Yes, I'm well aware that the headline sounds all very melodramatic, but when you have been faced at hospital, with your Consultant's comments "your condition is irreversible, incurable and you have about 2 years left to live" it sort of focuses the mind and you sit up and pay a little more attention than usual. And yes, that's exactly the scenario I faced on 22nd April 2021. So forgive me but I make no apology for the 'dramatic' title.

In the meantime, let me take you back to the beginning of the Idiopathic Pulmonary Fibrosis (IPF) consultations and how everything evolved in a time chronological order... 

And before we get going, let me emphasise that 'no real names will be used for any of the medics or otherwise within these articles...' 

Following my quadruple heart bypass in September 2018, and during the road to recovery, I was conscious of a dry cough which I had developed. Not one to just run off to the GP I stuck it out for a while longer (about a year) sucking on the odd throat and chest lozenge and a few Fisherman's friends. It wasn't a hardship. The cough didn't improve but it didn't become more severe, it just sat there. It was only during a regular check-up/follow-up for my heart work that I bothered to mention the cough to the GP. Unperturbed the GP checked my chest and lungs and booked me in to see Lung Consultant (A) in Hospital (A) merely as a precaution. I believe the timing of this was around late November 2019 although I could be a month or two out, (but it was at least some twelve months after the cough had raised its ugly head) and it was agreed between Lung Consultant (A) and myself, that the condition required monitoring every three months. Little did we know that Covid-19 was on the horizon, and that my next appointment would be cancelled.

I very much had confidence in Lung Consultant (A), he was efficient and appeared to really treat my 'ailment' seriously and I'd been looking forward to returning to attend my appointment with him in particular in March 2020. Enter COVID-19, and our Prime Minister Boris Johnson, had uttered those words "The whole nation is going to have to go into lockdown", and my appointment was rapidly cancelled within days of the said appointment day. My next appointment on the six month mark was due around June/July and that was both booked and cancelled. September/October's never materialised and now I was faced with a full twelve months with no review.

The Cough: had become worse and there were days when I would wake up retching as if to want to vomit but knowing that there was nothing for me to throw-up. I wasn't coughing phlegm, nor blood, nor anything - it was pure unadulterated retching of the gut and some grasping for breath. It was violent. A couple of times I thought I was going to black out of worse, die. This wasn't going well, nor according to any forecasted plan. I was just going through the severe coughing stages you would normally associate with a very heavy smoker. I have never smoked in my life apart from a quick ciggy behind the bike shed as a kid - and even then I didn't like it! This retching continued for many months and was exacerbated when I would get into a hot stuffy car and opening of windows with a flow of fresh air was the only way to help relieve the coughing issue. Of course one or two people questioned if I had COVID-19 but I had none of the symptoms of such and apart from an increasingly annoying cough I had limited other symptoms. My youngest son and daughter-in-law were about the only people to witness these serious coughing bouts and they were, naturally, very concerned. But what could I say? It was all down to the fact that my appointments were being cancelled due to COVID? It was a point they well understood.

Shortness of breath: bear in mind that I had been through a pretty traumatic quadruple heart bypass operation whereby to get to the heart the Surgeon has to collapse one's lungs and then once the operation is done, re-inflate one's lungs to 70% capacity... I was aware that I was already operating (from September 2018) on lower capacity, the 30% of which I had to make-up myself (without any real medical advice on how to achieve it). My shortness of breath therefore was put down, by me, to the heart operation and not the cough. The shortness of breath gradually got worse, week by week. How bad? There were occasions when I would walk up the stairs and I knew I was 'in trouble'. My home has a steep drive, and I struggled to reach the top without the assistance of the wall on the right. The road upon which I live is on a slope and there was little chance of me ever walking unassisted down and then back up the road. 

Wheezing: At first the wheezing was barely noticeable. As time went on it became more pronounced. By the time I got into see the Lung Consultant (B) in Hospital (B) (read on) it was very audible and no-one in the room required a stethoscope to hear it. It was at it's worst level. 

'Timeline I' went as so:-

October 2019: A Breathing Analysis Test in preparation for an appointment in November 2019 with Lung Consultant (A) in Hospital (A). Breathing Analysis Test done and passed despite having serious issues with their equipment. (I'm not the only one!)

November 2019: appointment kept and we agreed to monitor my lungs every three months. Subsequent appointments cancelled and no news from hospital throughout 2020.

Year 2020: was pretty much a write off...and I cannot recall and I have no records showing that I attended any hospital appointments. 

With a year of stop start lockdowns (of which we had extra due to the Welsh Government's extra cautious approach), little exercise, and an excess of Festive food... my weight had ballooned. I was at my heaviest ever, 17stone 7lbs. Conscious of the extra weight and the shortness of breath which wasn't helping, I was probably at my lowest mental state. I'm intelligent enough to understand that this couldn't continue and that only I could change things for the better. 

I dislike the word 'diet' as it conjures up those Weightwatchers, Atkins, Cambridge, Slimmer's World, and Jane Plan diets which I saw as only ever short term, and they are enough to put one off. It also reminds me of my mother who, God Bless her was always complaining about her weight whilst eating a salad only to complement it with something unhealthy between meals. No. What this required was a lifestyle change but was I really ready for this and how drastic should it be?  

With a library of over 130 cookbooks I researched diets, lifestyle eating and all manner of healthy foods and nutritional books etc. Individual dishes appealed but of course like many of these meals they are catering for a family of four and rarely for one solitary person living alone. In addition, I needed dishes which were quick and easy to make for one as I'm not slaving over a hot stove/kitchen for three hours for a dish that will barely cover the plate and whilst wholesome, will be gone in a few minutes flat. Almost at the stage of giving up with this crazy idea, and succumbing to the temptation of joining Slimming World members who meet at the bottom of my road, I typed out a meal chart for the week, which I could follow for all 7 days of the week. Having printed said meal schedule I stuck it to the inside of the door of a kitchen cupboard. I started this 'diet' immediately after Christmas and before New Year's Day. Was it a resolution? No, not really but this was an incredibly mentally positive step in my recovery process, and I told myself I owed it to myself to give it a serious go. 

Whether right or wrong the Weekly Meal Schedule looked like this:-

  BREAKFAST   LUNCH   DINNER
Monday Banana smoothie with fresh fruit   Choice of cold turkey slice, or ham or beef w/veg   Smoked Salmon & Veg Tartare
           
Tuesday Two eggs scrambled with smoked trout (no bread)   Stewed fruit - cold   Pasta w/Roasted Peppers, Basil & Garlic
           
Wednesday Fresh fruit, yoghurt & Granola   Mixed bean Salad with red onions, tomatoes, EVOO, tuna, cucumber & herbs   Fish of the day
           
Thursday Two poached eggs, asparagus or avocado with slow roast tomatoes   Smoked Mackerel Caesar Salad   Beef & mushroom Stew (Boeuf Bourguignon)
           
Friday Porridge made with water & fresh fruit   Provencal Tomatoes   Seafood salad
           
Saturday Two eggs omelette made with Olive Oil & a choice of green filling   Soup of the Day   Warm Broad Bean salad (broad beans and Baby leaks)
           
Sunday Fresh fruit cocktail   Grilled Chicken with Patatas a la Pobre (Spanish poor man's potatoes which contains potatoes, onions and green pepper slowly cooked in olive oil)   Tuna & Anchovy Fish Cake with salad

 

How did it go? Did I stick to it? Did I lose anything in terms of weight?

Let's be totally honest. Who ever sticks religiously to any diet? Of course I didn't stick to it...well not religiously, but I did use it as inspiration when thinking 'what am I going to have to eat tonight'?

Breakfast: was a breeze! I stuck to those dishes although may have changed the schedule of days, subject to what was in my fridge. For example I may have been due to have 'poached eggs and avocado' on the Thursday only to find the avocado was off or I was out of eggs...and so I switched back to a smoothie as a fall back option.

Lunch: I followed pretty much straight through although I only made Patatas a la Pobre a couple of times as it is time consuming and it's really not the sort of food to freeze. 

Dinner: The beef lasted until I ran out of the Boeuf Bourguignon which I had previously bulk cooked in a slow cooker and frozen in the fridge. Usually it was accompanied by some veg but plenty of mash. Seafood salad never really got off the ground and the Tuna and Anchovy Fish cake became Salmon or Tuna Fish Cakes which I again made in bulk and froze. 

So you can see from the above that I stuck to some of the 'diet' and discarded some. The killer for me was that my son and daughter in law would visit (they had travel exemptions due to work) and invariably a pizza made an appearance from the local take away or out of the oven. I resisted 90% of the time and when I did partake it was only a restricted portion for me and strictly no chips! 

As for losing weight? I lost circa 1 stone 7lbs by March 2021 (about 3 months) and mentally was in a positive frame of mind towards the success of the 'diet'. I felt that any loss of weight was progress and would help me should I develop COVID. I was determined to stick to it although in all honesty I fell off the wagon for one week. I soon realised, and returned to the diet very quickly.

Back to Timeline II

25 January 2021: Letter informing me of an appointment with Lung Consultant (A) in Hospital (A) on 8th April 2021. 

In order to prepare for this appointment I underwent a Breathing Analysis Test in the February 2021. I also received a notification to attend a CT Scan on 12th March 2021

The Breathing Test appeared to be good from my part, but I had heard no results. The CT Scan too appeared to go ok but again I heard no results.

15th March 2021: Letter confirming that my appointment of 8th April 2021 with Lung Consultant (A) had been cancelled.

18th March 2021: I called Hospital (A) to ask if they had received the results of my CT Scan and could they tell me the outcome. I was informed verbally that they had rebooked my appointment with Lung Consultant (A) for the following week, 15th April 2021. I stated I could wait to see him and would hear from him during the appointment and I hung up. 

18th March 2021: 5 minutes after my call to Hospital (A), Hospital (B) rang me asking me to attend an appointment with Lung Consultant (B) on 22nd April 2021. I enquired if it had anything to do with ew conversation I'd just had with Hospital (A) five minutes earlier and then knew nothing of my call. It was a coincidence. Having explained that I had an appointment with Lung Consultant (A) on the 15th April, I was told Hospital (B) would cancel that and my case was being transferred to Lung Consultant (B) at Hospital (B). I replied, "Ok, I understand but what's the appointment on 22nd April 2021 about?" The Senior nurse stated "Oh, we want to start your treatment!" "Treatment for what exactly?" I responded. "You have Idiopathic Pulmonary Fibrosis" I was told on the phone!  

Bear in mind that this is a life shortening disease with no cure, and is irreversible...and I have found out in a casual call on the telephone. 

At the time of the phone call I knew very little about the condition...and so it was that I took to Google to research the condition.

18th March 2021: Having read up on the illness - I was numb.

During April 2021 and prior to my appointment with Lung Consultant (A) on 22nd April I underwent a further Breathing Analysis Test - it didn't go well... 

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Please return shortly to read Part III of this story and learn how not only have I coped with this condition, but I have started to turn it around...