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 

Whats going on? January 26/13

ICU  - Day 9

Busy week here.  For some reason (gee, I cannot imagine why) my creative juices just don't seem to be flowing the same way they usually do.  I am trying to work past it to get this information out to everyone as clearly as possible.  

Yesterday, Keith's mouth tube for the ventilator was moved and a tracheostomy was performed to give him some relief from the tube at the top of his throat.  Essentially, now he breathes through the stoma in his neck, and he is still on the ventilator moving between pressure control and support.  The difference between these is that on pressure control, the ventilator is doing all the work of him breathing, when he is able - a good portion of the time - pressure support just gives him a little "boost" to ensure that each breath in and out goes smoothly.  

The upside of this is that I can now see (and this morning, KISS) his beautiful clean shaven face, and his throat can heal so he is a little more comfortable.  He can mouth words to me, and when the incision heals better, (it is a little tight now, due to the area healing) he should be more comfortable.  

After his tracheostomy, the nurse inserted what is known as a PICC line.  Coolest part of this, apart from the fact that it reduces the number of IV points that he has to have on his hands and arms, and doesn't need to be changed for months, the nurse doing the procedure, asked me and my daughter (who had surprised me with a visit home from university) if we wanted to watch the procedure.  VERY COOL.  

Grey's got nothing on these two

So we "suited up" and gave the camera our best double selfie pose and prepared to be amazed.  

Remember when they told us in the early 90's that all these kids playing with video games were going to be doctors and doing surgery with this technology?  They were right.  

I'll probably botch this, and please do not attempt this procedure at home.  

They took an ultrasound of Keiths upper arm and located the veins (NOT arteries, cause they are going the wrong way) The veins are wide open, the arteries pulse.  Very cool to watch.  They carefully marked the area where they needed to insert the initial canula (I think thats what this needle is called).  They measured the length of line they would need to get to the big momma vein. Then they draped Keith's body entirely with a small area exposed where the insertion was going to take place.  

Using the ultrasound as a guide, the canula was inserted, and then the PICC line was cut to size and inserted.  There was a sensor on the end of the line that showed up on a computer screen and it was literally like a video game where she gently pushed the line in, and you saw it moving along where it needed to go on the screen.  A couple of twists and turns and TAA DAA!  It was in place.  

There's a Keith under all that :)

The nurse who was doing the job was amazing, allowing us to watch the process from beginning to end.  Only trick was we werent allowed to faint.  We passed!

After this, Keith was still pretty sedated from his trach, and the snow was coming down like crazy.  I said my goodbyes and we drove home in the crazy snow!  (Friday night)

SATURDAY-

Best part of today - bar none - was coming in this morning and kissing my baby on the lips.    It cannot be described but not being able to kiss him for 9 days, this made my day.  

Tomorrow is another day.  The waiting continues.  The faith, hope and Love continue.  

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.  

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.

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!  

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