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Life Changes Fast – Are You Ready?
Starting at the beginning is always best. On January 1st, New Year’s Day, my finances, woke up not doing well. We assumed it was something from dinner the night before or maybe the flu but his pain was too intense. Long story short, he had appendicitis. He spent 7 days in the hospital and a week at home recovering. He used up all his sick time, personal time, vacation time, in the first month of the year. A nice way to start the new year. He thanked me for saving his life though. If I hadn’t arrived 2 weeks before, he says he might have died in bed with a burst appendix, refusing to go to the hospital.
Rob recovered and we got married in March. Everything was fine, except that his boss kept firing people and giving him their workloads. After duplicating his accounts and threatening to fire him as well, he quit his job in July. After calculating that we have about 4 months of reserves for him to find a new job, I gave him my blessing. He was so stressed all the time and it didn’t help our new marriage. I worked in the mortgage industry and things weren’t great but ok. He did not work again for 22 months. The only good thing that happened during this period was that he lost 60 pounds, walked 6 miles a day and felt healthier than he had in years. Our relationship had its ups and downs but was actually stronger than ever.
The new job was great! The pay was great and the staff small. He was given a lot of responsibility and flexibility. Life was good again although my mortgage business suffered. He was hired in May of 2005. In January 2006, the company sponsored a management conference in Niagara Falls, Canada and when he came home, he thought he had caught a virus; the flu or a cold, nothing to worry about. On Valentine’s Day we went to his favorite restaurant for dinner. After the main course he told me we had to leave, immediately! I was surprised because he loves their desserts. He could not feel his legs from the knees down. He said they felt like they were sleeping. We went home and he went to bed.
The next morning, he stayed in bed all day. I tried several times to get him to go to the doctor without success. He has no memory of that day at all. At 6:30 the next morning, he told me that his arm was now numb as well. I immediately brought him to the hospital where they started doing tests. You know it’s serious when the doctors rush to do exams in the first half hour you’re there. The doctor came in and told us that he talked to a neurologist and that they believe it is one of 3 things: Muscular Sclerosis, Huntington’s Disease, or Guillain-Barre Syndrome. They believed it was Guillain-Barre Syndrome, or GBS, and that they needed to do a spinal tap to be sure. Six needle sticks later, they finally extracted the fluid they needed. The test came back inconclusive. The proteins they were looking for were higher than normal but not as high as they expected. By now, Rob’s tongue was numb and he was having trouble speaking. They decided that they should give him the treatment for GBS and that they would know pretty quickly whether or not they were right.
GBS is an immune system disorder that affects people after having a viral infection. The immune system goes bad and after it kills the virus, it keeps looking for more, so it attacks the nerve endings, generally starting in the legs and arms and moving to the respiratory system. Many people affected by this end up on ventilators, sometimes for months before the treatments turn it around. Some die. Others are treated but have chronic recurrences for the rest of their lives and need treatment every month. Rob was lucky to have it caught so quickly.
They admitted Rob and told him the treatments were IV/IG solution. It was a plasma-type therapy that would run in 12-hour segments, once a day for 4 days. IV/IG is extremely expensive and there was a nationwide shortage at the time. Getting the treatments could cause some problems, but we were told that hospital has 1 1/2 on hand and will soon start requesting the rest from other hospitals in the area. They could locate the rest and could complete his treatment. He felt better and was able to walk in 2 days. After 5 days in the hospital, we went home. The doctors told us that he would have symptoms similar to Chronic Fatigue, maybe for 6 months to a year. We learned later that the residual symptoms can last up to 5 years and may never completely go away. Some of these are tingling in the extremities, loss of balance and coordination, whole body tremors, numbness in the tips of the fingers and toes, slurred speech and difficulty speaking, finding the right words, many that resemble alcoholism or a stroke. Little did we know that February morning that Rob would not be going back to work full time for another 9 months.
Our home life began a new routine. We were still newlyweds and Rob was sleeping up to 20 hours a day, sometimes waking up just long enough to eat, watch some TV, then go back to sleep for another 6-8 hours. This continued until June when suddenly he started vomiting for no reason. He vomited profusely almost every morning and brought up copious amounts of bile. He suffered from diarrhea, abdominal cramps, acid reflux, headaches, tremors and body pain. One morning while we were making love, a rare event in itself those days, he suddenly jumped out of bed and ran to the bathroom to throw up. I didn’t take it personally but knew he needed to do some tests.
We saw our family doctor who agreed that something was wrong and he ordered a bunch of tests: blood tests, 24 hour urine collection, pancreas, enzyme and adrenal gland tests, everything you can imagine. Everything came back negative. We were sent to a gastroenterologist to determine if this was an ulcer. Rob was scheduled for an endoscopy procedure where they put a small camera down your throat into your stomach to see if everything is okay. The initial results told us that there is no ulcer but to return in 30 days when the pathology of some biopsies will be in.
At the end of July, Rob was told that he had Barrett’s Esophagus, a result of acid reflux and that the lining of his esophagus was worn away. When the tissue grew back, it was with intestinal cells instead of esophageal cells, which caused what they call dysplasia. This can be anywhere from mild to severe with severe indicating a cancerous or precancerous stage. Rob’s was harsh. The doctor told him he was lucky they caught it because normally when it gets severe, there’s nothing they can do; that the person cannot swallow and the cancer has invaded the nearby organs. After 4 more endoscopies, they determined that the cancer was most likely contained in the esophagus and that if they removed it, he would be fine. REMOVE HIS ESOPHAGUS?!!? We were stunned.
During this interval between the testing and the diagnosis, Rob was given permission to return to work 24 hours a week, from home. We were very grateful for that because we were starting to feel the pinch financially. Because my main job was so inconsistent, I took a second job that was very stressful and I often worked 9-12 hours a day. Due to his recent illness however, his doctor would not release him to return to 40 hours. He still had difficulty staying awake and focused for more than 4 hours at a time. After the diagnosis, he went to the office and explained to his boss that he needed an operation and that it was scheduled for the end of September, one month away. He would be out for 3-4 weeks. His boss placed him on unpaid medical leave immediately. This was a huge blow. We counted on him continuing to work his 24 hours until the surgery date, but we needed to focus on his surgery. We had no idea what things would be like after that.
Surgery took 9 1/2 hours. They removed his esophagus, disconnected the stomach and extended it to meet the 2 inches of esophagus he had left. So now his stomach was a tube behind his ribcage, and he had a feeding tube in his abdomen. He spent 5 long days in ICU on heavy medication before finally being released to a general floor to finish recovering. After another 4 days, he came home. He was allowed to eat anything he was comfortable swallowing. It was 2 more months before he returned to work full time.
Rob still suffers to some extent to this day, balance and coordination problems, numbness and lack of small motor skills, such as typing on the computer keyboard. Eating is still a challenge a year later. He has learned to eat smaller portions and more often throughout the day but is thankful that he can eat at all. We are both grateful to the doctors who diagnosed him and the speed with which they treated his ailments. Since both of these diseases were completely unforeseen and are not lifestyle or genetic, we were not financially prepared to treat them. His employer continued to carry him on his health insurance and although we did not have disability insurance, we did take out some supplemental hospital insurance after the Guillain-Barre Syndrome occurred. Life changes fast, be prepared.
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