This is a rollercoaster and I used to love rollercoasters, but this one sucks
So much and so little has happened since I wrote last month.
We have lost hope and found it again and lost it and found it. It is a circle of uncertainty. Our days go from stressful to sad to very very funny and I wonder how we can exist at such heightened levels of everything for long.
Jeff has a really young cardiologist. He is really great but also very honest. "This totally sucks for you," he told us on our first post hospital visit. It was during that first visit that I realized that not only does this suck, but that Jeff is not going to get better. Meds and diet will keep him stable, but can not fix him. All that we can hope for is a long period of calm during which Jeff will seem like himself, but very tired. As March arrives, Jeff is preparing to get a defibulator installed. It will shock his heart back to life in the event that it just stops. This is scary and I have to say that we worry more that it will back fire and shock him by accident.
We have read many many stories of young people going through what Jeff has. Many people with cardiomyopathy can live 10 years like this before they need a heart transplant. Most of what we have read are stories of people far sicker than Jeff. This gives us some comfort, but in the end, while it is Jeff's heart that isn't working properly, it is his confidence that is truly damaged. He is not confident that he actually has a future. What a difficult place to be.
And so we wait. We gather up more "data points" as Jeff's awesome doctor says, until we have a complete picture of our path. The end result is heart transplant, words we couldn't even say a month ago, but something that I think we are preparing for.
So my report is that I really have nothing to report. We are existing on this rollercoaster. We are trying to deal.
Comments
Hang in there Tina, you are an amazing lady. Our thoughts and prayers are with you all.
Posted by: Pagan Moon | March 6, 2009 6:32 AM
Holy crap. I am so sorry you guys have to go through all this. My best thoughts for all of you.
Posted by: Jessica | March 6, 2009 7:34 AM
I am stunned. And I want to know if I can do anything. I'll be thinking of you guys, lots.
Remember: medicine is miraculous and all that crap, but it's all about averages. Jeff is way above average. He's got to start thinking that way. Many hugs.
Posted by: eileen | March 6, 2009 8:04 PM
I am so sorry to hear your news. You are an amazing couple and will get through this somehow. You are loved and thought about all around the world. I hope this is some comfort to you.
xx
Posted by: sally trombone | March 7, 2009 3:45 AM
know that i'm sending my thoughts to you and yours! enjoy the sun, when it shines.
Posted by: kimberlina | March 7, 2009 9:32 PM
Thank you for the update.... What a hard path to go down, but it sounds like you have a doc that will walk it with you. I'll be thinking of you all...
Posted by: Jen | March 10, 2009 8:45 AM
I don't know what to say other than that I am sorry and wish you both the very best.
Posted by: Alison Whittington | March 10, 2009 3:49 PM
oh tina...i am so sorry to read your last two updates. i used to follow your blog religiously but had not been here in some time.
you, jeff and the girls will be in my thoughts.
Posted by: kelly | March 14, 2009 9:09 PM
I stumbled onto your blog - can't remember the clicks that got me her but I got her for a reason. Don't know if it was for me or for you but I wanted to tell you that my mom lives with me and with congestive heart failure. She's more than twice Jeff's age but I am constantly watching for signs that I should leap into action and call the doc - take her to the ER - remind her to put her feet up - or that I used too much salt in something or I didn't stop her from eating those crackers. It's a lot to carry around. Sometimes I have to set it down - hope you do too.
Posted by: Sharon Snow | March 17, 2009 2:08 PM
i am so very sorry to hear this. i just stumbled across this from the Etsy email: "Tell Your Story"...but I recognized the name "Tina Seamonster" as the first person to ever buy something from my Etsy shop. I believe it was a Woodsy Birdy Tote. I was so grateful. Anyhow, I will send lots of good energy your way and i genuinely hope things only go up from here...Good Luck, Tina Seamonster.
Posted by: jessica | March 17, 2009 5:56 PM
Hi,
I had visit your etsy store several times, I think it's great.
I am sorry to hear you are in difficult trip of life.
So, I wish to offer my help too, I like to cook and have a lot of easy healthy recipes and tips, if you have any doubts and wish advice just write me.
Best wishes.
Posted by: Nahuatl Vargas | March 19, 2009 8:13 PM
Like some others, I stumbled across your blog through etsy several months ago and read about your husbands health issues. I have trouble thinking that this was a mistake. My prayer is that you will read this and consider every word.
There is not a doubt in my mind that there is a higher being...a creator of all. A God that watches over us and knows every detail of our heart, soul, and mind. One who loves and cares about our every thought and action, who has control of every situation and event that takes place.
I have no idea what your thoughts are on God but I know that he loves and cares for YOU and your family. There is no doubt in my mind that our God, our creator sent me to your site to witness to you about his love. He is the one we should always turn to with every issue we endure; whether it be happy or sad, joyous or painful, exciting or scary. The Lord cares about it all. God has provided a comfort for us. He sent his son, a Savior, to suffer and die on the cross; to take the burden of our sins, to be buried in a tomb and be resurrected to live in Heaven for eternity. God did this because he first loved us. God wants us to except the Savior as our own so that we too can live in eternity with Him.
When we learn to love the Lord and give our heart, soul, and mind to Him we get to keep that comforter close by and always know that He is there to take care of our every need. He desires for us to use Him in every roller coaster of life. My prayer is that you and your family will find this comforter and learn to live on this roller coaster and not just merely exist on and deal with it.
Honestly Praying for you all,
Bridget
Posted by: Bridget | March 23, 2009 11:45 AM