It’s very easy to get sucked into the numbers that are shared in relation to MDS. As a mathematician who worked in healthcare informatics for many years I have a great respect for them but also a degree of wariness about reading too much into them. Numbers come across as hard, shiny facts when in fact they are often open to interpretation. Below are some reflections on my experiences over the last six months since my diagnosis.
Blood measures
It was something of a shock to find when I was admitted to hospital with a nose bleed that my platelets were 16 (10*9/L), when they should be in excess of 135. At that point I knew very little about platelets, but soon that number became one of the key markers to track. I’ve settled down to needing platelets once a week, which usually keeps them above 10. The trigger point for me, given that I have had a couple of nosebleeds, is 20. Left to my own devices, without infusions, it would hover just below 10 (a couple of times I have gone a fortnight without an infusion).
The other measure that came as a shock was haemoglobin that was 71(g/L) after the nosebleed, and dropped to 66 over the next couple of days, and that should be above 130.It took three transfusions to get it above 80. It has then hovered either side of 80 which is the trigger point for a transfusion. Unlike platelets the weekly test is hard to predict. Red cells last much longer than platelets – up to 120 days. Sometimes I have gone four weeks between transfusions, and sometimes need them every week.
Neutrophils have usually stayed above 1.00 (10*9/L) which is a relief – 0.5 is considered very unsafe. In fact they were 2.69 when I had the nose bleed and rose to 3.78. I was recovering from a terrible cold, which was part of the trigger for a nosebleed.
At first I was quite obsessed with these numbers. What I slowly realised was that there are many factors that influenced both them and how I felt. Sometimes I can feel more energetic with haemoglobin at 75 than when it is 85. Eventually I just accepted that it was a process of keeping me safe and as fit as possible while I was evaluated for a stem cell transplant. Trying to find patterns and read meaning into them was not helping.
What has surprised and impressed me is how much information can be gleaned from a small sample of blood. I’ve had blood tests before, but usually they were looking for one thing such as cholesterol levels. I’ve had some fun (well I am a geek) researching what a lot of these obscure numbers mean. The hospital allow me access to the test results, and I can look at patterns over time.
The other thing to note is that the numbers have a degree of variability. How hydrated you are, the machine that is used for the test, and natural variability within the same test machine. I have had a couple of examples where my platelet results on the same blood sample varied by over 5, with the readings either side of the trigger level for an infusion.
So, my attitude now is much more pragmatic. Life has settled to a weekly pattern of test and infusion/transfusion. I’m happy that the process is keeping me safe. No doubt I will get a little more obsessed again when the transplant takes place.
Survival rates
This is a great area of potential alarm. Survival rates are expressed as “median survival rates” which means that half of the people measured did not survive that long, and half survived longer. As it took nearly 3 months to get an accurate diagnosis, survival rates were never quoted by any of the clinicians until the first transplant consultation, and even then it was (justifiably I think) skirted around other than what might happen if I did not have any treatment.
Median survival rates are retrospective, and so do not reflect improvements in treatment. The trend will naturally improve over time. This felt to me an important reflection regarding deciding on a stem cell transplant. Knowing the figures for with and without transplant were very helpful, but I did not treat them as an indication of my life expectancy – the decision was more about quality of life.
Conclusion
Numbers are useful guides, but need to be treated carefully. Trying to read too much into them can be alarming. The most important thing is to live the best life you can within the constraints of your condition. At times they will be useful for some decision making. Don’t ignore them, but (this is easy to say) don’t obsess either.