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.

Mark

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

1 hour ago

Florida

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!

Mark

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! 

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!