Pictures: This is my heart from a CT ScanI went to the transplant clinic today to meet with my transplant doctor Melanie Everitt and my adult congenital heart doctor Angela Yetman. I also ran into one of my thoracic surgeons, Dr. Peter Kouretas. They are a wonderful team and I enjoy seeing them. The highlight of the clinic for my wife and me was interacting with a few of the “heart moms” and their beautiful children who’ve been transplanted. We saw little Daxton, pretty Kaidence, and baby Benjamin.
I went home feeling extremely confident about the “actual” transplant surgery. Angela Yetman, MD said, “Transplants are one of the easier forms of heart surgery although my anatomy will make it a little more challenging.” It’s the recovery that will be the most difficult time, according to doctors.
I remember Dr. Kouretas’ colleague Dr. Hawkins assure me that there is an 80% chance they’ll need to re-open my chest to get rid of excess fluid. I say, “just put a zipper on there and go to town.”Adults who’ve had the Fontan procedure like me do in fact recover much slower. I could be in the hospital 2-3 months. Nobody really knows. Again, I say, “bring me some hospital Jello through a straw.” As long as I get an opportunity to go home and enjoy my little girl and beautiful wife I am ready to run that marathon until I reach that finish no matter how hard it will be.
Pictures (this is my huge heart. the right atrium is 3.94 inches in diameter. it looks like a giant cocoon with one ugly caterpillar waiting to fly away. CLICK ON THEM TO ENLARGE)
It was so fun to talk with you guys. We should do dinner sometime. My girls would love to play with your little one. I was able to switch Daxton's cath lab so we will be able to come to the concert. We are super excited. Hang in there. Sending prayers your way!
ReplyDeleteI'm still praying for you and your beautiful family!!!!
ReplyDeletep.s. Your music is so beautiful!!! I have a few of your songs on my profile!! Even my 6 year old comments on how pretty they are!!
God bless!!
Alyson - mommy to Evan and Avery (severe PPHN)
Wow - that is incredible to see!
ReplyDeleteI will pray for you!!
ReplyDeleteI have been searching for the closing song on "Prince Caspian" everywhere... I didn't know who the artist was.. now I see it on your player and I'm going to steal it :) thanks!
Paul,
ReplyDeleteit is so neat that you have gotten to know the :heart mommies" of these amazing transplant kiddos. Theya re the best!! I'm sure it must give you confidence about your transplant. We've been spreading the word about the concert as much as possible. Take Care. I hope today is a good one!
Melissa Andrew - IHH
I too think that was great that you were able to meet up with some of the transplant kids and members of IHH. Just like you they are wonderful and have an amazing story.
ReplyDeleteI hope and pray that you will get your heart will come very soon!
I too have been spreading the news concerning the concert and look forward to being in attendance to honor you and your family.
Heart Hugs,
Carolyn Quigley
President, IHH
You are such an inspiration to so many. One of the many reasons your life has been preserved so you can be a source of hope to these other heart patients and parents.
ReplyDeleteThat is fascinating to see the pictures of your heart. I didn't know much of anything about how the heart worked before I had Annika, but now it really is so interesting. It is so complex--it amazes me what surgeons can do.
ReplyDeleteI love "Gracie's Theme." That was such a wonderful gift to her family. I'm sure that must mean so much to them.
Your CT films are impressive young man! I think it is great that you have the opportunity to meet with so many other families who have experienced similar situations.
ReplyDeleteI work with the heart team at Intermountain Medical and have experienced the joy and successes of numerous heart transplants in my short time with the team. I wish you the best of luck with the transplant, the recovery, and the years to come!!! My prayers are with you and with your family!!
Lots of love!
Oh how I wish my insurance would cover a transplant at primary childrens... I would feel "at home". Instead, we'll be in LA, strangers really... not knowing a soul. Only Heavenly Father knows what's in store for Owen.
ReplyDeleteLooking at the picture of your heart... it looks grossly like Owen's enlarged Atrium.
We pray for you heart all the time! I've been meaning to ask you... did you have any antibody issues?? Owen's are crazy sensitized and I was wondering if you have that same issue?!
Andrea
I am loving the pictures of your heart! It is so interesting to see a visual on what you have described so well. How great to have met up with some more wonderful heart families too.
ReplyDeletePaul, now that we know you inside and out ;) our prayers will be more constant as you get closer to getting a new healthy heart and the life you deserve.
ReplyDelete{Bear Hug}
When I look at the pictures of your heart it reminds me how similar your medical situation is to Scott's. When I first met the surgeon, after the transplant, he said Scott's heart was "enormous" and he doesn't exagerate! The new heart in Scott now is doing so well! The road has been tough but I'm so glad that the road continues on! Scott and I pray for you and your family. I've been reading your posts to Scott and he feels a strong connection to you.
ReplyDeletePaul-
ReplyDeleteI think you are an inspiration to these heart famlies.
Surely, Im sure they feel your strength and thrive on that...and in return, you gain the same blessing.
We are thinking of you....praying for you....and know that the Lord will bless your family.
Hugs-
Paul,
ReplyDeleteI am a student at BYU studying nursing. Long story short, I found your blog from Gracie Gledhill's, and I found Gracie's from a family in our ward. ANYWAYS, just wanted to let you know how inspiring and how much I admire your fighting and optimistic spirit. Last night I was quite discouraged with school and such, and I decided to do a little blogging. I just so happened to run into yours, and after reading until 2 in the morning, I was humbled and amazed by your optimism. You have made a difference in my life, as I'm sure many others. You will be in my prayers.
-Whitney Nielsen
and one more thing--your music is GREAT to study to :)
ReplyDeleteI watched ER on Thursday night and thought so much about you and all of the heart babies. The little girl that said she had HLHS and had all of the procedures that you talk about. I know that TV is so different from real life but I am inspired by you and and all of those suffering with you.
ReplyDeletePaul,
ReplyDeleteYou are amazing! I don't even know what else to say! You are an inspiration to all these 'heart patients'...including my little nephew, Isaac Ward! You and your sweet Lynnette and Eden are always in our thoughts and prayers! We are excited about this upcoming concert...a bunch of us in my neighborhood are planning on coming! Take Care and I hope to see you there!
You are a super amazing person and I am still praying for you and your family!!!!
ReplyDeleteThe other day, I had my blog page open and your music was playing.....My husband asked me what I was listening to and I quickly told him all about you and showed him your page....He was deeply moved by your story and music.... He's a man of few words and even though he did't really say too much, you could hear and feel his emotions...
Your blog and music have touched the lives of so many and I am grateful for your life story that you are sharing with all of us...... You have taught us so much......
Does that make sense??? :0) Sorry it's 11:25pm.....I'm not too good at being articulate at this time :0)
Blessings,
Alyson
http://wellensfamily.blogspot.com
Wow, that is one huge right atrium! You are quite the high tech blogger now with that picture, very cool! Maybe we can bring you your favorite jello when we come to visit! :)
ReplyDeleteHey Paul, it's Ben's mom. It really was so great for us to meet you and your sweet wife last week. Before I knew we had so much in common I had been a great admirer of your work professionally, but now it is wonderful to have met you both and see your faith and great strength. As much as I looked up to you before it is small potatoes to now. You are such an inspiration to so many and it was great to see you staying so positive. The best advice I've ever heard was from my mom, "Keep Smiling!" I so wish my hubby and I could attend your concert (we can't leave Ben quite yet though), we'll keep spreading the word though and hope that it is a fabulous success. Keep postin'. We'll keep praying'. Ü
ReplyDeleteOh, I forgot to mention, I get how totally crazy your CT looks (we're getting pretty good at reading these too!). That's a huge atrium! Ben's left looked like that. It turned out to be another one of his miracles because the heart he recieved wouldn't have fit as well if his heart hadn't gotten so big and had taken so much room in his chest. What I mean is the whole time we were stressing and worrying that he was getting sicker and things were worse, he really was part of a plan from our Father in Heaven. Things had to happen in a certain order so he could get his heart at just the right time for him. It made us realize that all along our prayers were being answered, it just wasn't the best time for Ben, and we didn't know it yet. Just wanted you to know that so you don't get discouraged. Hang in there. Ü
ReplyDeletePaul, I'm sure you remember the benefit concert you did in Hurricane, Utah for the family who lost their home to a fire. There were a lot of boys there from Cross Creek home for boys, hardened and very troubled boys. Throughout the concert I watched some of them break down and cry. Not just wiping away a tear here or there, real crying. I always knew the effect of music on the soul, I could see it right in front of me. You have an amazing gift and talent, and have shared it with us despite all your suffering. Heavenly Father is using you to share his love and light with the world, THANK YOU! Our family will keep you in our prayers.
ReplyDeleteYou are an inspiration. We go in for our Fontan tomorrow. A matter of hours actually... Thank you for sharing your story, and from one half-heart family to another, we wish you the best.
ReplyDeleteLove,
Josh, Lisa and Jack Trent (HLHS)