3 years, 25,228,800 Breaths. These are the gifts that Keith has been given.

3 years ago...

I was sitting in a waiting room at Toronto General Hospital, waiting for the word that the surgery was done, and that I could go and see Keith.  

12 days before transplant.  

11 days before transplant

That day was one of the most peaceful days of my life.  I had been in a whirlwind for weeks, living with uncertainty and fear, but doing my best to keep things together - for everyone, but most of all, for Keith.  We were in a no mans land, living each day wondering what the next would bring, not wanting to say what we feared, but knowing that it could happen any time.

His body was done.  His lungs were done.  The doctors were pushing for ECMO and I was saying NO.  His will was strong, he was so determined to keep going, that I wanted him to keep and use his own lungs as long as possible, until his hero came along.

Days before transplant.  His body was shot. 

Dr. Hsin writing "L" and "R" on his chest!
Just to be sure the lungs were in the right spot!

On the evening of January 28th, the call came in.  There might be lungs.

What followed, from about 10 p.m. until 6 a.m. was a quiet evening in the ICU room, with visits from time to time from nurses and doctors saying that they still didn't know if everything was a "go".  At 5 in the morning, everything was confirmed, and Keith was prepped for surgery.

7 1/2 hours later, Keith was out of surgery and by 7:00 that night I was holding his hand.

Seeing him breathe again, knowing what had happened, knowing that he had been gifted with the most precious of gifts ever, filled me with so much emotion that it still brings tears to my eyes as I write this.

 Happy 3rd Lungiversary my darling husband.  Here's to 25,228,800 more breaths, and more after that.  Each one is a blessing.

Thank you, donor.

You too can be a hero.  Visit beadonor.ca and register in Ontario.

Letter from Keith's donor's wife.  (who we
later met, along with the rest of his family)

Healthy, Happy, and loving life!

Written by Sarah Taylor 

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

Home at last! Settling back into new life

Saying goodbye to 7

February 20, 2013.

    

 After nearly 3 months as an inpatient, either at WestPark Healthcare Centre or at Toronto General Hospital, and 12 days on a ventilator prior to receiving his gift of life, Keith was finally allowed to go home!  It was so nice to be able to walk out of hospital, and into his home with NO walker!  Our first night home, Keith really wanted to have Il Fornello pizza, so we went out and had a lovely meal with my daughters, Emma and Kathleen.  

In home pharmacy!

CBC interview on Saturday morning.

Relaxed breakfast

 On Saturday morning, the CBC came to do an interview and finally get a chance to chat with Keith outside of the hospital.  Keith did an excellent job.  See the interview here (15 minutes in).  

Our new reality, for a few months, is 3-4 regular trips in to Toronto a week for physical rehab, doctors visits, testing and follow up appointments.  Keith is monitored very closely by his doctors, and does self monitoring every day through spirometry readings, temperature readings, and everything is charted.  If there are any noticeable (10%) up or downticks in anything, he is to go to the hospital immediately.  The medications that he takes to suppress his immune system, need to be taken at the same time each day, twice a day, for the rest of his life.  

First workout day after transplant

Treadmill.  1.8 as opposed to .6.  He rocked it.

Keith and Dr. Waddell?  Need to organize
a proper meeting :)

Running into Derek from Spiritual Care

Catching up with the team at Credit Valley
Physio Rehab

 It has been so wonderful to meet up with many of our friends, and people who have helped over the months and years.

Yep, another front page from our local paper.  

Vince - the Physio master in MSICU.
This man is awesome!!!

No post would ever be complete, without thanking the one incredible person who made this all possible.  You made a choice, your family supported that choice, and not one moment, not one breath goes by that is not filled with gratitude for your most precious gift.  Thank you, from the bottom of our hearts.  I can only hope that your family can find solace in knowing that Keith will take amazing care of this gift.  

If you would like more information on how to ensure that you are registered in Ontario as an organ donor, please go to beadonor.ca.  Or visit Keith's Facebook Page  and check out the about section for more links in other provinces and countries.  

Two weeks post transplant. Ups and Downs.

The week in pictures (and lots of info)

Swallow xray video

To bring you up to date, I thought I would post an update with some of the things that have happened this past week.  Keith was assessed with a swallow test a week ago to see how he was swallowing (after having been  intubated for a week, and on a trach tube after that, it was imperative that he was swallowing food, and it was going down the right tube!  All looked pretty good, except for a few bits that weren't making it to the right spot, so he was put on "similar consistencies" for food choices.  No nuts for this guy for a while!

On Friday, February 8th, the skies opened up and covered the city with white.    It was beautiful to watch, but came at a time when Keith really needed me close.  Keith was 10 days post transplant, and really beginning to feel the pain of his incisions and staples.  Medications were still being adjusted, and gaps in pain meds really left him uncomfortable - no wait, in tons of pain.   My car was in pain too, as you can see, and THAT was lots of fun to deal with at the end of a long day.  (I can complain too, right?)  

On Friday evening, a nurse came up to Keith and I in the hallway and said "I've been reading your blog!"  to which Keith smiled in his new "I'm kind of a rock star now" way, and chatted with her. Her name was Roxanne, and she wanted to come by the following day with a couple of her students and change his chest dressings.  Bring it on.  What a great girl and she and two students (one from DeVry and one from Sheridan) took great care with Keith and got his dressings all cleaned up.  The nurses here are awesome.  

Sunday was an exciting day.  Keith said goodbye to his trach tube in the morning.  Dr. Leanne Singer did the honors, and later in the morning Keith's nurse Christine tidied up the trach site and covered it up with a bandage.  This was crucial because it was visiting day!  Keith was pretty excited when lunchtime came around, and we decided to head down to the food court and grab a corned beef sandwich from Druxy's.  HUGE joy on his face as he ate the first "non-hospital" food in weeks.  

Later on Sunday afternoon Keith finally had the opportunity to see his kids who he has not seen for over 4 weeks.  They were overjoyed to see him and have a lovely long chat in the atrium here.  Bobblehead Yoda and Darth Vader were gifts, along with some great handmade Get Well cards.  I know that it was wonderful for Keith to finally see his kids after all of this, and to give them all big hugs. 

They are so appreciative to have their Dad back, appreciative of the incredible gift that he has been given, and that they get to enjoy.  It is times like this that we truly remember the circumstances surrounding this gift.  The thanks extends beyond Keith, and I, it is a whole family and friend network who are thankful each and every moment for the gift that he has received.  

On Monday, Feb 11th, Keith experienced some issues with an elevated heart rate, reduced oxygen and was feeling feverish (although did not have a temperature).  The doctors did an x-ray and EKG and determined that it was possible he had an infection, which they are treating with a broad spectrum antibiotic.  By today he was feeling slightly better, although the pain of the incision site is still strong.  Medications manage this for the most part.  He was out for a 6 minute walk test today, and walked 325 metres.  I'd say he nailed it!


 Lungs for Keith to Breathe
The Facebook page continues to grow, and be a place where we can share the daily goings on for Keith.  While I try to post as often as I can, Keith's rehab is the priority right now and I cannot always post there.

What is amazing, is the number of people who have messaged me privately to ask how Keith is doing, and offer help.  Many of these people are students who have been touched by Keith's story, transplant patients both pre and post who remember how it was for them, and people who are moved by the importance of organ donation.  People who never thought about it before, but having heard Keith's and so many others stories, are moved to make a difference.
As we continue this journey, we will continue to ask everyone a favour - the next person you are talking with, whether it is the teacher at your child's school, your parent or relative, or a stranger you are helping on the street, - please remember that there are thousands of people waiting for organs in your province - your country.  Even a simple conversation about how you have been moved by this story and are trying to raise awareness about the importance of double checking beadonor.ca in Ontario to see if you are registered.  We CAN make a difference and raise the numbers of people registered.  If you tell one person each day, who tells one person, more people will have the conversation and we will continue to spread the word.
YOU CAN SAVE LIVES!

Has it really been just 10 days?

How is this even possible?  Three words.

On January 17th, Keith was brought to TGH, on a ventilator, unable to speak, his body ready to give up.  

Years of deterioration and infection had rendered his lungs completely unable to power his body anymore.  Keith had the will to continue, but his body was not cooperating.  

For 12 days, Keith was in and out of coherent thoughts.  Days went by when he was merely a shell, with a machine that breathed in and out for him, his mind addled by medications and his body fighting to keep him here.  

When I was with him, I was strong.  When I spoke to family and friends, I was strong.  The nurses, media, and strangers couldn't believe how I remained calm, dignified, and even smiled and laughed when I was with him.  How did I do it?

A few weeks before Keith was admitted, an old school friend told me she wanted to give me something.  A talisman.  I admit, I figured I was going to get some smooth rock carving made by an inuit.  I had no idea.  Two days after he was brought in, she brought by my present.  It was a simple silver chain, with three charms on it.  

Faith

Hope

Love

I'm a pretty simple girl when it comes to jewellery.  I've worn the same gold chain for the past 13 years.  I took it off, and put this on.  I touched each talisman and said the words to myself, and then out loud.  This is what would get me through.  

First - Faith.  Faith in God, faith in people, faith in our doctors.  I had to have it, otherwise there was no...

Hope.  Hope that the call would come, that Keith would hold on, that life would continue so that

Love could continue.  My mantra continued throughout each day.  It charged me.  It propelled me to continue to move forward.  Faith. Hope. Love.  

On January 29th, Keith received the gift of life in the form of a pair of gorgeous (I have on good authority) lungs.  A simple decision that was supported by a family.  There was Hope.  My Faith continued to give me strength.  My Love for humanity grew.  

February 7, 2013

Keith is now in a room down on the 7th floor, less supervision, fewer bells and whistles connected to his body.  No oxygen during the day, (possibly at night).  Two chest tubes still in and his bad sense of humour firmly intact.  

Now our hospital days are spent doing more walking, follow up doctor appointments, x-rays, more follow ups with doctors, getting some much needed rest (it's a much quieter floor than the 10th!) and healing.  

Every day is a gift.  Every moment is precious.  And yesterday, Keith finally asked me about some timelines.  He wanted to know why I was saying that he had been in the hospital for three weeks.  I had to tell him that he had been here for 12 days, in and out of consciousness, and that I had been by his side for the entire time.  He looked at me, puzzled, and began to weep.  "How did you stay sane?", he asked.  I pointed at my necklace.  "Faith.  Hope.  Love.  There was no other option for me,  I have you back now.  

Eternal gratitude to the donor.  

Patience and Grace. #forKeith2breathe

The day to day - Holiday update 2012

#forKeith2breathe

Such excitement about 10 days ago.  It was going to be Christmas a week early!  Sound the trumpets and ring the bells!!  Not so fast.  Patience required.  #forKeith2breathe 

For anyone reading this who is waiting for an organ transplant, you will understand how patience is the single most important trait that you can have during this process.  Without patience, your world will be a rotating door of disappointments.  Understanding that the process is one that is many downs and ups - yes, in that order, will help you get through.  Not to say that there aren't amazing ups along the way, but it is patience that will help you navigate the many emotions and physical trials along the way.  

Hand in hand with patience, I believe need to accept Grace.  We all have our belief systems, some of us more structured than others.  Some of us just "wing it" and believe that the universe will unfold as it will.  Some of us believe in a higher being who has plans laid out for us, and will allow us to know what those plans are when the time is right.  Some believe that the power of positive thinking, that intentional ideas put out to the world will affect change.  Some believe in prayer.  Some believe in massive group worldwide prayer.  

I believe that there is power that can change things.  I believe that we are all loved unconditionally and that while we may not appreciate the way we experience life, that we just may not understand the reasons at this time.  

I know that there are many people out there, people that we know, and many that we don't, that are actively praying, thinking, hoping, visualizing, wishing and putting out to the universe for healthy lungs to become available through the selfless generosity of a donor, for healing for Keith, for wisdom of the medical team.  To all of you, thank you.  Such a simple overused phrase, that cannot begin to convey how appreciative we are for your continued support throughout this process.  

 Please help spread the word.  We are asking for your continued positive thoughts and prayers for Keith.  New Lungs.  Life.  #forKeith2breathe to trend throughout the earth and for me to get my baby home.  

After THE call - Reflections. A long heartfelt post.

So, we've had our first trial run.  Thoughts and Reflections

I'll admit it.  It was pretty emotional to get that call last night.  I had just sat down to dinner (made by my daughter, Emma - bless you) when Keith phoned and said "I got the call".  My first response - "I'll leave now", and then promptly collapsed, crying, into Emma's arms.  

Collapsed?  Am I being too dramatic?  Maybe, but the wave of relief that went through my mind was massive.  Interestingly enough, there was a very loud voice in my head telling me that this was likely a false alarm, not to get my hopes up, and to stay calm.  I can only say that I was relieved to know that we were REALLY on the transplant list.  The phone call confirmed it.  This COULD happen.  

I drove to get Keith from WestPark, and we were at TGH within an hour of the call.  This was at about 8:00 and we mistakenly went to Emergency, and were redirected to Admitting.  (As Keith likes to say, where you admit that you are sick :) )

They directed us up to 7B where we were met by the Nurse on Duty Terri, along with nurses Raaj and Chriselle.  Dr. Kabbani was the transplant fellow on duty who examined Keith, while the nurses took his vitals, asked loads of questions about his day, his health, his emotional state, etc. and the next hour was spent getting bloodwork done, sputum samples, various other samples (!) and getting an IV line into his arm - which took some doing!

The OR had been tentatively booked for 2 a.m. and now we needed to wait while the process to evaluate the donor lungs was carried out.  We would be updated as they knew, and the surgeon would come to speak with us before the surgery should everything go well.

At this point, both Keith and I were pretty quiet.  I was busy keeping up with letting everyone know what was going on, and we were both so incredibly appreciative for all of the love, prayer and support that was flowing into us from all over the globe.  I was updating my Facebook status regularly to keep everyone as informed as I could, all the while being cautious to say that while we had got THE call, we needed to wait to see if the lungs were viable.  False calls are common, and we were very aware of that.    I talked with Keith for a bit about the lungs that he was waiting for.  How the doctors were examining them so carefully to ensure that they would be perfect for him.  How they were scoping them with a camera (which is amazing) and flushing them out to reduce any inflammation, and how they could even heal them if they required some healing.

In the reflective moments over the next few hours, my mind went to the scene somewhere else, where a family had made the decision to support someones wishes and give the gift of life to others.   The process that happens on that other side of the coin is a very delicate one.  If you can even imagine, when it is obvious that someones life will be coming to an end, there are people on hand who are trained to have the difficult discussion with the loved ones.  Time is of the essence, and I cannot even begin to fathom how delicate they need to be.  I want to publicly say to the world, that Keith and I are so grateful for this family, and for other families who have made or will make this incredibly important choice.  It is the ultimate gift, bar none, that you can share.

At midnight, Keith was given two immunosuppression drugs, Cyclosporine and Heparin so that, should the surgery go through, he will already be suppressed and the chance of initial rejection is reduced.  FYI, Cyclosporine actually smells like skunk.  Thankfully, Keith's tastebuds are kind of nonexistent, so he wasn't too bothered.  I got a whiff of those things before he swallowed them.  NASTY.

At 1:00 I went to get a snack and ran into Dr. Kabbani in the hallway.  I said a quick hello, and was going to walk past her, when she said she was coming to talk with Keith.  We were silent as we walked back to the room together, but I knew.  She wasn't the surgeon coming to talk with us.  The potential lungs were not viable for transplant.

Keith was okay.  I was okay.  Expect nothing, and you will never be disappointed.  We were hopeful, but realistic.  It was not to be, but now we knew that Keith was ON the list.  Not that we doubted it, but it is real now.

Update to Thursday morning, December 20th.  With Keith's health issues as concerning as they are, and with WestPark closing for the holidays, Keith is moving to Toronto General Hospital tomorrow morning so that he will be monitored 24/7 with his transplant team in hospital.

This move is the best thing for him, and along with your prayers and love and healing thoughts, we know that he will get the new lungs that he needs, and begin his new life.   Faith, love, hope.  Truly, they all come into play here.  Thank you all so very much for your support.  It means the world to both of us.  We are so blessed, with family, friends, and extended friends (social media!) and the most incredible medical team in the world.



I will keep in touch.

Sarah

West Park - (pronounced South Park)

Toronto has a HUGE medical secret  - And Kenny works there.

This is not a word of a lie.  When Keith's respirologist told us about a facility in the west end of Toronto called West Park Healthcare Centre, we immediately both said the words "South Park" in our minds, and, with all due respect to this tremendous facility, that is how we will always think of it.  

When Keith was referred to this hospital back in May, it sounded too good to be true.  I'm not sure how I lived in Toronto most of my adult life, and never heard of this place - although now that I know what its all about, I do know.  I have been lucky, and healthy and had no need!

West Park is a facility that "helps individuals manage difficult health challenges like lung disease, diabetes, stroke, amputation and musculoskeletal issues" through a combination of physiotherapy, nutritional counselling, education and a variety of specialty disciplines.  What they really are, is an amazing opportunity for Keith to improve his level of health before transplant, in an inpatient environment that will teach him methods to continue what he learns at home.  

And there's a guy named Kenny that works in the clinic.  We laughed.  Oh, and this picture on the bathroom door of the clinic.  I knew I liked the place when I saw this.  Humour works for us.  

Universal "I have to pee" symbol

Not only was Keith accepted to the program, he was invited to start next week as an inpatient for 6 weeks to get him into better shape for transplant.  He will come home on the weekends, and I will still see him when we go into doctor appointments at TGH, and rehab at TGH once a week - cause Denise and the gang still want to watch over him closely.  

This program works in cooperation with the transplant program, monitoring all of Keith's vitals, stats, levels and numbers.  (it's all mumbo jumbo to me, I'm probably supposed to understand the FEV1 and O2 sat levels - but truth be told, I don't.  I probably will soon, and should but until then, we trust the docs and physio room workers to know)  They have access to all of Keith's records and paperwork through the network, and Keith will continue to come to all doctor appointments with the rest of the transplant team.  And of course, when the call, THE CALL, comes - we will be on to that next chapter and not really sure how this facility can or will fit into the picture.  It might come the first day he is there...maybe not for 3 months.  

So, thats our big news for the day.  

In other news, many people are asking how Keith is doing.  It's never a simple question to answer, but truthfully, he is hanging in quite well.  It's hard to describe what life is like on a daily basis living while waiting for new lungs.  

When we are not in the car travelling to Toronto, or working out in the treadmill room on the 12th Floor of TGH with all of the awesome team, and so many of our new friends that we have met there, Keith is usually resting, trying to get comfortable either on the couch, or crouched up in bed.  His spirits are actually pretty decent and he is so appreciative of all the help, encouragement, and kind words that everyone has sent through this blog, Facebook and letters.  Thank you all so much, please continue to keep him in your prayers.  

Sarah

The Hardcore Heroes of the Transplant Program at TGH

New Kids on the Block - Gangnam Style?

Something to aspire to

So, the drill now is, 3 times a week, Keith has to pump iron.  Technically, very small tiny pieces of iron, but more than he is used to.  He's the new guy in the physio room, still trying to figure out what clique he is going to fit into.  He needs to get his body in the best possible physical shape that it can be, in order to be healthy for his operation that could come any day.  Now, I know he ain't no Ron Burgundy, but he's trying to get there.  (I'm going to need a chest wig for this joke to work).  

And when he does, I'm going to have him dancing Gangnam Style with Hélène Campbell if she will.  Are you up to the challenge, Hélène?

Leg raises, knee tucks, killer treadmill 20 minute walks (with no breaks) and a series of arm motions, stretches and strengthening exercises are going to be a huge part of his life from now on.  The crazy thing, Keith was always super active!  This guy was blading across Toronto and back to Mississauga, cycling wherever and whenever he could (as a teenager, apparently this stopped when he discovered girls...) and playing hockey.  More recently, he was doing mission portages in Algonquin park to ensure the full on back country camping experience with me!

Big Trout Lake - Right in the middle!

 

Exercise has always been a big part of Keith's life, and will continue to be.  

Pretty soon, this (right) and this (below) will meet, and Keith will be back doing what he loves again.  

The wait is on.  Bring it.