My Journey with IPF and Transplant

My Journey with IPF and Transplant

By Dr. Gary S. Ford, Newmarket, ON

I am a 58-year-old dentist expecting to retire to the “good life” in 7 years, when I heard my respirologist say: ”You have Idiopathic Pulmonary Fibrosis (IPF). If you take 20 men that have been diagnosed with IPF, without treatment, at the end of 2-5 years, only one will still be alive!” That statement was followed by: “The only treatment is a double lung transplant, and there are no medications that will help!” That was 30 July 2013, the day my world changed forever! Luckily, since then, Canadians have access to two treatments that help slow disease progression, with more in development.

Over the next 4 years, here are a few tips I learned to cope with IPF:

Tip #1: Time to do your Bucket List! Do your research about IPF, and to the best of your ability continue to live. We went on a cruise!

Tip #2: Don’t be afraid to ask for support from family, friends or anyone in your circle who can help as you will need lots of care. In my case, my wife was able to take on the role of caregiver, and it became her full time job.

Tip #3: Follow your specialist’s orders with regards to medications and be ready to be your own health advocate. For example, it took us nine months to get a drug (Esbriet) to be delivered!

Tip #4: Tell people what IPF is…educate, educate, and educate some more! While on supplemental oxygen 24/7, I refused to go out, since I didn’t want to look like an “old man.”  You may have IPF but don’t let IPF have you! Forget about pride, and get out and do what you can. You will be amazed at the people who will talk to you when you wear an oxygen mask. Talking to people about IPF helped me. It kills as many people as breast cancer does, yet most people know nothing about it. Encourage others to visit BeADonor.ca, for as many as eight people may be saved through their donation.

Tip #5:  Have an open and honest talk with all your family members about IPF and what to do if things don’t go well and you become ill or even in the event of death. The discussion should include finances as well, since you may not be able to work any longer.

Tip #6: Avoid any source of infection, including family members. You are sick, and any cold/flu could pose a great risk to your well being…so avoid them!

Tip #7: There is a “window of opportunity” where you are “too healthy” to where you are “too sick”. Be very aware of that window and ensure you are talking with your respirologist when surgery would be appropriate.

Tip #8: When it comes to transplant, be prepared. This is one of the hardest surgeries you will ever have, so take the physio exercises seriously.  You need to be in the best shape you can be before the surgery. It will help you get through the surgery and to recover better and faster! Learn to talk to others with IPF, but to control your expectations and gain patience as you “wait” for a suitable donor. Rejoice when you find out a patient was successfully transplanted. Be amazed as you watch postoperative patients doing physio just days after their surgeries, without oxygen! You will believe in miracles!

Tip #9: Be prepared, pack lightly and hope it isn’t a “false” call.

By April 2017, my health had deteriorated to status two. On 13 April, I got the “call” to report to TGH as “they may have a suitable donor”. There are “false calls”, where you check in but then are told the lungs weren’t suitable and to go back home. However, on 14 April, Good Friday, I underwent a 12-hour surgery for a double-lung transplant followed by a 26-day stay at TGH. I was discharged on 10 May.

Please find attached a couple of photos. Both are 3-months post-surgery and are taken at the national park in Tobermory – (1) touring Flower Pot Island and (2) walking back from the Grotto with my wonderful wife and top notch health care provider, Louise. This was my first long walk outside, without oxygen and/or walker! But nobody warned me how long the walk would be! As a side note, we celebrated our 40th wedding anniversary while I was recovering in TGH, 3 days before I was discharged. I had promised Louise that we would repeat our vows on the sandy beaches of Maui, Hawaii, but I guess that will have to wait for next year…at least now there will be a next year!