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.  

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.  

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...

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.  

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

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