Robert’s Story – never surrender

As Heather told you in her story I was pretty blasé when I got the diagnosis of Pulmonary Fibrosis in October 2007. I had never heard of it and just thought, “oh well, that’s what I’ve got”. I soon found out different.

I first noticed a breathing problem in May 2007 while doing the fitness test for the Class 2 soccer referees. I just about scraped through but had serious problems the next day and went to my family doctor. She sent me for x rays and, after reviewing the results, referred me to Dr Dancey, a Respirologist in Markham. He sent me for more x rays in September and a CT scan and in October told me the diagnosis. He then said: “If you go on the Internet and research it I would scare myself to death”.

Well I went on the Internet as I believe he suggested and, although I didn’t scare myself to death, I did find out that it was a very serious disease with no cure or treatment. I learned that the prognosis was not good, with a life expectancy of 2 to 5 years from date of diagnosis. I also noticed on the graph attached to the report that some people lived for 18 years. I decided to choose the 18 years.

I was sent to Dr Singer at Toronto General Hospital to start the lung transplant assessment programme, but, of course , I was far too early for transplant. But they like to meet early in the disease so there is no rush if the disease progresses rapidly. This started a time of specialist appointments every two or three months. Who says our health system is not the tops. If your problem is serious all the stops are pulled out and, in my view, we are second to none in the world.

I was OK all through 2008 but, in early 2009 I got a chest cold which seemed to start the disease on a downward spiral. I decided to get some travel out of the way before I was unable to go anywhere. I wanted to go back to China, to Yunan province, and, after clearing it with Dr Dancey and Dr Singer, my friend Clyde and I went there. We also visited Xian and Beijing, seeing the Terra Cotta soldiers and climbing the Great Wall. Being up 12,000 feet at Shangri La was too high and I spent most of that day on the hotel bed but the trip was great. I went to Minnesota for the USA Cup in July and refereed the little ones (walking refereeing) and, in August, Heather and I went to Scotland for her 60th birthday, enjoying the Edinburgh Tattoo on her actual birthday. We toured the Highlands, staying in some magnificent castle hotels and had a great trip.

If you get the disease do not surrender to it but keep enjoying life as much as you can.

By November I was much worse and had to go on oxygen for any activity. I started seeking out an associate to take over my practice in case I was suddenly taken worse and could not service my clients properly. I am a chartered accountant with my own small practice.

In December I got another chest cold and the disease accelerated again. Now I needed help showering, dressing and was on oxygen full time. I rented a wheelchair so that I could do my Christmas shopping with Clyde’s help.

I had been sent for an angiogram in early December to ensure my heart was strong enough for a transplant operation and the results were sent to TGH for their cardiologist to review. Just before Christmas I went to emergency as my breathing was so poor, even with oxygen. Dr Dancey attended me there and confirmed that the x rays showed the disease was somewhat advanced. Now I couldn’t stand up to shave or clean my teeth. I got up in the morning, got ready for the day ( a 2 hour epic) then sat in a chair all day. Getting up and going to the washroom was a major task which required me to build up the courage to “go for it”. Sometimes I couldn’t and held it in waiting for another try. Not a good idea really but that’s the way it was

Through all this my wife and friends were absolutely marvellous. I really didn’t know how wonderful and caring my friends were. Thank you to all of them. If you get this awful disease keep your buddies in the loop, they will help you out.

Dr Dancey pushed TGH to review the results and speed up my review to be listed for lung transplant. He called me at 8:00pm on December 29 to say he had been e mailing and talking to TGH and that they had suggested I stop the Plavix which I took for the heart. Stopping Plavix is necessary to be listed as it is a blood thinner and the surgeons don’t want too much blood flowing. Good news. Dr Dancey is a superbly caring doctor who, I believe, saved me through his untiring efforts on my behalf.

On Tuesday, January 19 we were called for an appointment with the surgeon at TGH who told me I was now officially on the list for a transplant. Wonderful. I now had hope. I went to my favourite pub (The Duchess of Markham) and celebrated by buying my friends a beer. They were as delighted as we were. I was cautioned that it may be some months before a suitable lung became available, but I could do nothing about that so no point worrying.

Once you are listed it is necessary to go for an exercise programme at TGH to make sure you are as fit as possible for the surgery, which is a major affair. Again, no problem, so I started that programme on January 27, treadmill, stationary bike, weights etc. I went back the next day and alarmed the staff as I now needed 15 litres flow of oxygen to walk half a mile an hour on the treadmill. The oxygen saturation still went down to 82%. Funnily enough the bike was OK . I put that down to the strength in my legs from refereeing soccer, even though my legs were now so much thinner having lost 70 lbs since the disease started.

Saturday, January 30 at 12:23 am I was awoken by the telephone. “We have been offered lungs how long will it take you to get to TGH“. One and a half hours I said, I need to get dressed. All the work creating a schedule for my friends to accompany me to TGH for exercise was for nought.

I couldn’t believe it. 10 days from listing to transplant.

There was a little concern while we waited for confirmation that the lungs were good enough for transplant. It sometime happens that the patient is sent back home as the organs are not suitable. That must be a huge letdown for anyone waiting for a transplant. The man in the next bed who needed a new liver had already been sent away once. Heather saw his mother a day later and she told her that he had had a successful transplant. I am so happy for him.

The operation started at about 9:00 am ( I was asleep) and went for 8 hours. Poor Heather had to wait all that time to see if it was successful.

It was. Beyond all expectations. I was out of ICU in two and a half days instead of 4 to 8. Walking in 3 and eating normal meals in 4. I felt absolutely marvellous. I no longer noticed I was breathing. It just seemed to happen on its own. The medical staff at TGH from the surgeons and other doctors to the nursing staff and personal care assistants are first class.. They are extremely competent, attentive, caring and friendly. They are truly the best in the world.

I was discharged February 11 and sent home after a busy day of receiving instructions, booking follow up appointments and scheduling rehab. And of course detailed information from the pharmacist on the legion of drugs I will be taking, some for the rest of my life. I don’t care how long I take them.. I now have a long life to look forward to instead of a few months.

22 days from listing to discharge. Incredible. How could I be so fortunate.

While I was in hospital I again found out how good my friends were and how much they cared. Thank you to all of them, It truly helps when you know people are pulling for you.

On the way home I was reminded that life is not always going to go all your way. We got a puncture and had to be towed off he highway for repair. Heather was quite upset. I thought it was quite funny. If those are to be my biggest problems from here on in, bring them on.

I feel so good and so thankful. I am so grateful to the person who signed his donor card and to his family who must have loved him and agreed to his wishes to be a donor. I urge everyone to sign their donor card. The surgeons can do the transplants with great success they just need the organs to work with.

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