My doctors said my health is stable which is good since transplants are down 29% in the region. It's going to take some time. As long as I'm feeling some strength I don't mind waiting. But, when I don't feel good I'm hoping the surgery won't be too far off. Nevertheless, life is wonderful. My wife and daughter are angels and I love each day with them! My extended family is incredibly supportive and have sacrificed much in our behalf. I'm constantly in awe of the goodness of God and his rich blessings that pour down upon us.(Picture: My musician friend Josh Waldron checking in on me when I was at the hospital for several days in 2008.)
I should admit though that with all of the medications I'm taking, including my shots and internal IV, I get anxious. I have to stay busy even though I'm extremely tired and usually sitting around. You should know, for those of you at work, or trying to keep up with kids, there is no good television during the day (except for The Price is Right), and all the new movies Hollywood produces make me feel like I'm wasting precious time. So, I have found great happiness doing many other things. When I'm not being entertained by my beautiful 3 year old or enjoying conversation with my angel of a wife I am doing quite a bit of reading, listening to music or great speeches & sermons, answering e-mails, writing notes, running my small record label, and blogging, which I am now addicted too, having just created another blog http://hope4things.blogspot.com
I've been deeply inspired reading the autobiography "Heart to Heart" by one of my spiritual heroes Russell M. Nelson. He is a great leader and teacher in The Church of Jesus Christ of Latter-Day Saints. In his earlier life he was a heart surgeon. He’s world renown for his contribution in helping the team of interns and doctors create the first artificial heart lung machine (cardiopulmonary bypass) which makes open heart surgery possible. This machine made it possible for blood to bypass my heart in order for surgeons to remove endocarditis from me in 1986 and receive the Fontan procedure in 1987. This amazing machine will be a major part of my heart transplant and has saved millions of lives. In "Heart to Heart" there is a beautiful description of the body and how it works. He speaks about the heart and how powerful of an organ it is. Listen to Russell M. Nelson's description of a normal heart.
READ THE FULL TEXT
LISTEN TO THE ENTIRE SERMON
that is an amazing!
ReplyDeleteThanks for sharing your life and experiences. Your story and life is one of hope. What a beautiful family you have. I am a mom of a little guy awaiting his Fontan. Praying that you receive a new, wonderful heart.
ReplyDeleteWhat an inspiration you are! I have a little boy, who is also a single ventricle (HLHS) and I must say that reading through your blog brought tears of joy to my eyes. I don't often imagine my son as a man, I hope to see him grow to an adolescent. Seeing you makes me realize that I have good reason to have hopes & dreams for him as a man, husband & father. Thank you for sharing your story!!!
ReplyDeleteI am so inspired by reading your blog! Thank you for sharing this journey with us- it's always so encouraging to find adult CHD survivors. My daughter has Pulmonary Atresia/IVS and is a HRHS baby, post-Glenn. Your music is amazing and that little girl of yours is just precious. Sending prayers your way and thanks for the great information you provide for heart moms like me!
ReplyDeleteKatie (mom to Maddie)
http://allredbabygirl.blogspot.com
I just found your blog and I have been crying tears of joy as I read through much of it. As a mother to a child with CHD's at times I feel the despair yet after reading your thoughts I feel so much more hope. Your family is beautiful and I love seeing that you have lived such a normal life. I am glad that you are documenting your journey for others to follow. we share the same faith and it is so apparent of your strong testimony of the gospel. I admire you and your outlook on life.
ReplyDeleteI'd love to get a copy of that Heart to Heart...where can I get one?? The regular LDS book stores don't have it? If you get a chance, let me know at taylor.kimmie@gmail.com. Thanks so much. Glad you are hanging in there, Im sure it gets old at times!
ReplyDeleteI was just guided to your blog from another "heart mom". My son is 4, and has tricuspid atresia. How wonderful to see a grown family man with the same condition. You are a inspiration and I can only hope that your well-deserved heart comes very soon. Please check out our blog to meet our son...I'll be checking yours daily!
ReplyDeleteI am so glad I found your blog. It is so hopefull to see and adult living with a CHD, I wish hearts were as easy as kidney transplants. I want to find that book, it would very intersting to read. The heart really is an amazing organ, It just boggles my mind my sweet Kylie was born with only 1/2 of it. Small world, my friend posted on her blog how for Vanentines her hubby got a CD of a very great artist. guess who? You. She had no idea you are one of our heart friends. Its too bad we have to know each other this way, but I have met some really amazing families. I pray for you and your family every day. Glad you are doing so well. Do you get tired allot? I like I can ask you this and you can reply other than looking at my sweet baby wondering why she is tired all of the time.
ReplyDeletehi paul-i have been following your blog for several months and think and pray for you constantly.i have a 10 yr old daughter with dextracardia/hetertaxy syndrome consisting of single ventricle and an arm list of other cardiac defects-8 open heart surgeries,2 failed fontans and still going strong.your are an inspiration and your playlist is awesome!
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