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NOTDAW!! National Organ and Tissue Donation Awareness Week – April 20 – 27, 2014

Today is Earth Day.  It is also a lovely Spring day in Toronto.  The rain is not mopey, but a nice gentle cleanse.  I put together this video clip in honour of  organ donation;  the heroes who register, the heroes who gave, and the heroes who wait.

Click:

Be A Hero

 

 

 

Back on Track

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“We must be willing to get rid of the life we planned, so as to have the life that is waiting for us”. – Joseph Campbell

I start my first year post transplant with trust, knowledge and understanding.  As I move forward, I have the trust that any tweaks, adjustments, or sidelines are all part of this new life.  I have the knowledge and understanding of knowing what to expect from my body and that I have a second chance at a wonderful life, and I am grateful for this gift.

To sum up all the thanks and gratitude I have for my donor, the donor family, my immediate family, my support team and the organ donation community, I want to share in video & pictures a bit of the transformation that I have gone through, and share all the strength, kindness and compassion that I received from everyone.  With the power of all those smiles, one could not have a stronger dose of encouragement.  You my friends have defined empathy and it is Good!

The courage of the people who have gone on the same journey as I, or who continue to journey and wait for their gift of life is explored in many of the photographs that are contributed by Susan John Reid, who is a stronger than life individual, showing compassion not only for her husband Jack, but all lung buddies!

Thank you to all who shared ‘selfies’ sporting the commemorative t-shirt and boosting awareness for organ donation!

“Research shows that people who are physically healthy, have strong social and communal ties, and have meaningful goals tend to be happier and live longer”-  what a great idea!

PS  The video is roughly 10 minutes.  You’ll need to push the Vimeo button to watch.

6 -7-8 Months Post Op! August 2013- September 2013

October 2013

I started this post back in August after my 6 month assessment.  I failed to complete the publish and now almost 3 more months have past and I have to re-call everything that has transpired over this time period.  It is a good but challenging exercise to re-count and share …  honing those cognitive skills ..

August 2013

6 months post transplant has brought fewer trips to hospital for blood work and pulmonary function tests.  Now I test just once a month rather than every 2 weeks until I hit my 1 year anniversary.

I am cleared of the two infections I had during the summer, and I continue to add activities to my physical routine outside of the day-to-day errands, household work and dog care.

Clinic assessment days bring together ‘lung buds’ that were in pre-transplant and surgery roughly same time as myself.  This time I was strong and healthy enough to join a group of them (along with some of the most loving and strong-willed support folks)…. for tall tales and friendly banter.  Sharing stories and comparing recovery notes.

Carman, Pam, Keith, Mark

Carman, Pam, Keith, Mark

My new favourite anonymous quote:

“The soul needs gratitude, love, connection, community, reverence for life and an outlet to express itself creatively. When those needs are met, happiness follows.”     Below are a group of some of the happiest people on Earth!!!!

Happiest people on Earth. See how supportive a care team can be, everyone is smiling.

Stairs, Hills and crawl spaces!  All fears and nightmares in the past; now there are more stairs, steeper hills and longer walking distances outside of the treadmill!  After I was cleared in clinic, we flew to Newfoundland for a wedding….

Stairs in St. John's Newfoundland.  the city is full of them!

Stairs in St. John’s Newfoundland. the city is full of them!

There is always a view at the top!

There is always a view at the top!

bring them on!

bring them on!

Colorful Walk!

Colorful Walk!

upstairs, downstairs

upstairs, downstairs

Step Master!

Step Master!

Top of Signal Hill, St. John's NFLD  Up Up and Away!

Top of Signal Hill, St. John’s NFLD Up Up and Away!

5 years in the making.  My first steep walk.  Yeah!

5 years in the making. My first steep walk. Yeah!

Signal Hill St. Johns NFLD

Yes I am very pleased with myself.

September 2013

Took another road trip back to Minnesota with Bro-in-Law, Kurt and the Dogs.  Time to start planning fall clean up of the lake house, time to spend with Dad and his bountiful garden harvest, more fun with friends & family, outdoor fires, smores’, fireworks, walks in the woods and 5K walk down road; albeit lonely without Scott who is not able to be here at this time.

Angus the eldest dog,  is very weak as he is nearing his end of life.  I have the two pooches with me pretty much 24/7.  They just like to hang out.

Angus in his Thunder Shirt.  He enjoyed the fall sun.

Angus in his Thunder Shirt. He enjoyed the fall sun

Sunday Football and dinner at Dad's with Ellie!

Sunday Football and dinner at Dad’s with Ellie!

Wally loves the woods, just not too happy about sharing.

Kay & Sue Ann & Lloyd's tomatos.

Kay & Sue Ann & Lloyd’s tomatoes.

Sue & Ellie gotta love that team work!

Sue & Ellie gotta love that team work!

Fruits of the labor!

Fruits of the labor!

Dad putting together the first set of pies.

Dad putting together the first set of pies.

Anonymous Quote- The soul needs gratitude, love, connection, community, reverence for life and an outlet to express itself creatively. When those needs are met, happiness follows.

Getting ready for 5K walk for Multiple Myeloma Research

Getting ready for 5K walk for Multiple Myeloma Research

Finishing the walk

Finishing the walk

Brave cousin Steve.  We walked to honour him.

Brave cousin Steve. We walked to honour him.

September ended with sadness as we lost our friend Karen from post-op complications following her double lung transplant in July.

I am comforted by these words from my friend Pat,

All of you strong and brave, amazing people who go through an organ transplant, and especially a double lung transplant; take a huge leap of faith and trust to have a chance at a new life “

and  one of Karen’s favourite quotes,

We must be willing to get rid of the life we planned, so as to have the life that is waiting for us. – Joseph Campbell

We have her smile to keep with us always….

Photo captured by Ann-Marie Boudreau.

Photo captured by Ann-Marie Boudreau.

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Breath easy my friend… it has been an honour.  

5 month update

I first of all want to dedicate this post to my friend, Karen, who just went through the operating room doors ( 3pm EST July 14) on her way to receive the Gift of Life.  I have been part of her support team and the last two months I’ve been able to help her occasionally in the physio therapy room as she kept her body strong for surgery.    She listed the week after I received my lungs.  She is strong and has a wonderful care team that I am proud to be part of.

I now know what it must have felt like for all of you, family and friends!  The waiting time while on “the List” and then the anticipation of whether the possible match was viable, and now the surgery, and then recovery.

I woke up at 3AM (prednisone can do that to you)  checked my messages and saw that Karen got the call last night.  She is now in the hands of the best of the best.  She can rest while they do their work.  I look forward to seeing her when I get back to Toronto and look forward to helping her in her post transplant journey.

Meanwhile, I’ve been out here at Games Lake in Sunburg, Minnesota for 3 weeks now.  The last 2 1/2 weeks were filled with family & friends visiting, holiday celebrations and the annual Stroh family reunion at Uncle Ben and Aunt Kathy’s lake home.  Being Duo Citizens, Scott and I had a lot of Independence celebrating to do and visiting with all the people who were part of my hands on team as well as those who were there in spirit and moral support.  Things have now calmed down, and Scott is back in TO for a couple weeks.  I look forward to  more friends coming to visit  and sharing with them what I could only observe a year ago.

This past year has given me life, there are several folks very close to me who had loss, who have given me strength even though they were in pain.  The Stroh family, Caroline, Shannon, Ben, Kathy, John, Anne and the rest of the Stroh Clan –for Cousin Steve; Katie Malone and the Malone family— for Jim Malone; Mike Edwards, Sue, Courtney & Hailey— for their Aunt Borgie, Keith Cormier…The love of his life— for Eileen, the family of my donor— My donor.

I am reminded to slow it down a bit, as the healing process is still happening, I have a fungal infection that is being treated and now a bacterial infection that I will start to treat tomorrow.  So needless to say, I’m learning what “immune-suppressed’ means.  I find that when I go outside, the world is very full, but overwhelming, I think I can jump back in, but I get a heart flutter every time I try something I haven’t done for such a long time.

The world has opened up for me again, but it’s heavy, and I’m so used to being confined, that I’m a bit skittish .  I’m not Atlas yet …in fact i can barely hold myself up in downward dog!  But I none-the-less feel better and more confident each day.  I’m Alive! and as Scott reminds me, ..since the moment we were told that lungs were available, every day, every hour has been better than the one before.  Two years of relentless descent ended and the walk back up started.  He is a wise man, that Mr. Dyer.

New life is everywhere, the prairie grasses and wildflowers are progressing, the female turkey and her chicks were outside my window this AM, the doe has brought her fawns close to the house.  Both mothers are very aware of the ‘humans’, they know when you are looking at them…don’t even try opening a door or window for a snapshot…they are off and running.

I have posted a visual update, may have gone overboard, and I didn’t even get to every one.  Lots of hugs, gratitude and thanks!!!

Walk up to our house in Toronto.  Slow and steady, but ready and able.

Walk up to our house in Toronto. Slow and steady, but ready and able.

Slow and Steady, my constant reminder.

Slow and Steady, my constant reminder.

These will bloom and hopefully bring the butterflies.  They had a bit of hard luck in Texas this Spring.....here's hoping

These will bloom and hopefully bring the butterflies. They had a bit of hard luck in Texas this Spring…..here’s hoping

Healing and grieving with my friend Keith.

Healing and grieving with my friend Keith.

 

Finally a time to relax. Sue and Penelope

Finally a time to relax.
Sue and Penelope

So nice to see these two relax.  Scott still has the arms crossed... hmmmm.

So nice to see these two relax. Scott still has the arms crossed… hmmmm.

Dad still gets himself down to dock to fish.  My inspiration to keep on moving.

Dad still gets himself down to dock to fish. My inspiration to keep on moving.

Angus needs me now.

Angus needs me now.

Love in action

Love in action

This I do not aspire to be doing soon.  But the thrill of the their ride pleases me.

This I do not aspire to be doing soon. But the thrill of the their ride pleases me.

this I can do!

this I can do!

Kenny

Kenny

When it comes to relaxing, Hammocks force the issue.

When it comes to relaxing, Hammocks force the issue.

Well maybe it's not relaxing for a active cocker spaniel.

Well maybe it’s not relaxing for an active cocker spaniel.

The Stroh's and the memorial tree for Steve

The Stroh’s and the memorial tree for Steve

Malones and tree for their Father, Jimmy.

Malones and tree for their Father, Jimmy.

They don't come just because we feed them, they also love our grasses.

They don’t come just because we feed them, they also love our grasses.

I welcome them to my little prairie, they eat the deer ticks.

I welcome them to my little prairie, they eat the deer ticks.

For Karen... see you soon!

For Karen… see you soon!

Things I thought I’d never do again…

Went to Minnesota for a week to prep the Lake House for summer.  Last year I mostly sat on the porch looking out and wondering if I’d ever be able to partake in all the fun activities that we had planned when we developed the property.

As my disease got worse, I sometimes wondered if I even cared to walk in the woods again, or sit on the dock and fish or climb into the boat or garden.  Once I got there and took my first walk on the path through the woods and didn’t feel overwhelmed it occurred to me that I could do these things and really wanted to do them again  New beginnings for all of us….

Short flight, but should get use to being cautious.

Short flight, but should get use to being cautious.

Pathway through woods --Just starting to 'spring' up.

Pathway through woods –Just starting to ‘spring’ up.

Getting direction from Dad who provided the tomato plants

Being supervised by the Master!

Time for a tour of property.

Time for a tour of property.

3 Month Anniversary – May 4, 2013

Last week May 6th – 10th I was at Toronto General 4 out of the 5 days doing out-patient tests for my 3 month assessment.  Now the doctors will not need to see me until another 3 months have passed.  I will continue to do blood work and breathing tests every two weeks to keep a watch on my blood levels so any signs of infection or rejection can be dealt with in an efficient manner.  I’m doing great!  That’s all anyone can say!

It was a long and exhausting week with fasting and poking and tubes down my nose and throat.  In light of all that it was inspiring and humbling,  because it was also anniversary week for other fellow transplant recipients who were there for their 3 month, 6 month, 9 month, 12 month and even 2 years!  The happiest people on earth I swear!

clinicday

Clinic Day – 3 months – Me and my Twins!

Supervised Physio Therapy is over.  I now will be continuing a regular exercise program on my own to continue to build my strength and keep my bones healthy.  I will miss them, they were the nicest, firmest group of medical professionals.  They had the perfect balance of gentle and firm that I needed to get back into living a physical life.  As Carmen a fellow transplant recipient commented, “Your pushed out on a floating ice berg, Swim Nemo Swim!”

Over the past 12 week period I worked up to 4% grade at 3.5 mph on the treadmill.  Which gave me the strength and stamina to do the stairs from the seats at a Jay’s Game! (with no recovery time needed)  Prior to the transplant I could walk at 0% grade at .5 mph and still needed to recover after less than 20 minutes because I couldn’t pull in enough oxygen to keep the muscles pumping the oxygenated blood to my extremities.

treadmill

4% grade @ 3.5mph 20 minutes

rogerscentrestairs

Rogers Centre Stairs.. First big climb post transplant.

My xrays continue to be one of my favorite tests to check,  as they give me such a clear idea of what I had in my lung capacity in the past and what my new lungs now give me.

Comparing the pre-transplant lungs from January 2013 with my clinical check up in March  and then this last check up at 13 weeks.  The Dark space is  oxygen, the white spidery  lines on the first X-ray are the fibrosis and scarring.  all clear now!  See how you can see my stomach on the right side of slide 1?  That is because the lung tissue has shrunken up and revealed it.  It is covered in slide 2 and 3 as the lung is full size again and covers the stomach.

Old lungs plus two shot of new lungs.  January- Old, March and May New

Old lungs plus two shot of new lungs. January- Old, March and May New lungs!

I went to Minnesota to surprise my family for my brother, George’s wedding.  At breakfast I was surprised by my first caregiver, Kelly, who gathered a group of friends from Minneapolis to celebrate my 3 month anniversary.  It was pure joy and surprise for everyone!!!

PamLehn001

Kelly, Pam, Scott

celebrate

It’s Water! Really!

And the one surprise that I couldn’t resist was for my sister, Sue Ann, who spent several weeks caring for me and traveling through the darkest times with both Scott and me.

Greetings

Mike, Sue Ann, Pam

Working on Spring

Yesterday was Easter Sunday.  It was my Resurrection Day!

That clever comment came from Scott’s cousin who has been very supportive and knows what having a transplant in the family can be like as her brother is a 10 year heart transplant survivor.

This begins Week 7 of my 12 week post op follow up.  I’m working toward my first milestone of 3 months.   The program involves 3 days at physio therapy and 1 day of tests and clinic follow up with one of the doctors in the program.

Some progress up to this point:

Week 4- Nieces Eleanore and Sarah were here with me.  It involved running errands, and trying out a couple new restaurants for lunch.  Along with some fantastic meals and deserts cooked up by Eleanore.  Weight is stable.

The Foodie Week!

The Foodie Week!

Week 5

Courtney was here for my second bronchosopy and my increased walking speed!  There is an hour prep prior to the bronch procedure.  They freeze the throat so the doctor can insert a scope that has a camera and a tweezers on the end.  They take pictures of the airways to make sure the stitches are healing and there is no infection.  They also grab a tissue sample to look for any early signs of rejection.

Bronch prep- throat freezing.

Bronch prep- throat freezing.

When I mark on my chart that my legs are not fatigued beyond a 4 out of 10 then the therapist adds to my challenge by increasing speed or grade or both!

Fast Forward!  3mph good brisk walk

Fast Forward! 3mph good brisk walk

Prior to my transplant I was at a low of walking  (1/2) mph  until my oxygen level dropped too low and my recovery was long and full of coughing at which time they had me stop the treadmill altogether and just do the bike.  So 3 mph is very exciting.

End of week 5 clinic-  This chest x-ray comparison is a reverse of the negative.  The lungs on the left are my new lungs.  The white space would be the oxygen mass occupied by the lung, the lungs on the right are my old lungs taken just prior to my transplant date.  You can see how they have shrunk in size and the functional area was quite small.

Each week I can see more positive space on the ‘gifted’ lungs.

Think White!  Think Positive!

Think White! Think Positive!

Week 6  My brother Mike was here for this week.  No Clinic just physio and some tests.  I am still on a weight restriction for lifting which is 10 lbs or less so Wally has to be carried down by someone other than myself.  Angus is under 10 lbs.  Both Wally and I will miss Mike…

My sleep patterns are still a bit sporadic but the one thing I don’t have any longer are nightmares about stairs!  And I’m looking forward to tackling the ones at Rogers Centre this week when the baseball season begins.  Slow and Steady!

I'd like a re-do of this hike.  It was a nightmare at the time.  and I used to have flashbacks about it or any other grade of stairs!

I’d like a re-do of this hike. It was a nightmare at the time. and I used to have flashbacks about it or any other grade of stairs!

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