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. 

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