Breathless, normal… or something more

Being breathless has many causes… so many it is generally categorized as shortness of breath. https://en.wikipedia.org/wiki/Shortness_of_breath

 https://en.wikipedia.org/wiki/Labored_breathing

However, it can be the symptom of something much more sinister. Let me share my first brush with the dark side of being breathless.

Shortly after our marriage my husband had to take early retirement. He had been in and out of hospital in those first nine months we were married. I used to joke and say it was like a pregnancy. Not that it ended after the nine months, but by then we were used to it.

breathless and frustrated

Something that frustrated him greatly was the attitude of others, sometimes even hospital staff – “Oh it’s only asthma,” or worse, the people who thought he was malingering.

Well, ultimately that ‘malingering’ took his life… and that is what this ‘breathless’ blog is about.

My late husband was a great ‘case study’ for many training doctors. So many potential diagnoses were proffered, but still no definite statement saying – “This what is wrong with you…”

About twelve years before he died I remember how pleased he was when his lung specialist said that the condition was ‘Fibrosing Alveolitis’. Finally he had a name, a hook to hang his symptom on. Little did we know, and looking back it is just as well we didn’t know, that those words were a death sentence. Yes, that had been a reality for many years… severe asthma on top of pre-existing chronic lung disease. He was on ‘fast-lane’ ambulance priority – and there were interesting experiences of the ambulance driving the wrong way heading down an off-ramp onto the freeway… and short-cutting through business carparks.

Yes, I had done internet searches at the time,

… but could find nothing other than vague mention of interstitial lung disease (which meant nothing to us, and provided no information then either). So, yes, there was a ‘hook’ to hang the symptoms on, and the regular and sometimes frightening urgent admissions to hospital. There was nowhere to go with this information though.

Because we did not know the danger, or the risks, for the first time my beloved husband/best friend travelled overseas for the first time. He loved meeting our church brethren in the US, and had damp eyes when we flew out of the airport. As for my home town, Peebles in Scotland, he likened that to Brigadoon – although I assured him it was there every day. We had two more trips, scrimping and saving with our eyes on the goal!

Neither of us guessed in that last year we went, that he was suffering from anything other than the effects of a stubborn infection. In fact his lung specialist gave him two different types of antibiotics that he was to take if the ‘infection’ did not improve.

Cutting out a whole ‘lump’ of frightening experiences, bringing him home from that last overseas trip was … well, I don’t think there are words for it. Yet, there were many people who stepped in to help.

On our return to Perth, my husband went to hospital. He was on 15 litres (that’s fifteen not one point five,) of oxygen per minute. Then he needed more on walking to the ensuite bathroom in his hospital room. We remarked that he had never needed that much before, but still had no idea of what the next few weeks would bring. Without question we accepted that at home he would need two large oxygen converters hooked together to supply the oxygen he needed… and many other trappings of dying – without any sense of reality penetrating.

It was on his second admission that he worked out that he was dying – and it was confirmed when he asked his new respiratory consultant.

However, this post is not about a person – nor the experience – it is about a condition, a terminal condition. Possibly more terminal than the diagnosis of lung cancer. There is a lot of information available online now. I found it after my husband had died, and I was putting together a journal on his ‘last journeyings’.

Can you do something to help sufferers of Pulmonary Fibrosis (as it seems to be called now)?

Yes.

  • If you are breathless and have any symptoms that worry you – check with your doctor. Ask for a referral to a Respiratory specialist.
  • Ask, and keep on asking – if you want to know. There are treatments today. A lot more information is known nowadays. There is help.
  • Don’t judge people you might think are ‘malingering’. They might be fighting a hard battle. Remember, you are not walking in their moccasins.
  • If you have a cold or ‘flu symptoms – please do not visit someone you know has a respiratory illness.
  • If you see an appeal for PF (or Pulmonary Fibrosing) please donate. A few coins in a tin, a larger donation, or find out about it and raise awareness… please donate.

Remember the last time you felt breathless!

Susan

DISCLAIMER

I am not writing this on behalf of any organization, or making an official appeal. I am remembering the daily struggle my beloved husband went through. Being smothered by your lungs is not pleasant. (That’s what he was told was happening to him – when his new specialist decided to be honest with him.)

There are many ‘Cinderella’ causes. It seems this is one of them.

 

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