Submissions to "Patients' Stories" cannot be verified for their accuracy.  They do not necessarily represent validated medical research.  The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation.

Hello, My name is Bobby Kimbrell and I am 53 years old.  Eleven years ago is when my story began.  At the end of 1994 I started to become sick.  I had a general feeling that something just wasn't right.  I began to have severe episodes of nausea and vomiting every morning which would subside by the middle of the day.  I went to my doctor and he sent me to an ENT who diagnosed me with Meniere's Syndrome which is an affliction of the inner ear in which fluid becomes trapped behind the eardrum and results in the dizziness and nausea and vomiting that I was experiencing.  He put me on medication to control the symptoms which did help some.  At the time I became ill I was working in a strip mine in Parrish, Alabama as an oiler on a dragline.  Doing this job exposed me to large quantities of methonols, ethanols, gasolines, and benzene.  This was a UMWA mine but the only protection afforded me to prevent my exposure was a paper jump suit.  Inadequate to say the least. 

To continue with my story, as I said I still suffered from a feeling that something just wasn't right.  Several months went by with me continuing to have these bouts of nausea and vomiting and dizziness which were accounted to the Meniere's.  My wife who is a nurse was going to college in search of her BSN.  I kept telling her something was wrong but because she was going to school and working full time she had little time to pay attention to what was happening to me or make me an appointment.  In her defense she deal tell me if something was wrong and if I felt I needed to go to the doctor to make myself an appointment and she would arrange to go with me.  Well as men are I never made the appointment.  The week of October 21,1995 my wife and I were in court on an unrelated situation.  While sitting in the courtroom I could tell something serious was happening to me.  I began to have flu like symptoms of a runny nose, cough and general malaise.  I returned to work on Friday October 26, 1995 and worked a 12 hour shift from 7 am until 7 pm.  When I crawled out of my pick-up and went into the house it was all I could do to make it to my recliner.  My wife was also working a 12 hour shift.  When she came in at 8p.m. she found me sitting in my chair in a dark room.  I told her when she came into the door that I was very sick.  When she turned on the light she was shocked to see the entire right side of my face swollen beyond recognition.  We have what is called an after-hours clinic in the local area so she took me to that clinic.  The doctor there said that something was very wrong with my blood work and I should follow up with my family doctor as soon as possible.  The next morning on October 27, 1995 after not sleeping any the night before my wife carried me to the local hospital, thus beginning my trip through hell.

I spent 8 days in the local hospital having multiple tests conducted.  The E.R. doctor told us it could be end stage AIDS when he admitted me but to both of our relief the AIDS test they did on Saturday came back negative.  Although this was a good thing we still did not know what was going on with me.  An oncologist from an affluent hospital in Birmingham, Alabama was consulted on Monday Oct 30,1995.  He only visited once a week on Monday so I only seen him for a short time on Monday but a bone marrow biopsy was done to determine what was causing my pancytopenia, thrombocytopenia, leukocytopenia and anemia.  I would not get those results until the end of the week.  My oncologist diagnosed me with unspecific aplastic anemia.  On Monday November 6, 1995 I was transferred to the larger affiliated hospital in Birmingham where I stayed for a total of 36 days in both hospitals.  I don't remember much about that time period because I was so acutely ill.  I only know what my wife has told me.  I was kept on a Dilaudid drip to help alleviate the pain in my head and sinuses.  An entire team of physicians were assigned to my case.  This team were the best doctors that facility had to offer.  Of course, my oncologist remained on the case to treat the blood dyscrasias. One of the best ENTs medicine has to offer was assigned to treat my sinus infection and face.  The head of the Infection Control team was assigned to deal with the multiple infections that was happening to my body.  A surgeon was assigned to place a Groshong for infusion of medications and I was placed on  the oncology floor where a team of nurses certified in cancer therapy cared for my every need.  This was one of the finest teams of nurses I have ever encountered.  My oncologist who also was an internal medicine doctor managed my diabetes.

After carrying me to surgery and doing a moderate debridement of my sinus by the ENT it was determined by the Infection Control team that the what was in my sinus was mucormycosis which is a very deadly fungal infection.  This infection was allowed to take hold because of my wickened immune system.  It was imperative that I have a radical debridement of my frontal and ethnoid sinuses  but the problem was my WBCs and platelets were to low to go to surgery.  I had been placed on Epogen and Leupogen injections twice a day to help stimulate my bone marrow.  The first aspiration revealed that my marrow was continuing to develop blood cells but something was killing them as they entered my blood stream now the current aspiration revealed complete marrow shutdown.  If I had to have surgery a window of opportunity had to be found.  I had daily CTs of my sinuses and continued antibiotic and antifungal therapy.  Finally 2 weeks after the first surgery I was taken to surgery again for a radical debridement.  My wife was told that there was no way to determine how much surgery would be needed.  I went in not knowing what my appearance would be when I came out.  My ENT did my surgery.  He performed an unbelievable breakthrough surgery.  He created an incision from the outer edge of the upper side of my eyebrow along the top of my eyebrow down to the inner canthus of my eye along the lower ridge of my nose around the nare down the middle of my upper lip along the top of my lip to the outside edge of my lip.  After making this incision he literally "peeled" my face away.  He had no experience to draw on because he had never had a patient live with this fungal infection.  After removing the musculature and bony structures around my eye he scrapped the sinuses above and below my eye to make sure all of the fungus had been removed.  Afterwards he restructured my orbital area using a mesh material.  After he felt he had done all he could do he replaced the skin he had peeled away and put my face back as it should have been.  It has been eleven years and if I don't tell you I've had surgery you would not know it.  No scarring is visible since he followed by natural facial contours.  I was then placed on a drug called Amphotericin B.  I had violent reactions to this drug but since this was the only drug to effectively treat my infection it was imperative I take it.  I went home 2 weeks before Christmas to enjoy what was believed to be my last Christmas. 

I continued on the Amphotericin B for another 4 months until the Infection Control doctor felt that all the fungus had been eradicated.  It was at this time that my oncologist discontinued all my blood builders to see if the infection and antifungal were the cause of bone marrow dysplasia or if something else was the cause.  After being off the blood builders a mere two weeks I ended up back in the hospital on the bone marrow unit with dangerously low levels of WBCs, RBCs, and platelets.  It was at this time we were approached for bone marrow transplantation.  All my children, my mother and all my relatives in my area were tested as well as sending kits to my brother in Arizona and family members in Detroit.  It was determined my oldest daughter was a perfect match matching 4 of the 6 markers.  The only thing closer is a twin.  Plans were put in place for the transplantation.  I was sent to another oncologist that specialized in bone marrow transplantation.  My wife and I returned to his office with my daughter for final preparation and a date was set for me to enter the hospital for transplantation.  While there my primary oncologist called us to his office.  The pre-transplantation aspiration had revealed to him that instead of having aplastic anemia I did indeed have Hairy Celled Leukemia.  It had been impossible to detect earlier because my WBC count was to low to detect the hairy shaped cells indicative of Hairy Celled Leukemia. 

Instead of going into the hospital for a bone marrow transplantation I entered the hospital on the 6th day of July 1996 to begin a chemotherapy treatment with a then still experimental drug called Leustatin.  I spent 26 excruciating days of misery while my body was poisoned to rid itself of the malignant cells and repair my bone marrow.  I walked hand in hand with death that July but on August 1 1996 I emerged from that pit of hell.  I reentered the hospital on September 13th, 1996 to start my second round of chemotherapy.  I finished the last bag at 6:00p.m. on September 26th, 1996.  After having my central line removed I left the hospital at 7:00p.m. on that beautiful September day and have not returned for that illness. 

Truly God has richly blessed me and I have spent the last 10 years telling others my story and how lucky I am.  Oh I still have problems.  My diabetes seldom stays controlled and in 2000 I had a mild stroke which God also blessed me to return back 95% function.  I just happened on your site this morning and felt the need to tell my story for it is one of true miracles.  That hot day in June of 1995 when we had visited the transplantation doctor I told my wife that I did not feel as if a transplantation would be needed although she continued planning and implementing getting it done.  When had already returned to our call when she received the call on her car phone to return to the office.  She pulled me under the canopy that covers the front of the office building that housed my physicians.  She left me sitting in the car there while she went up to see what was so important.  They told her they needed to see me.  She explained she had left me out front in the car and that she would have to park and bring me up.  God had already let me know what was going on so even though it had been almost a year since I had driven I got under the wheel and parked the car.  When she descended from the elevator I was sitting in the lobby of the building waiting on her.  I had had to sit down and rest a while before entering the elevator.  She asked me what was I doing there and I told her I knew he needed to talk with me.  We went upstairs together to meet with my oncologist.  It was at this time he told us I would need no transplant at that time that my diagnosis was changed. 

Two papers were published in JAMA concerning my surgery and treatment of mucormycosis.  Now this dreaded disease does not necessarily mean death or disfigurement.  I was in the pilot program for Leustatin so now there is a definitive treatment for Hairy Celled Leukemia.  Up until this time treatment was Interferon or splenectomy both of which had mixed reviews of success.  I still have my spleen and I have been cancer free for 10 years.  I know God allows certain souls to go through this tunnels so that treatment can be discovered for others and although I don't know why he chose me I am glad that my wife and I were able to supply information that could help others.  Ten years ago when my wife went online in search of answers there were none.  She only got a mere 2 hits.  How glorious it felt today to see 196,000 hits.  God truly is good.

Sincerely,

Bobby Joe Kimbrell       December, 2006