Saturday, 16 March 2013

Clinic Day

06Mar - Wed
Today is a clinic day. What that means is that we leave home by 7:30am to arrive at the hospital before 8am and get a jump on the queue at the Blood Clinic. When we arrive, Carman is given number 98 and they are serving number 93. Not bad! We are there for less than 20 minutes and move onto our next appointment in the X-ray department. There is not a soul in the waiting room when we arrive and the technician comes to get Carman before he can even get nicely settled in the uncomfortable hard chair in the waiting room. This is going well so far indeed!

Once we’re done at x-ray, its time for breakfast and a coffee, so Carman can take his 9am meds. He finds a place for us to sit while I join the line at Tim’s. A couple of coffees and breakfast sandwiches in hand, I find him in the seating are by the elevators engaged in conversation with Don. Don is from the GTA and is in today for his 6 year post-transplant check-up. He tells us he is doing fantastic, feels great and gives Carman a few hints on managing his meds and fluid intake to ensure he takes the best possible care of his kidneys. the immuno-suppressing meds are toxic and very hard on the kidneys, so it’s important to monitor their health closely. During our conversation, another couple take the seat adjacent to us and shortly thereafter, bells start ringing and musical alarms start going off. It’s 9:00 and time for all to take their meds!

This is the transplant community - two out of three get out their meds, so the obvious question to the third person is “hey, what about you!”. Don assures us that he has taken his already, but thanks everyone for their concern.

We finish our breakfast and head upstairs to the lab for our Pulmonary Function Tests. We are early, but check in anyway in case they’ve had cancellations or no-shows and we can keep moving thru the day at a good pace. We only wait about 20 minutes and the technician comes to get us. Yeah!

First is weigh-in, followed by the testing, which includes a spirometer test and the panting box:
  • FVC (forced vital capacity) - for this Carman must inhale a few regular breaths then inhale as deeply as he can and blow out as hard and with as much force as possible, for as long as he can. Our technician coaches him through this maneuver 3 times to get a good reading and is very impressed with his results.
  • FEV1 (forced expiratory volume) - this is the real deal, the measure that is scrutinized by the team to monitor how Carman is doing as he uses his new lungs, or rather how they are getting along with their new keeper. This is the measure of the amount of air that he blows out in the first second of the forced vital capacity maneuver.
  • FEF max (forced expiratory flow, maximum) - this is the fastest flow that Carman can forcefully blow out.
  • FEF25-75 (forced expiratory flow between 25% and 75% of the vital capacity) - this is the fastest flow that Carman can forcefully blow out, measured within the middle half of the forced vital capacity maneuver.
The next part of the pulmonary function testing is done in the panting box or body plethysmograph; Carman’s lung volume can be determined by changes in pressure in the sealed glass box, as he breathes in and out, in a steady panting rhythm.
Carman was barely able to do these tests and couldn’t do the panting box tests at our last clinic appointment (in January) as he couldn’t take a deep enough breath, nor could he breathe for 5 minutes just on room air (with no assistive oxygen), a requirement for the panting box testing. 
In Feb 2008, at the time his IPF was diagnosed, his FEV1 was measured to be 75%. Last fall it was around 34% and today - about 3 weeks post transplant it is about 71%! 
To get a comparison we have to go back as far as one year ago. Carman’s total lung capacity (TLC) in March 2012 was 2.74 vs 4.73 today. Expressed in litres of volume, in March  2012 his capacity was 1.26 L and today it is 2.66 L. Bottom line...he has been gifted with healthy lungs and he can breathe!
(stolen image from the
PFT lab bulletin board)
As he continues to do his workouts in the Treadmill Room and use his incentive spirometer at home to exercise his lungs, his function should continue to improve over the next few month to somewhere in the range of 3.7L.
Once we’re done at the lab we head downstairs. We’ve arrange to meet our friend Shilpa for lunch so will wait for her in the Atrium. We’ve brought our lunch from home and once we find each other, we settle into a quiet corner to visit.
By 1 we’re heading back upstairs to register for our clinic appointment in the early afternoon. It’s our first meeting with our post-transplant coordinator so we’re anxious to meet her and get the skinny on how things are looking from all the test results.
In a series of Coordinator in, then out; Dr. in, then out; surgeon & medical fellow in then out; Coordinator, Dr. & medical fellow, in, then out meetings - we find out that everyone is as pleased with Carman’s progress as we are; he is right on track and in some ways surpassing what they’ve expected and as one Dr. said “you look fantastic!”
The surgeon wants to leave his chest tube sutures in for another week, but our Coordinator removes the remaining staples from the surgical incision and we’re finally on our way. 
When we get home around 5pm, we’re tired but happy with the report on our day and are welcomed by the smells of supper cooking - Mom & Paula have been busy while we’ve been away today and have prepared some of the ham that Matt 7 Danica cooked and froze for us, along with some potato scallop and vegetables. They even made a stop at our little convenience store and scored a Hagen Das bar for each of us as a treat after dinner.
While Carman gets a much needed nap, we break out the cards for a game of 45s. It soon becomes obvious that I’m out of practice and Mom and Paula take Dad and I to the proverbial cleaners!


2 comments:

  1. PJ: Thanks for all the great information in this patricular page. I've been going for PFTs but had no idea about what each function was really for. There is so much to learn about to cope with all this. I haven't had to learn this much since.................darn, here comes the alzheimers again!!

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    Replies
    1. Hey Carl - you're most welcome although please keep in mind that I'm not a medical professional, so don't take my writing as medical advice or 100% accurate for that matter. It is just my interpretation of what I have read through researching both Carman's illness and the various things we've encountered along the way.

      You are absolutely right, there is lots to learn! Most of us don't have any of these things on our horizon - and certainly don't plan to encounter them in our lifetime. So much of the journey has been about new vocabulary and questions and answers...we found we just didn't know what questions to ask at first and although we're getting better at that, we still miss things from time to time.

      We have found the team very receptive to our questions and great at providing explanations - my research has just helped us ask better questions.

      All the best with your learning journey!

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