It wasn’t Long Covid, it was MDS!

The summer of 2020 was a good one. It was hot, the sun was shining most days. I was on furlough, still being paid and I spent a lot of time sat in the garden, drinking cider and listening to music. Life was good. I remember questioning why retired people said they were always busy. I had things to do, of course, but I could ‘just do it tomorrow’ and that included going to the doctor.

I thought back to earlier the same year, February, to be specific, when I was in Tenerife with my son. We were visiting my parents who were on an extended holiday. Although there were no tests back then, I’m certain that I caught Covid just as we came back. A cruise ship was quarantined while I was there, which made the news. At the time, it was just a mystery virus that was spreading round the world that killed a few people and was highly contagious. I felt a bit rough but it was nothing I couldn’t deal with. A few paracetamols sorted me out.

Chris Potter

I had no problem walking up the hills while I was there, in fact I had no problem keeping up with an energetic 11-year-old. We would often walk ahead and wait for the ‘oldies’ to catch up, so I know I had no symptoms then.

I had a nagging feeling that something wasn’t quite right and did the obligatory internet search.  Tiredness or fatigue that interferes with daily life – Check.  Symptoms that get worse after physical or mental effort – Check. Difficulty breathing or shortness of breath – Check. Fast-beating or pounding heart – Check. Dizziness when you stand up – Check. Joint or muscle pain – Check.

I agreed with Google. It was obvious that I had ‘Long Covid’.

All the symptoms fitted and even when I eventually went back to work, I was breathless after going up the stairs and I got tired in the afternoons, to the point I had to have half an hour on the sofa when I got home each day. It became a routine that I thought would change when I got over my Long Covid.

Jump forward to 12th September 2022. I had booked an appointment with my GP. All my Long Covid symptoms were still present. The only changes were that my afternoon naps had evolved into an hour, sometimes two, sometimes more and I felt dizzy almost every time I stood up, rather than occasionally.

At about quarter to four, I shuffled the 500m to the GP’s surgery, having to stop numerous times on the way, to sit on a wall, or lean on a railing to catch my breath. “It’s just Long Covid and I’m fifty, so I’m knocking on a bit, this is normal, right?” I kept thinking to myself.

I had my blood taken and was told not to expect any contact unless there was something wrong. I shuffled home knowing that they wouldn’t contact me because I just had Long Covid.

At two minutes past ten that same night I was settled down watching the telly and got the phone call. “Hi, I’m the on-call doctor. I’ve got your blood test results and you need to go to hospital right now. Write this down ‘neutrophils 0.4’ and go straight to A&E”. “What are neutrophils?” I asked. “Don’t worry about that, please just get yourself to A&E” was the reply. “I’ll Google it”. “Please don’t Google it, just go to A&E”. I then Googled it and started to worry.

I went to A&E, which was surprisingly busy for a Monday night. There were all sorts of characters in there. Some were being sick into cardboard bowler hats. Some were clearly in pain, holding various body parts. Others were clearly drunk. There was an annoying chap in a wheelchair, who kept playing the beginning of the same song over and over and over again and my argument with him was the last thing I needed. There were families with crying children and a large bloke being escorted by two police officers. The only person missing was a child with a saucepan stuck on his head.

Thankfully, I was eventually seen by a doctor. He did a few tests and sent me home to get a couple of hours sleep, on the understanding that I would return for the day clinic at 08:00, in a couple of hours.

The day clinic was quickly followed by a trip to the haematology clinic with loads of blood tests and a bone marrow biopsy. It was at that point that I think I knew.

My biopsy results came back and I was told that it wasn’t ‘Long Covid’; this was a bit more special. This is MDS or Myelodysplastic Syndromes, a group of conditions where your bone marrow does not work properly and makes faulty blood cells. A type of blood cancer.

“Wow! I’m only 51, are you sure?” They were sure.

I’m now a year on, 5 sessions of chemo (Azacitidine) down the line, have a date for a bone marrow transplant and I’m optimistic for a successful outcome.

My point for these few words is that I don’t believe that I’m the only person to mistake something serious for ‘Long Covid’.

Please, everybody, if you’re not feeling 100%, go to the doctor. I got lucky, in that it was quickly detected with a blood test. If you put it off, you might not be so lucky.

What are the symptoms of MDS?

  • Weakness, tiredness and breathlessness (because of the low number of red blood cells)
  • Frequent infections (because of the low number white blood cells)
  • Bruising and easy bleeding (because of the low number of platelets)

If you spot the symptoms above, take next actions quickly. 

As with all cancers, fast action enables faster diagnosis and better treatment. For more see MDS Symptoms

Get a #BloodCount

One of the first actions you can take is to get a full or complete blood count (CBC). This is a straightforward blood test that can be easily arranged at your local GP. While your symptoms may not be MDS, it's wise to have the test to rule it out.

A Complete Blood Count (CBC) is a very common blood test that is often part of a routine checkup. The test counts the cells that make up your blood: red blood cells, white blood cells, and platelets and the results can determine if further investigation into MDS is required. If you see the signs and symptoms, get a complete #BloodCount


Complete Blood Count test

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