Jennifer turned 33 on August 7 and was called home to glory on August 20, 2018. She wrote this in her blog: “This is a journey of my story.  From cancer at age three, through heart disease, a stroke, more cancer, and every little ailment in between. From the tears and heartache to the laughter of looking back. I’m not writing my story for sympathy.  Until now, most people had no idea I even experienced one of these things.  My goal is to let others know that they are not alone and to never give up their faith.  God alone is the reason I am still here.

Today is my 33rd birthday.  I always thought 33 would be different.  I would be healthy, energetic, living a normal life.  But here I am, feeling 83 some days.  Surgery was not good for me.  I believe it caused more problems than it fixed.  My doctors keep saying I will improve over time.  It’s been 8 weeks. There has been no improvement.  The reason I did the surgery was to stop the bloating.

Did it stop?  No.  I still have it.  Now I have heart failure in BOTH sides of my heart, my EF is lower than it was before surgery, I have zero energy 5 out of 7 days of the week, it’s hard to walk being so bloated, I’ve lost all my muscle mass due to not doing anything for 8 weeks, I don’t really have an appetite, everything still tastes sweet to me which makes me gag, I’m still not sleeping.. some days I feel worse than my 90 year old grandpa.

I’m frustrated.  Beyond frustrated.  I hate going to doctor appointments as they rarely have anything good to say.  Tell me something positive.  I’m negative enough for the world.  I don’t need you to be negative too.  My heart failure doctor at Mayo wants me to do a stress test and cath to see how bad my failure is and if I need a heart transplant.

Look doc.. I’ve done nothing for 8 weeks. You really think I’m going to do well on a stress test right now?  You’re out of your mind.  My tricuspid valve repair kicked my butt more so that I ever thought possible.  You really want me to think about a transplant?  Pretty sure that would kill me.

What is my next step?  I’m not sure.  But I am looking into stem cells.  I went through an evaluation about 3 years for a stem cell trial, but their stipulations were so strict that I wasn’t sick enough and my heart walls were considered not think enough.  Oh FDA.. screwing things up again.  However, there are now stem cell centers in Texas since Texas passed the right to try law.  I know it is expensive, but I’m willing to try before ever considering a transplant.  More research has to be done.

I went to Starbucks this morning for my free birthday drink. The barista was so chipper it made me sick.  Leaving I said to myself in the car, “How can someone be so freaking happy all the time?? Oh, that’s right.  She sleeps, isn’t bloated, didn’t have heart surgery at 32, and lives a NORMAL life.”  I’m jealous of people living lives of normalcy.  I feel horrible that I feel this way, but I do.

Yesterday, while reading my Bible plan for the day, I came to Psalm 16:

God will not abandon us!  Just because we are believers does not mean we won’t experience trouble.  God is with us THROUGH that trouble.

I know He is with me.  I haven’t given up faith.

Happy 33rd birthday, you 83 year old!

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