Friday, April 10, 2009

Clinic Update & Concert Story

My bi-monthly clinic concluded that my health is stable. Isn’t it nice to be told your clinically stable? I have more color in my face. I’m producing more red blood cells. (This could explain my leaning toward college blue BYU all of these years.) On Tuesday, I will undergo a heart cath or cardiac catheterization.



My fellow cardiac pal Grant
We continue to get feedback from the concert and are hearing wonderful stories about people who attended the show. My wife and I are still humbled by the outpouring of love and support!

This came from Kyle & Alli, the parents of my fellow cardiac pal Grant, who is recovering from some challenging surgery.

Last night, we had another huge blessing. We have wanted to attend a benefit concert for Paul Cardall (an musician who has a similar heart defect to Grant and who is waiting for his heart transplant), but we were unsure of where life would take us and so we did not buy tickets.

Yesterday, after we decided we trusted our nurses for the day and we knew our night nurse, we decided we could attempt our first real outing away from the hospital! To our dismay, tickets were sold out. We started trying to find some tickets and just after posting and emailing a few people, someone came on the intercom here and announced that they had tickets for the concert that they were not using that they wanted to donate to a family here on the floor. What a fast answer to a simple hopeful prayer! We claimed the tickets and were able to go with a few friends last night.

What a wonderful concert it was. I had major anxiety leaving Grant for so long, but it was good to be there. We met many heart families who we had previously known only through the world of blogs and thoroughly enjoyed the entertainment. Paul was able to stand with his family and thank those in attendance for their support and it was wonderful to see him, though weak, still full of hope.

There was a beautiful tribute to Gracie Gledhill and recognition of the many other families with "cardiac kids" and the whole heart community was there to embrace another.
We spoke with Tom and Michele Gledhill right before the concert and I was so glad for their family to continue to see little Gracie living on and touching lives just as each of these sweet angel babies do to all who know them and their lives.

I loved being there, but I was glad to be back with my sweet baby.
” - grantmeaheart.blogspot.com

There are a lot of cardiac kids who are in need of help and there are mother's with empty arms who need our prayers. And when you retire this evening remember them and don't forget to say one for Grant and his family.

19 comments:

  1. Go Utes! Couldn't resist.

    My prayers are still with you. I've owned a cd of yours since you performed for the South Salt Lake Chamber of Commerce about a hundred or so years ago. You sold me the cd after the performance. I've been a fan since.

    Have a wonderful day!

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  2. Thank you Paul. This was a nice surprise to read tonight. Grant can use all of the support he can get and we are grateful to friends like you guys. Feel free to stop by on Tuesday before the cath....will they keep you overnight for recovery? Our thoughts and prayers will be with you guys and we are excited to hear that you are clinically stable! Stable is always good news. Keep it coming!

    Love,

    Kyle, Alli, and baby Grant

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  3. Good luck on Tuesday and thank you for sharing little Grants story with everyone. I could not sleep last night worrying about this little fella. I will say a rosary tonight for both of you.
    Stay strong!

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  4. I must say you are quite the high tech blogger with all your cool videos! I am glad your health is stable. Good luck on Tuesday, we will be thinking of you.

    Michele
    Gracie's mom

    p.s. Go BLUE!! :)

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  5. Many thoughts and prayers are with you....even from those people (like me) who have never met u.
    I am so touched by your courage...and spirit...and your thoughtfulness for all the "cardiac kids" :)
    Good luck with all of your upcoming surgeries! Thankyou!!!

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  6. It must be a CHD thing, Paul! I have Tricuspid Atresia also, and I went to Charleston Southern University here in South Carolina. We're the Buccaneers, and we are BLUE and Gold! :)

    It is great to hear that the concert went well! All your friends over at Adventures of a Funky Heart! are keeping you in our thoughts.

    Steve (The Funky Heart)

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  7. Hello Bro. Cardall
    My name is Lauren Holbrook, and I am a sixteen year old living in the Chicago area. I am also a member of the Church and enjoy accompanying on the piano. I really wanted to go to your Living for Eden concert, but I am about 1200 miles away and plane tickets are expensive.
    I have been struggling with heart problems all of my life as well. I was born with Kawasaki disease which created aneursyms (I don't think I spelled that right) throughout my entire body. The doctors weren't able to catch it quickly enough, so it effected my heart. We were living in Biose at the time, but I eventually became so sick that the doctors told us to fly down to Salt Lake to await a heart transplant at PCMC. I was eighteen months old when I had this first heart transplant.
    Since then I've had two more heart transplants - my second was in February of 2005 in New York City and my third was in November of 2007 here in Chicago. I obviously remember these a little more clearly.
    My second was needed because of coronary artery disease and sudden massive heart failure. I remember it very clearly - we walked into the doctor's office for a normal check up. I felt perfectly fine, but my heart was in failure, so they admitted me. I don't remember anything past the second or third day that I was admitted.
    My third transplant was a complete miracle - they all are but this one was pretty amazing. I had had stents for a long time, and the doctors figured they couldn't keep doing that, so they suggested that I be listed for transplantation as a status 2. About a month later, we got a call around midnight saying they had found an absolute perfect match. You probably know that to get a heart as a status 2 is pretty remarkable since there are so many people ahead of you in ICU. When they actually went in, the surgeon told my mom that he had never seen such a sick heart. I was getting only about 30 percent blood flow. I have had no heart problems since that transplant, though there have been plenty of others.
    Throughout my experiences, I have found that Jesus Christ is with us every step of the way. He knows our sufferings and exactly what we are going through. That is one major source of comfort I have found because there are very few kids my age who have had heart transplants, and I still have some to find in my area! I know that the Church is true. We wouldn't have been able to get through any of this without His church - I can't imagine going through this without the knowledge of the Plan of Salvation or the infinite sacrifice of Christ to the extent that we do. I love the Church and everything about it. I know that the scriptures are true, and seminary has been a wonderful start to my day as we have been studying Christ's life this year. I know that the prophet is inspired. I know that Christ will inspire each and every one of us if we ask Him. I know of the power of the priesthood. It is the power of God and if used with faith, it can have incredible healing powers. I have been healed before and I know I can be healed again. I know that Christ will always stand with me so long as I am faithful.
    Christ will help all of us get through the hard times. I pray often for you and your family. Your little girl is adorable! I hope you continue to stay healthy and follow your doctor's instructions (lots of transplant kids my age don't like to take meds). Keep smiling, be positive, and do whatever you can do. D&C 123:17.
    I hope I can meet you someday!
    Sincerely,
    Lauren Holbrook
    P.S. I strongly dislike caths - I have one coming up on Wednesday! At least I have a port - if you have to get IVs often, you should definitely ask about one!

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  8. Lauren...that made me cry.

    Paul...keep up the great work!

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  9. Lauren and Paul, you are both an inspiration! I just saw part of the concert on Gracies blog...words can't express the spirit and love I felt. Thank you!

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  10. Paul I read the most recent news article... It was awesome, and HUGE... Thanks again for being such a wonderful role model....

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  11. Good luck on Tuesdays heart cath, we'll be praying for you!

    Hugs,
    Mike
    IHH-VP

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  12. Paul, we just wanted to thank you for your wonderful music. Our little 1-month-old son passed away last November and we couldn't find anything better to use for his video than your "Primary Worship" CD.

    We are glad your health is stable. Good luck tomorrow.
    And THANK YOU for being a part of our lives.

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  13. Good luck tomorrow. We love you and will be thinking of you and praying for you!

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  14. I will be praying for you tomorrow!!!

    Please let us know how you're doing as soon as you can!!!

    God bless!

    Alyson

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  15. p.s. We are so glad that you are stable!!!!

    <3

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  16. Good luck tomorrow....think happy thoughts :)

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  17. Dearest Paul, Lynette and Eden,

    Our little family of five had the amazing opportunity to enjoy your benefit concert. My mother loved your music and played it often on Sundays. I asked her to buy me some of your piano music and now my children play it. You bring a special spirit to our home. That evening at the concert, when you played 'Grace' we were overcome with faith and hope that God will sustain and bless your family. With tears streaming down my cheeks I turned to look at my three children next to me, my 12 year old son had tears streaming down his cheeks as well. After, I asked him what he was feeling. He said this, 'My heart was swelling so much I thought it might burst, I wish I could give him my heart because I know it is strong.' My heart nearly burst as well with those words. You have truly touched so many. At every breakfast, lunch and dinner, my children pray that 'God will find a strong heart for Paul'... their innocent faith is inspiring for me. Our hearts, our faith and our love is with you today. Thank you for sharing your legacy with us. You have reminded me and helped me teach my children what the meaning of life and love is. Thank you! God bless you with strength and courage. We continue to share our Faith with you!

    Juli Riggs (Brannick, Tyler, Parker and Saskya Riggs)

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  18. Hi Paul. My name is Mindi Dixon. I am from South Ogden. I have been following your blog but have never commented. I have a sweet baby girl that has a CHD. She has Ebsteins anamoly, a small right ventricle (it may not even be used which would then make her a single ventricle patient) and a VSD. She was born the same day as baby Grant, March 20, of this year. We have become good friends with Kyle and Alli. The reason for me sending you this message is that I want to give back somehow. We have been soo blessed with Libbi. She has been a miracle to us. When she was born, we were told she would need an artery banding surgery right away, she didn't. We were sent home only after 5 days of being in the hospital. We were then told she was going to need the Glen mid April. She didn't. Day after day, week after week we see how blessed we are. Watching poor baby Grant and the other heart babies and their familes that live in the hospital makes me feel guilty. One day in the next few months i'm sure she will need the Glen but for now we are grateful. I have been wanting to get the word out about being an organ donor because i think alot of people don't really even think about it until they are touched by someone who needs an organ. I am in charge of the Enrichment in our ward and was wondering if you and your family would be interested in coming and talking about your story, and about becoming an organ donor. I know you must be crazy busy so if this is too much please don't feel obligated. I would want to make it a stake event, with husbands being invited. I also want to ask Michelle Gledhill to come and talk if she can. I will wait to hear from you before I ask her. You have touched my life and I know our stake would benefit from hearing you if you have time. I hope I can make a difference somehow, someway. If you have any other suggestions on what I can do, please give me ideas!

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  19. You can contact me by email mindidixon@msn.com or check out Libbi's blog, libbisblog.blogspot.com
    Thanks!

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