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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!




10 comments:

  1. Dearest Jami,

    Your words uplift our spirits! We are all so indebted to you for embracing us as we pray for Mark, you, Paige, Reilly, and your entire family and this beautiful community of friends that surrounds you and Mark. So many beautiful lessons in your message. We hold you, Mark, and the girls in our prayers . . . you inspire each of us to live our lives with passion and purpose. . . the gift that Mark has always modeled.

    Sending my love,

    idahlynn

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    1. So great to hear from you, Idahlynn! You know we both love you so! We can't thank you enough for your prayers - they hold us up and give strength. Remembering some of the great times we had on Chair Academy trips and dinners here in MN!

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  2. Jami,

    I learned about Mark's illness through a prayer request from Jenny Moore. My husband has leukemia and just had his second bone marrow transplant in September. He is currently off work until his immune system can recover. Just some encouragement from a veteran of complicated medical situations. As you have seen, the prayers and support of your friends, family and strangers are what keep you going each day. Constantly tell yourself that God has a plan for Mark and for your family. When you meet with the doctors, leave your heart and mind open to anything they may say. Have no expectations. God will be there to process whatever news they give you. Also be prepared for doctors and staff telling you conflicting things. You will know who has the last word and best information. You are in my prayers as I follow you through your journey. Jan

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    1. Hi Jan: Thank you so much for your wisdom and encouragement! We hang on our doctors' words as you know! Our Cardiologist of 7 years is so beloved - he calls us at home after having to deliver difficult news to see how we are doing. You just don't expect that! He happened to be doing his 2 weeks/year hospital stint during the week Mark was admitted to the ICU so he was with us everyday. Such a blessing and 'serendipity' that were greatly encouraged by! Somehow difficult news comes easier delivered by him! Our transplant Cardiologist is very cautious and wonderful in her own way. The nurse in charge of transplant patients and who coordinates all the actual transplants is an angel from God - with compassion and empathy in her every expression, kindness in her every word! We have grown to love some of these people devoted to helping people heal and who stand in the gap with us in very emotionally charged health crises as our very lives hang in the balance of their expertise and care - WOW! They carry a huge responsibility in choosing a medical vocation! I actually taught a group of doctors on Thursday Appreciative Inquiry at the U of St Thomas Physicians Leadership College - what a privilege to try to give back and help them be better leaders in any small way that I could! I pray your husband's immune system is recovering! Can you think about the future yet or are you still living one day at a time?

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  3. Our God is an awesome God. Mark, as you and I have discussed many times - HE has answers beyond our understanding. Know that you are LOVED!

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    1. Thank you for sending your love, Rick! It is a life line for us everyday! So grateful!

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  4. So glad to hear Mark is home. I can't fathom the precarious space y'all are living in day to day. Continued prayers. Grace and peace.
    Kendall

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  5. We continue to pray!
    The Wilhelms

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  6. Continuing to pray and think positive thoughts.

    The Delahantys

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  7. Our church family and network of speakers are continuing to pray for the families. As the old sailors say: Hold Fast!

    Rick

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