This is a blog about my son, Jim, and his experiences as a lung transplant candidate. My wife, Maggie, started the blog in August 2005 when Jim told us something was wrong with his lungs. What happened to his lungs and to our family is a long story that started in March 1996.
For a couple of weeks prior to March 12, 1996 Jim and I had been suffering with a cold. Jim’s mom, Kathy, took him to the doctor who diagnosed him with a bad case of bronchitis. In a few days my cold went away, but Jim’s cold seemed to get worse until he wasn’t able to lie down at night. We called the doctor who told us that Jim needed to go have an x-ray at the Virginia Baptist Hospital . I picked Jim up at work and took him to the hospital and within an hour it became clear that something was wrong. The doctor told Jim and I to go to another hospital in town to meet with another doctor. I called Kathy and asked her to meet us at the other hospital because I felt there was something terribly wrong. We all arrived at Lynchburg General Hospital about the same time.
The doctor told the three of us that a mass was detected on the x-ray and while examining Jim the doctor could feel bumps in the lymph nodes around his neck. First they inserted large needles through Jim’s back to drain two liters of fluid around his lungs. Jim was coughing like crazy and had to learn to breath again in the ICU. That evening an even more pressing problem needed to be dealt with immediately: fluid around Jim’s heart that might stop his heart from beating. The doctor said that an emergency procedure to drain the fluid would have to be performed by a cardiologist immediately and that Jim might not live through the night. Over a liter of fluid was drained from around Jim’s heart in the next 2 hours.
Over the next 24 hours Kathy, Jim and I were told that Jim had lymphoma and would be transferred to the University of Virginia medical center in Charlottesville, Virginia. Within a few days we learned from Dr. Michael Williams that Jim had t-cell lymphoblastic lymphoma, a rare and extremely aggressive form of non-Hodgkin’s lymphoma. Jim was started on chemotherapy within days and his first stay in the hospital lasted six weeks.
Kathy started feeling ill almost immediately after the news about Jim. We consulted with the doctor who gave her medicine and speculated that her high blood pressure was the result of the shocking news about Jim. When medicine was unable to control her blood pressure Kathy went to the University of Virginia emergency room where Jim was a patient on the sixth floor. Over the next few days a number of tests were conducted on Kathy and a variety of benign ailments were ruled out.
On March 26th, just two weeks after the news about Jim, we learned from Dr. Alan Dalkin that Kathy had a large tumor on her adrenal gland. Within a few days Kathy had surgery to remove the tumor. Kathy had such a rare form of adrenal cancer that it took weeks to diagnose it as “producing” adrenal cancer. This was a cancer that was causing her adrenal gland to produce massive amounts of adrenal hormones. There are only five cases of non-producing adrenal cancer (when the adrenal gland stops producing hormones) in the US each year and practically no cases of producing adrenal cancer. There was no treatment for Kathy’s cancer and she died at home on August 25, 1996.
Jim’s chemotherapy lasted for nine months, and in December 1996 Jim was declared cancer-free. Jim took a job in New Hampshire with an Internet start up. At the beginning of June he moved to Boston and took an apartment within a mile of Harvard’s teaching hospital, Brigham and Women’s . This would ultimately be a decision that would save his life, again. By the end of June he was in the hospital.
In July, 1997, Jim was diagnosed with acute lymphoblastic leukemia (ALL). When the cancer moved from his lymphatic system to his blood stream its name changed to leukemia. Jim was treated by Dr. David Fisher at the Dana Farber Cancer Institute and that ultimately led to a bone marrow transplant in November 1997. Jim has been cancer-free to this day.
From December 1996 to the present Jim has accomplished many amazing things. These things include being involved in at least three different internet startup companies and involved in making three documentary films. Jim has always seized every opportunity and has been willing to take risks. I have always been proud of “the big guy”. I often remember what Jim’s first oncology doctor at the University of Virginia told me when I asked him one day, “What should Jim be allowed to do?”. He simply responded, “Anything that he feels like.” It was great advice.
About seven years after his bone marrow transplant Jim’s lung capacity started to slowly decrease until it became difficult to climb a flight of stairs or take a shower. In August 2005 Jim went to see a pulmonary doctor who ran many tests and sent him for a lung biopsy. On September 6, 2005 Jim was told that his lungs were so damaged from his cancer treatments that he would need a lung transplant. His official diagnosis is post-radiation fibrosis. We were astonished to learn that this late onset fibrosis, according to Jim’s doctor at UCLA, has only occurred about 50 times before worldwide.
Thanks for checking on Jim.
Dad
Sunday October 23, 2005
