A Idiopathic Pulmonary Fibrosis (IPF) survivor and double lung transplant recipient, Bob spends much of his time these days inspiring hope and providing support for others affected by life-threatening lung disease. Here he shares his personal story.
My lungs gave out on a golfing holiday.
In 2014, my wife and I went on a golfing holiday to Oregon with three other couples. We were playing on courses about 3,500 feet above sea level – considerably higher than from where we’re from on the lower mainland of British Columbia.
After a few days into our trip, a member of our golf group saw my blue fingers, noticed my shortness of breath, and remarked on how difficult I was finding it to breathe. My breathing was so taxing I would frequently cough so hard two of my ribs would pop out of place.
My fellow golfer worked as a nurse so I took her comments seriously when she said,“Bob, I think you’ve got a lung problem. I recommend you see your family doctor when you get home.”
That’s exactly what I did.
I immediately took the reigns and became more proactive about my health.
I suspected my lungs might be an issue, even though I exercised regularly, ate fairly sensibly, and never smoked. I had a persistent cough and post-nasal drip that I just couldn’t shake.
In 2012, my doctor sent me to an Ear, Nose and Throat (ENT) Specialist who fixed my deviated septum, but the procedure did not correct my coughing or post-nasal drip.
When I got home from that golf holiday, I got a new doctor who immediately referred me to a respirologist. I was diagnosed within a week with Idiopathic Pulmonary Fibrosis (IPF).
Idiopathic means relating to or denoting a condition, which arises spontaneously or for which the cause is unknown. Doctors do not yet understand the cause, but believe factors such as medication, the environment, genetics, and habits like smoking may all play a role in its development.
Getting sicker while maintaining hope was sometimes hard to handle.
The long and short of it is my lung disease was quite advanced, but I did not qualify right away for a lung transplant. In my case, my doctors found an 80% blockage in one of my arteries that required three stents. I had to wait six months to fully recover from the stent procedure before a lung transplant was on the table as a viable possibility.
While recovering from the procedure, I started to weaken. Something as simple as doing the dishes was a monumental task requiring a lot more oxygen than normal.
When I was first diagnosed with IPF, I required three litres of oxygen a minute to keep my oxygen level above 90 per cent. Just before my transplant I was up to 18 litres a minute. And it was hard… and humbling, especially when my wife and I walked out of the grocery store.
I didn’t have the strength to carry the groceries so she did while I walked slowly beside her empty handed. Some of the looks from other shoppers seemed to shout, “What’s wrong with you? Why don’t you help your wife for heaven’s sake?” Those looks were too much to handle some days.
In November 2015 I had a textbook lung transplant with no complications. I was anxious when I got the call. Then I became very excited and needed to get it done and out of the hospital in 17 days so the people in my support group could see me.
But I am one of the lucky ones, and I remain determined to give others hope. I needed to show them that if I can do it, they could do it too! I wanted to inspire hope, be a lifeline, to pay it forward.
When they actually wheeled me out of the operating room after a six-hour lung transplant, Dr. Yee gave my wife and daughters two thumbs up. Everything was fine. I’ve had no incidents of rejection at any time, just one minor complication with my sternum. The X-ray was fine, but a C-T scan showed my sternum was not stable, which was confirmed by a clicking sensation I could feel in my chest.
In June 2016 my doctors went into the incision from my lung transplant – from armpit to armpit – put in some mesh to restrict a hernia plus inserted two metal plates to hold my sternum in place. Now it is all fused together, and luckily I do not set off metal detectors at airports.
During post transplant, the first three months are heavily regimented with going to rehabilitation classes and doctor check-ups. I also took a gazillion immune suppressants, checked my blood pressure everyday and measured my oxygen twice a day for the first six months. And a dietician checks my blood regularly and helps me improve my way of eating.
Living with new lungs and making time to pay it forward.
I retired in early 2019 and have turned into a regular househusband, taking care of most of the cooking and cleaning while my wife continues to work. I also walk a lot. I usually do about seven to ten kilometres a day walking our dog Rosco. And when I golf, I walk the course. Keeping active, eating well plus keeping stress at bay is the best way to manage me.
I also belong to a couple of support groups. One group is at Vancouver General Hospital called the Lung Transplant Support Group, which is primarily for people who are being assessed for a lung transplant. The other support group is at St. Paul’s Hospital and is called the BC Pulmonary Fibrosis (PF) Support Group, which was set up for people who have a hard time breathing and getting enough oxygen into their bloodstream.
There are about 200 diseases under the Interstitial Lung Disease umbrella. IPF is the most common.
The sad reality is not all people are going to have a lung transplant, and not all people are going to survive. Many do not qualify for a transplant. For example, a patient must be cancer free for five years and sometimes lung disease progresses much quicker than the successful treatment of cancer. In these cases, the focus is on managing pain.
Based on my conversations with many people in my lung disease support groups, I have learned a great deal and would like to make a few recommendations.
More family doctors need to be educated about pulmonary fibrosis as well as the family of related diseases that fall under the Interstitial Lung Disease umbrella.
Many people I know suffering from this disease attest that had their family doctor been more informed and acted quicker, then the course of their lung disease may have taken a different path. We see things getting better in BC’s lower mainland, but in rural regions and in the northern part of our province much still needs to be done.
Vital supports, including oxygen therapy, need to be better subsidized for those without extended medical coverage.
For example, liquid oxygen is very expensive and not everyone can afford it. Most people have bottles of oxygen as well as having a stationary machine that produces oxygen. Unless you have third-party insurance it is not always affordable. I wish we could change that and make all forms of oxygen available for all people with lung disease.
And then of course there are the few medications available today that can help patients slow the progression of their disease. Each is exorbitantly expensive.
One of these main drugs is Esbriet (pirfenidone.) Esbriet is not a cure, but can in some patients, although not all, slow down lung disease.
Until recently, British Columbia was the only jurisdiction in North American that did not have this medication in their provincial health plan to cover this drug.
Fortunately, a few of us from the Pulmonary Fibrosis Support Group lobbied the provincial government – twice in fact – to try to get it covered and today, finally, it is.
I’m not sure if it was because we had a change in government or if our lobbying efforts helped make it happen, but I know for sure what we did helped bring much-needed awareness to how this drug is critical for the survival of patients waiting for a lung transplant.
Finally, we need pulmonary rehabilitation (including exercise) programs tailored to patients with pulmonary fibrosis.
Most people with lung disease attend pulmonary rehabilitation classes, but most of the classes seem to be geared toward chronic obstructive pulmonary disease (COPD) patients, which is a common disease quite different from IPF. COPD patients find it difficult to expel air out of their lungs while IPF patients have a hard time getting enough air into their lungs because of scar tissue.
All in all, today life is good with few exceptions.
It’s been five years since I’ve started my lung disease journey and the only downside for me is I have to restrict myself from seeing my grandkids when they are sick or feeling under the weather, especially during the school year. Children carry every thing. I have caught three colds and have had one round of the flu. When I blow into the oxygen reader and my levels have dropped off the charts, it gets pretty scary. Each time, though, I’ve headed off to the post lung transplant clinic and have been treated with solumedrol and an IVIG to build by immune system back up.
If I could tell people one last thing it would be don’t ignore a cough that won’t go away. See your doctor.
The bottom line is if you have a nagging, dry cough that lingers on for weeks, I urge you to go and see your GP. If your cough becomes more prevalent, don’t’ wait… get it checked. Early diagnosis is key… you could possibly start your journey of slowing the progression of this disease down with an early diagnosis and the right medication.
And, if you are overweight, lose the weight. If you do so, being fit will help you qualify for a lung transplant. And, once you lose the weight, your body does not need as much oxygen to function, which will help your breathing as well.
Today my doctors call me a boring patient, and that’s a very good thing!
I have no issues and no problems. I am grateful my doctors are not worrying about me anymore, which allows me to better manage a stress free, healthy life and help others with lung disease do the same.
Most of all I must thank the family of my donor for their strength through the demise of a loved one to donate their organs for myself and perhaps others to live and continue with life. I live with a bit of their loved one in me and I will always respect that fact.