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.  

Want to know how you can help? 3-4 easy steps!

How can we help?

FLIPSIDE OF THESE

This is the question that I am asked the most.  What can I do to help?  Here are the answers:

1. THROW AWAY THESE!

 2.  Grab THIS

REMEMBER THESE?  YEP, WE DUTIFULLY SIGNED THEM AND HAD A CONVERSATION WITH OUR FAMILIES.  GOOD ON YOU IF YOU HAVE THEM STASHED IN YOUR WALLET.

NOW THROW THEM OUT.  Really, toss them.  They are useless.

3. FLIP.   See "DONOR' 'DONNEUR'?

If you see Donor / Donneur, you are golden.  You can stop, have a coffee or glass of wine and maybe chocolate.  You are registered! 

DONT SEE DONOR?  SEE NEXT STEP

GO TO beadonor.ca AND REGISTER.  2 MINUTES.  THEN YOU GET YOUR CHOCOLATE.  

At which point you kiss your loved one, have them do the same as above, and you both enjoy your day knowing you can save up to 8 lives and enhance the lives of 75 more through tissue donation!  Wasn't that easy?? 

Please "like", share, and spread the word on Facebook at Lungs for Keith to Breathe   Each "like" helps the internet to LOVE this page, which increases awareness for this incredibly important cause.  Share with the WORLD: because we can!  Share the hashtag #forKeith2breathe on Twitter.  Thank you all from the bottom of our hearts.  

#forKeith2breathe

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

Gratitude and Momentum

Wow...Just wow.  

In less than 24 hours, my inbox has been buzzing, my Facebook page is overwhelmed with letters, shares, and I am literally floored by what has transpired.  Gratitude is my word of the day, the week, likely the rest of my year and beyond.  I wanted to post an update, to address some questions that I have been asked, and bring everyone up to date on what has happened since my post yesterday.  

My hands shook as I published yesterdays post, and it took about 5 minutes (thanks Twitter) for things to start happening.  

As a history of Keith's illness (which has been officially diagnosed as Diffuse PanBronchiolitis - see here) he saw a doctor in the late 90's for a chronic cough.  Multiple misdiagnoses later (asthma, COPD, CF and more) the only one that seemed to fit was DPB.  He was written up in a medical journal here, because he was the only caucasian man in Canada diagnosed with the disease, that traditionally attacks people who are asian.  DNA testing proved that he had no asian history.  He was officially an anomaly, which we are beginning to understand is not uncommon in the world of lung diseases.  To be clear, he has never smoked a day in his life, was super active, and a healthy weight.  

Algonquin 2006

Enough medical mumbo jumbo though.  Since yesterday, I have been contacted by many people, offering practical suggestions as to how to navigate the medical system.  I was directed to call patient services (which I did and got some information, and followed up on Keith's case - was assured follow up mid week next week), had someone who knew a key part of the transplant team and was going to work that angle... right up to one person who knew someone who was good friends with a doctor on the team at TGH.  I am expecting a call on Monday morning from that doctor, after he reviews Keith's case.  

Many mentioned Hélène Campbell (@lungstory on Twitter) and her amazing story.  I was very familiar with that story, and had tagged her in tweets but no response.  Then another friend messaged me that they could try to get in touch with her directly.  Waiting on that, and frankly, a little starstruck :)

The coolest thing about all of this is that, in less than 48 hours I have spoken with three separate people who have had, or are spouses of someone who has had, double lung transplants.  These are the heroes, whether they had their 5 minutes of fame in the news, or were quiet and the system just took care of them, they have lived this personally, and the intensity of how I was drawn to them and their stories, is shocking.  I cannot get enough information, and the personal stories of each of these people are so inspiring.  People have been in touch to share their stories, and if they want, I will share them here.  

Thank you all, for your wishes, your prayers, your suggestions, and for sharing this story with as many people as you can, to spread the word about the importance of organ donation.  The conversation is awkward, but so important.  To learn more, go to beadonor.ca, and follow them on Twitter at @trilliumgift.