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Subject: Seven years ago today...
Time: 2:31:00 PM EDT
Author: starlady11
May 13th holds special meaning for the American Hemochromatosis Society, my family and me. It is the day in 1999 that my mother, Josephine Bogie Thomas, died from primary liver cancer due to liver cirrhosis due to hereditary hemochromatosis/HH. She was diagnosed in 1983 with elevated liver enzymes, a percent of saturation of 100% and a serum ferritin of 4,300. At that time, she had already developed cirrhosis of the liver, yet aggressive treatment (106 total bloodlettings during her lifetime), allowed her to live another 16 quality years. Although we were grateful to God for the additional 16 years, we knew that she could have lived longer, had hemochromatosis not been a part of her life, especially since longevity ran in her family.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
My mother’s first symptom was pain in her hip. She went to the doctor who couldn’t understand why it hurt, but suggested that it was “age related” since she was 61 years old at the time. Two years later, during a workup for ovarian cancer, her liver was shown to be filled with iron during a CT scan and a radiologist first suggested that she had “hemochromatosis” in his written report. Despite the comments by the radiologist in his radiology report, not one of my mother’s doctors ever mentioned the disease to her or anyone in our family. Had I not obtained and read my mother’s medical records and read them carefully, I wouldn’t have even seen the word, “hemochromatosis”. However, when I did see it, I wrongly assumed that it was just one of those big, scary sounding medical terms that are actually fairly harmless. Why else would none of the doctors have mentioned it? The answer to that question is probably because the doctors felt that my mother wasn’t going to survive the ovarian cancer, so why bother worrying about the hemochromatosis? The answer to that question is that hemochromatosis is a hereditary disease, and even if my mother was not going to survive the ovarian cancer, her relatives could have benefited from knowing that she had hemochromatosis and gotten tested for it. Instead, we learned about hemochromatosis many months later after my father recognized the word while reading an article in the newspaper. It was at this point, that our family began a more than 20 year journey for knowledge about hereditary hemochromatosis.
After two surgeries and eight months of chemotherapy in 1983-84 for the ovarian cancer, and contrary to what the doctors had predicted, my mother survived the ovarian cancer. The doctors also told us that her faith in God, the support of her family, and our search for the latest information on ovarian cancer, and the more than dozen “second opinions” were all key to her survival.
Once her battle with ovarian cancer was completed, she began her aggressive treatment phase for hemochromatosis. It would take over a year to complete. After that, my mother was treated regularly on her maintenance program and was faithful about regular testing and follow up. She overcame two huge medical hurdles, the ovarian cancer and then advanced stage hereditary hemochromatosis. Her strength and courage during those traumatic times will always be remembered by those who experienced it with her.
After 16 quality years, we thought that hemochromatosis was something that had been conquered. It was in her past, and was under control. However, in early 1998, we noticed her liver enzymes starting to creep up. I brought this to the doctor’s attention immediately, but was told it was nothing to worry about. Naturally, though, I did worry. Unfortunately, after again seeking many opinions and having many screening tests done, the hemochromatosis nightmare unfolded. She apparently had primary liver cancer due to cirrhosis due to hemochromatosis and it was in an advanced stage. We obtained opinions from top liver experts all over the country, and even <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />Japan, but the verdict was basically the same. We were stunned, but remembering the courageous fight against ovarian cancer, and given hope by a couple of leading experts that we might be able to extend her life significantly, we decided to “fight” once again and “go for the brass ring” as my mother had put it so long ago in her battle with ovarian cancer.
In July 1998, we closed up our home in Delray Beach, Florida, and my mother, father, Joe Thomas, boyfriend, David Snyder, and I drove to Pittsburgh, Pennsylvania. There she would see some specialists and to get some special treatments to try to save her life, or at least significantly extend her life. But, further evaluation showed that the primary liver cancer caused by the hereditary hemochromatosis was indeed advanced and inoperable.
Despite nearly a year of treatments (embolizations), medications, and other procedures, the liver cancer progressed mercilessly. She was put in this condition by a treatable and preventable disease. She was in and out of the hospital in early 1999, and spent the entire month of March 1999 in the hospital. I stayed on a cot by her bedside that entire month, giving her the loyalty that she had always shown me during her lifetime. The anger and anguish that I felt was truly profound. I was helpless to do anything as my father and I cared for her during those final months.
After several more months of on and off hospitalizations, she finally went home to die at the apartment we had rented in the North Hills of Pittsburgh. My father, David, and I held our vigil around the clock during those days before her death. I took a tape recorder to her bedside and asked her to record a message. She knew exactly what I meant. Although she had trouble speaking, she clearly left an important message. She said she hoped that everyone would get tested for hemochromatosis so that they would not have to go through what she was going through at that moment. It was a typical unselfish statement by my mother.
On May 13th, a beautiful spring afternoon, with the leaves budding on the trees and a light misty rain falling, I watched my mother slip away into the next world. The window to my parents’ room opened out onto a wondrous view of the mountains, and a fog rose from the ground and floated like a ghost down the mountainside. It was an amazing sight I’ll never forget as I held my mother’s limp hand in mine. I held it so tightly, that it felt as if there were a pulse, but it was only my own pulse that I felt, not hers. All of her suffering was over, but the renewed fight to increase awareness about hemochromatosis was just beginning for me.
Now, seven years later, we still hear from patients almost on a daily basis who are seriously ill or dying from this disease or family members informing us of a death in their family from hemochromatosis. It is inexcusable. Often it seems that very little has changed in the way of public awareness or physician education in the last seven years, but I know that has improved during this time; it's just that there are still so many people needlessly dying, as my mother did, of this disease.
On Saturday, May 13th, 2006, several newspapers around the country will carry memorial notices about my mother, Josephine Bogie Thomas. These notices of remembrance urge the public to contact AHS for more information. If you subscribe to or read any of these newspapers (or visit them online), I would appreciate your cutting out the notice, and showing it to your family members, friends, and/or mailing a copy to me. The newspapers are:
Mt. Sterling Advocate (Mt. Sterling, Kentucky) (This is the town she was born). The ad appeared will appear on May 11th, 2006 (this is a weekly newspaper).
Louisville Courier Journal (Louisville, Kentucky) (this is where she lived during her teens and where she met and married my dad).
Boca Raton News (Boca Raton, Florida) (To appear in May 12th edition) She lived in Delray Beach for more than three decades and these newspapers, Palm Beach Post, Boca
Raton News, and Palm Beach Daily News cover this area.
Palm Beach Post (West Palm Beach, Florida)
Palm Beach Daily News (Palm Beach, Florida)
Orlando Sentinel (Orlando, Florida) (this is where the American Hemochromatosis Society headquarters are located now)
Pittsburgh Tribune Review (Pittsburgh, Pennsylvania) (She went to Pittsburgh to get treatment for her primary liver cancer and this is where she died).
Pittsburgh Post Gazette (Pittsburgh, Pennsylvania)
To see our memorial notice on our web site, please go to: www.americanhs.org
I always tell everyone, don't thank me for the work I do with the American Hemochromatosis Society, thank my mother, because she was the one who was sogiving, caring, and helpful to everyone. She was the one who set an example for me. She was the one who always tried to find a way to help people with their problems, whatever those problems might have been. She was a person of hope, of vision, and of courage. And, she was the kind of person who inspired those qualities in others.
Yes, she was my inspiration for founding the American Hemochromatosis Society (AHS) in 1998. And, she has been the guiding light for my work every day since then.
Sandra Thomas, President/Founder, American Hemochromatosis Society
Email: mail@americanhs.org
Web site: www.americanhs.org
Office: 407-829-4488
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