Two weeks post transplant. Ups and Downs.

The week in pictures (and lots of info)

Swallow xray video

To bring you up to date, I thought I would post an update with some of the things that have happened this past week.  Keith was assessed with a swallow test a week ago to see how he was swallowing (after having been  intubated for a week, and on a trach tube after that, it was imperative that he was swallowing food, and it was going down the right tube!  All looked pretty good, except for a few bits that weren't making it to the right spot, so he was put on "similar consistencies" for food choices.  No nuts for this guy for a while!

On Friday, February 8th, the skies opened up and covered the city with white.    It was beautiful to watch, but came at a time when Keith really needed me close.  Keith was 10 days post transplant, and really beginning to feel the pain of his incisions and staples.  Medications were still being adjusted, and gaps in pain meds really left him uncomfortable - no wait, in tons of pain.   My car was in pain too, as you can see, and THAT was lots of fun to deal with at the end of a long day.  (I can complain too, right?)  

On Friday evening, a nurse came up to Keith and I in the hallway and said "I've been reading your blog!"  to which Keith smiled in his new "I'm kind of a rock star now" way, and chatted with her. Her name was Roxanne, and she wanted to come by the following day with a couple of her students and change his chest dressings.  Bring it on.  What a great girl and she and two students (one from DeVry and one from Sheridan) took great care with Keith and got his dressings all cleaned up.  The nurses here are awesome.  

Sunday was an exciting day.  Keith said goodbye to his trach tube in the morning.  Dr. Leanne Singer did the honors, and later in the morning Keith's nurse Christine tidied up the trach site and covered it up with a bandage.  This was crucial because it was visiting day!  Keith was pretty excited when lunchtime came around, and we decided to head down to the food court and grab a corned beef sandwich from Druxy's.  HUGE joy on his face as he ate the first "non-hospital" food in weeks.  

Later on Sunday afternoon Keith finally had the opportunity to see his kids who he has not seen for over 4 weeks.  They were overjoyed to see him and have a lovely long chat in the atrium here.  Bobblehead Yoda and Darth Vader were gifts, along with some great handmade Get Well cards.  I know that it was wonderful for Keith to finally see his kids after all of this, and to give them all big hugs. 

They are so appreciative to have their Dad back, appreciative of the incredible gift that he has been given, and that they get to enjoy.  It is times like this that we truly remember the circumstances surrounding this gift.  The thanks extends beyond Keith, and I, it is a whole family and friend network who are thankful each and every moment for the gift that he has received.  

On Monday, Feb 11th, Keith experienced some issues with an elevated heart rate, reduced oxygen and was feeling feverish (although did not have a temperature).  The doctors did an x-ray and EKG and determined that it was possible he had an infection, which they are treating with a broad spectrum antibiotic.  By today he was feeling slightly better, although the pain of the incision site is still strong.  Medications manage this for the most part.  He was out for a 6 minute walk test today, and walked 325 metres.  I'd say he nailed it!


 Lungs for Keith to Breathe
The Facebook page continues to grow, and be a place where we can share the daily goings on for Keith.  While I try to post as often as I can, Keith's rehab is the priority right now and I cannot always post there.

What is amazing, is the number of people who have messaged me privately to ask how Keith is doing, and offer help.  Many of these people are students who have been touched by Keith's story, transplant patients both pre and post who remember how it was for them, and people who are moved by the importance of organ donation.  People who never thought about it before, but having heard Keith's and so many others stories, are moved to make a difference.
As we continue this journey, we will continue to ask everyone a favour - the next person you are talking with, whether it is the teacher at your child's school, your parent or relative, or a stranger you are helping on the street, - please remember that there are thousands of people waiting for organs in your province - your country.  Even a simple conversation about how you have been moved by this story and are trying to raise awareness about the importance of double checking beadonor.ca in Ontario to see if you are registered.  We CAN make a difference and raise the numbers of people registered.  If you tell one person each day, who tells one person, more people will have the conversation and we will continue to spread the word.
YOU CAN SAVE LIVES!

Patience and Grace. #forKeith2breathe

The day to day - Holiday update 2012

#forKeith2breathe

Such excitement about 10 days ago.  It was going to be Christmas a week early!  Sound the trumpets and ring the bells!!  Not so fast.  Patience required.  #forKeith2breathe 

For anyone reading this who is waiting for an organ transplant, you will understand how patience is the single most important trait that you can have during this process.  Without patience, your world will be a rotating door of disappointments.  Understanding that the process is one that is many downs and ups - yes, in that order, will help you get through.  Not to say that there aren't amazing ups along the way, but it is patience that will help you navigate the many emotions and physical trials along the way.  

Hand in hand with patience, I believe need to accept Grace.  We all have our belief systems, some of us more structured than others.  Some of us just "wing it" and believe that the universe will unfold as it will.  Some of us believe in a higher being who has plans laid out for us, and will allow us to know what those plans are when the time is right.  Some believe that the power of positive thinking, that intentional ideas put out to the world will affect change.  Some believe in prayer.  Some believe in massive group worldwide prayer.  

I believe that there is power that can change things.  I believe that we are all loved unconditionally and that while we may not appreciate the way we experience life, that we just may not understand the reasons at this time.  

I know that there are many people out there, people that we know, and many that we don't, that are actively praying, thinking, hoping, visualizing, wishing and putting out to the universe for healthy lungs to become available through the selfless generosity of a donor, for healing for Keith, for wisdom of the medical team.  To all of you, thank you.  Such a simple overused phrase, that cannot begin to convey how appreciative we are for your continued support throughout this process.  

 Please help spread the word.  We are asking for your continued positive thoughts and prayers for Keith.  New Lungs.  Life.  #forKeith2breathe to trend throughout the earth and for me to get my baby home.  

How's Keith doing?

Hi everyone!

Over the past couple of weeks I have been so overwhelmed by the help and support that we have been given while we're dealing with this very difficult situation.

In my last blog, I talked about Westpark healthcare Center where Keith will be staying for the next six weeks.
Keith went into Westpark last week on Tuesday, and is settling in very well.

Understandably, a lot of people have been asking me, "how's Keith doing"? And my friend Bob Minas, suggested to me that I get a video of Keith telling everybody how he's doing.

So here it is. 

Please, if you would like to send notes of encouragement to Keith, I know he would really like to hear from everybody. The best way to reach him, would be through Twitter where his handle is @OakvilleHandy.

West Park - (pronounced South Park)

Toronto has a HUGE medical secret  - And Kenny works there.

This is not a word of a lie.  When Keith's respirologist told us about a facility in the west end of Toronto called West Park Healthcare Centre, we immediately both said the words "South Park" in our minds, and, with all due respect to this tremendous facility, that is how we will always think of it.  

When Keith was referred to this hospital back in May, it sounded too good to be true.  I'm not sure how I lived in Toronto most of my adult life, and never heard of this place - although now that I know what its all about, I do know.  I have been lucky, and healthy and had no need!

West Park is a facility that "helps individuals manage difficult health challenges like lung disease, diabetes, stroke, amputation and musculoskeletal issues" through a combination of physiotherapy, nutritional counselling, education and a variety of specialty disciplines.  What they really are, is an amazing opportunity for Keith to improve his level of health before transplant, in an inpatient environment that will teach him methods to continue what he learns at home.  

And there's a guy named Kenny that works in the clinic.  We laughed.  Oh, and this picture on the bathroom door of the clinic.  I knew I liked the place when I saw this.  Humour works for us.  

Universal "I have to pee" symbol

Not only was Keith accepted to the program, he was invited to start next week as an inpatient for 6 weeks to get him into better shape for transplant.  He will come home on the weekends, and I will still see him when we go into doctor appointments at TGH, and rehab at TGH once a week - cause Denise and the gang still want to watch over him closely.  

This program works in cooperation with the transplant program, monitoring all of Keith's vitals, stats, levels and numbers.  (it's all mumbo jumbo to me, I'm probably supposed to understand the FEV1 and O2 sat levels - but truth be told, I don't.  I probably will soon, and should but until then, we trust the docs and physio room workers to know)  They have access to all of Keith's records and paperwork through the network, and Keith will continue to come to all doctor appointments with the rest of the transplant team.  And of course, when the call, THE CALL, comes - we will be on to that next chapter and not really sure how this facility can or will fit into the picture.  It might come the first day he is there...maybe not for 3 months.  

So, thats our big news for the day.  

In other news, many people are asking how Keith is doing.  It's never a simple question to answer, but truthfully, he is hanging in quite well.  It's hard to describe what life is like on a daily basis living while waiting for new lungs.  

When we are not in the car travelling to Toronto, or working out in the treadmill room on the 12th Floor of TGH with all of the awesome team, and so many of our new friends that we have met there, Keith is usually resting, trying to get comfortable either on the couch, or crouched up in bed.  His spirits are actually pretty decent and he is so appreciative of all the help, encouragement, and kind words that everyone has sent through this blog, Facebook and letters.  Thank you all so much, please continue to keep him in your prayers.  

Sarah

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!