Sue Ann Smith

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Hugh Thomas Smith “He was so healthy!” “We all want a body like Tom’s!” “How could a healthy man die!” could all be the title of this story as that is exactly, to this day, what people say that knew Tom before his death! My beloved, Tom, age 65, University professor, marathon runner, avid basketball player and 6 days a week weight room fanatic; he did not let down one day on exercise! He was an athlete! We planned out vacations around gyms, sporting events, World Series, the Olympics and tournaments. Tom grew up in Cincinnati, Ohio living adjacent to the University of Cincinnati fieldhouse where he played and enjoyed games of all kinds since he was 5 years old. Tom was my brother’s friend so when I met him the first time, I was in the third grade. We married after he had completed 4 years of college locally and 3 years of military duty in France. We finished undergrad at Cleveland State, then masters at Miami of Ohio, Tom completed courses up to his oral dissertation. Tom’s first English teaching job was in Blanchester, Ohio. Let’s see that would be in 1963. In 2003 after 42 years of marriage, 3 grown children and 5 grandchildren, Tom started experiencing low performance during a 10 mile run. He decided to see our GP and see what might be taking place. We found out right away that he was anemic. His IgM level was elevated. Urine sample said trace protein in the urine. This one trip led to many doctors offices, a heart cath, stress test, echo cardiogram, endoscopy, PET, CAT, colonoscopy, many blood samples and urine samples, urologist, nephrologists – YOU NAME IT WE WENT!! Everyone said he looked just fine – healthy specimen, but bleeding somewhere. Finally we were sent to a hematologist in December 2003; we had mentioned to our GP about going to a hematologist last October. She did a bone marrow biopsy and said he had Waldenstroms Macroglobulenemia on January 8, 2004. Eight weeks of rituxan was scheduled and on # 8, our hemo told us it, the rituxan, for some reason was not working. By this time, Tom’s legs and ankles were swollen and he could hardly get up a flight of stairs. In the emergency room in late March, we were told he had Congestive Heart Failure! What a shock when we were told just months before that by our cardiologist “that you will never have heart problems, your heart is great and healthy”! Tom & I were devastated, shocked, afraid, angry and saddened by his rapid decline. Here is this man who was the picture of health one-day and having congestive heart failure and Waldenstroms cancer the next! We were in Kettering Hospital for 2 weeks in which time Tom was given a kidney biopsy. We were told that it was possible he had amyloids in his kidneys; it took 2 weeks to get the results back from a lab in Cincinnati, why so long, we do not know? We, also, did not know what it meant to have amyloids and NO ONE told us this might be life threatening. We were thinking NOW THEY know what it is so they will be able to fix it and we will get our life back!!! The doctors, including our hematologist at Kettering, wanted us to go to The James Cancer Center in Columbus to see Dr. Pierluigi Porcu who was doing research in Waldenstrom’s so off we went to Columbus. Unbeknownst to me/us this was our last trip in the car together. We went slowly, ate a quiet dinner at a Waffle House on the way and talked of his getting better, of trips we wanted to take, places in Europe we wanted to see, Tom’s current English class at U.D., friends and family we wanted to share with.. Our room at The James was waiting for us. I was to sleep in the same room as Tom, thank G-d. Many tests are performed, x-rays taken, urine samples, blood samples all the time, 24 hour catheter which took 2 tries by nurses that did not work and were terribly painful; they finally got an urologists to do the job!, plasmaphesis many times; port had to be inserted, then a heart biopsy was performed and we were told amyloids were in his kidneys and the heart. Tom & I still thought he could be fixed! We did not think he was going to die! One-week end, around April 20 we were moved to the BMT unit and Tom was put on dialysis as his kidneys had failed. It took about 4 days till Tom said he could not be on that bed forever. He could not go on 3-day dialysis as his heart was only pumping at 45% so this machine was all he had to live! Tom asked me or told me, I am not sure which, if he could have this machine turned off. Dr. Porcu was called and explained to us that Tom would have 48 hours to live if he turned off the machine. I told him, of course, if that is what he wanted that I understood “a person who had been as active as he had would not want to live plugged into a machine and never be able to leave the hospital!!!” So it was done! Why didn’t I object vehemently? We called Tom’s friends and family, colleagues and everyone who knew him came, that could, and said their good-byes. Looking back I was in a fog. This was the “love of my life” going to be gone from me forever? I did not understand and I don’t think he did either; we spent hours just staring at each other in disbelief. He was not afraid to die, although he was not a religious man, he told me it would be harder on me than it was on him. I wish I knew what his world was like now? Tom was an intelligent, humorous, humanitarian, good, kind, gentle, giving, understanding and loving man who loved me, his family and loved to write sci-fi, horror and fantasy for fun – www.turnipsoup.com – is his website build by our son, Scott. Tom died April 30, 2004 in my arms and with his 3 children lying beside him. He was buried in Leesburg, Ohio beside his father on May 3, 2004 just 2 days after my 60th birthday. Not a day goes by when I don’t want to share something with him, ask him something, get his opinion on an issue or look into that lovely bearded face. I miss him so much – there are no words. POSTSCRIPT: I suspect now it was amyloidosis all along that killed Tom. If a Congo red stain had been taken earlier, Tom would probably be alive today, maybe not healthy, but alive. Amyloidosis was not thought of or mentioned till way to late in Tom’s treatment. On November 1, 2004, I buried Tom’s Mom, age 98, along side Tom. Email: turnips@cinci.rr.com I am interested in getting a cure for Amyloidosis which is a protein folding disease that killed my husband. Our story is here: http://www.amyloidosissupport.com/memoriam/Hugh_Thomas_Smith.html www.amyloidosissupport.com for information - Here is some information about Amyloidosis: Amyloidosis is a rare and serious disorder that can affect many organs in the body, including the heart, kidney, liver and nerves. Diagnosis is difficult, because amyloidosis resembles other medical problems. Symptoms can include unexplained weight loss, leg swelling, shortness of breath and fatigue. People with amyloidosis may also have arm and leg numbness, carpal tunnel symptoms, changes in their nails and foamy urine. Swallowing problems can also be a part of the puzzle of amyloidosis. With early diagnosis, amyloidosis can be treated. For more information call toll free 866-404-7539. .. I work about 20 hours a week mailing brochures and posters to doctors around the USA. I talk to people who have the disease and give support and medical doctors names and hospitals that are "amyloidosis centers" to many people... I want a cure! For more information go to www.amyloidosissupport.com . I am a member of BOD of the Amyloidosis Support Groups, Facilitator of the Ohio Support Group and the Michigan Support Grouop, all volunteer of course. .. My main interests are my family - children, Kristi, Scott and Molly (Chayah) and their families, my grandchildren, Steve, Jules, Jessy, Joey, Nechama and Mara Carmel, my father, Glenn Ludwick who is 93, my sisters (2) and my brother (1), my cats, 2 Russian Peterbalds, 6 Orientals and 2 domestics, my 2 English Setters and my computer. I love my cedar sided house in the woods, 4 acres and the critters that go with a farming community (I am in 400 acres of woods) and enjoy the pool and the yard..... go tp www.russianpeterbald.com for some pictures. I love domestic and international travel. I've been to Europe 8 times and visited most countries there, but would go again in a heart beat. I consider myself a global thinker. I love Paris. It is the best city in the world that I've been to so far!!..... .. Last June, I went to the Dominican Republic with my son, daughter in law and granddaughter. We went into the country side and visited a school..... It was very interesting to see what they had AND DID NOT HAVE IN THEIR SCHOOL!!! ... I went to Cancun & Cozamel this May and beginning of June with them again.. We went to an All Inclusive spa ranch....... We went to go into the Mayan country and to see the sights......... .. I've backpacked across France, which took 1 & 1/2 months, hiked the Swiss Alps and boated the Yellow River in China...... In 2005 I taught English in the southwestern part of China, Weifong City. I went to China in July 2007. Don't want to go in 2008 as the Oyympics are there and I hear the polition is terrible. It was when we were there and nothing special was happening. .. In May of 2006, I went to Australia with Muriel, my special friend, and helped to start 4 Amyloidosis Support Groups in Adalaide, Brisbane, Melbourne and Sydney. I work about 20 hours a week mailing brochures and posters to people all over the USA so we can awaken the medical world to amyloidosis. .. Amyloidosis is a protein folding disease that masks itself as many other types of diseases. It is very hard to detect and is usually people are misdiagnosed. People with amyloidosis may also have arm and leg numbness, carpal tunnel symptoms, changes in their nails and foamy urine. Swallowing problems can also be a part of the puzzle of amyloidosis. With early diagnosis, amyloidosis can be treated. For more information call toll free 866-404-7539. A red congo stain under a microscope is the only way to detect amyloid in the body. .. Tom died in the hands of this incidious disease. I miss him on a daily basis. It has been 4 years since he has passed and I love his bearded face and wish I could touch him again....