Most of my working life was associated with the printing industry. I was apprenticed to printing way back in 1962. I then worked as a printer and later as a teacher in vocational education at the School of Printing and Graphic Arts in Sydney, Australia. Over a period of forty odd years, I worked in close contact with a large variety of hydrocarbon-based solvents, a known cause of bone marrow failure conditions. In June 2004 at the age of 58, I took a voluntary redundancy. Eighteen months late, I was diagnosed with what at the time was thought to be aplastic anemia.
In 2006 I was working on a couple of landscaping projects at home, when I noticed that I was getting dizzy when I stood up too quickly and my energy levels seemed to be down a bit. My GP sent me off for a blood test and this revealed that my red cell and platelet counts were a little low. I think I was prescribed iron tablets, however over the next few weeks my dizziness and lack of energy seemed to be worsening. More extensive blood tests followed and then it was off to a hematologist. Over the next few months, my reds, whites, and platelets all started to fall. I then had several core samples taken from my pelvis, but unfortunately, these samples did not contain enough cells for a conclusive diagnosis of my condition to be made. I still remember the day that I was told that I had a bone marrow failure disease, and it looked likely that I was suffering from aplastic anemia. I recall thinking to myself, thank heavens it’s not cancer.
I then emailed my brother-in-law, who lectured in Medicine at Oxford University. He is highly intelligent, but he must have skipped the “bedside manner” lecture when he was doing his medical degree. He left me in no doubt that what I had was a life-threatening disease. Over the following weeks my blood counts continued to fall further. I was getting nose bleeds and specks of blood appeared on my skin. Not long after this, I was informed that unless I had treatment, I probably had from 6 months to a maximum of two years to live. I was now 60 years old and in Australia at the time, it was considered too old for a transplant; especially since I had no siblings. My hematologist said that she would like talk to her fellow colleagues about treatment options. Unfortunately, all the opinions differed, so it was up to me to decide what option I wished to go with. My hematologist was relatively young and seemed switched on and so I decided to go with her preferred treatment. Around about this time I became aware of the Aplastic Anemia and MDS International Foundation. I recall wanting to know about the disease and treatment options, but also not wanting to know too much about things like life expectancy and the chances of surviving.
It was around June of 2007 that I finally had treatment for aplastic anemia. It consisted of anti-thymocyte globulin (ATG), cyclosporin and prednisone. I was in hospital for about 6 days. On my first day of ATG, I had an allergic reaction. I was covered in hives. They reduced the drip rate, and the hives went as quickly as they had come. After treatment all my counts were very low. I think I also had a couple of blood transfusions. I remember that my platelet count was 10 and they were going to give me a bag of platelets, but my count improved slightly over the next couple of hours, and they decided against that.
When I got back home, I was on prednisone and large doses of cyclosporin. The cyclosporin capsules were the biggest capsules that I had ever seen. On my first night at home, my chest was aching and I had to try and sleep propped up. I felt like I was having a heart attack, so it was off to the hospital for an ECG. Fortunately, no heart problems. The next day I decided to go for a short walk, but I was very weak and I blacked out. Over the following months, nose bleeds and cramps were my constant companions. I had very little energy. The strange thing was that even though I felt so crook, I never actually thought that I was going to die. I just couldn’t picture that. I am extremely lucky in that I have a wonderful supportive wife who looked after me so well.
Blood tests every two weeks and slowly my counts went up and the cyclosporin was reduced. I was also on Bactrim as a preventive from infection. From memory, I think that I only took the Bactrim on two days of the week. I recall saying to my hematologist that I wanted to stop taking them. I had gone through 40 packets. That’s 400 antibiotics. She wasn’t keen, but said that it was my decision. My blood counts were slowly creeping up, but not all the time though. Sometimes they were up, sometimes they went down a little. I was told that it was a bit of a rollercoaster ride. I remember the day that my hematologist told me that my red and white counts were back in the normal range. Even my platelets were starting to climb back up. Blood test frequency was reduced to once a month, then once every couple of months and finally just one every six months. One day my hematologist informed me that what they had originally diagnosed as AA was in fact MDS. More Google searches to learn about MDS, but still not wanting to know too much about survival and life expectancy.
So how is life today? Well other than getting cramps probably more than the general population and still getting a little dizzy at times, it’s very good. In 2011 we decided to spend a month in France and Italy. It was one of those, if we don’t do it now, we will never do it decisions. We live in Australia and it’s a long flight to Europe. I can assure you that dancing around on a packed aircraft with leg cramps is not a fun experience. The answer is not to do long flights, but if you must, book an exit row seat with extra leg room. Drink tonic water, take magnesium tablets, eat bananas, and keep hydrated. All these things tend to help as far as cramps go.
I no longer need to see my hematologist. Red and white counts are in the normal range and even my platelets are just slightly below the normal range. I haven’t had a nosebleed for years and best of all, I have been able to see our beautiful grandchildren grow up. Sam, the little bloke in the picture, now has his driving license.
For those who have just been diagnosed with bone marrow failure, I would say. A lot more is now known about these conditions than when I was diagnosed in 2006. I am sure that many more medical breakthroughs will occur in the future. As far as words of wisdom go, I would say. Try to take care of your general health. Things like colds are hard to shake. I have had all my shots and have remained Covid free. Seek the help and support of others, especially those who have traveled this road. Live in the day, try not to project and enjoy life to the max.