Pulmonary Embolism

Hello, I’m hoping that by writing about my recent experience, I might hear from people who have had similar issues. This is mainly to help me understand some of the pain I’ve been having recently, as I haven’t really been getting much support or explanation from the NHS.

Back in March this year, I unfortunately rolled my ankle and broke my foot during mine and my wife’s “babymoon” in Tenerife.

The hospital there strapped up my foot, provided me with 30 days of blood thinners, and said I was fit to fly so that I could start my treatment back home in Nottingham. We managed to get an early flight the following day.

On arriving back in the UK, I went straight to hospital. They X-rayed it again and provided me with a boot, advising me to wear it for six weeks while the fracture healed. Interestingly — and something that is quite hard to take now — they told me not to take the blood thinners that the hospital in Tenerife had prescribed, as they said they weren’t required. So, following their advice, I stopped taking them.

Fast-forward four weeks and my calf had increased in size and was in extreme pain, to the point where I couldn’t even touch it. Me being me, and I’m ashamed to admit it, I brushed it off. I assumed it was probably caused by the boot I was wearing, as it had around a one-inch heel. I put the pain down to my body adjusting to walking differently.

Around a week after the leg pain started, I began getting chest pain. With a baby on the way, I was doing a lot of DIY and had fitted a carpet on the same day that the chest pain began. I put the chest issue down to dust from laying the carpet and carried on with my day.

That night, when I was going to sleep, my wife dragged me out of bed and got me to A&E because I was shivering, sweating and breathing very quickly.

Once at hospital, a CT scan showed a saddle PE and multiple clots in my lungs, which they assumed had stemmed from the broken foot and clots that had formed in my calf. The doctor told my wife and me that I would likely not have made it through the night. That has been incredibly difficult to process mentally.

I spent five days in hospital and have now been on blood thinners for around four and a half months.

When I was discharged, I couldn’t really walk, although my chest pain had improved significantly. My breathing was better, but any physical movement was difficult. For example, walking more than 5–10 steps on crutches would leave me exhausted.

Over the following couple of months after discharge, I improved massively. The swelling in my leg reduced to the point where there was barely any noticeable difference compared with my other leg, and my breathing became much better.

There have been a few issues along the way, though. I was told that if I developed any new chest pain or breathing problems, I should go back to A&E.

In total, I’ve probably done this five or six times. Each time, ECGs and plenty of blood tests have shown no issues at all.

However, I now get a dull pain in my chest (had this since discharge). It started mainly on the right-hand side, but more recently I’ve been getting it on the left side as well. These pains come and go. Sometimes I won’t feel anything for maybe three weeks, and then suddenly, out of the blue, the pain comes back.

The pain isn’t severe and I can carry on with normal life — with a newborn, I don’t really have much choice anyway 😂 — but I know it’s there, and my overthinking sometimes makes everything feel worse.

At a telephone follow-up appointment at the three-month mark, the nurse told me that he wanted to take me off the blood thinners as soon as possible. I’m currently taking Apixaban 5mg twice a day.

I told him about the chest pain and that I still sometimes have discomfort in my calf. The veins in my leg can also feel “full”, if that makes sense, and sometimes stand out more than usual.

In myself, though, when I’m not thinking about the chest pain, my energy levels are pretty good. They’re not quite what they were before all of this, but I can work a physical job with very little issue. Paddle tennis has had to take a back seat for now, though.

The nurse said he would put me forward for an echocardiogram. I had this last week and was told that my heart looks fine, which I’m really pleased about.

Now to my actual question — sorry for rambling, but I’m trying to paint the full picture 😂

Are these chest pains normal after a PE?

I feel like the gaps between the pains appearing are getting longer, although I haven’t been properly logging them, so that might not be completely accurate. Most recently, I know I went around three weeks without any pain. When it does come back, it seems to last for around a week.

The discomfort isn’t related to breathing. It’s just there constantly while I’m having one of these episodes.

When I speak to the hospital, a lot of the medical professionals don’t seem to know what is causing it. They do blood tests, X-rays and ECGs and basically say, “You’re good to go, we can’t find anything.”

I seem to remember one doctor telling me when I was originally admitted that my lungs would need time to repair and that I might experience some tenderness while they heal.

If anyone has experienced something similar or has any advice, I’d really appreciate hearing from you.

I’m struggling to get much medical advice or explanation from the NHS about what I’m actually feeling. It often seems that because the tests show I’m probably not dying or having another PE, I’m simply sent home without much explanation as to why the discomfort is still happening.

Any help or shared experiences would be greatly appreciated, and sorry again for the long post!