Columbus Dispatch Article

The Columbus Dispatch wrote an article on our journey. We are really proud of OSU for the excellent care I have received and are so thankful they are so good at what they do. We are also so thankful for our family and friends that have made this time a growing and learning experience instead of a debilitating event. You can find the article at: www.dispatch.com/live/content/local_news/stories/2010/08/30/womans-heart-revival-an-unexplained-gift.html?sid=101

LVAD Explantation Surgery Set (guest post from Ray)

It's official - Missy's surgery is set for Thursday, September 9, and she'll be admitted on Wednesday, September 8. We're not sure of times yet, but we were told that (if all goes well and to plan) she'll be the only procedure that day.

See her previous posts for recaps of our journey thus far. We've got a ways to go (and a difficult surgery to get through), so your thoughts and prayers will be as important as ever. We're certainly not looking forward to the surgery, but we're definitely looking forward to the additional opportunities we'll have with an LVAD-less life!

Be sure to check back for updates the day of and the days following the surgery. I'll also post progress notes on both of our Facebook accounts, so feel free to add us as friends to keep in touch.

To Be or Not To Be

The first day we came home from the hospital with the LVAD, I remember feeling sheer terror that my life was now dependent on a mechanical device. We took hours setting up all the equipment and getting acquainted with each device. We read every manual for the machines and made sure we were comfortable with operating them.

Each night I would plug my pump into the unit that plugs into the wall and lay there watching the numbers that were telling how my heart and pump were performing. We would literally watch them for hours.

Whenever I would leave the house, Ray insisted I carry at least two sets of batteries (and they were heavy) because he was nervous that I would be stranded somewhere and need them to survive.

After a few months though, the fear began to subside and my confidence in my LVAD grew. I no longer worried that the pump might quit working or have a problem. It became routine to just throw my stuff in bags and get on my way. And although I still enjoy watching my heart pump numbers, it is more quick glances instead of constant monitoring.

Now the idea of taking out this machine that I have become so familiar with is a little terrifying. It has become my constant companion. My friend that has assisted my heart in its functioning and given me confidence that I can do normal daily activities. And I have begun trying to believe that my heart will be fine without it. But there's that little bit of doubt that is apprehensive about taking away the device that has given me the ability to live a healthy life.

Don't get me wrong. I have confidence in my doctors, who are very comfortable that my heart will do well on its own. And I have seen my testing results with my pump turned off, and they look good. Actually, I think it is just a psychological road block I am trying to overcome. And suddenly I feel like a kid having to give up her blankie. LOL!

Surgeon's Call

Tonight my cardiothorasic surgeon called me on my cell. How comforting to be able to talk to the man who will hold my fate in his hands... and also my heart. LOL! He called to intricately discuss the options of the surgery. After a very informative discussion with him, we have decided to have the pump taken out the same way it went in... and that means a hard surgery, lots of pain, and a long recovery time. I guess I had gotten my hopes up a little about some different options, but I trust that my surgeon is extremely skilled and is very concerned about my well being. He answered all my questions and was quite willing to entertain thoughts and anxieties I needed to discuss with him.

He also asked when I would like him to schedule the surgery (imagine that, a million dollar surgeon asking when I would be available). LOL! I told him right after Labor Day so that I can throw my little sister a shower and spend time with Ray's family, whom I have missed several important functions with over the last year.

I also discussed some concerns over my medication with him. I have been gaining about 3 pounds a month for the last 7 months. Also, I feel extremely tired ALL the time (even though I am getting 9 hours of sleep a night and even some naps now and then). Anyway, I have read reviews on my medication, Coreg, and several other patients said the drug caused significant weight gain and made them so tired they couldn't function or think clearly. After discussing this with my doctor, he told me that the reason I am on an abnormally high dose is because the drug works as a re-structuring of my heart and that the higher amount I can tolerate, the better the chance that my heart function will increase. I was very encouraged to hear this news. I was even more encouraged to hear him tell me that after the pump comes out, he will re-examine my dosage and reduce it based on my heart's condition. I guess just knowing that I won't feel this way for too much longer was encouraging. I am learning to deal with my illness each day, but the thought of getting better is sheer excitement.

The phone call put Ray and I into a panic, though. It made it very real and very close for us. It is tough to know we will have to endure another open-heart surgery, but we are trying to be brave. The verse that has been coming to mind this week is, "Take heart, for in this world you will have many troubles, but I have overcome the world." Please remember us in your thoughts and prayers.

Happy Anniversary!

Today marks the one year anniversary of the implantation of my LVAD heart pump. I find it only fitting that I spent the day doing research on the explantation of my device. I found an article from a doctor in Vancouver that had a 19 year old explanted. His article discussed intricately the surgery and recovery. It was very difficult to visualize the unique steps of the surgery and that I will go from being healthy and walking several miles a day, to constant pain for a while.

Today has been wrought with emotions of fear and helplessness. Fear of having the surgery; and fear of not having the surgery. Fear of returning to work; and fear of not returning to work. Fear of not having children; and fear of having them. :-)

Yesterday I spent an incredible day with my sisters and nieces and nephews. We had such a nice time walking through the park, exploring bakeries and all their goodies, doing crafts, and watching the Velveteen Rabbit. My sisters both opened up in very personal ways to discuss with me their feelings on children. My younger sister is about to have her first and is a little apprehensive. My older sister is reveling in how quickly time passes and her children grow. It was a great gift that they loved me enough to talk to me so openly from their hearts and I cannot begin to express my respect and love for them. But it stirred a deep longing in my heart to experience the bond between mother and child. And so quickly I went from being thankful for such a memorable day with loved ones to wishing for what we don't have. I am thankful that God has been reminding me today that I have been blessed with TONS of beautiful children all through my life. Everywhere we go, our friends and family have little ones that are such a blessing to me. So, if you are one of those parents that gets afraid that your children are a distraction to those who don't have little ones... you might be surprised to know what an upliftment they can be for others who don't have that bond in their lives.

For those wondering about my surgery, my surgeon did come back from vacation this week but hasn't reviewed my case. Hopefully I will be hearing from him soon and we can discuss our plan of action. Until then, Ray and I are doing our best to be brave and enjoy each second we have together.

Testing Success... Pump to be Explanted

The testing went better than we had anticipated today. My echocardiagram (ultrasound of my heart) showed my heart to be functioning at 50% (normal hearts are at 60%) with my heart pump off. Then, I had a stress test where I walked on a treadmill and breathed into a mask that measured my oxygen usage. My heart responded exactly as it should have and all the doctors were pleased. (Of course, it was tough and exhausting, but exciting all at the same time.)

So, my surgeon is on vacation for the next few weeks so we will have to wait for him to return before any definite plans are made; however, I think it is safe to assume that the pump will be coming out!! YEAH! (But not yeah for the surgery I will have to have to get the pump out.)

My cardiologist still thinks I will have a mild case of heart failure after the pump comes out, but that I may live several several years before it gets to end-stage again. And she was pretty certain that eventually I will still need a transplant... but none of us know the plans God has for us...

I cannot say thank you enough for all of your thoughts and prayers. Several of my family and friends told me today that they were awake last night or today praying for me. I am certain that it was all of the prayers that have brought me to the place I am today. Thank you for being a part of this miracle with me. And please join me in celebrating!

Pittsburgh

This weekend, Ray and I took our first overnight trip since before I got sick in March 2009. It was such a wonderful feeling to conquer (or at least subdue) our fears long enough to enjoy a short vacation.

We headed to Pittsburgh. It was one of those days that we felt like God has given to us as a present... the weather was perfect, the drive was beautiful, and we had a perfect time. We had a duck tour (the truck drove on land and water), stayed in a Hilton right on the rivers' edge (with a breathtaking view), visited the Andy Warhol Museum (it was just weird), saw "Hairspray"(it was a local company but it was one of the best shows we have seen, went up the incline in Pittsburgh (just for the view, because there was nothing else up there), went to the strip district where there was an outdoor market that lasted for several several blocks (visited lots of strange stores and a butcher shop that gave me the creeps), and had meals at the most wonderful restaurants (banana chocolate chip crepe pancakes... is there any more I can say?). It was an incredible trip.

It was so nice for two days to forget that I was ill or that our last year has been so hard. We made some lifetime memories. Although we walked over 12 miles in the two days, it was well worth the effort to explore the area. What an amazing trip.

Tomorrow is my big testing day. I would really appreciate all of your thoughts and prayers. Ray will update the blog once we know something. Thanks again for all of your encouragement.