The greatest gift - January 29, 2013

January 29, 2013 - Thank you

For one family, it is a date of sorrow.  It is the day that their loved one left this world, but left it with a wish, with a request that any useable organs be donated, so that another can experience more life.  

For our family, this date is a rebirth.  It is a father able to be there for his children, and a husband (fiancé) able to walk, once again, hand in hand, with his girl, for an evening stroll.  

The magnitude of this gift is not lost on Keith.   There will never be enough thanks in this world, and each and every breath he takes, is a breath of gratitude.  

This post was begun on January 29th, 2013 - Over two months ago when Keith had just received his gift.  The timing in posting it now, stems out of respect for the family that have lost their loved one, and because these last two months have been focused on taking care of this precious gift, and ensuring that it continues to keep Keith as healthy as it can, for as long as it can.

I have come back to this post so many times, with the hopes that some lightening bolt will hit and I will have the perfect words.  It is when I wish we had a language that had 1000 different words for thank you, and one word was just right.

Our thank you encompasses all of the above and more.  Our thank you sends prayers and hugs and blessings to the family who have lost their loved one.  Our thank hopes that you take comfort knowing that this gift will be cherished.

Keith and I want to let you know that we will always feel joined with your family.  Keith is not a writer, but we have discussed how to say this, and I hope that I do justice to his thoughts here.


When I wake, in the first few moments my thought is one of peace.  Peace that I had not known for many years.  I feel a level of comfort that my body had not been allowed to feel, and each fibre and nerve and muscle in my body is responding with a resounding chorus of thanks.  
Breath is effortless.  I confess to having moments where I don't even think about breathing, which for someone with less than 10% lung function is an impossibility.  
I love my new lungs, I so appreciate that you supported your loved ones choice, and my children, my friends, and beautiful fiancé thank you for saving my life.  

Sheer joy

Venting about venting, note passing, and butt smacking

Was having a lovely sleep this a.m. when the phone rang.  4:00 a.m.  

"Keith was having some trouble breathing, so they have brought him to the Humber Church Memorial Hospital".  Me in my sleepy haze asks "Am I supposed to go there?"  I think the lady on the other end had second thoughts about my suitability as a partner at that point, but the answer was in the affirmative.  

The QEW heading east toward Toronto is pure joy at 4:15 a.m.  Best part of my day - well not quite, but we will get to that.  I flew into the city, found the hospital I had never heard of, and was eventually brought in to see Keith who had been put on a CPAP machine to try to enable him to breathe better, and calm down.  He was quite agitated and confused about where he was at, and unfortunately his C02 levels were elevated (oxygen going in, but not enough C02 going out) and needed to be lowered.  The solution?  - A ventilator to regulate his breathing in and out, and to allow his body to relax and begin to stabilize.  The vent went in at approximately 5:45 a.m. 

Ventilators are pretty intimidating machines.  They breathe for you - end of story.  You trust in the science of them, you trust in the doctors and nurses who are putting it in (who thankfully shoo ME away while doing so) and managing it while it is in.  They make more beeps and blips and whiz bang noises than a 13 year olds cellphone on a Saturday night.  People who have them in, don't like to have them in.  These people must be sedated, in order to allow the machine to do its job, and the person to stabilize.  Various bodily functions are dealt with (imagination folks) and said patient must be kept awake enough in order to allow secretions to be sucked out.  It's a messy, noisy, and delicate business.  

Keith rested most of the day.  I sat.  I didn't talk to him (because they didn't want him agitated as he would be confused about the vent) I didn't hold his hand too much (same reason) I cried some.  I laughed once (great Tweet from a friend) and I listened to the other stories in the room.  I prayed lots, and felt the prayers and intentions of others all day long.  I truly did.  

The goal was to get Keith stabilized, and then off to Toronto General Hospital, where the transplant team who is familiar with him and his case, could be on hand to see him and take care of him, and ultimately remove the ventilator.  At about 3:00 the nurses at Humber advised me that TGH could take Keith at 7:30, and I could go home, get a little rest, and then meet him back downtown.  Good plan.  

Apparently sometime between 3:30 and 7:30 while I was trying to get some rest at home - there was white stuff falling.  Lots of white stuff.  It was quite beautiful to see out in Oakville.  I'd say we had two or three inches of lovely fluffy stuff.  After confirming that Keith was heading to TGH, I left for Toronto.  Not nearly as lovely a drive as the morning fly.  Slow, steady, and the whole time I was thinking about Keith, in an ambulance, with all of his various wires, tubes, and gadgets hooked up, moving across the city in this snow.  I willed the driver of that ambulance to drive super extra carefully. I willed every driver on the road to do the same.  

Arrived TGH around 9:15 and went up to see Keith.  He had just come in about 10 minutes before me, and they were getting him settled in.  I was fully suited up in a gown, gloves and mask, and they brought me in half an hour later to a lovely and extremely quiet, almost zenlike room where he was still on the ventilator, but was more aware of what was going on.  His level of O2 had been reduced significantly, and his saturation levels (just how much oxygen was sticking around and travelling through his body) were a perfect 100%

He couldn't smile at me, but he knew I was there.  And I realized that he wanted to say something to me.  He moved his hand to try to get it out from under the sheets so I helped him - thinking the sweetie wanted to hold my hand.  How touching!  He reached for my gown and started writing letters on me!  It was like something out of a movie, so I told the nurse, and she gave me a clipboard, and paper and pencil.  He wrote me a series of notes / questions.  

Keith wanted to know where he was, why, what had happened, and wanted to convey to me that he was not at all happy about the tube in his throat.  Fair.  I helped him with 3 out of 4.  The nurse came in and explained to him about how the tube was likely going to stay in for the night, but that he was definitely on lower levels of oxygen so that it would make REMOVING the tube something to happen more readily.  While she acknowledged that it was uncomfortable, she advised against increasing sedatives to numb the pain, since it might end up lengthening the time he needed to have it in.  

At this point, I decided that I should try to get some sleep, so I said goodnight to Keith, and removed my gown and gloves and mask and left the room.  He started tapping on the side of the bed.  Like crazy.  I told him that I had removed all my stuff, and would see him in a bit, and he kept tapping.  I told the nurse, and she said she would go in and see what he wanted to write and grabbed the clipboard.  He motioned to her to turn around, and I heard her say, "you want me to turn around?"  Here's where I knew that Keith was feeling just fine.  He wanted to slap my bum.  There.  I said it.  It's what he does - and constantly asks me "what would you do if you didn't have me?  Who would do this?"  I love him.  

I have ensconced myself in a lovely couch in the lounge on the 10th floor.  They will call me if they need me.  I can rest knowing that Keith is being taken care of by the best doctors and nurses for him.  

Over and out.  Will post update very soon.  Thank you again, for all of your support.  Thank you to Steve who brought me chargers for my phone.  Thank you for so many of you who I don't even know, who keep Keith in your prayers and thoughts.  It all means so much to him and I.  Without you, this would be an extremely lonely and frustrating road.  Thank you to the many of you I do know, who continue to support me, and us, with practical and spiritual help.  There aren't words to say how incredibly appreciative we are.  

Night.  

The Wait - Trout Tickling - 4 Cool things.

“...of all the hardships a person had to face none was more punishing than the simple act of waiting.” 
― Khaled Hosseini, A Thousand Splendid Suns

I realize I have been quiet.  Those who know me, know that this is not really my nature.  Let's just say that my nature has been altered in the past few months.  

We wait.  It's like being in the "waiting place" in Dr. Seuss' Oh the Places You'll Go!  "waiting around for a yes or a no" but not really.  I'm being unnecessarily dramatic because I wanted this post to have punch.  Look at me!  Quotes! Can you believe it??

The past 24 days have been spent waiting to hear from the Transplant team as to their BIG DECISION for Keith's future.  They told us between 3-4 weeks, they meet on Thursdays (! so call on Thursday night - hello!!) and we didn't hear last week so.....  Yeah.  That.  

So for now, not really much to report.  

Keith is going to his physiotherapy twice a week at Credit Valley Hospital.  Apple picking, fish tickling, and treadmill walking.  Yes, I said Fish Tickling.  Ask Keith.  It's actually hilarious.  I'll get a shot of him doing it and that will be the picture.  You really do have to laugh this out, its the only way.  This whole lung transplant thing really gives you new perspective on life, humour, and people.  

Keith - Tickling the Trout.  Google it.  You will thank me.  

And in "can you believe this happened?" news...

I received a note in the mail today from a lady in Victoria B.C. who had read my blog, her husband had seen a tweet about it, and he linked to it in his blog.  Four cool things in one sentence:

• I received a note.  Handwritten.  In an envelope with a stamp even.  Cool.
• People in B.C. are reading the blog and sharing it!  Loving that.  
• Her husband actually linked to my blog in his blog.  (I am not a 'blogger' per se, but I get the sense in the "blogging" world that this is a good thing so I am listing it here as cool.)
• Thats really only three things but hopefully few will notice.  The fourth could be that I managed to insert a link in there.  Nobody reads this far anyway...

How does it feel? An informal interview

The opportunity arose...

And we chose to pursue it.  Having met Rob Carew at TGH a few weeks back, we reached out to him by email a few times, and asked him if he would be open to meeting in person to discuss his experience with his recent double lung transplant.  

From a purely selfish level I think people can appreciate wanting to know as much about something like this as possible.  You research on the internet, watch YouTube videos (Keith has been doing this, I decline because I'm not good with that sort of thing) and read as much as you possibly can to understand it from every level.  Nothing, however, takes the place of sitting down with someone who has had this done recently, everything is still very fresh, and you can get a much better understanding of the actual "event" from someone who knows.

Sitting in Rob's living room was kind of surreal for me.  While I cannot speak for Keith, for me to listen to the story of his transplant, from first call to post surgery reactions, allowed me to picture the same scenario for Keith sometime in the near future.  While the details we heard were one person's experience, it was impossible to listen to and not imagine how the details will be for Keith.  Sometimes I try not to think about it, mostly, I can think of nothing else.    Thank you, Rob, for taking the time to meet with us and share your story.

Keith with Rob Alexander Carew

So many are asking how Keith is doing.  He has been doing well, is anxious for his assessment appointment in mid-September, and is slowly gaining some weight, an extremely important part of ensuring that he gets listed for transplant.  While his energy level is low, he does have a very motivational champion (me!) who pushes him to go a little further with each walk, keep his activity level raised and encourage him to get his heart rate up in order to build up the strength he needs for his operation when the time comes.

The beautiful weather of recent weeks has allowed us to spend lots of time sitting out front in our beloved Muskoka chairs (hey, we can dream right?) and enjoy the cooler breezes.  With fall right around the corner, and cooler weather on the horizon, we are looking forward to being able to enjoy time outdoors (the heat is not good for him right now) and maybe get some small walks in the neighbourhood.

Thank you, each and every one of you for your wonderful wishes, prayers, good thoughts, chocolate! (Thanks to Rocky Mountain Chocolate Factory who did a home delivery - the DELUXE Peanut butter cups were awesome) and home made chocolate goodies from our friends Stacy and Joe from Embur Computers.  So many of you have been so wonderful, and truly, we appreciate it very much.