These Shoes are Made for 6-min Walks & Farewell to Paula

04Jan

So...here we go, back to January to fill you in on our clinic appointment and tests on the 3rd & 4th. 

In addition to the ECHO, we made our trip to the pulmonary function lab, where Carman did spirometry and  6-minute walk tests. 

Ready, set...

Although its an exhausting challenge for him, Carman can still do the spirometry test. During this test you have a nose clip on (to prevent air escaping thru your nasal passages) while you take in as deep a breath as possible, then blow out all of the air as fast and as hard as you can, into a tube. While many patients will make several attempts at this get a best performance measurement two attempts is all that Carman can handle. Fortunately, the technician, Nan, says she has a good measure after his first attempt. Phew! 

He is no longer able to do the panting box test (sometimes called the body box) or plethysmograph which measures lung volumes. To do this test you are required to sit and rest while breathing room air for 5 minutes before being placed in the glass box. You are then asked to sit in the booth with the door closed and pant into a mouthpiece.  The total amount of air in your lungs after a full inhalation is called total lung capacity. The amount of air in your lungs after you have fully exhaled is called residual volume. The ratio of these two provides a measure of your lung disease. 

With the progression of his disease, Carman can no longer breathe room air, he must be assisted with oxygen at all times or his saturation level drops too low. 

The results of pulmonary function tests give the team additional data with which to assess each patient’s current health (or the state of their illness) and chart the progress of their illness.

I’ve used PCCA.net, Wickipedia and a number of other sites for my research, but there is a wealth of information on the internet about pulmonary function tests.

All of this to say that Carman’s function was measured to be about 34%. Next he completes his 6-minute walk, covering 412m (back and forth on a pre-measured route in the hallway) but he is breathless and his O2 sats have dropped to 72% by the time he finishes. He did however, stop one of the doctors in his tracks with his wild shoes! Two docs were crossing the hall as he approached them on his way to the turning point, one of them did a double take when he noticed Carman’s shoes and actually turned around to watch him walk down the hall, so he could get a better look.  

While Carman’s function has been between 30-35% since last fall, his level of breathlessness and oxygen requirements have changed significantly since then. By way of illustrating this for you, Carman uses a high-flow cannula, with an oxygen flow of 4-5 Lpm while sleeping and 5-6 when seated and at rest. If he is chatting on the phone or eating, the flow must be increased to between 6-8. The flow of oxygen he requires is provided by a room-air concentrator (up to 10Lpm flow) when we are at home and by portable liquid oxygen tanks or strollers to supply a flow above 10Lpm or if we leave our condo. 

When he leaves his chair to move about the condo for any purpose (or if he has to get up during the night), he switches to a non-rebreather mask attached to a stroller, set at a 15Lpm flow of oxygen. What this means is that we keep a stroller of liquid oxygen by his side at all times. Any plans for a trip outside the condo involves calculating how much oxygen we will need, whether or not we’ll be able to refill strollers as needed from the travel tank in our vehicle and if there are any stairs involved.  If the answer to either of the second two issues is no, we don’t go.

This protocol is to ensure that Carman’s blood oxygen saturation level will stay above 90%. It doesn’t always work. His sats will drop into the low 80’s or even 70’s when, for example, he blows his nose, takes a shower or gets changed. Following any of these activities he must rest to calm his breathing and get his O2 sats back up above 90%.

When we go to the hospital for physio or an appointment we leave our condo door and head to the elevator (a distance of about 30m) then descend to the parking garage and head to the car (another 20m). During this trip (as he does any time he moves about in the condo), Carman is using the non-rebreather mask with a 15Lpm flow of oxygen. At the beginning of December, this trip posed no real difficulty as long as we took our time to do the walk. Now, even going at a slower pace, by the time Carman is seated in the vehicle, he is severely breathless and it takes 5-8 minutes of being seated before his breath calms.

There is no doubt that his disease is progressing, as we knew it would. We still go to The Treadmill Room 3 times per week and he is still giving all he has to his workouts. In fact, for the last few months, when they are in hospital, he has been doing an extra squat for Mark & Jess, extra steps for Phyllis and an extra 2 minutes on the treadmill for Shilpa & Marie-Eve. He is very thankful as each of them is discharged from hospital!

Paula & Carman waiting for the doctors for our appointment...

We discuss these changes with the respirology doctors this morning. As well, we ask about the new medication, Esbreit, just approved for use in Canada. It has been shown to slow the progression of the disease if administered early after onset. Unfortunately, Carman has end-stage IPF so it is doubtful there would be any benefit in prescribing Esbreit for him.

This is nonetheless an exciting development for IPF patients. Read the article about it’s approval for use here - Esbreit

Carman, Mark
& Alisha

Our appointments have taken the entire morning, so we must bust a move to get Paula to the airport for her flight. First, we need to refill the oxygen stroller and head to The Treadmill Room where there are tanks we can refill from. On the way, we run into Mark and his daughter Alysha, just leaving a follow-up apppointment. He gives us the thumbs up - his culture testing for infection has come out clear so he can return to physio! Yeah!

I leave Paula & Carman in the Atrium and head to the parking garage. On the way I’m struck with a brilliant idea. We won’t have time for lunch so I visit the gourmet street meat vendor in front of Sick Kids Hospital and score us each a deluxe barbequed hot dog!

Traffic is surprisingly light on the Gardiner and 427 Hwys, so we manage to deliver her in lots of time to catch her plane home. We’ve kept her visit very busy, so she’ll definitely need the weekend to recover before heading back to school to face her busy grade ones on Monday!