Friday, December 28, 2012

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.  


Thursday, December 20, 2012

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


Wednesday, December 19, 2012

The call

Tonight at 6:50 the call came. There are lungs for Keith.

Thank you all for your continued prayers and good thoughts. We are so appreciative of all your love and support.

Should all go well, the surgery will be at 2 am this morning.

Our hearts are full of thanks to the donor family. Please know that you will forever be part of our gratitude moments.

Updates as they come.

Love, Keith and Sarah