What was recovery from the transplant like?

It was probably the most physically, mentally and spiritually difficult thing I’ve ever had to do. I was in the intensive care unit for four days and in hospital for 13 days. Then, once I was discharged, I had daily hospital visits for 90 days—for physiotherapy, blood work, bronchoscopies, pulmonary function tests, CT scans and chest x-rays. My wife and I had to rent an apartment downtown so we could be closer to the hospital; and both of us were required to attend all appointments before and after the operation.

How did CMV complicate your recovery?

CMV is a known post-transplant risk. I was on an oral CMV medication for the first nine months following the surgery.

Once I stopped the medication, I began to experience nausea, diarrhea and severe abdominal pain as my viral load was a hundred times higher than normal. It was the start of a three-year battle against CMV.

The standard approach is a treatment dose that lowers CMV to an acceptable viral load, followed by 90 days of a prophylactic dose with monitoring to ensure your CMV level is negative. Then they take you off the medication and see if the level remains negative. Well, every time they did that my viral load skyrocketed and we would repeat the same process again. We did this for two years—and then I finally said enough. The treatment plan wasn’t working.

I proposed a different treatment plan after extensive research on CMV. My health-care team agreed. This time, I took two simultaneous treatments for 180 days. One was an IV medication and the other was an oral medication. I came off both medications in September 2022 and since then my CMV level has been negative and I remain in remission.

What drug coverage challenges did you face?

The first oral CMV medication I took lowered my white blood cell count to dangerous levels. An alternative was proposed, but it cost about $7,500 a month and I had to get pre-authorization from the private payer before I could start treatment because it didn’t have all provincial regulatory approvals. It took five weeks to get approval from the private payer and during this time I was at risk of getting seriously sick or even dying without access to a new treatment.

How can employers better support employees like you?

Flexibility and communication are critical. A transplant doesn’t happen according to a schedule; it happens when an organ becomes available and it’s a match. The recovery period varies too and, especially after a lung transplant, it’s very difficult to go back to work full time in the first year, given fatigue and the number of follow-up medical appointments. Transplant recipients shouldn’t work in a high-density environment where people might be sick and not wearing a face mask. In a perfect world, employers would allow transplant recipients to work virtually or provide accommodation so they’re in a more isolated area of the office. It’s also mandatory for transplant recipients to have a caregiver for pre-transplant and post-transplant support. My wife was off work for eight months to attend all the appointments; and we were very fortunate that her employer understood she had to focus 100% of her time on my care while also being paid 100% of her salary over this time.

What would you say to others facing a transplant or dealing with serious effects from CMV?

Be your own advocate. Have good communication with your health-care team, co-workers, friends and family. Life won’t ever be the way it was before the transplant. You will have to adjust to a new normal. Also, know there are new treatments for CMV, and there is ongoing research, education and technology to improve patient experiences.