Imagine lying in bed, you cannot breathe, your medication is not helping and you’re on a cruise boat with no medical help close by. Your fate is in the lap of the gods and there’s nothing you can do but hope you’ll be ok. If you have a severe respiratory disease then you have probably experienced similar feelings of helplessness and anxieties.
If you’re not a patient then you need to understand this is what we face with our disease and while we can take all precautions, there are no guarantees. I don’t normally discuss my exacerbations in public but this was my circumstance back in May this year and something I felt I needed to share.
I had completed a successful run in the London marathon and recovered very quickly from the event. My wife, Leanne and I spent the week after the marathon relaxing in London with family and friends. I’m very aware marathons are taxing on your immune system and this is why it was important to have a rest. We were booked to board a cruise boat 8 days after the marathon and wanted to make sure I was feeling good for this trip.
Planning events on the other side of the world can be tricky and this one was no different. I had been asked by a number of respiratory groups to come and talk, something I enjoy doing. Leanne and I decided to visit the respiratory groups before the marathon so I could have plenty of recovery time after the race.
We left London a week after the marathon and flew to Amsterdam where we boarded our cruise boat. I felt fantastic and had not had any ill effects from the marathon. The first week of our cruise was wonderful, we were doing daily tours and enjoying the beautiful towns along the river.
Towards the end of the first week we had noticed a few fellow passengers starting to cough, which always raises alarm bells. By the start of the second week it was obvious some passengers had come down with flu like symptoms. The cruise boat was a smaller boat with a maximum of 180 guests in a confined area. Pretty soon the bug had spread to many passengers.
I woke on a Tuesday morning feeling quite short of breath and suspecting this bug had attached itself to me. As the day went on my symptoms become worse, by night time I had a sore throat, a fever and was very short of breath. We had initiated my COPD action plan and sent an email to my respiratory doctor back home. In the past, I have been able to cut off exacerbations of my symptoms by going straight on to a course of antibiotics and prednisone. We always travel with antibiotics and prednisone as well as backup inhalers for when something like this happens.
When I woke Wednesday morning my worst fears were realised, I had a full-blown infection. I spent Wednesday resting waiting for the medication to take effect, my doctor had responded to my email and had given me instructions to follow. Leanne had notified the ships staff about my decline.
I spent Wednesday night in bed watching television thinking it’s been 24 hours since I started my medication, it should kick in soon. Unfortunately, it didn’t and as the night wore on I continued to go downhill. I know many patients have been in this predicament and it’s a terrifying place to be, no doctor on board, no way of getting to a hospital, my fate was in the lap of the gods. My breathing had become extremely shallow. The simple act of going to the toilet was forcing my oxygen saturation to plummet further. My thoughts of when my medication was going to take effect had shifted to am I going to make it through this night.
In 2002, I suffered what doctors told me was a stroke, my organs shut down and I essentially passed. I was saved by my brother and some persistent paramedics who refused to let me go. This night on the cruise boat I was praying for the same miracle.
Apart from my caring wife Leanne, someone was looking after me on this night, with the help of my oxygen concentrator and sheer exhaustion from the effects of this exacerbation I was able to get some sleep. By morning I was feeling some relief and it seemed obvious the medication was starting to work. We had 3 more days on the cruise boat and then a 28-hour flight home.
The rest of the cruise was about me trying to get myself healthy enough to endure the long flight home. I was torn whether to go to a hospital or not. Fact is I just wanted to be home. Our cruise ended and we said goodbye to some new friends who had been very supportive to Leanne and I through this ordeal.
My medication was working well and while I was still quite sick, I felt I was able to endure the long flight home. The flight home went pretty well all things considered, the staff of Singapore Airlines were fantastic in helping me both on the plane and with transferring flights. I was given motorised transport to travel between terminals which was a life saver.
Arriving home was a wonderful feeling, knowing the worst had past and I was close to medical help was a big relief. I visited my respiratory doctor to have a complete check-up. While I was feeling much better I was still quite sick. He ordered a number of tests to see what had gone on and had me continue on the medication I had been taking.
My test results came back inconclusive for the type of infection I had. What was very obvious was my breathlessness was still severe and my oxygen levels were constantly low. My doctor said it could well take you 3 months to return to normal and it’s possible I may not get back to where you were. This wasn’t the news I wanted but in reality, I was grateful to be on the road to recovery.
For the next few months I concentrated on just getting myself right, took my medications, focused on my diet and went to gym when I could manage it. But this exacerbation wasn’t going to give in. Just when I thought I’d beaten it I would become sick again, winding up on antibiotics and prednisone. This cycle continued several times and was doing my head in. I had to constantly remind myself what I tell other patients all the time – just keep fighting.
Many of you know I like to try different strategies to better manage my disease. This lead me to using the ketogenic diet. I started reading up on ways I could build up my immune system as I knew the continued use of much needed anti-biotics was not doing my immunity any favours. I came across a study showing how fasting can rejuvenate your immune system.
Radical? Absolutely! However, the more I read the more it made sense and after doing my research I decided to start a 5-day water/bone broth fast with medical assistance. WARNING – I would not suggest anyone try this without medical assistance and supervision. More details about my fast can be found here.
I can’t say the fast ended my cycle of anti-biotics and prednisone but the fact is I haven’t had any more since I finished my fast. I also can’t say I have returned to full health because I haven’t. I have had CT scans which show the damage to my airways has worsened, but this will not change my desire to push the limits.
What I can say is I’m continually improving and I’m back exercising. I will be competing in a yearly charity ride in the coming weeks with the use of my portable oxygen concentrator and I will be doing more marathons, possibly at a slower pace.
Time will tell whether I’m able to return to the health status I enjoyed prior to this exacerbation. One thing is for certain, I will never give up trying!