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 Foundation.
My story Began the Friday of Memorial Day Weekend of 2007 with a 104 fever. I am 36 years old, married, 2 kids, work in construction, and very healthly with no family history of illness.
After seeing a doctor, and instructed to go to the emergency room, it was quickly discovered I was critically ill and there was something wrong with my blood. I had pneumonia, and was immediately admitted to the the cardiac care floor since my heart rate was above 120 (80-90 bpm normal). The next day a CT scan was taken, and I was transfered to the Critical Care Unit. I began seeing Uriniary, Pulmonary, Infectious Doctors and of Course Hemologists. Within two days, the Hemotologist noticed the enlarge spleen from the CT scan and suspected something serious.
Due to the holiday weekend, a bone marrow biopasy was scheduled for Tuesday, my 4th day in the hospital. By thursday evening, the my Doctor called me at bed side with the suspected diagnosis and by Friday, it was confirm as HCL. I was grateful of the quick diagnosis, and explanation from the Doctors. I was discharged within 48 hrs, and remained on IV antibiotics for another week to clear up the pneumonia.
The plan was for Cladribine infusion 24 hrs / 7 days as usual, once the all signs of pneumonia was gone. Within 2 weeks and continued follow up with the Hemotolgists, I was re-admitted to Jersey Shore Medical Center to begin the Chemo. Things went very well, there were no fevers and ZERO side effects except bordom. I ate like a pig, the hospital food was actually pretty good! I read, did puzzles, watched Deadliest Catch over and over and listened to my MP3 Player. Family and friends were great, especially my wife Sheri. My father in law sacrified a month of paradise to help with the kids. Thank you Mike. Thanks neighbors for the Care packages.
After 8 days in the hospital, I was discharged, and told to see the doctor in the early AM before all the sick patients arrived since my immune system was now destroyed. The blood work showed a WBC of .1 – next to nothing. I was given a shot of Nuelasta to boost the WBC. Until the counts improved, I needed to avoid any sick people to avoid risk of infection or illness. After being home for 2 days, my fever spiked to 101, and I was re-admitted. This was my lowest point of the ordeal. However, after two more nights in the hospital, the fever broke, and I convinced the doctor I was better off at home. Again on anti-biotics for 10 days, there was no more fever or illness. The side effects of the Nuelasta was the worst – sharp pains in the chest and legs for about 2 weeks.
Three weeks after the chemo., a bone marrow biopsy was take. My bones were to hard to obtain a good enough sample, so only the blood aspiration could be done. The results came back – NO HCL’s. To be sure, another biopssy was done 3 weeks later, again not enough marrow could be had, and a Flow Cytometry test confirmed No more HCL.
During this period the counts stabilized but remained slightly below normal. Not a big deal, things would take time the doctor said. The doctor was right.
All the best to anyone going through the same,
Rich DeGennaro firstname.lastname@example.org
Brick, NJ – USA November, 2006