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Friday, February 6, 2015

Mark Shares - A Beautiful Heart

A Beautiful Heart

Friday, January 30, 2015, at noon I celebrated a second birthday. I was also given a number, 1189… my Tampa General transplant number. I’ve received the gift of life on top of an already great life. I’m so grateful for both . Gifts don’t get any bigger than that. Typically, big gifts come from people we know, people we have a relationship with that give context to the gift. I’ll spend the rest of my life searching for the answer “why” attached to this gift. The most significant life altering gift I’ll ever receive came from a complete stranger with no expectations and no instructions. Despite that I have a deep sense of responsibility towards this gift of life I know I can never deserve. I’m having my Private Ryan moment receiving the instructions to “earn it”. God help me “earn it”, give me increasing clarity on how I’m to honor this gift.
Here’s the fun part. I was at the Florida DMV on Thursday getting my FL drivers license. I actually hung up on TGH twice then I realized that second call meant this was significant. I immediately received a call from Jami saying TGH had a heart for me. Here’s the cool part. While the calls were coming in I was explaining to the DMV why it was so important for me to be a organ donor. …sidenote, be an organ donor.


Within 20 minutes I was headed to TGH with my dad. Jami was working hard on her end booking a ticket for her and the girls at 2:30, on the plane at 3:20, and landing in Tampa at 8pm. I was waiting impatiently to get through admitting.


At this point a lot could still happen. Horror stories include having your number called only to find out that the heart had defects that could only be discerned by the surgeon inspecting the organ… one guy was called and prepped three different times before it was the “right” heart. I kept asking “are they close” to knowing if this was the heart for me. I found out later that they wouldn’t find out until I had a chest tube in me and they were ready to harvest the organ. The word harvest bugs me. It somehow removes the humanity, but it’s the word they use, and it includes a physical inspection with the surgeon running his/her hands along the organ to make sure there isn’t any disease that didn’t show up in all the other tests.
Around 6am on Friday I was wheeled into the OR… don’t remember anything else until I realized I was in the ICU with a new heart and lot of smiling faces around me. Dr. Hooker described it as a “beautiful heart”, and a perfect size even though it was the size of my fist and replacing a heart the size of a softball…room to roam.  All we know is that the  heart came from a female less than two hours away.  The less time on ice the better.  Have I mentioned how grateful I am to everyone that participated in my heart journey? From notes, calls prayers and Facebook posts to the medical staff here at TGH, my surgeon, Dr. Hooker, my cardiologist Dr. Arroyo, my parents, Jami and the girls, and of course the donor I’m so thankful for all the acts of love and talent that have been extended to me.
Post Surgery


Post surgery there’s a lot of pain. I’m thankful that I’m recuperating as fast as I am. I’m feeling less pain now and everyday I slough off the vestiges of the last several years. First a heart that got over the finish line with a stainless steel pump attached to it and various controller tubes and wires attached to the controller and batteries outside my body, next the defibrillator, last came the chest drainage tubes, and a temporary defibrillator. All that’s left is a new heart, and a lot of holes (11 at last count), a sternum strapped together with wires… and a lot to think about.
I look a little high in the next pic, really grateful for drugs at this point too. :)


My Surgery was a week ago Friday. Today I’m up walking and looking at a Monday discharge. I get a lot of jaw dropping when they hear how short the time has been since implant.  I love that.  I had a sweet celebration on the phone today with Dr. Sharkey who took care of me since my diagnosis in 2006. He’s been the best example of brilliant and caring.  He always gave me faith that we’d have a positive outcome.  We have at least a month here in Tampa with rejection biopsies, a lot of education on medication, and healing. It’s not a bad place to wait.
Tampa out my TGH window.


Jami and Rico will be here. I’ll be Facetiming the girls everyday and looking at life from my new birthday.

Saturday, January 10, 2015

On the List at Tampa General

What we’ve been working towards since I landed in Florida happened on Thursday.  I was formally presented to the transplant board at Tampa General and unanimously accepted! Yay!  It took longer than I would have hoped, but we ran into the holidays and the board meets on Thursdays, precluding me being considered until now.  It felt a little anticlimactic because I’d been quizzing every nurse and coordinator regarding my status and the word was I had nothing to worry about… I did anyway because I can’t help myself.  Still, two emotions surfaced with the fantastic news. 

Faithful FL Companion - Rico
One was relief.  We’d rolled the dice that TGH was my best option and we had to wait a long time to have that confirmed.  Another big reason was the anxiousness of the possibility that I’d get a call from Minneapolis Heart Institute/Abbott alerting me that they had a heart match for me 1600 miles away.  The week before Christmas, I got that call.  I was sitting in the condo on a Saturday evening when a transplant coordinator called to confirm that I was still in Florida.  I knew immediately what was going on.  I don’t think I’m over-exaggerating when I say this was possibly the lowest moment I’d had since this ordeal started last January.  Up until this point, I was simply responding to the cards I’d been dealt.  I hadn’t caused my heart failure.  As sad as I was to be facing a long battle for my survival and without really knowing what the outcome could be, I still was pretty upbeat and hopeful.  I was also grateful that I had a reasonable chance of surviving and perhaps even regaining some aspects of my life following transplant that I’d had to give up, namely running. But from my perspective, I wasn’t to blame for my situation.  Sitting in the dark with the fresh news that I had missed out on a heart back home hit me like a train.  I was responsible for this event.  I’d chosen to move to Florida.  I’d made the decision to leave behind Minneapolis Heart… and I’d chosen wrong.  It was my fault.  I brought this on myself. Then I called Jami and dumped all my sadness and anger and self-loathing on her.  She was headed with the girls to a Christmas concert.  The girls overheard what was going on.  Now I heard them crying over the phone.  I still tear up thinking about the reality of the situation, the isolation, and the aloneness.  And now the burden of having unloaded that on the three people that I care most about.  I did think for a brief moment that everyone would be a lot better off if I wasn’t there bringing pain and sadness to their lives.  Yes, it was a dark moment. 

So, you can understand the relief I experienced on Thursday with the news that I am now officially on the list at TGH and would not receive any more soul-crippling calls from Minneapolis Heart.  The footnote is that I received a follow up call from the transplant coordinator at MH. I wouldn’t not have received the heart.  I was again third on the list and the first candidate was transplanted.  All that anguish for nothing.  
And the other emotion… gratefulness.  There are so many things I’m thankful for and all those came rushing to the surface with this great news.  I was on the list.  I’m a great candidate with an excellent chance to thrive after transplant. In fact, a nurse shared with me that in presenting me to the board my cardiologist described me as the “perfect candidate”.  I’ve never been perfect at anything! So I’ve got that going for me!  I had the most amazing 2-week visit from my girls.  We had perfect weather and meaningful family time that I cherish.  I’m grateful for our little spot in Punta Gorda with a view of the water that I get to enjoy everyday.  I’m thankful for lots of family, friends and co-workers that call, email and visit, supporting me and praying for me.  Would it be a stretch to say I’m lucky?  I guess it’s a bit ironic, but that’s what I feel.  
One last Job moment (the biblical Job), and then I’ll sign off.  I found out that with all the testing they’ve done they discovered I have…drum roll… Celiac Disease.  So now I get to add a gluten free diet to everything else I need to manage.  It’s almost comical.  Almost.  
My prayer is that I won’t have enough events to merit another post before I get the call that a heart is waiting.  Until then I’ll be grateful to enjoy each day as it comes.


Friday, December 12, 2014

Mark's Update from FL - Waiting for a Heart Transplant


I’ve been waiting to update with the hope that I could deliver some good news about my status with Tampa General.  It’s going to take a little longer to get that update.  I’ve been in Florida since November 16.  I had my first appointment on the 17th (thanks to Jami’s Uncle Ralph for being my Florida Family and spending the whole day at TGH).  And the appointments keep coming.  I have to admit a little frustration in the inability of the system to get me to the place that I can be considered for transplant with TGH more quickly.  I continue to be positive about my decision.  I’m more sure now that my chances are better to be transplanted faster here than in Minnesota, but not without a cost.  I really miss my family.  Thank God for FaceTime and a much needed family visit over Christmas break!  The way the days fall it looks like I won’t be able to presented to the review board until after New Year’s .  Pray there are no roadblocks.  Once accepted I’ll shift my time on the list to TGH.  So thankful I’m not starting over!
What keeps me positive and hopeful:   

All my friends and family that have reached out to me just to check in or arrange a visit. Thanks Tim and Katie for making me a side trip on your visits to the sunshine state. Thanks Tom for consistently checking in on me and being ready to jump on a plane if I need a visit. Thanks Father Rolf for your check-ins and prayers!  Thanks Mom and Dad for your faithfulness and encouragement.  Thanks to my girls for making me a part of everyday.  
Rico has been a blessing.  Don’t know what I’d do without my little buddy for companionship.
Florida!  I could be waiting in Cleveland or worse… how much worse does it get than Cleveland?  I see the sun almost everyday.  I enjoy walks by the water.  
My Health!  I feel great.  The VAD continues to do the job.  I know I feel so much better than last year at this time.  I was on borrowed time.  
…And if I ever need live entertainment I can drop by the Wal-mart late in the evening for a snapshot of life that can only be described as surreal.  
I covet your prayers.  I know that’s a daily habit for many of you, I pray for you too!  Keep in touch!

Thursday, November 27, 2014

The Transformational Power of Gratitude

Thanksgiving is my favorite holiday.  On this celebratory day off we make traditional food and gather with people who are important to us.  We reflect on what we are grateful for, what has brought the most meaning to our lives, what makes us happy.  Today, our definition of love and who makes our lives full, rich and purposeful are called to mind.

This Thanksgiving, our family is reflecting back on our most challenging year as Mark awaits a heart transplant.  His fragile heart is sustained by an impeller pump that takes on the infinite duty of distributing his blood around to his vessels and organs.  He has no heart beat but the whirl of a machine instead keeping him alive as we wait and desperately hope.  Life had never been so fleeting and precious.

What we celebrate today on Thanksgiving has transformed a dark, difficult time into a season of great blessing. At every Mass as part of the liturgy, said everyday of the year, our Priests remind us that 'we do well always and everywhere to give you thanks'.  We've heard it countless times but this year, as Mark has fought to remain with us, giving thanks has become a lifeline.  Deeply impacted by the research of Dr. Robert Emmons and his book Gratitude Works, we set out on a journey to be intentional about capturing the good in each day, despite enduring the precariousness of Mark's health in this marathon journey.  Our gratitude practice became the shield that protected us daily from anxiety and despair.  It was the sword that beat back fear and kept my mind in today rather than thoughts of a black, shadowy future where I'm a widow and single mom.  Gratitude brought me back to the reality of Mark still here - what a relief to steer my mind back to the present.  Pausing, taking in the now, wanting more of what is right here, right now - that is gratitude...lifesaving, life-giving gratitude.

Desperate for fresh air and the inspiration of nature, I'll never forget a winter walk I took last March as Mark was running out of time waiting for a heart, living in ICU indefinitely.  The sky matched the colorless gray of the snow-covered ground.  The trees were devoid of all color except for the craggy, dreary brown of the bark.  Brown and gray matched my floundering heart. Suddenly, a brilliant male cardinal flew across the trail, the red flash capturing my full attention popping against the dull, winter backdrop.   My anxious thoughts couldn't help but be averted, my mood immediately lightened just by seeing this bright, beautiful creature.  A few moments later, as if on cue, the female mate, more muted in color but still revelatory, flew across the trail.  Together, 20 years into this journey - in sickness and in health - color pops against the gray, light is present amidst the darkest times.  An intentional gratitude practice - chronicling the positive moments present in each day - has helped me be watchful, expectant, hopeful rather than despondent.  This is the transformational power of gratitude - it makes me want more of what I already have.  The now is good enough, wonderful, in fact, and I want to savor it, encircle it and be present to capture it.   Gratitude keeps the uncertainty of the future at bay.

With deep gratitude, we want to thank all of you who have encouraged us this year, reached out to us with expressions of love, checked in on our status.  For those who braved the roads to visit us in the depths of winter in Minnesota.  For meals, cards of encouragement, Facebook messages and comments, calls, gifts sent in the mail.  Prayers - so many offered up on our behalf and we believe will be answered in some mysterious way.  We are humbled and thankful for you standing with us. Our gratefulness for you has fueled our faith, courage, resilience and hope.  Gratitude has the power to transform our lives - may everyday be Thanksgiving!

Monday, October 6, 2014

Roller Coaster Ride Waiting for a Heart - 1A Time Expires

Its been a whirlwind month as Mark has been on the 1A top priority heart transplant list with Abbott Northwestern/Minneapolis Heart Institute.  Thankfully, life was busy and full to keep our minds and hearts occupied while we waited for the phone to ring.  Our teenage daughters were in the throws of their tennis season, our work needed tending to and a glorious autumn in MN allowed us to sail often.
Chanhassen Girls Tennis - A Great Distraction
As the days ticked by with no call, an alternative plan took root thanks to several chance meetings with fellow heart transplant patients who chose to move to other cities in order to better their chances. We also had several dear friends with medical expertise who spoke into this decision with us and provided valuable wisdom and guidance - so grateful to Sue Strobel, Dr. Kathy Waller and Tom Rath. A plan began to develop for Mark to move down to our condo in Florida and associate with Tampa General Hospital if his 1A time here in MN was unsuccessful.

Come to FL - Visitors Welcome! 
With only 4 days left on 1A, we received THE call last Monday that we'd yearned and longed for everyday....a heart was available and Mark was in the running to receive it.  For me, a volcano of emotions erupted with long-suppressed hope finally having a reason to emerge.  I'd spent so much emotional effort trying to stay in the moment and savor each day. We haven't had the ability to plan or think about the future these last 9 months because of the uncertainty and futility of it - better to make today count. The thought of him being restored through this life-giving rescue of a new heart opened the floodgates of hope for the future.  I couldn't hold it back even though we were told there were 2 other people ahead of Mark on the list.  He packed his bag, we waited for the call to head down (or not) and prayed that this would be his perfect match.

So determined and brave!  
It was a strange few hours - a middle place like nothing we'd experienced in this time of waiting.  I couldn't help but think of the donor and their family, their grief and sadness, wondering what happened.  Brave enough to press forward in donating their loved one's organs in the midst of their overwhelming loss. A stark contrast with my own building excitement and ultimate hope, tasting a bit of the gratitude and relief we'd all feel if this was it.  We were also mindful of the other 2 candidates and their families feeling our same inner pleading as we all waited to know who was to be selected. My mind and heart left the station thinking of all this could ultimately mean for our lives...possibilities opening up again, dreams pursued, freedom to travel again, health, relief, fears subsiding, walking the girls down the aisle, growing old together.  I didn't hold it back and when the call came that the heart went to one of the others, it was a long, hard fall back to reality.  It stung and I'm struggling to claw my way back to equilibrium.

In my disappointment and sadness, it has helped to pray for the person who did receive the heart a week ago today.  I think of him/her everyday, letting my feelings of happiness, relief and joy for them do battle against my despair.  Though anonymously, we join their ranks of support and love offered up for recovery, restoration, no rejection and the 2nd chance at life.  Please let this be us someday!

Mark's resilience and resolve truly set the pace for our family - enough crying already!  Onward!

He booked a one-way ticket today for FL and he and Rico will head down on November 4th.  If you need a winter getaway, go down and hang out as he waits - free lodging and the beach!  Thank you to all who have been on this journey with us - your love and encouragement sure helps! As my best friend moves away, I'd love time with you!

Sunday, June 15, 2014

Everyday is Father's Day

Happy Father's Day!  We are especially celebratory on this Father's Day since Mark has been granted more time and remains with us.  We almost lost him this winter so won't let this day, or any other day for that matter, slip by without soaking up our life in his presence.  I've heard stories from many people who've engaged with me or intersected my path on this journey who have already crossed over to the grief and loss side of a similar fight.  I come away from these conversations more determined than ever to make the most of our time, whatever it looks like, amidst great challenges.  This is an especially glorious Father's Day!  Despite Mark's battle to survive congestive heart failure, endure life with an LVAD and hopefully receive a new heart eventually, we are grateful that he's still here with us and will make it count.

 If this isn't too personal, I would ask for the wisdom, insight and guidance from those who have suffered the loss of their dad....what would you do today if your dad was still here?  How would you celebrate and mark the day?  Help us make more of this day, and everyday, as we contemplate the alternative, knowing each interaction is an opportunity to be present and savor time that is fleeting with these loved ones.  Teach us to treat everyday as Father's Day - we would do so in honor of the one you lost.  Thank you all for your continued prayers, friendship, and encouragement; for being on this long road with us!  

Wednesday, May 7, 2014

Mark Shares His Thoughts: "Thankful to Be Here"

It’s been six weeks since my surgery to implant the VAD (ventricular assist device).  From Jami’s last blog post you can get a sense of the urgency associated with the surgery.  I’m just so thankful that there was a plan B when my heart decided it was not going to hold out until donor heart became available.  I’ve heard that almost 50% of heart transplants are a transition from a VAD to a new heart.
I was out of the hospital and back home in 7 days… really fast for a surgery this invasive.
The surgery was on March 21.  Since then I’ve had two unscheduled stays in the hospital as we try to get my coumadin (blood thinner) dosage right.  The pump can clog if the blood is too thick… that would be bad.  I’m told that the unscheduled short stays happen to everyone…   Jami can attest that being readmitted are some of my saddest times.  I’d say I’m most focused on one goal right now… staying out of the hospital as I recuperate.  I believe I’ll be picking up my activity bit by bit as I gain strength and have less pain (the pump is not a welcome guest in my chest and some nerves inside my ribcage really take issue with the unwanted visitor bumping around in there).
Bright spots include celebrating Paige’s prom last week.  I got be the official photographer for a pre-prom event at Jami’s parent’s house.

…and today I had the privilege of celebrating with Reilly as she passed her driver test on her 16th birthday!!!

I’m so thankful to be getting back my stamina and feeling healthy.  My appetite is returning and I’m slowing gaining back weight which I desperately need to prepare for the heart transplant.  I’ve got some time.  It’s typically 6 months to heal from the surgery then I’ll go back on the list and wait. Having my mobility and being able to wait at home is a blessing but it will take time for a new heart to become available.  I’ve heard all kinds of estimates, conservatively I’m looking at 9-18 months.
But life is sweet and I’m thankful for every day!

Monday, March 24, 2014

On the Road to Recovery - LVAD Working!

9 IV Meds before surgery
Dr. Louis B Louis IV
Waves of relief continue to build and wash over us!  Unable to wait until Tuesday, Mark had the Heartware LVAD surgically implanted last Friday.  The LVAD, Dr. Louis Louis and his team and the Lord saved his life!  He is no longer dying...he's living again!

His recovery has begun in true Mark fashion!  Already up walking, no more IV's, tubes removed and he's requesting Famous Dave's for his first real meal post-surgery!  His sheer determination, resilience and drive kicked in immediately and he is attacking getting well like he's pursued other challenging opportunities throughout his life.

We are very proud of him - his calm resolve going into surgery carried the girls and I through a very difficult morning as he was wheeled away.  Your prayers and ours were answered in these moments as the Holy Spirit was present.... comforting, strengthening and protecting us beyond what our humanness could handle.  Mark's nurse, Tammy, during those critical days leading up to his surgery, ministered to all of us beyond any nursing training or expertise.  Dr. Peter Zimbwa circled up my sobbing daughters as Mark was wheeled away and in the most simple, kind way, infusing humor even, he calmed and comforted them...then made the sign of the cross.  Everyday heroes that stand in the gap for families and save the lives of their patients.

Mark has a long recovery ahead but thankfully so - please keep praying for him! We will continue to live one day at a time. We'll also be looking for opportunities to live differently as a result of this ordeal - seizing wonderful, ordinary days and making them extraordinary.  We feel compelled to pay all this forward that we've received from you!  I will advocate for organ donation and am thinking about becoming a living kidney donor once we get through this.  Mark will go back on the 1B heart transplant list once he recovers from open heart surgery in 6 months.  Our adventure continues...not an easy journey but we have our Lord to 'give us this day, our daily bread'.  Your love and prayers inspire and sustain us! 

Wednesday, March 19, 2014

Need a Heart By Tuesday!

So many of you are praying for us!  We would ask you to continue as Mark's situation has become even more urgent.  He's basically out of time and is unable to continue to wait for a heart to become available.  His doctors have exhausted every medication (he is currently on 9 meds) to stabilize his heart but it continues to fail at a rapid rate.  Yesterday, we were told that they need to move forward with the LVAD (left ventricular assist device) and the surgery is scheduled for Tuesday.  Dick Cheney had one of these prior to receiving his new heart.  It is an inserted device that will basically pump Mark's blood for him and he will wear battery packs to keep the pump going.  It requires an extensive open heart surgery, a long recovery and a rigorous maintenance regimen.  Mark will be off the list for 6 months in recovery then will go back on the list but as a 1B candidate - most likely it will be several years waiting. 

It was a very emotional day as we were hoping to avoid this procedure, hoping instead for the only ultimate solution which is a new heart.  We are still hoping and praying for a new heart to come but it needs to come by Tuesday!  We continue to ask God for this miracle for Mark, now with a fast approaching deadline.  Will you join us in praying for this miracle?  If it is not God's will, then we will accept the LVAD Plan B with gratitude.  That he can remain with us is our ultimate prayer - whatever it takes! 

As we've received so much love from you all, so many prayers offered up for us - we are humbled! In contemplating this during my own prayer time, I've asked that every time you offer up prayers for us...turn your hearts upward to Him on our behalf... that the Lord would pour into you His love and presence.  Thank you for being with us on this journey!  We love you! 

Friday, March 7, 2014

Back in ICU but Top Priority/1A on "The List"

Mark's temporary home in ICU's VIP suite
Greetings from the Cardiac ICU at Abbott Northwestern Heart Hospital in Minneapolis - we're back!  Mark and I are enjoying a quiet Friday night together and feel at peace.  We'd been warned that he might be admitted again if the doctors didn't like what they saw after his scheduled procedure yesterday.  We both had a sense that he'd be going back in so he packed a bag and said a heartfelt goodbye to the girls when they left for school yesterday morning.  After the initial depression of being back in here wore off, we both regrouped and regained our hope....Onward!  Mark has been moved to 1A top priority on the heart transplant list so although his heart has deteriorated, he now qualifies for the most urgent category and can accept a heart from a 1000 mile radius.  The heart has to come from a person with the same blood type and similar body size.  Our beloved Cardiologist of 7 years, Dr. Scott Sharkey, said it perfectly last night..."you've been upgraded to First Class". 
Dr. Sharkey - We honestly LOVE him!
We are here with full hearts.  The 5 weeks Mark was home with us was an incredible gift - such simple, ordinary days when taken away - then restored - become precious.  We enjoyed family meals together, watched our winter TV shows, he took Reilly out driving then to Caribou, kissed the girls goodbye before school every morning, went to Mass...the normal flow of everyday life but in sharp focus and savored.  Living 'one day at a time' and trying to direct our minds to be in the 'here and now' only have been our saving grace.  Thinking about the past tends to bring on tinges of grief and sadness for what's now impossible and missing from our lives.  The future is full of uncertainty and many difficult days ahead.  With mindfulness, returning to this wonderful moment right now has been an anchor. 

We truly believe we have a reservoir of peace because of the love poured into our hearts to overflowing by so many of you!  Friends traveled from out of state to visit, meals were delivered with cheer and love, we celebrated our annual 'Winter is Almost Over' party with friends last Friday at our house.  Mark has received the most amazing notes - words of encouragement, love and hope.  Mark's boss, Connie, flew in from DC on Monday to visit and another Gallup colleague and friend, Shane Lopez, literally the world's leading researcher and author on Hope, came up from Lawrence, KS.  It was a thrill to see Mark so happy during these times ...animated, funny, engaging, thoroughly enjoying the moments and resulting encouragement from time with dear friends.  They gave us a break from the reality of this challenge and allowed us to forget for a time. We will never be able to repay this outpouring of generosity but know that it has sustained us, buoyed our spirits and gotten us through.  Please keep it coming! 

Our hearts are full as this season of waiting is coinciding with the season of Lent.  The last night we had at home with Mark was Ash Wednesday and we received our ashes together as a family.  “Remember that you are dust, and unto dust you shall return” (Genesis 3:19)...true...but we're praying fervently for more time.   I also had a sense to pray for the donor and their family everyday of Lent as I believe the heart intended for Mark is coming soon.  That the time remaining will be meaningful and spiritually significant for the donor.  Will you join us on this Lenten journey and pray with us?  Your prayers, love and support add to our reservoir of faith and hope as we wait for Mark's new heart!  Please stay with us!