A Son’s Personal Journey with IPF

A Son’s Personal Journey with IPF

My mother’s name is Kathryn Robertson, and in the Spring of 2008, she was diagnosed with an Interstitial Lung Disease. As those who are acquainted with Lung Disease will be aware, this is a broad diagnosis, covering a broad spectrum of lung afflictions. Once this diagnosis was given, the process of weeding out which particular disease was affecting my mother began in earnest.

In February of 2012, we were given this final diagnosis of Idiopathic Pulmonary Fibrosis. My mother handled the news with the strength and grace with which she has been associated throughout her entire life.

Myself, and my sister, being the “glass half empty” sort of people, were devastated, and the news took a serious toll on us emotionally. With my mother being the only parent the two of us had ever known, the prospect of a life without her eventually, was brought suddenly, and violently to the forefront of our consciousness. I became detached from my children, my wife Rachel (the love of my life), and began a descent into the morass of self-pity and drug use to cope. This ultimately led me to two suicide attempts, and a visit to Homewood Rehabilitation Center in Guelph, where I was able to come to terms with my mother’s mortality, as well as my own, and by extension, the mortality of everyone on Earth. I came to realize that I had made my mother’s illness about ME, and that by distancing myself from her, and my loved ones, I wasn’t protecting myself from being hurt, I was wasting precious moments that I could never get back. In hindsight, although not intentional, it was an entirely selfish way of approaching this news, and something I hope to make up for to my mother in the coming years, by being HER rock, as she has ALWAYS been mine.

We jumped through the hoops of trying to get Perfenidone into the country from India, losing money and patience in the process before Esbriet was finally approved for reimbursement by the Ontario government. The experience of dealing with that level of bureaucracy for the first time left me extremely embittered with the government processes, and Health Canada. However, Esbriet WAS finally approved, and after signing multiple petitions to MP’s, and MPP’s, I like to think that the stress that our family, and many others went through to get this medication approved, will benefit others afflicted with IPF in the future, as they will hopefully be able to gain access to Esbriet much more readily.

During my battle of coming to terms with IPF and its appearance in my mother’s life, I met one of the most upstanding individuals I have had the privilege of knowing, and calling friend, and brother.

RichCpl. Richard Holmes (Ret) is my roommate, and someone who I very quickly bonded with, and became one of the most trusted people I have ever known very quickly. He proudly served Canada in Afghanistan, and his sense of respect and code of honour meant that before I could even finish the sentence in which I was asking him to run the Angus Glen 10k with me to raise awareness for the Canadian Pulmonary Fibrosis Foundation, and IPF in general, he accepted with gratitude that I had asked him. I have only known Rich for a few moimagejpeg_2(2)nths, but know that he will be a mainstay in my life, and that of my family. And given the closeness in date to Remembrance Day on which we ran the race, I feel that it is only right that the race also be dedicated to our Fallen Heroes, and every single soldier that risks his or her life to ensure the freedoms so often taken for granted in our amazing country.

Rich and I both ran the Angus Glen 10k on my birthday, Sunday November 8th, 2015. I completed the race with a personal best time of 53.33, and Rich 20151108_094151finished just about one minute later. I thought it fitting that rather than making my birthday about ME, I spent it focused on the person who actually gave birth to me. I think that this may be a tradition that I continue into the future. Rather than thinking about self, I will spend November 8th thinking about how grateful I am for having such an amazing Mother, who is the strongest person I have ever known. Perhaps birthdays SHOULD be thought of this way. Instead of gifts, I will thank 20151108_094159divine providence for giving me the greatest gift I could ever receive. Kathryn Edith Robertson, and the privilege of calling her “Mum“.

I wish that I didn’t have to put my Mother, wife, sister, children, and all those around me through the Hell which they endured in my personal battle with coming to terms with my mother`s illness, but had I not gone through that, I would not have been able to appreciate the time I have with her. I hope that this article itself does not come across as focused on myself, but rather serves to help any family members of those afflicted with IPF who may be struggling with coming to grips with this disease.

My email address will be made available to CPFF for anyone who just needs to talk about how they`re doing, and for any help or advice I can offer.

Innis Ingram20151108_092208

  1. It will be much appreciated if you can let us know how Esbriet helped your mother. Was it effective? What were the bad side effects? How long has she taken the drug? What improvements can you tell?
    My wife, who is 83, has IPF and just got a bottle of Esbriet, but is afraid to take it due to the potential bad side effects. Your response can help us decide to take the medicine. thanks, John

    • I also would like to know how Esbriet helped your mother. My husband is being pressured to take it and they cannot say if it would help. I too am afraid of the side affects. It unfortunate all the reviews I read are bad. I wish patients who have a good experience would share.

  2. I have been taking Esbriet for a year, I have not had devastating side effects. I was lucky, I was not taking any medication before being diagnosed. They told me I had diabetes and IPF. The diabetes medication was the that caused the most side effects. Which really upset my stomach. I have had skin problems and bruising and rashes. But they go away. I take 2300 mgs a day or 9 pills a day. At first they did make me very tired but after few months that when away. When I first the pills there is warm pressure in my chest but it going away. I have figured out that if I take my first dose at noon, then 8 pm the next at bedtime, that fits my schedule better. I have lost 40 % function and oxygen at 95 still, no oxygen needed yet. It has stayed at 40 a year now. But the coughing is worse. I’m not doing as much because of the cough, I stay home more. If you have IPF you know how that feels. I am 62.

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