Idiopathic pulmonary fibrosis (IPF) is a cruel disease, one that complicates many aspects of a patient’s life. Constantly feeling short of breath and exhausted is not for the faint of heart. It takes an enormous amount of strength and perseverance to live with IPF on a daily basis. That said, many patients adapt and learn to live with this life-threatening lung disease, carrying on their daily tasks including work, medical and health-related appointments. A recent dental visit made me realize just how much this disease can complicate many unexpected aspects of our lives.

Following my IPF diagnosis in April 2016, I was quickly connected to our local transplant centre and a team was mobilized to monitor and assist me with the progression of this disease. Knowing the eventual need for lung transplantation, I have been assigned a pre-transplant assessment coordinator and a transplant social worker, both members of my healthcare team that I meet with regularly. One of the roles of the pre-transplant assessment coordinators is to review your medical health history, and ensure all regular appointments and check-ups are occurring. 

One of my first conversations with my pre-transplant assessment coordinator was how often I visit the dentist. She shared with me how important it is that my mouth, including both teeth and gums, remained clean and free of infection. I couldn’t understand why this was important, and she told me it is because our gums are the fastest, most direct access to our bloodstream, and our mouths are full of bacteria. Therefore, ensuring there is no infection and maintaining the best oral hygiene possible is very important for IPF patients, but especially for anyone considering a transplant. Since this conversation, I’ve been very diligent at booking regular visits to the dentist.

At a recent dental appointment however, I really had a tough time, and I can only attribute this difficulty to the progression of IPF. As all patients with a chronic illness should, I disclosed that I had IPF at my first dental visit following my diagnosis. At this time however, I wasn’t really symptomatic of my disease and I was rarely experiencing shortness of breath—usually only upon exertion or during really hot and humid days. Therefore, I confirmed with the dental hygienist that she wouldn’t need to make any accommodations during my appointment or changes to my care. Unfortunately, this is no longer the case as I struggled to breathe during my latest cleaning at the dentist.

Upon my arrival, we reviewed my medical health history and I confirmed again that I was living with IPF. I didn’t suspect I would need anything done differently during my appointment, as I hadn’t needed accommodations in the past, so we proceeded with my cleaning like normal. After a few minutes of being in the chair that was reclined to be parallel with the floor, and having my mouth open for the cleaning, I had to ask the hygienist to stop. I couldn’t breathe, and the anxiety was starting to set in. 

With much compassion, the hygienist sat me up and asked what I needed to help me get through this appointment successfully. I admitted that I didn’t know because I didn’t anticipate this struggle, but suggested some things that might help me. Once we implemented my suggestions, the appointment went a lot more smoothly and in hindsight, I wish I’d thought to share these needs ahead of my cleaning. As a result, I thought I’d write a blog for the IPF Foundation so that other patients can be aware of their needs during regular dental visits, hopefully making them a little more successful than this one was initially for me. 

Don’t be afraid to ask for what you need. Once I spoke with the dental hygienist, she was very accommodating and supportive to ensuring my appointment could be as comfortable as possible. Below are the accommodations that helped me get through the appointment. 

1. Don’t lay your chair back fully

I have talked to many patients with IPF who have shared how difficult it is to lay flat on their backs. I didn’t know that dental hygienists don’t have to lay you completely flat. That is just the optimal position, however, many hygienists are comfortable completing your cleaning with your chair only partially laid back. Once my chair was positioned on an angle, the pressure on my lungs felt relieved and I wasn’t coughing or struggling to breathe like I was when my chair was laid flat back.

2. Ask for frequent breaks

While this may take longer, my dental hygienist was accommodating when I asked for more frequent breaks between having to keep my mouth open. We divided up my cleaning into four sections, the right and left side of my bottom and top jaw. After she finished one section (ie. the teeth on my lower right side), she would stop and let me catch my breath before starting the next section. Overall, my cleaning took longer but my anxiety was much more controlled because I could breathe better with frequent breaks. 

3. Keeping your supplemental oxygen on

It was my silly assumption that having my oxygen on during my cleaning would get in the way of the dental hygienists’ work. When I explained that I have supplemental oxygen, she encouraged me to wear it, as she was very comfortable and familiar with how to work around my nasal cannula. This made such a difference in my ability to breathe well and remain calm during my cleaning. 

My hope is that these tips help make your experience with dental cleanings more successful as a patient living with IPF. It is important to regularly visit your dentist, especially if you’re looking at lung transplantation in the near, or even distant future. 

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