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