All he wants for Christmas is to BREATHE

I asked Sarah Taylor to write this piece for OakvilleNews.org – because she like many other families are facing a very frightening time which could be changed by a gift. Sarah is a fighter. Her husband’s story deserves to be told, until families like hers don’t live in fear. This is a story of a neighbour and resident of Oakville, who needs our support. Here is her husband’s story:

My husband, Keith Childerhose was always extremely active, from playing hockey and soccer as a boy, to chasing girls in his teens, to hardcore backcountry camping, rollerblading and hiking in adulthood. He could never sit still for long.  In his mid twenties, something went wrong.  A booster shot, followed by a bout of pneumonia and ultimately a nagging cough that would not go away led to a devastating diagnosis –  a rare lung condition called Diffuse Panbronchiolitis that attacks the lungs, causing them to fill up with fluid continually, and ultimately causing them to fail.  He was 25.  Keith is now 41. He has two children, ages 13 and 15, and lives in Oakville with me (his wife, Sarah) and my daughters.

kiethtaylorUntil this year, Keith continued to lead a fairly active life, but the winter of 2011 (even as moderate as it was) took its toll. By the spring, he could barely lift a toolbox up a flight of stairs.  Tricky, when you are a handyman and run a renovation company.  As his wife, I could see him failing daily.  Something needed to change.

Years before, we had changed his respirologist to one that was local.  A visit to local doctor in the early spring was disheartening.  He told us that Keith was not a candidate for a transplant, and to come and see him again in 6 months.  That was unacceptable.

We decided to go back to Keith’s respirologist in Toronto that we had left years before.  Thankfully, his original doctor immediately saw that he was in bad shape, and referred him to the transplant team at Toronto General Hospital.  After a week-long assessment process with many doctor appointments, testing, and meetings, we waited a few weeks and got the call in mid-October that he made the list for a double lung transplant – Status 2 (the sickest patients).  There are approximately 80 people on the list at present.  New lungs need to be the same blood type, and the right size for the chest cavity, so there is no “number” on the list, it really depends on blood type, size, and how sick someone is.  We are hopeful that the call will come very soon that will help him.  His most recent Pulmonary Function Tests show his current lung function at 12%.  Kind of like breathing through a Tim Hortons brown stir stick.

The government of Ontario recently changed the way people register for Organ Donation by creating a digital database through Trillium Gift of Life.  Many people believe that the “Organ Donor Card” is still the acceptable way to make sure that your wishes are known to your families and the medical community.  This has now been replaced by the online registration through beadonor.ca.  Through the beadonor.ca website, you can register your consent to Organ and Tissue donation and ensure that when decisions need are made, the information is in the system.

One of the most difficult things surrounding Organ Donation, is having the conversation with your family and friends.  With young children who cannot register their consent until they are 16, this happens with a conversation about conveying your wishes that is age appropriate, and your reasons for them.  It certainly surprised me when I had the conversation with my children about how open they were about organ donation. Their attitude toward what happened to their organs after they were gone was,  ”I won’t need them, why shouldn’t they be used to help someone else live?”  I could not agree more,  ”What an amazing gift”.

If you would like to read Sarah’s blog about Keith’s story, you can find it at Taking Daily Breaths.

If you feel as strongly as I do, please talk to your family about organ donation, and then make the ultimate gift of life for this Christmas season and decide to Be A Donor.

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