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Greg’s Story – observations by Margaret.  Gregory Louis Scheul was the eldest child of Lou and Thelma. He was born during WWII in Wollongong and, in fact his father didn’t see his first-born until Greg was nearly 2 years old. Following a good Christian upbringing he became a high school mathematics teacher and was appointed to Blacktown Boys High School which was, at the time, an outer suburb of Sydney. There he met me, a trainee mathematics teacher doing a short stint of practice teaching at his school. The love bug hit and so we married in 1968 and had two gorgeous children, David and Jacqueline. They are now both married and we have four beautiful grandchildren:- Alexander, Amy, Sophie and Jessica.
Wanting to purchase our own home in 1969 at Richmond, we attempted to gain bank finance. Consequently Greg needed to have a medical done to insure our mortgage. At this medical it was discovered that Greg had ridiculously high blood pressure despite him having no physical symptoms of any problem. Thus there followed a huge battery of tests including a kidney biopsy at St Vincents hospital in Sydney. This biopsy showed damage to the kidneys caused by the high blood pressure but gave no clue as to why Greg’s blood pressure was so high. One must assume that there was no sign of amyloid in the kidneys at this stage of his life because the report of this biopsy made no mention of it. The blood pressure was eventually described as “essential hypertension” (in other words the doctors didn’t have a clue as to what was causing the problem) and he was placed on high doses of BP medication. In due course the blood pressure stabilised to an acceptable level. In January 1977 we moved to Warialda (where I still live), a small rural community about 200 kilometres north of Tamworth in northern NSW. Greg had accepted the position of head teacher, mathematics, at the tiny high school in the town. He held this position until his retirement in 2003. For as long as I have known Greg he has always had a cough – in the early days of our marriage, it wasn’t severe but he always coughed. He often had to clear his throat when speaking on the phone, and also when making announcements at school assemblies. I initially put this down to nervousness and also perhaps a bad habit but as the years ticked by, both of these conditions worsened. At about this time he developed a severe skin rash on his hands and feet that plagued him each year during winter despite the application of many different types of cream. In 1989 Greg was bitten on the foot by something. It was never determined what bit him but it made him dreadfully ill necessitating strong antibiotics and a lengthy stay in hospital to save his leg. Later that year Greg had his first bout of extreme lack of energy affecting his stamina. We were caravanning in central Australia and, although he climbed Ayers Rock and walked around it OK, when we were walking in The Olgas a couple of days later, he suddenly lacked any ability to keep up and trailed behind the group. I was really concerned about his health but we put it down to an after-effect of the “spider” bite plus too much on top of the previous few days of physical activity. At about this time, Greg’s blood pressure was found to be very low and eventually his blood pressure medication was ceased. Then his cough got really bad – it was like he was coughing up his toe-nails. He also started snoring to the extent that the whole household was disturbed. In fact in mid-1994, when Greg and I were enjoying our first ever overseas trip, his cough and the snoring had got so bad that I was getting no sleep and was a little irritable as a consequence. In Italy I suggested that he should see the doctor as soon as we got home. This suggestion wasn’t accepted by Greg as he reckoned that his cough was “just his normal allergy to pollens”. He never would accept that he had a snoring problem. His lack of concern for his health was very frustrating. Greg always had what he called “his Japanese bladder” necessitating frequent trips to the toilet both day and night. In 1999 Greg had a TURP operation improving his bladder difficulties slightly. The cough however worsened and by 2000 he was getting at least three severe bouts of bronchitis each year despite always having an annual influenza injection. Greg often needed steroids to recover from the bronchitis attacks. Another health difficulty for Greg was flatulence and loose bowel movements. He often complained about being blown up like a balloon with wind. If he didn’t have at least 3 trips to the toilet every day because of his bowel, things were very unusual - it was often more, much more. In the late 1990’s Greg also complained of a sharp stabbing pain that would attack his side whenever he tried to tie his shoe laces in the morning. He eventually told the doctor and so a colonoscopy and ultrasound of the abdominal area was ordered in 2001. Both proved negative and the diagnosis was an irritable bowel. Greg was told to be careful with what he ate. However it really didn’t matter what he ate, he suffered from flatulence and loose bowel movements so after a while he gave up watching his diet and ate what he wanted. So you can imagine that later, after the amyloidosis treatment had began, and he became badly constipated, that Greg was horrified. Until that time, constipation had just been a word in the dictionary - Greg had never suffered from it in his life before then!! In early February 2001, Greg was again hospitalized with a badly infected leg. Again this was put down to another spider bite even though, this time there was no actual sign of a puncture mark. Greg was dreadfully sick. Sitting by his hospital bedside I could actually watch the line of infection grow up his leg. It was so rapid it scared me. Again he had a cocktail of antibiotics and, following a lengthy stay in hospital and a long time convalescing at home, he returned to work looking a shadow of his former self. He was never really a properly healthy man again. The GP tested and found that Greg was lacking in testosterone – so an under the skin slow release implant was inserted. Greg reckoned he felt much better but I didn’t notice any improvement in his energy levels. In 2002, I had had enough of the coughing and the snoring and so I went in with Greg when he saw our GP. I really think that men are a little like babies, not wanting to accept that there is anything wrong. I quickly discovered that Greg wasn’t giving the poor GP a proper description of his health problems. We soon had a referral to an asthma and breathing specialist. Greg was put onto asthma medication and also, following a diagnosis of severe restrictive sleep apnoea, Greg obtained a breathing machine. Although the machine made a noise, I was able to return to sleeping in the same room as Greg because the noise was constant and it never disrupted my sleeping like his awful snoring and stopping of breathing had done. In mid-2002, I took a group of children to Korea for a language study excursion. Greg and three other teachers came on this trip. It was quite hot in Seoul and this really started to have a bad effect on Greg. He trailed behind the group when we walked anywhere and he was finally forced to admit to himself that his poor health was seriously affecting his ability to do normal things. On our return to Australia, the GP sent him for a heart stress test which he failed in less than a minute. He was sent to Sydney for an angiogram. This test showed that the chambers of his heart were OK and the doctors told him to return to his asthma specialist. Again his asthma medication was changed. Although Greg was getting more rest at night because of the breathing machine, his general health continued to decline. As a consequence, believing that the dreadful stress of teaching was the major reason for his health problems, Greg stopped work in mid-2003, six months before he was due to retire. I had to work the extra 6 months to ensure that I got my own retirement superannuation benefits. In that 6 months, whilst I was working and he was at home, Greg stated that he was going to do heaps of sorting and tidying in his office, in the garden and in his shed. He hardly accomplished any of these things and I would often find him asleep in his chair in the lounge room when I got home from work. In March 2004, we did manage a trip to France and Italy to see our new grandchild who had just been born. During this trip it was obvious that Greg’s health was preventing him from doing many of the things that travelers like to do. He had a really severe bout of bronchitis in October of that year that certainly scared me and even rattled Greg a fair bit. In December, he had a malignant melanoma successfully removed from his back. However his health was still “not right”. Greg started noticing a tingling sensation in his feet, he said that food was tasting extremely funny and he was loosing a lot of weight for no apparent reason. So our GP ordered another battery of blood and urine tests in early February, 2005. These tests indicated that his kidney function was starting to decline and it was obvious that Greg’s asthma was getting worse as well. Following the removal of some of the drugs from Greg’s pharmaceutical regime, the kidney function was retested but instead of an improvement, there was a further decline. It wasn’t until May 2005 that Greg got back to his asthma specialist in Armidale and June that Greg got seen by a renal specialist in Sydney. The asthma specialist changed Greg’s breathing machine to the new style variable pressure machine and this did have a slightly positive effect on his health. The renal specialist just ordered more tests and said for us to return in August. In August, the renal specialist ordered a kidney biopsy and then he went on holidays. So we did the same - going to our beach cottage near Wooli where Greg’s health took a shocking turn for the worse. In fact he collapsed several times and his feet swelled up so that you thought he had elephantitis. The GP at Wooli finally got onto the renal specialist and that was when we got the awful diagnosis – primary AL Amyloidosis - most likely systemic. Of course we had never heard of the disease and the GP had never treated anyone with the condition in all her working career. She did her best to explain the problem and arranged for us to see a haematologist in Sydney in the following week. We therefore rushed to Sydney to see this haematologist on September 28th. She did her best to tell us what this amyloidosis was all about. She gave Greg 2 to 6 months to live without treatment and maybe 1 to 3 years with treatment if it worked. Greg decided to give the treatment a try and he was immediately admitted to hospital. Greg had a pacemaker fitted to his heart (so that his heart could withstand the treatment) and a portocatheter fitted into his chest (for the easy delivery of chemo as this was the only form of treatment that was recommended for Greg because he was so sick). Greg’s treatment was the chemo cocktail, VADs. A mixture of vinkristin, adriamycin and dexamethasone. These drugs were on a 3 week cycle with the vinkristin and the adriamycin being administered by a chemo pump over a 5 day period and the dexamethasone in tablet form being administered on an irregular treatment regime. Unfortunately these drugs had side effects that further exacerbated the effects of Greg’s illness – it affected nerve endings and had a bad effect on his heart. So it was soon obvious that Greg was getting much sicker – even his doctors were shocked at how Greg’s ability to function deteriorated. Was it the amyloid disease rapidly taking control of Greg’s body or was it the drugs making him much worse, very quickly. Who would know? The free lite chain test to check whether the amyloid was coming under control showed that Greg’s condition was slowing but the physical effect on Greg’s body was awful. Fortunately Greg’s mind wasn’t affected at all so he was able to make all the decisions regarding his own treatment. He was in good spirits, very optimistic and full of hope that the treatment would give him some good years in the future. He was fortunately in no pain and had no nausea. His many visitors always commented on how well he looked and how surprised they were considering the awful nature of the disease he had. All I can say is that a hospital blanket can hide a multitude of sins. Greg’s personality was always to be cheerful and to never let anyone other than me know just how scared he was about what was happening to him. The thing that upset him the most was “that his grandchildren won’t remember their Grandpa”. I tried to assure him that I would never let that happen as long as I was alive. Despite his poor health, in mid-November, Greg opted for a third course of treatment. By then, he couldn’t walk at all, he couldn’t wash himself, he couldn’t dress himself, he could only eat food that was finely cut up and he was even starting to even gag on that. His feet were so full of fluid that I was amazed they didn’t burst and his bladder had stopped working altogether necessitating catheterization which, if one was being brutally honest with oneself, was an improvement on the dreadful incontinence that he had suffered since mid-October. It was during the administering of this 3rd course of chemo that Greg’s heart gave up and although the doctors tried to bring him back, after 45 minutes they had to admit defeat. So my lovely Greg left me on the morning of November 24, 2005. So sad for him to be cheated of life at the age of 61, but his life had become so awful that in reality his passing was a blessing. He was no longer suffering the indignaties that he had suffered on a daily basis for the final two months of his life. An autopsy was offered because Greg had previously stated that – should the doctors want to do an autopsy on him – then they might learn something that may be of benefit to others – truly a teacher to the end. The doctors at the hospital accepted the offer and I have recently had an interview with the haematologist where she explained the results to me. To be perfectly frank – poor Greg didn’t stand a chance and the doctors really had no hope in reversing what had already been done to Greg’s body by the amyloid. His body was riddled with the disease. There was no organ of his body – except his brain – that didn’t have amyloid present. Most of the tissue that was examined showed massive amounts of amyloid. In addition to the ravages caused by the amyloidosis, he also had heart and kidney disease as well as thickened arteries. So Greg was an extremely sick man. When did Greg’s health start to suffer as a consequence of amyloidosis? Was it the spider bite? Was it something in the environment? Was he born with it? Only God knows that and at this stage he isn’t revealing what causes the condition. For Greg, having the chemo treatment didn’t help him at all. Maybe the drugs hurried things along a little – who knows. He was so sick in September that I (and the doctor in Wooli) thought he was going to die of a stroke so maybe he did get an extra two months of life even if they were not quality months. However what those two months allowed us was the time to discuss things, to get a few affairs in order and to basically say “goodbye”. It allowed our children, Greg’s elderly father and Greg’s siblings to also come to terms with what was happening and to also say “goodbye”. Although we had all hoped for a little extra time than we actually had, we all knew that what happened was inevitable. I guess, though, that no-one is ever ready for when their spouse dies. I know I wasn’t. The Amyloidosis Australia Organisation was and still is of great assistance and support to me. Knowing that there are others who have “been there, done that” allowed me to reach a form of acceptance prior to Greg’s death. They have helped me grieve and to accept that his death was inevitable considering just how sick he was by the time his condition was diagnosed. I want everyone to know that Ellen Reid’s assistance has been invaluable to me. I thank her sincerely for the assistance she gave to both Greg and to me. I also want to thank all the staff at Concord Hospital in Sydney who treated Greg during his final battle with amyloidosis. They are a really caring group of people. However I do wish to single out Greg’s haematologist, Dr Judith Trotman, who treated Greg as a person and not a disease. She gave him hope when really there was none and she has helped me come to terms with what has happened. A truly professional lady who is a credit to the medical profession. Greg’s story is not a “happy ending” story and for me the effects of the disease continue. Being a widow at 57 was not something that I ever contemplated would happen to me when I walked down the aisle and said “for richer, for poorer, in sickness and in health…” all those years ago. I am going to do my level best to, in Greg’s memory, spread the word about amyloidosis. I firmly believe that it is the GP who has the overall picture of a patient’s health. Our GP searched high and low to find out what was wrong with Greg and I thank him for his dedication over many, many years. However despite all his many skills, this rare disease never came into the picture. Educating the medical profession, particularly GPs, about this disease has to become a priority. It seems that early diagnosis gives the patient the best chance for remission. For Greg the diagnosis of his condition was too late. Yes, do research and find out what is causing it, but also educate the doctors about its existence. Then perhaps there will be less amyloid widows like me. If you have managed to keep reading this far then I would like to applaud your tenacity. I, however, want you to understand that what you have read is just a very small component of what was my Greg. Yes, admittedly what I have written is the aspect of his life that eventually took that life. However there are far more significant stories that I could write about him but this isn’t the proper forum for that. Not wanting to ignore his warts, for like us all, he had his fair share, but he really was a wonderful man. For instance his influence extended to the many lives he touched during his time on earth – the students he taught in a 40 year teaching career, the special students he may not have taught but greatly influenced, the many teachers he mentored, the exchange students he helped through the AFS & Rotary youth programs, the talented science students he encouraged with the Rotary sponsored National Youth Science Forum program for almost 20 years, the community service he did with Apex and then Rotary, his work with the church & the Christian example he set. He was a valued friend to many, a trusted member of the community he lived in, a loving son, a great brother and a wonderful father & grandfather. For me, all I can say is that I miss him terribly because he was my best friend – yes he was my loving husband but more important than that, he was my true soul-mate. In loving memory of a truly great man Gregory Louis Scheul 28th December 1943 – 24th November 2005 Margaret Scheul
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