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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! 

Wednesday, February 19, 2014

From Mark: Waiting For A Heart Chronicles

I’ll start again by thanking everyone that has sent a card, brought food, gave us a dinner out, responded to the blog posts, or just “liked” some of the references to my journey on Facebook.  I look at every post, read every card and view every “like” and comment.  It’s a lifeline.

I’m feeling really good right now!  I’ve established a routine mostly focused on taking care of my heart as I try to add back parts of my life that energize me and make me want to get up every day. That includes my work at Gallup.  I celebrated 14 years of employment with Gallup this week, and I count a lot of my coworkers as very dear friends.

I have a home healthcare nurse that comes by twice a week to check my vitals, check that I’m doing ok emotionally, and make sure my picc (peripherally inserted central catheter) line is working.  The line is hooked to a small (but not that small) electronic pump, and a bag of meds that I change along with a battery every 48 hours.  I love my picc like a child would love and care for their tamagotchi.

Ken, my nurse, says I’m his best patient… because I’m compliant, go figure!  Compliant to me means I want to do everything in my power to keep this heart going until I get the call that a heart has been donated with my name on it.  I follow his instructions to the letter.  It’s probably the most disciplined I’ve been about anything, except running.

I’m doing better than ok emotionally because I have so many friends supporting me.  My second week out of the hospital I had two dear friends from my Young Life days, Kyle Gillespie, and Heidi Kretsinger, pay me a visit with a huge winter storm looming in the home town of KC.  They were followed by two more YL friends from Lincoln, Troy Heller and Bret Welstead.  We didn’t do a lot, just hung out, talked and they obliged my obsession with hot spicy food (nothing else tastes good, not even dessert). So we went out to eat Thai, Mexican and for a special treat, Caribbean food at a restaurant featured on Diners, Drive-ins and Dives.  The only peppers they cook with are scotch bonnets and ghost peppers… it was amazing!

My work buddy, Paula Wilhelm, is another friend that goes above and beyond running things to and from the office, bringing over food or an extra bag of salt for our sidewalk.  She also took the initiative to email our CEO regarding Organ Donor Day last Friday.  He forwarded the message to the entire company.  Here’s the link…

Needless to say I’m humbled by the sacrifice and commitment so many have shown our family.  The words and prayers and actions of my friends and family make me want to get up each day.  I’ll share more about the selfless acts of others in the future… there’s a lot!

Probably enough for now…  Thanks!

Monday, February 10, 2014

Mark's Perspective - Waiting for a Heart

I’ve had so many dear friends reach out since my latest heart challenge.  I’m overwhelmed with the care and concern so many of you have expressed both in words and actions.  All I can say is “thanks” but it doesn’t seem near enough.

You’ve probably kept up with my “progress” through a couple of posts Jami took the time to create that helped folks stay current and get a sense of what my whole family has been going through since this started. 

Here are some touch points and reflections along the way from my perspective.
Our Christmas break in Florida was the first indication that things had changed with my heart, and that I was probably going to find myself on a different path than I had been on since being diagnosed 7 years ago with dilated cardiomyopathy.  Once we were back home I went to my cardiologist that confirmed my symptoms indicated a turn for the worse.  This was not a surprise to me or my cardiologist.  A crude but accurate analogy would be to compare my heart to a car you might own with 200k miles… you keep topping off the oil and just drive it into the ground.  I guess on my best days I hoped that I was special or uniquely equipped to sustain a bad heart into my 70s and that would be good enough.  I don’t think my cardiologist ever believed I would get to 7 years without seeing the heart fail completely and require a transplant.  He only expected my to last 2 years with heart as badly damaged as it is.  To give you some perspective heart health is in part measured by it’s ejection fraction, the force it generate for push blood out and through the body. Normal EF is around 50… mine is probably around 15.  One of the things I’m thankful for is my small size.  I not only fit easily into my MINI Cooper… but my heart doesn’t need to work nearly as hard to move the blood around.

Jami and I were as ready as we could be for our next visit with a transplant cardiologist… we weren’t expecting her to immediately check me into the ICU at the end of appointment.  She not only confirmed me needing a new heart she was very concerned that my heart was near imminent failure.
Next thing I know Jami is saying “goodbye” and leaving the ICU to somehow break this news to our daughters.  Nurses and doctors kept visiting taking blood, inserting IVs, checking vitals, and making decisions about the cocktail of drugs that might reverse my downward spiral.  Around midnight the flurry of activity faded.  It was dark and quiet except for the beeping sensors monitoring my vitals.  I laid there and cried for a long time.

I having nothing but good to say about the care I received.  The nurses and doctors were all very empathetic and caring.  But the ICU is a place to keep from dying not a place to really start healing.
The med cocktail worked and I showed a lot of improvement.  I was taken off nitroprusside a drug defined as a vasodilator taken to lower my blood pressure.  I’ll remember the wicked headaches, nausea and vomiting.  The irony was my medication took a U-turn and now I was taking dobutamine intended to constrict my heart and actually make it work harder.  The doctors were trying to figure out how to sustain my vital organs while I waited for a transplant.  The good news was that I responded so well to the drug they were able to lower the dosage to threshold that started a new conversation on whether or not I could actually live with an IV of dobutamine at home as I waited on the list.

At first Jami and I were devastated that I would enter the list as a 1A candidate (top of the list) vs 1B waiting at home.  In hindsight it has been a real gift.  I can’t tell you how thankful I am to be home and semi-mobile.  I’m able to get out each day for coffee, go to Mass.  I’m sporting a stylish Napoleon Dynamite-style fanny pack with my meds and pump… no room for tots, and I can’t travel more than 2 hours from the hospital, but I’m so thankful to be at home with my family and access to friends that I consider it a minor inconvenience.

I’ll try to use this blog to help me make sense of my experience and all the scary, crazy and good things that have happened and are happening, and give my friends a glimpse into our new normal.
More to come…

Sunday, January 26, 2014

On The Transplant List - Waiting by the Phone!

We celebrated our 20th wedding
anniversary last week!
To all of you who have been in this journey with us over these last 2 weeks, we are thankful!  Mark and I have read and reread every message, Facebook post, email, and text from you, listened repeatedly to your voice mails - it was our nightly ritual from the hospital room. So humbling - the outpouring of love and support from far and wide. Mark has felt so loved! You have given us strength for each day and it has fueled our hope, optimism and gratitude!

Mark was officially placed on heart transplant list on Wednesday, January 22nd.  He currently is listed as a '1B' status which was initially such a disappointment as we were hoping he would be a 1A - top/urgent priority. Turns out his heart has responded favorably to the medication and there are others worse off than him which was hard for us to fathom at the time.  The blessing that emerged as we let this news simmer a bit was that as a 'B' lister, Mark would be released from ICU to wait by the phone from home with an IV.  This was contrary to the news we'd received earlier in the week that he wouldn't be returning home without a new heart or a VAD implanted heart pump.  He was released on Friday night much to the joy of all of us, especially Paige & Reilly!  He is already eating and sleeping better, perking back up in the comfortable environment of home!  So grateful!
'Sid and Sammy Seltzer' at Castaway 

Please pray that his tired, enlarged, damaged heart will hold on and that it can be sustained with this medication until a new heart becomes available.  Our prayer is that he can avoid the VAD surgery and go straight to the only ultimate solution which is a new heart.

Pray for the donor and their family - I get choked up every time I think of them!  To be able to make this generous decision in the midst of their grief, sorrow and loss will require courage and resolve.  I have been an organ donor since I was able to make the choice at the age of 16.  I've always wanted my viable organs to go to a needy person rather than into the ground upon my death - but also now realize the complexity that this decision creates for loved ones.  Pray for a donor and family who can make this sacrificial choice.

Also, pray for us to make the most of each day we have together.  We have been given a gift in that we know we have to live purposefully, in the moment, taking nothing for granted, focusing on the majors. Life together is truly a precious gift, not guaranteed or assured.

We pray that the blessing of your offerings for us will be returned to you 10 fold.  We are grateful for your influence and presence in our lives - thank you for supporting us with your kindness and generosity!

Great family times at Disney World!

Sunday, January 19, 2014

New Heart Needed

Inspired to return to this! 
We are so incredibly grateful for the outpouring of love, prayers and support for our family this week! Many of you know that Mark has had a serious heart condition for the last 7 years.  He has managed his illness so well with his determination, a Medtronic pacemaker/defibrillator, staying active, responding well to his medication and even acing his annual stress tests.  He took a sharp turn for the worst over the last 3 weeks and was admitted to the Cardiac ICU at Abbott Northwestern Heart Hospital in Minneapolis on Tuesday. They are doing all they can to stabilize his heart and are also rather quickly conducting a full heart transplant evaluation.

Our St Brendan to look forward to!
The reality continues to unfold each day.  We found out that he will not be able to return home without a new heart or an implanted VAD (ventricular assist device) which is a temporary 'bridge to transplant' and also requires open heart surgery. Urgently...Mark needs a new heart.

He's been told by every Cardiologist so far that he's a 'perfect candidate' because he is otherwise very healthy, fit and young (53) plus he doesn't have any other complications typical of heart failure - diabetes, cholesterol troubles, obesity, etc.  We met one of the surgeons (Dr. Louis Louis - no joke) and he told us because of Mark's O positive blood type (most common) and his weight (I've got at least 20 pounds on him) that 'you're gonna wait'. There's no way to predict a timeframe but we are mentally and emotionally preparing for a long haul.

We have been overwhelmed by the prayers that have been offered for Mark and our family. You have no idea how sustaining, encouraging and life-giving this is and we are incredibly grateful. When you think of Mark and are prompted to pray for him - please pray that his heart can hang on until a new heart becomes available.  Also, for his spirits and resolve to remain positive and steadfast.  You know Mark is high-energy and being confined to the ICU (and on a very bland low sodium diet) for an extended time is going to be challenging for him.  Pray for Paige and Reilly - they were so young when he was first diagnosed that we shielded them from the severity of his condition.  Plus, he did so well for 7 years that it has been a shock for them to realize he's not coming home anytime soon and that its very serious.
Mark as 'Floyd Henning' at Young Life's Frontier Ranch

It is a humbling place to be...desperate and waiting for a new heart for our Mark when it means that someone will have died and the heartbreaking grief their family will experience. Please pray for this donor and their family - that in the midst of their sadness and loss that they will find comfort in the amazing generosity of their gift. Courage knowing that the heart of their loved one will live on in this life-saving sacrifice for Mark.  The gratitude in advance that our family feels at just the thought of this is so emotional and humbling.

May you each be blessed in the love and prayers you offer for us!  We are also thankful for all the offers for food, visits and help - we'll take you up on it all and will eat anything!  Your fellowship and friendship give us strength and encouragement for another day in this journey. Please stay in it with us!

Free Guinness to all of our friends and family when this is all over! Cheers!