heal. The prayers and the love shown by our Church family and by others has just been over-whelming. This website was so helpful to my husband, David. By him finding it and reading about NF, it was God's way of preparing him for what lay ahead of him. I hope that everyone who reads my story finds it helpful. I just want to get out as soon as I can and educate more people about this horrible disease. So many, just like myself, have no idea that diseases like this exist here in the United States. Everyone that I talk with now, no matter where I am, I tell them...'take no chances, see your doctor immediately!' I know that I will from now on. He may get tired of seeing me!! God Bless and thank you ladies for setting up this website!!