With a young active family, work commitments, and what not, writing my story has taken longer than I thought it would--but here goes:
I'm a 44 year old married father of three children (11, 8, 5). I am an RN and have worked the last 15 and 1/2 years as a paramedic in NYC. I am currently on a medical leave of absence with the city, in order to complete a year long regimen of laser ablation treatments for Barretts esophagus with high grade dysplasia (more about that later).
I suppose my story starts with my first recollections of abnormal amounts of heartburn and nocturnal reflux. This started to occur in 1986 and progressed over the next several years: Tums was my constant companion. In 1988, I came down with what some docs said was "reactive airway disease." Others called it plain old asthma, and others said I had asthma secondary to bronchitis. Very few docs at that time were aware that asthma and GERD could be associated. In any event, I remained on inhalants for several years before being able to wean myself off them (not too surprisingly, this coincided with better control of my nocturnal reflux).
In 1992, I started on Tagamet. At first, my symptoms responded well to this. But as time went on, I had to take increasing doses of Tagamet to get a small amount of relieve from the heartburn and reflux. In the closing months of 1993, I developed epigastric pain and a pallor, which to my medical training suggested I probably had a bleeding gastric ulcer (medical people are there own worst patients-always coming-up with some diagnosis for which they feel they can treat themselves!).
By Feb. of 1994, I could no longer excuse away my symptoms. The pallor and pain continued -- I was really pale -- and a tiredness was setting in. I had worked really hard between full-time work, part-time college, and an hour commute each way. Add to this the stress of a 3 and 6 year old and a pregnant wife at home! I sure felt I had a right to be tired, but this tiredness went beyond that. I finally made an appointment with my doc. My doc agreed with me that I probably had a bleeding ulcer (I felt vindicated with my own assessment and diagnosis) and did some bloodwork. I returned to her office three days later, to be greeted by a very concerned doc. She asked me how I felt and if I was dizzy or short of breath. I told her I had just spent a half hour digging my car out of the snow and except for some shortness of breath while exerting myself, I felt ok. She told me that my hemoglobin was 7.0 (normal would be around 13 to 17) and that my stool tested very positive for microscopic blood. I was sent directly to a GI doc who promptly set me up for an esophagogastroduodenoscopy (an EGD, or, for the uninitiated, an upper endoscopy).
In the last week of Feb.,1994, I had my EGD. They saw and confirmed a Barrett's esophagus, but saw nothing else! In other words, nothing that would cause bleeding. To make a long story short, I had a colonoscopy 4 days later and was diagnosed with an early colon cancer. After the removal of 12 inches of my colon and the resection of the two ends, I was able to resume my life (it was still early enough, despite my procrastination, to avoid chemo). I spent some time telling this story because it took the combination of symptoms from both diseases to persuade me to see the doc--won't make that mistake again!
Now for the rest of my story involving my esophagus. After my original diagnosis, I had to take increasing doses of Tagamet (1600 mg/day) to get relief. Tried Zantac, Axid, and Pepsid with same result. In 1995, my GI doc put me on Prilosec and Lo and Behold: my symptoms all but disappeared. I supplemented the meds with some changes in diet and lifestyle and felt pretty good.
Life returned to normal, with only the yearly scopes to remind me of the past. I still had an occasional bad night with GERD, but for the most part, 20 mg. of Prilosec kept me in check. Then in March of 98, after a scope, my biopsy came back with low grade dysplasia. For those who don't know, low grade dysplasia is an ominous step towards cancer--not cancer yet--but getting closer! My doc and I both agreed that with today's medical research, there was no reason to sit around and just get a scope every six months until "something" happens. He suggested two possibilities: 1) Photo Dynamic Therapy---you're injected with a light sensitive drug that is taken-up by fast dividing cells in your body. A couple of days later you get scoped and they shine a non-thermal laser at a particular wavelength. The light reacts with the drug within the cells of the esophagus and cause the production of free radicals. This kills the cells. The faster dividing GI cells, especially the abnormal cells, are particularly sensitive to this. The two drawbacks: a) You must spend approximately 30 days out of any direct sunlight or strong lights; b) depending on who does the procedure, you have a 50% chance of developing reoccurring strictures, which would necessitate multiple dilations throughout your life. 2) The other chose would be to have laser ablation therapy. This involves the use of a YAG laser to burn small areas of the affected esophagus. It does not produce strictures, but depending on the size of the area to be treated, it could take quite a few months to complete the therapy, given that only one small area per month can be done. After having a consult with DR. Sydney Cohen of Temple University, a well known expert in the field, I decided to get laser ablation treatments.
As of April, 1999, I have completed 4 laser treatments. The good news is that my 8 cm of Barretts is now only 3 to 4 cm in length. There is no evidence of any high grade dysplasia anymore! However, continued monitoring will be a way of life for me--something I readily accept, given the alternatives.
Once this is all done, there remains a burning issue for me: What to do to continue to guard against any acid assault on my esophagus? Do I stay on 40 mg of Prilosec forever? Or do I consider a fundoplication surgery? Will either one of these choices really make a difference as to my prognosis (after all, I was already on prilosec when I went from just barretts to low grade dysplasia, to high grade dysplasia)? Will the new growth of healthy tissue be more at risk for cancer? I could go on, but I don't want to burden you (and me). Undoubtedly, I will get some of these questions answered. Thanks for reading,