Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Hina P. Ansari

GET UPDATES FROM Hina P. Ansari
 

Our Organ Donation Journey: Life Begins and Ends With a Breath

Posted: 02/29/2012 2:32 pm

I stumbled upon Helen Campbell's television interview on the local news about her tweet to Justin Beiber in the hopes of spreading much-needed awareness on organ donation. His generous retweeting resulted in 2,000 more organ donors.

Then it led to her recent headlining appearance on The Ellen DeGeneres Show. I was thrilled for her. For reasons you might not think.

She and my father have a lot in common. Both suffering from the same disease and both patiently waiting for a lung transplant.

For us, it all happened so unbelievably fast and excruciatingly slowly.

He knew something was just not right. As with many non-gym-going mid-'60s Indian men, lack of physical fitness was a running joke. My father, an orthopedic surgeon, would brag about standing for hours on end while operating, or walking for what could easily be calculated as miles during his daily multi-floor rounds at the hospital -- but the last thing he was tempted to do was to hit the gym (or go to the shopping mall, for that matter, which is just a guy thing, really).

In 2007, after a battery of tests, various opinions and crossing out all other possibilities for his breathlessness, the diagnosis was confirmed: idiopathic pulmonary fibrosis.

IPF is a gradual hardening and scarring of the alveoli (air sacs) and interstitial tissues (tissue between cells) of the lungs, causing stiffness and making them less and less able to contract and expand when taking breaths. The expansion of the hardened tissue would then lead to a decreased lung capacity. So in short, and not mincing words here, you are slowly suffocating to death. The disease was new to us. We hadn't heard of anything like this before. So we did what anyone would do. We Googled.

"Five years." That was the hard and fast number thrown at our faces everywhere we turned. The average life expectancy of an IPF sufferer.

Five years.
60 months.
1,825 days.

The reality of our parent's mortality was something we couldn't (as much as we wanted to) avoid any longer.

An international search commenced for any medication that may help. Friends and relatives in the medical field and elsewhere started reaching out to their colleagues, friends and acquaintances. Facebook groups were joined, and online chats resumed at rapid-fire pace. We just wanted to find something -- anything -- that could, at the very least, buy him a few more years.

Then in December 2009, we found ourselves on a flight to Tokyo. We were set to meet a doctor who led numerous clinical trials with America's Duke University on a medication that which seemed to delay the inevitable. This medication was, at that time, awaiting approval by Health Canada and the FDA, with speculation that approval would happen the following summer. We were torn. Should we wait until then, or should we head to Japan now? As much as we wanted to, we couldn't wait another six months. So with my father's treating specialist's blessing, we head east. Far East. (In hindsight, I'm so glad we did as that medication still awaits approval here in North America.)

It bought us some valuable time.

Last summer, his oxygen intake dropped significantly and the team of specialists at Toronto General Hospital took his case for review for possible inclusion on the transplant waiting list. Taking everything into consideration, as they do with all patients, they measured risk, the patient's existing health, criticality, and, of course, priority. More tests were ordered to measure his physical strength and his heart strength to see if his body was able to withstand such a demanding procedure, if and when the time came.

Labour Day weekend. As the world was brushing off their summer haze and resetting their clocks for the start of school, work and the fall season, we got the news. All test results were pointing in the same direction and the team agreed that The List was where his name needed to be.

Great. Now what's next?

Well, lots actually. It's not like we just sat around and waited. We had lots to learn, adapt to, understand and appreciate. For instance, what do we do when The Call actually does come? How much time would we have? Who is the designated driver? Cab or car? It was an endless list of minutae, which needed to be addressed, ironed out and doubly confirmed.

In addition to Dad receiving a dedicated pager (which he proceeded to test every week to make sure it worked), the transplant team also received a list of phone numbers that they would call as part of their call roll-out process. And we were given a bulging binder that contained important contact numbers, guidelines and other pertinent information that all newly-listed patients must become very, very familiar with. Together as a family, I along with my parents and siblings spent one afternoon huddled around our dining room table and formulated a phone tree, which listed who calls and texts whom when the time comes. And obviously out-of-town vacations were cancelled. No one was going anywhere.

In general, we all had a collective awakening and a major shift in our overall priorities. What seemed so important before became just so laughably trivial.

Living in the present was what the doctor ordered. We were embracing it wholeheartedly.

My mobile number was one of the contact numbers given to the transplant team for their records. This meant that I had to answer every single call that came in, as The Call could be coming in from various area codes. Dealing with telemarketers seemed so painless and was a welcome distraction (and yes I do have call waiting, which I answer). I don't think I had ever been more interested in hearing about their long distance rates or what kind of duct cleaning they provide. Even though both are totally useless to me as I'm a Skyper and live in a condo -- but those are just technicalities, really.

And finally, the "gym" made its first foray into my father's life. It's what I like to call the "transplant family": a unique subculture that all of us were immediately initiated into.

At Toronto General Hospital, there is a dedicated physiotherapy room for lung transplant patients. Patients who, just like my father, are patiently waiting for their lung -- or lungs -- and those who have received their new one. All is overseen by a superbly dedicated team of specialists led by Denise and Khaya who monitor everyone's health and fitness levels, which are then reported back to the respective doctors and transplant specialists. Denise and Khaya are always there, meeting new patients, making sure everyone is at their comfort level and always ready to pep up the room when there seems to be a lull of inspiration. Everyone has to attend three times a week, completing the set series of exercises as part of the overall goal to build up the muscles and prep the body for that time. Realistically, that time may never come for some, if you take a look at the statistics.

According to Ontario's Trillium Gift of Life Network, to date we are one of the 66 persons on the list waiting for new lungs. So far in 2012, 21 lung transplants have been completed. The average wait time for lungs can be approximately 18 months. And many factors need to be considered to find a match, namely the size of lung, age of donor, age of recipient, and blood type.

In Ontario only 20 per cent of those eligible have registered their consent to be an organ and tissue donor.

Here are more sobering stats:

In Canada in 2010: 2,153 organ transplants were performed:

  • deceased kidney donors = 749 transplants
  • living kidney donors = 485 transplants
  • deceased liver donors = 379 transplants
  • living liver donors = 64 transplants
  • heart = 167 transplants
  • lung (single or double) = 178 transplants
  • pancreas = 23 transplants
  • islet cell = 44 transplants
  • intestine = 1 transplant
  • 'other' types of combined organs (such as heart-lung; liver-kidney etc.) = 63 transplants


In Ontario, currently there are 1,509 patients are waiting for an organ transplant.

During 2010, 916 organ transplants were done:

  • deceased kidney donors = 316 transplants
  • living kidney donors = 221 transplants
  • kidney-pancreas = 19 transplants
  • deceased liver donors = 166 transplants
  • living liver donors = 42 transplants
  • heart = 68 transplants
  • lung = 83 transplants
  • heart-lung = 1 transplant

So last September, when all the kids were going back to school, we too were taking on the roles of being new kids on the block. There were new instruments, oxygen tanks, a new daily routine. We were surrounded by new faces who, over time, became our solid source for humour, inspiration and comaraderie. It begins like when one joins a new club; it starts with a series of familiar nods and friendly smiles. Then before you know it, names are exchanged and life stories are shared. You immediately notice those who are very familiar with the routine as ones who have been there (on The List) the longest, to freshmen who are learning the exercise ropes for the first time.

Then we saw it. It begins with a sudden absence of a familiar face. Quiet concerned whispers filter among the regulars questioning that person's whereabouts. However just as the whispers appear, they quickly disappear out of respect and not wanting to be too intrusive.

Then a few weeks or sometimes a couple of months would pass before that familiar face returns -- triumphant, just like a Roman warrior returning home after a gruelling victory in the Colosseum. These warriors can now finish a sentence and walk a few steps, all without losing a breath. And most notably you can see their smiles, as they're not hidden by their oxygen masks.

They got 'em.

It's being witness to such human strength that gives us our own much-needed injection of fortitude. Seeing someone who -- in the most literal sense -- has life breathed back into their face, arms, legs and their soul.

You can't put a price on that kind of inspiration.

So now we are hitting the six-month mark and are more determined than ever to push on through -- for not if, but when The Call comes.

At the same time, we are doing what we can to spread awareness about organ donation. Hence this post.

The stats show that the numbers are embarrassingly low. Lets resolve to change that.
I'm a new register. Please join me.

For more information on organ donation and how to register as an organ donor go to www.beadonor.ca.

RELATED ON HUFFPOST:

 

Follow Hina P. Ansari on Twitter: www.twitter.com/hinapansari

FOLLOW HEALTHY LIVING