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.