Tom’s Story

Personal Background

I was born in December 1949. My father was a piano tuner and mother was a piano teacher.  She got them out of tune and my dad put them back in tune. I have one younger brother.  Before we were born my father was in the Navy and was a tail gunner in WW II. After the war he was transferred to Alaska and served his remaining time in the Navy as a carpenter building barracks in the Aleutian island chain.  My mother worked in a ship yard during the war in Seattle and was a riveter. My brother and I were born and raised in Amarillo, Texas.  My dad made one of the bedrooms a studio where my mother taught in our home.  She was a stay at home mom and was able to work at home.  My brother and I were raised in a loving musical family. My dad sang in the church choir and mom was a substitute church pianist and organist. We were taught early on about volunteering, helping others, mowing lawns and shoveling snow in the winter.  Looking back I consider myself lucky to have had such supportive and guiding parents.

 

I was married to Jana in 1988 and we have one son.  When he reached 6 years old we decided to home school him.  When he was in the first grade, the aerospace company I worked for spun off the aircraft support group I was in to another company in New Hampshire and I wanted to stay with the original company.   I started looking within the company and found a position as an avionics maintenance field engineer in international programs.  I found a position to support aircraft in Taiwan.  Jana had previously taught grade school and had lived overseas before and knew how to network.  She established relationships with some homeschool groups over the internet before we ever left the US.  We ended up living in Taiwan for 8 years before coming back home.  I could not have done it without her.  I sometimes wonder if living there had anything to do with my current condition. There were many factories and you would hear about liver problems and cancer from airmen  While living in Taiwan we became very active SCUBA divers. In December 2004, we moved back to Texas and in 2013 after 30 years of service, I retired.

Life Changes

I was 55 when we came back from Taiwan in December 2004. The following year we planned a SCUBA diving trip to Bonaire. Before the time came to go I had a gall bladder attack and ended up in the hospital and had to have my gall bladder removed. This was the second time I had been in the hospital.  The first time was in Taiwan where I had kidney stones.  In 2014 we decided to sell our house and move to the Houston area.  It was a lot of work to prepare and de-hoard 30 years of acquiring stuff.  By the summer, I started showing signs of jaundice.  I had a few instances of abdominal pain late spring but didn’t think it was anything serious. On July 13, 2014, Jana, my mother-in-law and our son were looking at me across the table and told me I was yellow.   I had not been feeling good for several weeks and so we went to the Emergency Room at Harris Methodist Hospital in Fort Worth, TX.  I was examined and admitted with a diagnosis of acute pancreatitis, Jaundice, and Elevated LFTs. Dr. Virat Dave (pronounced Dahvay) suspected I had a blocked bile duct. They did a CT scan, Ultrasound, and MRI but could not find any blockage.  For 5 days I was on saline, vitamins and antibiotics intravenously.  The doctor told me this would give my GI system a rest.  After release from the hospital I had to go back every week to the Gastrointestinal doctor (Dr. Dave) for a blood panel test for liver and pancreas.  It took six weeks for the blood tests to return to normal.  After that, I felt much better and we finished getting our house in top shape for viewing and listed it with a realtor. It sold quickly and we rented a storage space and moved most of the stuff in the heat of summer.

Retirement

We moved into an apartment for six months and de-hoarded some more.  While I was still working we bought a 40 year old sail boat and had it trucked to a local lake in Fort Worth.  It needed a lot of work and I worked on it a lot and by the time we sold our house we had moved it down to Clear Lake in the Houston area.  After six months we moved on to Adagio Gul, our sailboat, with our two cats.  We thought we would be cruising within six months but ended up living on the sailboat for two and a half years.  We had to install solar panels, update the navigation instruments and practically refit and upgrade the whole boat.

Changes in Health

In 2017, we gave one of our cars to our son and the other one to my brother.  Our goal was to eventually get down to the Florida Keys but we told everyone ‘Let’s just get to Louisiana’.  In February, I had finished replacing a head gasket on the 4 cylinder diesel engine. It took three months. In January 2017 I had a complete physical and everything was good.  We left May 10, 2017 and missed a weather window to go off shore so we went the Intercostal Water Way (ICWW) instead.  On May 17, we were circling around waiting for a barge to come through the Leland Bowman Lock and ran aground.  I lowered the dinghy and expended a lot of energy trying to kedge Adagio Gul over to pull her off but to no avail.  I wore myself out and put the dinghy back in the davits before dark.  It was real hot that night. This may have been the trigger event to start my CCS plus my eating habits weren’t that good either.  I would boil an egg and put lots of Worcestershire sauce on it. (lots of vinegar) I put Tabasco sauce on everything.  I started noticing about 3 hours after breakfast I would feel like I had hunger pangs and would eat a sandwich or some crackers to make the feeling go away.  Since living on Adagio Gul I would have a cup of strong French press coffee and a cinnamon raisin bagel every morning.  Early the next morning a barge came by and caused waves and lifted Adagio Gul up and down.  We started her up and were able to back into deeper water.  We went through the Leland Bowman Lock May 18th and on through Louisiana. 

 

The locks in New Orleans lifting us up to the Mississippi and down to the other side were very interesting and somewhat stressful.  We went through the Mississippi river in a thunderstorm and while Jana was at the helm I had to go below and add transmission oil to the transmission with the engine running.  When I came up into the cockpit I saw a big log go by and water was swirling and really moving.  Then we hit something and noticed the prop was unbalanced.  We made it to Seabrook Harbor Marina and boatyard late that night and decided to haul out two days later.  Sure enough there was a chunk out of the prop.  We removed the prop and the boat yard sent it out to a prop shop for repair.  The boatyard let us and the cats stay aboard Adagio Gul and since we were not in the water we could not use the AC so it was hot.  After repairs we splashed back in and went into the Mississippi Sound and barrier islands.  On June 25th, 2017 we got to Dauphin Island in Alabama we anchored out in the afternoon and late in the evening the wind changed directions. We had to reset the anchor.  Jana at the helm and I at the bow.  This was one of those times when it took several tries to reset the anchor.  It was midnight and I was very tired by the time we had reset the anchor.  I was puzzled about how tired I was.  We did not sleep very well that night.  The next day we left early and made it to Lulu’s, a marina owned by Jimmy Buffet’s sister.

 

Sailing and cruising is one of our dreams but maybe the stress of the heat and physical exertion may have contributed to the onset of the CCS.

 

Over July 4th, we stayed at Barber Marina.  It was here that we got out our folding bicycles and pedaled 5 miles in 95 degree heat to a small marina for a cheeseburger and a pizza to take back for later.  When we left Barber Marina we left the ICWW at Pensacola and went out into the Gulf of Mexico and cruised overnight and arrived in Panama City the next morning.  We were dog tired and when we got there we tied up, checked in, walked to a small restaurant, had breakfast and came back and crashed.  At breakfast I noticed my taste was blunted and everything tasted the same.  The next day is when I started feeling bad in my stomach. I called my Health Maintenance Organization HMO back in Houston and discovered that the only option they would cover is going to the ER at a local hospital. I waited two days but finally decided I needed to go.  I had lost 12 pounds.  A couple who we became good friends with took us to Gulf Coast Medical Hospital and they checked me for diabetes, heart attack, and did a CT scan.  The ER doctor prescribed Lansoprazole 15mg for 14 days and wrote me a prescription to have an endoscopy.  I felt better on the Lansoprazole but after 14 days the same feeling came back and I had diarrhea.

 

We decided to rent a car and go back to Texas.  My mother-in-law had two empty bedrooms so she let us stay there.  We left the cats with my mother-in-law in Mansfield, TX and drove to Houston to see my primary care doctor.  He sent me to Quest Diagnostics for a blood panel and referred me to a GI doctor for an endoscopy. I had lost 4 more pounds. He prescribed two different antibiotics and 40mg time release omeprazole. The endoscopy appointment was 2 weeks later.  We drove back to Mansfield and two weeks later drove the 250 miles back down to Houston for the endoscopy. I had lost 4 more pounds. Four samples were taken during the endoscopy.  The endoscopy pathology report was negative for H Pylori with marked erosive duodenitis, and inflamed and eroded hyperplastic polyp with no evidence of carcinoma or lymphoma, and chronic esophagitis. We drove back to Mansfield and after evaluation of the endoscopy it was decided I should have a EUS endoscopy. They wanted to look at my pancreas with ultrasound.  It was scheduled for three weeks later. When I showed up for the EUS endoscopy I had lost 6 more pounds. This was a total of 26 pounds. All food had no taste and I was tired all the time and had no stamina.  I noticed a big indentation on my right index finger fingernail and reasoned the distance from the indentation to my cuticle was a time marker for when my condition started.  I noticed my hair was starting to get brittle and thin and the palms of my hands had large freckles under my skin. The doctors called it hyperpigmentation. Other symptoms were toes and fingers tingling at night and just a general tired and weak feeling all over.  The EUS endoscopy diagnosis was Celiac Disease but they sent me to Quest Diagnostics for a celiac blood panel to confirm the diagnosis.  We drove back to Mansfield and waited for blood panel results.  It was negative.

 

At this time Jana and my sister-in-law applied online to Mayo Clinic in Rochester MN and gave the Internal Medicine group details and they sent me a questionnaire. I filled it out and was accepted for a 01 November, 2017 appointment.  The reason for Mayo Clinic was because my mother-in-law had 12 surgeries at Mayo Clinic at Rochester. Jana and her sister traveled with her on a few trips and they experienced first-hand how excellent the patient care was.  We flew there and after a multitude of tests the diagnosis was Cronkhite-Canada Syndrome. The Dermatology department took pictures of my fingernails and took a swab sample from my mouth. The pathology report from that revealed major Candida albicans yeast blooms and they told me that was what was blunting my taste! They prescribed 10mg Clotrimazole anti-yeast lozenges (troches) 3 times daily. After returning home and a week after taking these lozenges my taste returned!  Food started tasting good again. They also gave me two iron infusions because my iron was so low I was borderline anemic.  They started me on a prednisone tapering regimen. It began at 40mg per day, taken first thing when I woke up and each week I would step down 5mg per week. We flew back to Mansfield and I started on the prednisone. I started looking at labels on all foods.  I looked at my blood panel tests and noted what elements and nutrients I was low in and sought out food that had what I needed. It was a big adjustment but I started a food log so I could look back the previous day and determine what produced solid stools and what produced gurgling stomach and diarrhea.  While I was at Mayo Clinic I visited the Barbara Woodward Lips patient education center and read a lot between appointments.  I decided I should try to stop all consumption of alcohol.  One thing that I knew but hadn’t taken seriously was that I was not drinking near enough water.  It is recommended to drink a minimum of 8 glasses of water a day. A glass is 8oz.  It took several days for me to adjust to that amount.  I started eating 5 or 6 times a day. All small meals.  10 minutes before I got up I would take a chewy gummy multivitamin and a chewy gummy calcium-vitamin D.  I think there is better chance of absorption when your saliva mixes with the chewy gummies versus swallowing a pill vitamin. Then I take a 20mg pepcid, 50mg of zinc, and chase it with a glass of water and lie in bed with several pillows propping me up. Then I get up after 10 minutes, weigh myself, heat water, and while it is heating I feed the cats. I put in a bag of green tea (helps reduce inflammation) when the water is boiling and let it steep while I prepare a serving of Cheerios mixed with a serving of All Bran and a serving of raisins. I pour 8oz of 2% milk in the mix and that is breakfast.  Lately I have been adding a banana on the side. I was low in potassium, iron, and calcium. These cereals are fortified with potassium, iron, B6, B12, and many other nutrients. I take my prednisone dose with breakfast.  I try to not have any food two hours before bedtime. Right before bed I take another 20mg pepcid.  After two weeks of carefully planned meals I started gaining weight. My stamina and strength started to return. I started walking and was able to gradually lengthen the walks each week until I was up to 6 to 7 thousand steps a day.

 

The third week in February when I was on 10mg of prednisone per day we flew back up to Rochester for a follow up colonoscopy/endoscopy and the inflammation was much reduced but there were still too many polyps. The next day blood panel revealed my iron levels were two points below the normal range which were much improved.

 

The prednisone tapering regimen plan is when I get down to 5mg per week I will step down in 1mg increments until I get to 0.  If my symptoms return I would let my doctor at Mayo Clinic know and I would be switched over to Imuran which is a trade name for Azathioprine.  I am at 4mg per day per week now and so far so good. I have gained 25 pounds back.  I weigh first thing when I get up in the morning.  I am also taking 20mg Over the Counter OTC Famotidine which is Pepcid when I wake up in the morning and before I go to bed. Sometimes if we go out to eat or plan on eating a spicy meal I will take a Pepcid before the meal.  I’ve stopped all alcohol use and also very spicy foods.  I expect to be on some maintenance medication in the end because CCS is auto immune and the condition will most likely require some medication to keep it in remission.

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