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.  

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. 

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