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

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

How's Keith doing?

Hi everyone!

Over the past couple of weeks I have been so overwhelmed by the help and support that we have been given while we're dealing with this very difficult situation.

In my last blog, I talked about Westpark healthcare Center where Keith will be staying for the next six weeks.
Keith went into Westpark last week on Tuesday, and is settling in very well.

Understandably, a lot of people have been asking me, "how's Keith doing"? And my friend Bob Minas, suggested to me that I get a video of Keith telling everybody how he's doing.

So here it is. 

Please, if you would like to send notes of encouragement to Keith, I know he would really like to hear from everybody. The best way to reach him, would be through Twitter where his handle is @OakvilleHandy.

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.  

Our new normal - phones at the dinner table a must!

Hands up if you have a "no phones at the table" policy

We do.  We did.  We don't now.  

Will this be the paranoid phase for the next little bit?  Will we be double checking our phones to make sure the ringers are on?  Constantly checking the battery power?  Hearing phantom rings?  

Today we met with our wonderful Transplant coordinator at Toronto General, met with one of the thoracic surgeons and signed all the paperwork and officially had Keith put on the transplant list for a bilateral (double) lung transplant.   We found out that apparently, Keith's current lungs are too big for his body...that one weirded us both out.  

The call could come in a day, a month, a year.  It could come in the middle of rush hour, or 2 in the morning.  It could be a false alarm, it will likely be a false alarm, or very, very real.  

I asked Keith how he feels right now.  First word - relieved.  Second word - um.  Third word reiterates the first.  He is relieved, he is happy that the team sees him as sick as he is.  It's no longer a question of "is he sick enough", but can he stay healthy enough for long enough to get new lungs.  

There will be physio three times a week, regular blood testing, Pulmonary Function Tests, Antibody tests, group information and therapy sessions, and clinic visits with the respirologists, and evening seminars.  Amidst all of this, the phone will ring.  The phone will ring, and it won't matter if the phone is at the dinner table, it won't matter what time it is, or where we are.  It will ring.  

When it does, Keith will be ready.  I will be ready.  His children, friends, and extended family will be ready.  

We are armed...and ready.  Bring it.  

Ask and it shall be given

My first mobile post and its a doozie!

This morning was like any other morning, and at around 10:30 the phone rang. Our lung transplant Coordinator was calling to tell us that Keith was being placed on the transplant list at the highest priority possible.

I firmly believe that the universe was listening. Last night I blogged about the agony of waiting, and this morning the wait was over.

I cannot thank enough all of the people who have continued to support Keith and myself in this journey. There are too many of you to name but suffice it to say that every single one of you has made a profoundly positive difference in our lives.

I took a quick photo of Keith right after he got the news, he is very happy.

At the risk of this reminder sounding ill-timed, I would still like to remind everybody to please make your wishes known with respect to organ donation, go to www.beadonor.ca and make sure that you are registered for organ donation.

Bless you all. The next part of our journey has begun.

Sarah

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...

Keith's 41st Birthday - Walker anyone? Sexy picture alert... NOT!

In any other blog, this might be a joke - Updated Sept 24th

You know the one, "look at you old man, turning 41, want some Grecian Formula and a cane?"  You know, the bottles of Geritol and subscriptions to CARP?  It's Keith's 41st birthday today, September 23, 2012.  

It's not so funny when it was recommended to Keith last week at his Assessment week at Toronto General Hospital, that he will benefit from a walker.  He is currently unable to walk more than 75 metres in 6 minutes, and after doing THAT, he is completely out of breath.  With a walker, he managed 150.  

A big part of pre-transplant preparation is physio.  It is crucially important that Keith is in the best physical condition that he can possibly be in so that come that amazing day, his body is strong and ready to have the surgery that will save his life.  So, a walker it is.  That and Timbits, but I digress.  

I've combed Kijii and Craigslist.  Crazy thing, I email people on those sites but they don't email back.  I can certainly run out and buy one, but there is actually an assessment process to buy one, and call me crazy, but didn't we do that last week every day, for about 6 hours a day??  

Somebody out there in the Oakville, Burlington or Mississauga area has a decent walker, with 4 wheels and a seat (not the skimpy aluminum ones that just fold, and don't do much else) that they are not using any more.  And of course when I looked for an image of a 41 year old man with oxygen needing a walker, all I found was old man.  I refuse to post that.  

Pretty sexy isnt it?

I went out this morning to get Keith some Timbits (his latest weight gaining trick, 90 calories each, and sour cream his favourite) and had a man walk up to me in the parking lot, as I was coming out.

"Do you know how fattening those are for you?" he said.  "Yes, I do sir, my husband is waiting to be listed for a double lung transplant, and these are helping him to gain the weight that he needs to be strong enough for the operation"    I hated to be so blunt, but lately, I find there is no time for formalities.  

If you know someone in the Oakville area who is no longer using a walker like the one on the left, we are happy to purchase it from them.  I'd love to get one for his birthday today.  

Update - Sept 23 3:00 p.m.  We received a walker from a kind soul, and were so appreciative of shares and tweets to help find one!  Keith got his walker, and now we move on to the next phase.  Waiting to get word of being listed!  

Meeting the "Family"

Sept 17 - 21 is Assessment week

And we are beginning to learn something interesting about this process along the way; that there is a sort of "family" that begins to happen.  Not our words, but those of Hélène Campbell who we met on Monday morning while waiting for some tests.  

I'll be honest, I wrote back in late July about my excitement to meet a fellow Oakville native, Rob Alexander-Carew who had just been through his double lung transplant and I was super excited at the opportunity to learn from him.  When I rolled Keith in to the lab on Monday, Hélène was there and I was, well, starstruck.  

Keith, Sarah, and Hélène

Keith and I were fortunate enough to have about 10 minutes to chat privately with her, about her experience, the amazing job she did of rallying her friends to help raise awareness for organ donation, and the work she continues to do to raise the profile for IPF (Idiopathic Pulmonary Fibrosis).  She and Keith both share a love of Reese's peanut butter cups, and she is an incredible young woman who will continue to do great things for people affected by lung disease in the years to come; of this I am sure.  

In addition to meeting Hélène, we met other recent lung recipients.  I was actually introduced to two people as "they are singles (single lung)" and this was when the concept of the family was explained.  You become a family because you share something that few others can completely relate to.  

Keith and I have spent the last three days going from appointment to appointment in the hospital.  We have had the privilege of meeting many more people in the transplant program, from people waiting on the list, to others being assessed to be listed.  We know their names, we are learning their stories, and the connections are being formed - no matter what happens.  We care what happens to them, and already I find myself thinking about how things will be in 3 months, 6 months, and beyond; for us and for them.  

This truly is about Keith, about his health, about his journey, and about ensuring that he gets the care and treatment that he needs to continue to live a long and healthy life.  Keith is my hero.  He accepts what is with a resolve and strength that I don't know if he realizes he has.  As we continue on this journey, I know for a fact that the heroes are every single person who works in the transplant department of TGH, from the technicians in the lab, to the social workers, to the rehab workers and the surgeons doing this incredible surgery, and of course, the Trillium Gift of Life program that coordinates and makes it all possible.   Thank you.  

I will post an update later this week with specifics of the assessment process.  Until then, thank you for all your good wishes and prayers.  

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.  

Waiting in the strangest place - with Reese

It's odd for me.  And how Reese Peanut Butter cups help.  

I write this as the wife of the man whose body is failing him.  I write because he won't, because he originally asked to "not be the poster child for this disease...whatever it is", because I care with every breath of my being that he be around for his family for a very, very long time.   I write to understand, to share in order to help others, and to try to make some sense of the process.  

I breathe fine.  I work every day - all day, to ensure that life continues as it has been and always will be.  I do too much, and on days like today (extremely lazy and enjoying a holiday) feel like I do far too little.  Keith rests.  He does that a lot - and that is his job right now, to rest, eat, and get as much strength as he can for what lies ahead.   Could I be doing more?  Probably, but to burn myself out at this point doesn't make much sense.  

It's been a week since I wrote, and people have asked me many questions about what is going on, so an update.  We got a call on Monday last and an appointment has been scheduled for mid-September for Keith to have his assessment at TGH.  This is a 5 day process that:

"The assessment process is an in-depth review of your suitability for a lung transplant. As part of this process, multiple tests are carried out to evaluate your lungs and other organs such as your heart, kidneys, gut and liver. Usually, these tests take about one week to complete. Most people do these tests as outpatients. During this time, you and your support person(s) will also meet with many members of the lung transplant team such as the transplant co-ordinator, nutritionist, social worker, and anaesthesiologist to determine if you are physically and psychologically ready to manage with the stresses of a transplant." 

(http://www.torontoadultcf.com/cf-information/lung-transplant-–-basic-facts-and-general-overview)

We had been told that this meeting might take 3 months to schedule so were pleased to get one in 5.  I guess at this point, we wait this 5 weeks, aim to put on at least 5 pounds in this time (huge feat, but the case of Reese Peanut Butter cups seems to be helping.  Yes, I know they contain dairy, but at this point, if Keith wants them and they don't make things worse (which for some odd reason they don't seem to) then that's what we do.  

In the meantime, I will continue to Tweet (@LHMaintenance) and post on Facebook.  Life continues to go on, and the prayers, good wishes and help are so appreciated.  Please send more Reese...the stock is running low!  :)  S

How the Universe connects us

Coincidence or Kismet?

On Friday, Keith had an appointment for a CAT scan down at TGH.  It was at 9:15 in the morning so we left Oakville at 7:30, me figuring traffic, rush hour would be nasty.  Silly me, had forgotten about summer traffic, not to mention Friday morning summer traffic into Toronto is virtually non-existent.  We flew, and were at the reception desk for the CAT scan at 8:15.  

TGH being the efficient machine that it is (really, it's amazingly on schedule) took him right away, and after his CAT scan we had to stop in at the lab for some containers.  We navigated the halls (with wheelchair) and found the lab.  We are still so new to this.  

Waiting in line behind another woman pushing a young man in a wheelchair, I overheard them ask his name, and heard the reply "Carew".  My heart skipped...this was actually Rob Carew in front of me.  Background is, this is a gentleman from Oakville who was recently profiled in the local paper here as a fit 39 year old father of two whose father had passed away from Pulmonary Fibrosis, and had contracted the same disease with a rapid progression.  

I had read this article 6 weeks ago, and had attempted to contact Rob through Facebook, but hadn't heard anything.  Just this past week, I understood why; someone in my social network had informed me that he had recently had his double lung transplant.  And now he was sitting right beside me.  

I did what I had to do, I tapped his wife on her shoulder and apologized for intruding, but had overheard the name, and was this Rob Carew?  I introduced myself, and told them briefly who I was, and Keith and Rob shook hands.  It was Rob's one month anniversary from his new lungs.  He had been home a week, and was in for his first follow up.  I was literally shaking as I heard this, because now, more than ever, things are feeling real.  Like they will happen.  

I have traded emails with Rob's wife, and hope to be able to share with her some of what is going on, with her, and with me.  I have explained that in a way, Rob's story, although different from Keith's, is so similar because of their ages, family life, and location.  I cling to this and other connections that I have made as a way to talk about what has happened, is happening, and will happen with people other than doctors and technicians.   What am I hoping for from this?  Keith hasn't asked for it, but as his wife and caregiver, I feel a strong need to understand the emotional aspect of everything that is happening.  

Many have messaged me who have connections, personal and otherwise to someone who has experienced this procedure.  I have tried to get in touch with all of them, but time is a thief and I haven't been able to.  If I have not been in touch with you, please don't take that as me not wanting to, but understand that there are just not enough hours in the day and I will keep trying to get to as many of you as I can.  And, sometimes when I have time, I am just overwhelmed by the need to do nothing.  Does anyone ever feel that way?

Sarah

Action! The power of Social Media

Meet the doctor - and get the lowdown

We are still shaking our heads.  My first post was Friday last week, I was at my wits end, and it's 4:15 p.m. on Tuesday and I'm back from a meeting with a specialist on the transplant team at TGH.   I actually googled images of excited people, but none of them really captured how we are both feeling.  It's frankly kind of surreal.  

Keith had a walk test (pretty standard in this world, they hook him up to all sorts of interesting wires, this time he actually got the Karate Kid treatment and had a fancy headband... Wax on...)

Our wait times were non existent, it was a highly organized waiting room/reception and after Keith's walk test we were in to see the doctor within 5 minutes.  

What was amazing, was from the time we met the doctor and were led to his room, we both felt extremely comfortable, not rushed AT ALL, and he was just amazing about reviewing Keith's file with us and ultimately, explaining the process regarding transplants.  

He spent an hour with us I'm sure.  Reviewed scan results and explained them to us in detail that had never been done in 15 years.  There are definitely areas of Keith's lungs that are showing signs of major inflammation.  The doctor did suggest a different antibiotic course over the next while as a possibility to slow down the progression.  Because of the nature of his disease (whether it is DPB or not, still debatable, this doctor didn't seem to think it really is) there is no option for single lung transplant for Keith, he needs a double lung transplant.  

At this point, the doctor began to explain the process of double lung transplants from beginning to end. To keep this post short and sweet, suffice it to say even after all of the downsides were presented to him, Keith said without hesitation "I'd rather have options, than what I have now, which are none".  

We are moving forward.  Keith's file has been sent to the assessment committee.  Although we are told this could be another three months before we hear from them, we were also told that if he continues to decline as he has been, to contact them and the doctor would see about speeding things up.  

Thank you to each and every one of you for your good wishes, prayers, and positive energy.  It has helped in so many ways and we appreciate it more than we can express.  

People have asked how they can help.  One thing that is so important for all of us is to ensure that you have visited beadonor.ca (for Canadians) and registered ONLINE in addition to having signed your organ donor portion of your license.  Nobody likes to think about this part of life, but we all benefit in so many ways by doing this small important thing.  Thank you. 

Jack Sprat and his wife - Remember them? FOOD post

It's actually a daily occurrence in my brain that this poem goes through my head - 

(I had to look up to make sure I got the words right)

Jack Sprat could eat no fat
His wife could eat no lean
And so betwixt the two of them
They licked the platter clean.  

It continues from there, but I thought I'd start my post this way to explain an interesting little phenom that surrounds this home right now.  Between Keith, who needs as many calories as is humanly possible in order to try to put some poundage on him, and me and two daughters who try to watch what we eat in order to keep our girlish figures, its a struggle.

A big part of what I am doing for Keith is encouraging him to eat the highest calorie meals, in small doses, frequently.  It's my dream, but I cannot live it - I have to watch.  Hence the paradox that relates to the above poem.

I thought I'd post about food, so I can tell what foods I am feeding him, and to ask for suggestions about what I can be doing differently.  A few points to note: Keith eats dairy free, as dairy exacerbates his mucous production and makes breathing that much more difficult.  Almond milk is beverage of choice, we use a product called Mimiccreme in our coffee (which is heavenly when you are dairy free and love cream in your coffee).  I cook from scratch about 80% of what we eat and try to purchase non GMO and organic to keep things as close to natural state as I can.  Olive oil features heavily in his meals (I add it to smoothies to increase calories - have one recipe that is a 1100 calorie smoothie - I give him at least one a day).

He gets cankers if he eats too many sweets, otherwise feeding him dairy free chocolate bars all day would be the answer.  I make a lot of soups, adding olive oil to his at the table.  He gets exhausted eating things that require lots of cutting, so I'm at the point of soups, stews and casseroles are best.  I want every calorie to count, and am looking for suggestions.  As long as they are dairy free, and soft to eat and easy to have on hand, I'd love the help.  He's tucking into my homemade hummus with soft flatbread and extra olive oil right now.

Please send me any and all suggestions you have for high calorie foods, snacks, drinks (not soft drinks - not ready for the gas leaks thank you very much) etc.  Thanks everyone, and once again, thank you for all your help!

Mine :(

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.  

Taking a deep breath...Because I can

The big reveal

Many of you know me as a business owner, generally outspoken, always positive.  I have been called crazy, too quick to act, generous to a fault, and you can usually hear me humming or singing something, anything.  Music has long been my muse.  

I have a secret.  It's coming out, and now, I want everybody to know.  

It changes everything.  It changes how I view everything, and it will continue to shape who I am and what I do for the rest of my life.  It makes me tear up as I read this.  I have told a few.  Now I tell all.  

My darling Keith, the man who I met almost 6 years ago and who changed my life in such a profound way with his matter of fact attitude, knowledge of how things work and (more importantly) how to put them back together, needs new lungs.  His just aren't cutting it anymore.  He is on oxygen 24/7.  He has lost much weight.  He needs help now.  And so I am asking for this help.  

This blog is not for pity, because that will not help him.  This blog is to get some action.  Over time I will tell you about countless tests, doctors appointments and referrals that have happened over the years.  

What we need now, is for the transplant team at Toronto General Hospital to follow up on the referral that was sent to them 5 weeks ago by his respirologist.  I have been polite, left polite messages, made gentle requests but now I need to be louder.  I know many of you through my Twitter account @LHMaintenance, and will hopefully meet many more of you in the months to come.  

All I ask is for your prayers, your practical help and advice, and the knowledge that with all of the amazing people that I have met through Social Media, Keith will get the transplant that he needs, and I can continue to learn with every day, what an incredible soul he is.  

Sarah