Ray's Words of Wisdom

We had a wonderful holiday with friends and family. Cannot tell you how precious every moment becomes when you are constantly grateful for each minute.

Last night I was telling Ray that I was getting pretty light-headed at odd times during the evening (the medicine I am on makes me very dizzy when I stand up and some times even close to passing out; therefore, I have to get up from sitting or laying very slowly). Ray, being the worry wort that he is, was very concerned and instructed me, "If you stand up and feel dizzy, sit back down." LOL! What does he think I am going to do, jumping jacks?!?! LOL!

These words are matched only by the words of one of my old surgeons who, when I asked what to do when I thought I was going to pass out, told me, "Get as close to the ground as possible." LOL!

Merry Christmas to All!

This Christmas, I could not be more thankful to be healthy (relatively) and to be spending it with many people that I love... (not in the hospital goes without saying!) I have learned so much about trials and pains these past few years, but I have come to realize that everything is just for a season. Good or bad, all things will change at some point. So, while you are in the season, enjoy what you can, learn what you can, and be patient, all things change.

Like so many others, I don't have the answers to my illness or our struggles, but I know one thing. I know whom I have believed in and am persuaded that He is able to keep that which He delivered unto Him until that day. Meaning if we know where our trust lies and are willing to follow at any cost, He will see us through to a better tomorrow.

My prayer for each of you is that you are able to slow down this holiday and learn from the season you are in. Merry Christmas to you!!

Your Heart Beats to its Own Rhythm

Do you ever sit and listen to your heart beat? (I'm not sure if you don't have heart disease if you can hear your heart beat?) But when I lay down to go to sleep at night, not only do I sit and listen to my heart, but I can see my chest rise and fall (maybe because my heart is enlarged). Some times this is very comforting; however, most of the time it will do a little flip flop or hard beat. It's like in the scary movies where the music is comforting and relaxing and then the bad guy jumps out.

It's funny how I have now had this illness for over a year and a half and I still get shaken by little reminders from my heart. Anyone else have a problem like that where it just seems to keep coming back at you. I feel like I have to deal with my fear over and over and over and over again.

Although it hasn't been a quick lesson for me, I am slowly learning to not panic when my heart flip flops. To not stay stiff and still for an hour after I feel my heart flutter. To not pass up opportunities to go out and live when I am afraid because my heart is beating hard. Seems like an elementary lesson, but it is so hard to overcome fear.

This season has been a really wonderful one for Ray and I. We have had so much fun shopping with friends, having dinner with loved ones, taking my nieces to the nutcracker, making cookies with my mom (ok, she made them and I watched), playing wii with my dad and cousin, and visiting with lots of wonderful people. And to top it all of, I DON'T HAVE TO PLUG INTO THE WALL ANYMORE!! That's right, I am machine free! What a great Christmas blessing!!! Peace and love to you during this season.

Tis the Season

Tis the season... for shopping, parties, dinners, baking, wrapping, etc., etc. It makes me tired just thinking about it. But I love it!! Although this year has been so much more exhausting than usual. I find myself tired after just a little effort. This has been discouraging, but I am so glad to be out of the hospital!

My kidneys have healed and I am back on all my heart meds. I do have a "wound vac," which is a little machine that is helping to heal my incision site. It's a little annoying because it gurgles quite loud quite often (and sounds like my stomach is growling) and it always seems to happen at the most quiet moments. LOL! I should get it off in a little over a week. Yeah!

This week I started volunteering at a local health facility that offers reduced health care for people without insurance. I only worked a 3 hour shift, but was completely exhausted. Perhaps I started a little too ambitiously, so I am going to only do 2 hour shifts for a while. I was surprised at how little I was able to do without great effort. But I am choosing to look at it as a challenge to work myself back up to being able to work again. But truthfully, I was tired by the time I got out of the shower in the morning. LOL!

Anyway, I started this post to tell you that although this time of the year is always hustling and bustling, take time to slow down and love the life you are living. Remember that even if you give a bad gift, cook a terrible hors d'oeuvres, your cookies burn, your wrapping looks like a two year old did it, or your house looks like a tornado blew through, it will not matter if you don't have the people you love to share your holidays with. Take time to just spend time with them and not stress the small stuff. Because at any time, any one of us could be in the hospital and none of that will matter. (You know I am saying all of this because I needed to hear it too! LOL!)

MERRY CHRISTMAS!

Hardships

Yesterday in the service, our pastor made a statement that hit me like a ton of bricks. He stated that all the great apostles from the Bible suffered great hardships and that these trials taught them of their own inadequacies and their need for the Holy Spirit's leading in every area of their lives. He argued that they had learned the lesson that they could do nothing on their own without God's help.

This was very insightful to me. Probably the biggest change in my spiritual walk since I have become ill has been the constant reminder that although I can change my lifestyle to include a low sodium diet, a hearty walk each afternoon, constant monitoring of my fluid intake, blood pressure, weight, etc. I cannot control what happens to my body. Only God has that power. Although in my mind I have always known that, I am reminded of it every time my heart does a flip-flop, or flutter, or waiver. It is a constant reminder that this world is not my home and that I have no power in it, except what is granted to me through God's grace and mercy. This lesson has spilled over into all the other areas of my life and I am constantly reminded that all I can do in this life is to seek God's will and pray that He gives me a chance to make a difference in someone's life.

So, although I would never wish hardships on anyone, nor would I choose them for myself, I am thankful for the lessons that we learn from them and am hoping that maybe others can learn from my hardships and not have to face them themselves. :-)

Home Sweet Home

Well, last night we got to sleep 10 blissful hours in our own bed. (I think we were dead to the world until the phone woke us up this morning.) It is so wonderful to be home. Finally, I am able to rest and relax with no one sticking me, taking my blood pressure, assessing my health, etc.

I will still have to have home health come for the next three weeks or so to work on my wound vac while it heals, and I have a LOT of appointments at the hospital. But it is a small price to pay for the freedom of home!

Thank you all for your thoughts and prayers. Couldn't do it without all the wonderful people in my life!!

Still Waiting Patiently in Hospital

Well, it's Wednesday morning, and I am writing this from my hospital bed. It has turned into quite a long stay and I am feeling it. It started out as only a small surgery, but I should know better. Seems like when we think things are going to be relatively easy, it's then that our spirits get tested.

My kidneys are headed in the right direction, but we are still waiting on them to get better. In the meantime, all of my medications have changed because they were bad on my kidneys. The new medications have been giving me terrible headaches and nausea. It's been a long few weeks. But I am learning how to get through it. Hopefully soon my kidneys will perk up and I can get back on my old faithful medications. :-)

It's amazing to me how different life is in the hospital. There are so many hurting and struggling people here. I am so thankful that my eyes and heart have been open to the pain in people's lives. Hopefully that will help me be a better tool to be used to make their lives a little better.

Well, I would LOVE to see any of that would like to come for a visit. It makes the days just a little shorter. :-) We are anticipating being here several more days still... Thank you so much for all your thoughts and prayers.

Recovery Trials (from Ray)

In case some of you haven't heard, Missy's surgery went fine, but the days since have been difficult. It turns out that she didn't have an infection at all, but rather a granuloma (a pocket of white blood cells). Blood cultures take several days to grow anything, so her surgeon put her on two heavy duty antibiotics last Saturday. Sunday she expected to go to surgery, so she wasn't allowed to eat or drink all day (termed NPO) until about 6:00pm. Same thing on Monday, NPO until dinner.

Needless to say, her body did not like the lack of fluids. Her key kidney health measurement (creatinine) was 0.9 when she was admitted, but this afternoon it was nearly 5.0. Because of this high level, she's experiencing a lot of pain, so much so that she can't sleep comfortably (not that you really can in the hospital anyway).

Another trial she's faced has been the wound vac. That's right, she has a small vacuum hose connected to the surgery wound in order to aid healing and drainage. Today was her first dressing change. They encouraged her to pre-medicate, so she took not one, but two Percocets. Even with the narcotics on board, it proved to be a terribly excruciating experience.

To top it all off, she hasn't been taking her blood pressure medication (an ARB) because of its effects on kidney function, so she's had a progressively worsening headache all week. Needless to say, it doesn't look like she'll be going home soon.

Prior to this hospital stay, she was doing wonderful. She was finally able to drive again, she was able to take extended walks with her walking buddy, and she's gotten to enjoy spending time with our nieces and nephews. Now it feels like we've taken two giant steps backward. When we're going through these trials, it's incredibly difficult to remember that this will only last for a little while because the little while is so intensely bad. It's tough to remember that the Lord has a plan for all of this, but we know it will be realized someday.

Surgery is Over (from Ray)

The surgery went very well. They had to use a breathing tube, but it was out before Missy started waking up, so that was a relief. The downside, though, is that, since she wasn't allowed to eat until dinner last night, her kidney's aren't doing so well.

So, now that she's been here since Saturday, she's finally had the surgery she's been waiting for, but she'll be here longer than we'd hoped because her kidney's are tanking. Hopefully only a few days, though...

Surgery Tomorrow

Saw the surgeon this morning. He is running a CT scan today and then operating tomorrow. Hopefully he will be able to just use a "twilight" anesthesia but if there are any complications, they will have to put me fully out and insert a breathing tube.

I don't think we were prepared for this, but we are hanging in there. The hospital is a rough place to be, especially at night. There is no such thing as peaceful rest in here. LOL! But we have great staff here and have enjoyed seeing everyone again.

So, we will probably be here a few more days. We appreciate all your thoughts and prayers.

Back in the Saddle Again

This morning I was preparing food for a dear friend's birthday party... until we had to return to the hospital. One of the hardest parts of being sick is missing important events in the lives of those we love... Anyway, somehow I have caught a pretty nasty infection under my incision and needed to see the surgeon. Hopefully tomorrow he will be cutting it more open than it is now and getting rid of the infection. So, it should hopefully be a short hospital stay... but any stay is too long. :-p

I had forgotten (or rather refused to think about) what it feels like to be a patient. It's tough. When you are getting poked and prodded you try to smile and push through the pain, but it gets difficult after you feel like swiss cheese from all the holes they have made in your skin.

Lately I have been feeling so great and full of energy. My life has slowly been returning to my new "normal" where I can cook, clean, shop, and visit. What a blessing to have this time with my family and friends.

So, again, hopefully this will be a short hospital stay. They are starting me on antibiotics, culturing the infection, and the doctor will see me in the morning. So, for today, I am lounging around the hospital with my husband trying to be thankful that it was a mere infection and not something worse.

Instant Gratification

A few months ago, I was teaching a class on Financial stability. The author of the book the class was based on made the argument that current generations see what their parents have and think that they have to have better than them RIGHT NOW. He makes the point that with credit, it is possible for young people to live in houses and cars, etc. that are beyond their means. This causes great stress and responsibility as we go deeper and deeper in debt.

He suggests as an alternative, that instead of fulfilling our dreams instantly, to be more modest and work hard and eventually live off the fruits of your hard work. (He also suggests that our parents didn't live the way they do now when they first started out either.)

It's interesting how I can connect to this during this time of healing. In the past two years, Ray and I have went from being on the go constantly to a life of quiet calmness. I don't go to work anymore, we aren't serving at the church for hours a week, we don't really have too many commitments outside of the house. We are just resting.

Some of you are reading this thinking how wonderful that sounds... but it is also a challenge. Each morning I get up and have the option of doing whatever I want with the day. I have no responsibilities or commitments. Literally, I can do whatever I want. While I believe this helped tremendously in my healing, it is also a new way of life. Gratifying your every whim does not develop character nor make you into a person to be proud of. It doesn't accomplish anything. Anyone can do it. And there is no work involved to produce those fruits of progress.

Now I'm not complaining. I have really valued this time, but it has taught me to appreciate the things in my life that I work hard to complete. My sisters work hard at raising their children to be moral and ethical and loved. My mom works hard at helping others. My friends work hard at supporting their families, serving their churches, encouraging others, etc. One of my friends has been working hard with me in developing good low sodium dishes to serve our families. The fruits of labor and hard work are extremely rewarding and teach us to be better people.

My new challenge: Find some new (not too physical) things to work for and achieve. :-)

Desire of Our Hearts

These are my three newest nephews (Liam, Gabe, and William). I'm sure I am biased, but they are the sweetest and cutest babies I have ever met. I have spent hours lately holding, feeding, entertaining, and just staring at these little ones. They have already found a special place in my heart.

A few years ago, having a child was one of the greatest desires of my heart. Ray and I prayed and prayed that God would bless us with a little one. We took hormones, did testing, regularly visited the doctor, etc., but we were never able to get pregnant. I even remember praying once that God would teach me whatever He wanted me to learn from the wait so that I could hurry up and get pregnant. LOL! (Patience is not my strongest virtue.)

Now, through God's grace, I have accepted that motherhood may not be a possibility in my life. Although my heart has healed some, I am still in heart failure and having babies is extremely hard on your heart. As for adoption, with my "terminal condition" it would be extremely difficult to get a child. Now I know that if God wants to fulfill this desire in my life, He will. But in the past year when I have watched my younger sister get pregnant before me, God has lessened my desire to be pregnant and made my heart content with being an aunt.

Sometimes when we get a desire in our hearts, it is hard to see all the other blessings we have in our life. And I am so thankful to learn that desires of our heart can change with time and circumstances. So, if your stuck waiting for a desire that you feel you won't be fulfilled if you don't see to fruition, give it time. You never know how your life will change, which will cause your desires to change with it.

In the end, Ray and I are surrounded with 15 nieces and nephews, lots of friends with little ones, and tons of extended family with babies. God surrounded us with children everywhere we turn, and we are so thankful for those blessings in our life.

P.S. My recovery is going wonderfully. I have very little pain, am able to do a little cooking and cleaning, and am still exercising every day. My rib was not broken, it was just cartilage (or scar tissue) that tore, but it has already mostly healed. So... I am now relatively normal! (No one believes that! LOL)

Life is Good

A year ago, we weren't sure that we would make it to another anniversary... yet here we are, married 8 years!! And we are so blessed to have this time together.

There is something about having a terminal illness that helps you to appreciate each and every day. And that is exactly what we have been doing... enjoying every minute!

Each day brings a little less pain and a lot more health. I am still having to rest quite a bit, but am able to walk my usual 2 miles a day and am back to being able to do a little cooking and cleaning. I am anticipating to keep getting more and more active, but for now, I still get pretty tired.

Last week in my support group, someone suggested that happiness is just a mood that sways with your situations, but that you can have a joy that God gives that can never be taken away. This got me thinking... Although I have had that joy most of my life, these last few years have been more dark than I could have imagined. I never realized that people had to go through such hard times. I'm not sure we were joyous through that time, but we were always in God's hands and did ask continually for his strength.

There are several of our friends and family that are in hard times. Our eyes have been opened to the struggles and suffering. My thoughts and prayers are with you. Also, there is a verse that I read that sums up my experience with heart failure... "ALL GLORY TO GOD, WHO IS ABLE, THROUGH HIS POWER AT WORK WITHIN US, TO ACCOMPLISH INFINITELY MORE THAN WE MAY ASK OR THINK."

When we were praying for a safe heart transplant, for His blessing on the doctors, my body to accept the heart, minimal side effects from the drugs, no complications, etc. He did exceedingly more than Ray and I were asking for or thinking, He healed my heart. What a beautiful reminder of how no matter how difficult the situation, it is a season and at any time, your healing may come.

Home Sweet Home

So sorry that I have not posted sooner. WE ARE HOME FROM THE HOSPITAL!!

The surgery was a lot more difficult than I remembered it. I'm thankful for minds that block that out for us. This past week and a half has been fraught with pain and difficulties; however, healing has been swift and all of my doctors are very pleased with my numbers and results. No complications to the surgery to have my pump removed. I am now sitting here HeartMate free!

The return home yesterday was much easier than I was anticipating. And I was able to get a good night's sleep with the help of some pain pills and SIX pillows. LOL! Ray also got his first full night of sleep in two weeks. (He was sleeping in a recliner at the hospital... well, that is when there wasn't someone in the room taking blood, measuring blood pressure, giving shots, etc.)

Although this is a hard time for me, I have been constantly reminded about how great my family and friends are. Thank you to everyone for your prayers, visits, emails, flowers, cards, and phone calls. We are so very blessed. And thank you to those who have brought and are bringing meals, that is truly such a blessing. Thank you for being a part of this trial with us.

More to come later when I am feeling a bit better. I have lots of good hospital stories. I cannot wait to post a picture of flowers that my niece made for me out of construction paper because she thought I couldn't have real flowers. They were the envy of the hospital. She is so sweet. Till then, "Good night and big balls."

2 Days Post-Op (from Ray)

First, THANK YOU for the kind words, thoughts and prayers for Melissa over the last few days! We couldn't have made it through this time without them! Thanks for the waiting room goodies, too, Mom, Angie, Annie and Tim!

Well, today's day 2 post-op, and things are moving right along. I'm not sure what I've posted and what I haven't, so forgive me if this is all recap. The surgery went very smoothly, no bi-pass machine was necessary, and only 2 units of blood were given. About 9 hours after she returned to her room, she was extubated (about 10:00pm Wednesday), after which there was an issue with too much carbon dioxide in her blood. So, her nurse Tiffany and I had to keep her awake for a while. Anyone who's been around Missy when she's falling asleep knows that she can be pretty funny even without pain medicine; long story short, I got her to sing us the theme song from the Gene Wilder "Willy Wonka" and she has no memory of it at all! :-) The things we do to stay entertained!

The next morning, she was up sitting in her chair for the doctor's rounds. They said (and continue to say) that her readouts are very good (things such as cardiac output, PA pressure and CV pressure as well as organ function data). Later in the morning, she was given a PCA pump with a different pain medicine, which makes her sleep a lot. So, the rest of the day was spent napping and recuperating further.

This morning, she was up in her chair for breakfast (her appetite is slowly beginning to return). Throughout the day today, her various tubes will be pulled, starting with her chest tubes, then the Swan catheter, and finally the foley. She's started on her ARB (which she's on instead of an ACE) and will re-start Coreg later this morning. In a few hours, all of her IVs will be removed except for the PCA and a maintenance line. She's also going to be taking her first walk later today.

She's still not quite ready for extended visitors, so keep an eye out for another guest post from yours truly!

And They're Off (guest post from Ray)

So after some frantic scrambling (OSU told us the wrong surgery date, so we were a day behind), Missy's LVAD explantation is officially under way. She was wheeled in at 7:00am this morning after a less than restful night's rest. Keep an eye on this post, as I'll re-comment here rather than make new posts for each update.

Thanks again for your thoughts and prayers!

Impending Surgery

Well, the surgery date is drawing near... Thursday morning at 6. Yes, that's early, but hey, I don't get to pick the time. :-) Although I am so excited to have the heart pump removed, I am not looking forward to the surgery. However, Ray and I drove out to Mt Vernon last night (where we met and went to college). We spent some wonderful time together praying for peace in the huge chapel. It was amazing, no one there but Ray and I and God. We laughed, we cried, and we prayed for strength and peace. We cannot say thank you enough to everyone who has showered us in prayers. So, as the day is drawing near we are trying to do what we can to be ready.

We had a wonderful weekend with friends and family preparing to welcome my newest nephew into the world. They baby shower for my little sister's firstborn was so fun. It was at a park and the weather was beautiful, except for the crazy wind that kept blowing everything over. LOL! But everyone made the best of it. It was an amazing weekend and so distracting for me to think of her all weekend instead of this surgery. Ray and I are trying to do ANYTHING we can to distract ourselves. LOL!

I have found some comfort in knowing that one of my doctors is a believer and that he will be in the operating room with me. Although I have not been too distracted by the "what ifs" that can happen during such an intense surgery, I do have my share of fears that I am praying God will give me the strength to overcome.

Sorry to post a long one today, but there are a few things I have been wanting to share out here. First, is what an incredible family I have. As you can imagine, Ray has gone through every step of my illness with me. In the beginning I had tons of guilt that I was forcing Ray to take the life of a caretaker of a critically ill patient instead of the life of a young married couple. One day, he came home and told me that he found his purpose in life in taking care of me and that it made him into a person that he was proud to be. I am also so proud of the level of growth and maturity he has gained through this time. I am sure God handpicked us for each other.

Also, my mom, dad, brother (Tim), and sisters (Amy, Nikki, Lesley, Janie) have been amazing throughout this time. Their wisdom, strength, and self-sacrifice have been inspiring me to be tougher through the pain. And to remember that I am affecting others' lives.

Although many of my friends and extended family have been amazingly supportive throughout my illness, two of my friends have become real soul mates. Annie has visited regularly, cooked meals, made phone calls, helped us build a deck, and assisted me in many of my endeavors lately. But more than that, she has always stood behind me reminding me of who I was, and who I can be again. Often times I doubt that I still have the character traits that I used to before the illness, but she often reminds me that I can still be that person, only better. Thanks for all you do.

And I would be remiss not to end this post telling everyone about Angie. When I got home from the hospital in January, I prayed for a companion while Ray was at work all day. Angie was my answer to prayer. She now walks with me EVERY afternoon. I know she is a huge reason I have been so faithful in my exercises and diet. She is a wonderful walking buddy (because she can talk about anything in the world and never runs out of things to discuss. So, when I am too tired to talk, she will carry the conversation. That is a blessing when you are tired and it makes our walks go by so quickly.). Angie also picks me up each week and takes me to the hospital for a heart pump and transplant support group. She has joined me in special visits and meals for the patients there. She has a real heart to nurture and encourage and I don't think anyone could be more likable than her. She has become a very dear friend.

There is a verse my sister Lesley shared with me years ago that I am trying to meditate on, as this surgery has become more of a psychological battle than my last ones. "He will keep him in perfect peace whose mind is steadfast on Him."

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.

Testing Date Set for August 2

Last week we were informed that my surgeons would like to move up the LVAD extraction testing to August 2. What this means is that on Aug 2 I will have another ultrasound (echo) of my heart while my pump is turned off to see how the heart is functioning. Then I will have a stress test where I am pushed to my limit on a treadmill to see how the heart functions with my pump off.

I cannot express to you what a load this news has been. If the testing goes well, I have open-heart surgery again to have the pump removed. If it doesn't go well, I go back on the transplant list awaiting open-heart surgery again. I guess I always knew when the pump went in that it would have to come out... but having been through this horrible surgery once, it is so difficult to think of doing it again. (Not to mention that I have been reading a book where the man had a defibrillator and three times in a row it fired during his stress test. I have not yet experienced my defibrillator firing, but I know it won't be pleasant!)

Each of you that have prayed for me should know the power of prayer and share in the miracle that your prayers brought about the initial healing of my heart. I am begging you now to please continue your prayers to allow the complete healing of my heart and the removal of my pump. I would also ask that you pray for strength for me also. At this time, I just don't know if I have the strength or courage to go through this surgery again; however, throughout this illness God has taught me that it is not by my own strength or might, but by His. (And usually He has to remind me of that on a daily basis.)

The past few weeks (and especially few days) have been extremely hard on me emotionally. With the weather so hot and not being allowed to drive, I have basically been somewhat couped up. It is difficult not to get angry about being sick, or sad about having my career taken away, or lonely that we weren't able to have kids, or just tired of taking lots of medications that make me tired and irritable all the time. But it is in these moments that I try to stop and remind myself of all the blessings I have received instead. These last six months with my family and friends have been more than worth it to me to have endured such a difficult surgery... and it gives me the hope to face another one.

Please pray for the testing on August 2.

Famous LVAD

Last week Dick Cheney was given an LVAD. There has been quite a bit of buzz around the entire ordeal. The LVAD (heart pump that I have) just got approved this spring as "destination therapy," which means that the FDA approved for people to get the pump that will not be candidates for a heart transplant. My guess is that Dick is a little old (late 60s) for a transplant and may choose to just live with the pump. (For more information see www.theheart.org/article/1099181.do) This is interesting to me that finally the pump is getting good publicity just because someone famous needs it. But I am glad that people are realizing the benefits; however, the surgery and recovery are pretty rough.

The LVAD has certainly provided us with a wonderful last six months where we have been able to live a semi-normal life. Our experiences and memories are so much more valuable to us now because we are constantly reminded how precious each day is. Plus, I am able to clean, shop, walk, and cook. And most of all, we are able to visit with those we love. :-)

Reading Relics

Yesterday I finished reading the book "Mr NewHeart." Really enjoyed the book and was able to identify with so many of his thoughts and experiences. Mr. NewHeart had a massive heart attack that caused damage in his left ventricle that led to several episodes of V tach (heart fluttering) that caused his defibrillator to fire many many times. I loved his response in the book when the doctor asked him if was nervous about an upcoming procedure that had already caused his defibrillator to fire. He said, "I was nervous at my wedding. I was afraid in Vietnam. Right now, I am terrified." Living with fear is a major constant for someone with heart failure. Some days you can be feeling so wonderful and then in an instant your heart will flop, or go into V tach, and fear instantly grasps at your thoughts.

Daily I am reminded to trust God that all things are for His purpose and that with His strength, I will make it through the day. Then I get up the next day and start it all over again. God is really teaching me that every day is a gift and a struggle all in one. :-)

We have often discussed fear in a support group that I attend at the hospital each week. (Thanks to a dear friend that takes me every week!) Also, I know God is orchestrating all things in my life because we just joined a small group at our church and we were so pleased to find that we are doing a study on "Living Fearlessly." God has watched over us and is helping us in every area.

Still feeling pretty well. The doctor told me I could start using the elliptical machine. It's a lot tougher than I remember it being! And it makes my heart race so quickly. But I know in the long run it will be so good for me to build the strength of my heart.

I also tried cooking a salmon pasta this week. (I HATE FISH!) But I am trying to eat fish because I know how good it is for my heart. The pasta didn't make me gag, so that's a good thing. LOL

Also, a shout out to my sweet niece. HAPPY 10th BIRTHDAY!!! Love you Banana. So glad for the past several months that I have been able to spend quite a bit of time with her. She is a very special person and I am so thankful to be in her life.

The Shack

Lately I have been trying to keep my mind sharp by reading books of all sorts. My sister had given me a Christian series about a family and their relational, physical, and spiritual journeys. The books were very helpful in encouraging me to evaluate my life lessons and struggles and to see God's hand in all situations.

In addition, I have read several books by people who have had heart transplants. My hope was that I would find some understanding and comfort in others who have experienced similar trials. However, most of the authors disappointed me, as I found many of them did not accept their illnesses and frankly were pretty angry throughout the books. So, if you know of a good book about heart patients, I would love the recommendations.

Now I am reading "The Shack" by WM. Paul Young. Not quite finished yet, but only a little more to go. It's an interesting book, but I find some of it a little out there. But I love the idea that God loves us so much that He would invest himself so intimately in our sadness. I remember when I first got sick that I felt a little forgotten about by God. I knew there must be a purpose in it all, but I was certainly struggling to find it. In the end, the only option I had was to trust that God would guide our journey. I found this excerpt from the book that I just loved:

"Just because God works incredible good out of unspeakable tragedies doesn't mean He orchestrates the tragedies. Don't assume that His using something means that He caused it or that He needed it to accomplish His purposes. Grace doesn't depend on suffering to exist, but where there is suffering you will find grace in many facets and colors."

Anyone have any other thoughts on this book? How about recommendations for other readings??

P.S. Will post about our Fourth of July party asap... just waiting on pics from my little sister. Have I mentioned how darling she looks with a little one on the way??

Life Gets Tough

The past few weeks have been a little challenging for me. My new medication changes have been difficult and Ray and I seem to have fallen into a little slump with our moods. Plus, my walking buddy and dear friend is on vacation and I haven't gotten to walk and talk regularly.

In just His way, God provided these words to me yesterday in my devotional time:

"There is a reason for your season of heaviness. Great soldiers are not made without war. Skillful sailors are not trained on the shore. It appears that if you are to become a great believer, you will be greatly tested. If you are to be a great helper to others, you must pass through their trials. If you are to be instructed in the things of the kingdom, you must learn from experience. The uncut diamond has little brilliance, the unthreshed corn feeds no one, and the untried believer is of little use or beauty. There are great benefits to come from your trials. Many people have a comparatively smooth path through life, but their position is not the equal of the tested believer. The one who is much plowed and often harrowed will thank God if the result is a larger harvest to the praise and glory of God. If your face is now covered with sorrow, the time will come when you will bless God for that sorrow. The day will come when you will see great gain from your losses, your crosses, your troubles, and your afflictions.

From all your afflictions His glory shall spring,

And the deeper your sorrows the louder you'll sing."

One of my college classmates passed away last week. He had been diagnosed with brain cancer in 2007. My heart broke for his family and friends, but I love the way everyone has remembered the incredible spirit he had throughout his life. I am hoping the some day, people will also be able to think of me in that light. So, although there are days that I struggle with my illness, there are also days when I am so thankful for the blessings that are in my life. My husband, family, and friends have been such an encouragement to me and I am so thankful to be a part of their lives. So, if you know someone who is sick or hurting, take a few extra minutes out of your day to call them, visit them, mow their yard, make them dinner, bring them flowers, etc. Remember that Christ said, "Love one another as I have loved you. By this will all men know that you are mine, if you have love for one another all the time."

Why?

Each day seems to bring with it a chance to ask why. A chance to wonder why one person's life is so different from another's. A dear friend called me last week and was telling me that they are unable to have children without surgery. Some of my friends and family haven't been blessed with a spouse to share their life with. Several friends and family have financial or career struggles. And some of my friends and family are living with illness.

It is so easy to fall into the "why me" trap. I find I have to remind myself daily of the many blessings that surround me each day. How happy I have been and how many things I have in my life (like friends that will help us build a deck, friends that walk with me every day and drive me around, and families that constantly encourage me). I am convinced that because our struggles are so difficult, I often forget to be grateful for the wonderful people in my life. Thank you to everyone who has given of themselves in my life!

My Mom said something to me last night that will forever be one of the most precious statements anyone has ever made to me. She told me that she often wonders why the devil wants me out of the world so badly. As a baby, the doctors said I would never make it, but at the last minute, God pulled me through, same as this last year. It's comforting to think that God has protected me and has His hand on my life. I pray that each of you will experience His will in your life so that you can feel that same comfort and joy.

Well, I am happy to report that after having an episode of V-Tach (fluttering of my heart) last week, my medication has been adjusted and I am finally feeling better. It took about a week and a half to adjust to the change in medication (the heart meds make me so tired and light headed that I constantly feel like I am going to pass out or throw up) but now I feel stronger and my heart pump numbers are good. Thanks for all of your thoughts and prayers. I have a doctor's appointment today at OSU but am not really anticipating anything too exciting. LOL

Perfect Timing

This past week I have been contemplating timing. It has been astounding to me how many major decisions in life are made simply by the timing in which they are presented to us. When looking back on my life, I am just amazed that so many of our choices were the right ones, despite our circumstances... or maybe because of our circumstances.

One memory that I keep repeating over and over in my mind, is April 6, the day of my testing. When I went to the hospital that day, I was certain my heart pump would be removed. Some of the testing was invasive and painful and I always find myself singing in my head to distract my mind from the pain. The song I sang that day during my procedures, was "In His Time. In His Time. He makes all things beautiful, in His time. Lord please show me every day, as You're teaching me Your ways, that You do just what You say. In Your time." How appropriate when I was blasted with the news that my pump wouldn't be coming out. I realize now that just as fire tests the purity of silver, so these trials purify my faith. My entire life I always thought there was no way I could handle having a terminal illness, but now I know that with God's help, I can. :-)

Also, I have been thinking about January 11, the day I went in for the heart transplant. God had prepared my heart for the transplant and I was at peace, only to wake up and find that He gave me a miracle. The possibilities have lingered in my mind lately of how I could have had the transplant and be struggling with the medications or illness now.

It is just interesting to me that no matter how much I grow, I still seem to be surprised when something gets thrown into my path - good or bad. But I am grateful that I have learned, everything follows a timeline of God's will. And we are so blessed for that!

By the way, I am still feeling great. My heart pump numbers get a little better each week. I am walking over 2 miles a day. My family and friends have been wonderful visitors. We just moved my Dad out last weekend so Ray and I are alone again. However, I have come to enjoy the alone time and appreciate company all the more! Thanks for all your thoughts and prayers.

Fear

Fear is a new challenge that came along with my illness. It is an every day (some times every hour) challenge not to let my heart be consumed with fear. Fear is a natural reaction to pain and suffering and I believe it is a journey we have to travel and learn to overcome. I have watched as Ray and my closest family and friends have battled with their own fears through my illness. I was inspired to write this blog by my little sister, who has always seemed to conquer her fears so courageously and who was inspired by the sermon on fear she heard Sunday.

I cannot write this blog with any real words of comfort on the subject because I feel that I am still taking this journey; however, there are a few things that have helped me face my fears, that I thought I would share. If you have other suggestions, please feel free to post them. I think we could all use help on our journeys. Also, if you have a situation you would like prayer for, please leave a post and I will be sure to keep you in my thoughts and prayers.

First of all, my greatest comfort comes from these words of the Bible (Isaiah 41:10). I recite them to myself quite often to remind me that God has a purpose in all things, and one that works for the good of those that love Him. "Do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous hand." Or another version, "Fear not for I am with you; fear don't be afraid. For I gave you a plan and a purpose for each new day. Be not afraid child, I have called you by name."

Also, I have found another way of calming my fears is to face them head on. For instance, the last time I was in the hospital, I stepped out of the shower and passed out. I awoke naked with dozens of people hovering over me trying to get me dry so that they could shock me back to a normal heart rhythm. (Have I ever mentioned that there is NO shame in the hospital. LOL) Anyway, when I came home, I was terrified to get back in the shower. It was just such a horrifying experience that I was afraid. But I knew I had to shower (because I wouldn't have any friends left if I didn't) so I just did it. And then I did it again. And again. And again. Now, three months later, I am able to shower without thinking about it. (However, I do keep my bath robe on the bathroom door just in case!)

For those of you facing situations that you are fearful of, there is one more thing I would like to share. God is in the miracle business and He loves each and every one of us. Don't lose faith!

Hour Not Known

Keeping in the spirit of sharing some lessons learned, I wanted to write about the motivation I have found lately to make every moment memorable and not just wait for time to pass. See, I think some times we stick with our daily routines and do not step out of our comfort zones to make the most of every opportunity.

Every day since I got sick I have the reminder that it may be my last day. It has given me the motivation I need to get out of bed in the morning and to try to make a memorable day. It is difficult some days because I don't feel like doing anything and don't feel physically well, but then the truth reminds me that if I stay in bed all day (or for those of you who aren't sick, perhaps this is staying in your normal activities) I will have nothing to be excited about, nothing memorable, nothing to make me worthy of the calling on my life, just a day of nothingness. For instance, yesterday I was feeling very downtrodden about the patients I had visited with on Wednesday at the hospital. It was tough having the reminder of the terrible effects this illness has on people. I was having a hard time getting out of bed yesterday until my mom, sister, and four nieces and nephews stopped by for a visit. It was yet another reminder to me of how many memories and wonderful opportunities I had to make the most of the day instead of just waiting for time to pass. Life is so short and passes so quickly...

Although I know we need days of rest, we should all be motivated to make the most of every opportunity because none of us know what moment will be our last. It is just that having an illness gives you the reminder of how fragile life is. I wish I could give that reminder to each of you to remember that our days are limited, so let's make a life that makes a difference.

Consider these verses: "Be dressed and ready for service and keep your lamps burning, like men waiting for their master to return from a wedding banquet, so that when he comes and knocks they can immediately open the door for him. It will be good for those servants whose master finds them watching when he comes. But understand this: if the owner of the house had known at what hour the thief was coming, he would not have let his house get broken into. You also must be ready, because the Son of Man will come at an hour that you do not expect him."

Helping Hands

For months I have been on the mend and finally feeling like we are getting back to a semi-normal life. As I have been getting teased about not posting enough, I thought I would share some of my thoughts and lessons learned while I was sick. I hope all of you know that these come from a place in my heart where I would like to help you in your daily relationships with others who are suffering.

Today I would like to start at the beginning and share with you about the day we found out about my illness. There was a realization in my heart about how many other people were going through their day with excitement and fun, while our world was crumbling around us. See, we are a society that is ALWAYS on the go. We feel like we have so many responsibilities and things to do, that we don't take time to look around us and see others who need our helping hands.

Ephesians 4 says, "Live a life worthy of the calling you have received. Be completely humble and gentle; be patient, bearing with one another in love." When others are hurting and need support, we have to not only be less busy so we can notice that they need help, but be willing to disrupt our lives to be there to serve others. You may actually be thinking that I am saying that others need our service, but what I am really saying, is that we need to serve in order to live a life worthy of the calling we have had.

Serving someone else who has physical, emotional, or financial needs will take a lot of patience. Although I have been blessed and am able to be home, there are so many trials that I face daily that I cannot express to you. Terminal illness is something that is emotionally and physically draining; however, because of my faith and the people in my life, I have been able to feel so happy and blessed. However, others around me are still suffering and we need to be patient and bear with them... not just for their benefit, but to give us purpose and meaning.

For those of you that are thinking that you know people who are suffering but you are not always sure how to help, or you don't really know the person really well, there are three "helping hand" ideas I would like to propose that would be ideal in almost any situation:

1. Food - EVERYONE is helped by providing meals. No matter what the struggle, cooking for someone else allows them the opportunity to not have to spend the time or energy into cooking. I know many of you are thinking that the person might have dietary needs; however, even when I was given food I couldn't eat, it was so nice to be able to offer it to my family or friends who were constantly here.

2. Finances - Who doesn't love to get money? LOL! I know that some people are very prideful and would not feel comfortable receiving cash; however, I think a gift card shows someone that you wanted to give them a gift to tell them that you really care about them. Some peoples' financial struggles are apparent and some are not. This is a tough one to know when you should offer; however, if you feel in your heart like they need a blessing and you are wanting to help and don't know how, this is an excellent way.

3. Time - This is the hardest for people to give, but I feel the most important. Be patient with those who are struggling because they don't always know how to tell you to help. But if you are around and willing, you will be used. Take time out of your day to pray for them. Take time out of your day to call them. Take time out of your week to visit them. Take time to realize that they may need help mowing, cooking, weeding, mulching, grocery shopping, etc. but it will be difficult for them to ask unless you have developed a relationship of patience and understanding.

It was amazing to me when I got sick how people were willing to change their lives to help me. It has changed my life. And I always thought that helping others was for their benefit. But as my husband told me a few months ago, he found his purpose and worth in taking care of my needs. He has become a person that we are both so proud of because he has been able to focus his life on the needs of someone else.

So, I am proposing by looking around you and recognizing the needs and hurts, and reacting with patience and kindness, you may find that your life could be changed and that you may be able to meet not only their needs, but yours as well. :-)

Test Results

Do you ever have so much assurance of something that you just know that you know what is going to happen? That is how I felt about my testing yesterday. I was so certain that everything was going to be great and they would be taking out my heart pump in the near future. Then yesterday, that assurance came crumbling around my feet and left me thinking, "what just happened?"

In the morning I had an echo (ultrasound of my heart). Normal heart function is 60%, mine used to be at less than 15%. Yesterday, with my pump turned off, my heart function was 50%!!!! Wow right?

Then I had a heart cath (where they stick a long tube through my neck into my heart). My heart pressures and cardiac outputs looked perfect. Then they stuck me on an exercise bike and monitored my heart and lung performance. Apparently, my heart does great when I am at rest, but not so great when I exert energy. It was a crushing reality. The cardiologist decided that they couldn't take the pump out because if they did, I would be completely limited in what I could do. Also, she felt that I would be back in severe heart failure very shortly after removing the pump.

So, they would like to wait 6 months and then test again. She indicated that if it isn't better in 6 months, then they will place me back on the heart transplant list.

I was not prepared for these findings. I was so sure that the testing would go well because of how wonderful I feel lately. So, I am holding to the fact that at least I am out of the hospital and feeling well for the next 6 months. I will use that time to pray and sharpen my life to be ready for whatever opportunities come my way. I know He has a plan and purpose for my life, so I am trying desperately to hold to that promise and to "fear not for He is with me."

We would really appreciate all your thoughts and prayers.

Oh, and Easter was awesome!! I will never forget my big brother dressed up as the hitman easter bunny and the beautiful time with my sisters, parents, nieces, and new nephews.

Glad Game

One of my favorite childhood movies was Pollyanna. If you haven't seen the movie, Pollyanna come to a new town and helps several people through their difficult times by playing the "Glad Game." It was a game her father invented. Pollyanna desperately wanted a doll so her dad wrote to the missionary house and asked them to send one. They accidentally sent crutches instead. But her dad refused to let her be sad about it and made up the Glad Game where they thought of all the reasons they could be glad about getting the crutches (mainly that they didn't have to use them).

For some reason last week, I was contemplating the game. I have been feeling the loss lately of not being able to have a child... It got me thinking how the Lord put me in a family where I already have 12 nieces and nephews and another one on the way. Plus, most of my dear friends have children. It made me realize that although God knew my body couldn't handle a child, He filled my life with children and love. I am so thankful that He has blessed me so abundantly.

Hope you are enjoying your Holy Week and Easter tomorrow. We are disappointed that one of my sisters won't be joining us, but we are excited to spend the day with the rest of the family (and not in the hospital!!). In fact, Ray and I will be singing in our service tomorrow morning.

Please keep my testing in your thoughts and prayers on Tuesday. I am confident that the Lord has already healed me and I am excited for the doctors to see that as well. Thanks for all of your support.

Testing Day Set

These last few months have been a wonderful respite from the six months we spent in the hospital. Some times I think God pushes us to our breaking point and then picks us up in love and gives us rest.

My walking has increased to a little over a two-mile hike each day with a wonderful friend whose conversations make the walk one of my favorite times of the day. We are learning to cook new foods (I will be posting some of my favorite recipes shortly). And we are spending lots of time with family and friends. I was even able to do a little volunteer audit (pretty sure some of the many drugs I had in the hospital have tainted my abilities, but it felt wonderful to challenge myself mentally).

There is something about having a terminal illness that teaches us to appreciate each day. The relationships that have blossomed to new levels and the daily realizations that each memory builds ripple affects that can change lives gives me hope each day and motivation to make the most of my time.

Also, the Christian talk show that Ray and I shot a few weeks ago is online if you are interested in watching it (I think only the first show is on the website today but the other should be added in the next day or so). We are so thankful that others may be encouraged through our struggle. And I hope that it is an encouragement to everyone that all things are possible with God and that all things work together for good for those that love Him.(http://www.wtlw.com/Programs/LocalPrograms/GraceForToday/tabid/70/Default.aspx)

Also, they have set up a bunch of testing for next Tuesday, April 6. They will do an echo (ultrasound of my heart) while turning off my pump. Then they will do a right heart cath (stick a long tube through my next to my heart). While the swan is still in my neck, they will bring in a recumbent bike and have me exercise my heart with the heart pump turned down and a mask on to measure my use of oxygen. If all goes well, and I am certain it will, the pump will be scheduled to be removed at my surgeon's first available slot.

We would really appreciate all of your prayers for the testing and the upcoming surgery. We know those prayers are what has brought us this far and we are needing them to calm our fears of the upcoming surgery. We know God is in control, but some times we have to face the pain that comes with the valley before we get to that mountain top. God has been so good to us and we are so grateful, but we need His continued grace. So again, please just keep this testing in your prayers. And thanks for being a part of this with us.

Fulfilling Day

Yesterday Ray and I filmed a christian talk show. The host happened to be in the waiting room during my transplant waiting on her husband's surgery. We were a little apprehensive about sharing our innermost feelings with anonymous watchers, but we really felt like God could use our testimony in so many great ways. We actually had a good time doing the show and Ray particularly enjoyed it. (I will put a link to it on my blog once it airs next Wednesday and Thursday, if you are interested in seeing it.)

Then, I went to the hospital for a support group meeting. There are so many young LVAD patients there right now. Five that I spoke to who were under 30. The group was a particularly moving time and by the end of it, we were all in tears. It is so much harder for younger patients to be able to emotionally deal with such a difficult illness. Anyway, during the meeting I was able to share my faith and I am hoping that God will really speak to these ladies and give them hope and love. It is so exciting to allow God to speak through you.

Then we went to dinner with my mom and then dropped by my Aunt's house to wish her a happy birthday. It was a wonderful day; however, by last night I had to take pain medicine to be able to sleep because my back and legs and stomach hurt so bad. It's tough to remember that I am still healing and not able to do the things I used to yet. But my husband has been so wonderful as a caretaker and he always seems to understand.

There are a few verses that have been running through my head lately. They certainly help me make decisions about my health but they apply to every area of everyone's lives. Especially in light of all the political debates that have been happening around Columbus lately with healthcare and what not. They are verses I learned as a child in caravan but have proven to be my life's direction: "Lean not on your own understanding. But in all your ways, acknowledge Him and He will direct your paths."

Dark Day

Strange how one day can change the course of your entire life; March 9 of last year did just that for us. That was the day we thought we were going in for a routine test and found out I was in heart failure. I remember feeling so scared and not quite understanding how the illness would affect my life. As my mom and I proceeded to the Heart Failure Clinic, I will never forget the older nurse who just kept patting my hand and saying, "There is hope honey, there is hope." It was a horrible day.

It took Ray and I months to work through in our hearts how God could let something so horrible happen. Although we knew ultimately that He loved us, we struggled to feel that love. Learning to adjust to a terminal illness as a young couple was so very difficult for us. But I do believe that we began to accept that God was doing a work in our lives. We determined that no matter how bad it got, we would do what we could to serve Him. We learned day by day that we couldn't do anything but trust God's plan. I wish it didn't take such an awful illness to teach us that, but I am thankful for the lesson. In fact, I cannot tell you how much Ray and I have grown and how much love and empathy He has given us for others.

And how can I talk about this dark day without being reminded that it led to His miracle day on January 11?!?! There can never be victory without first going through the battle.

Therefore, I will continue to remind myself all day today that this is the day the Lord has made. I will rejoice and be glad in it.

Many of you also have dark days where you remember the loss of a loved one or some tragic event that happened. I wish I could take your pain away, but I can't... but I know someone and He can!!

Recap of Non-Transplant Day

It has occurred to me through several of your questions, that we never took the time to write about January 11, my non-transplant miracle day. Let me share with you some of the miracles and thoughts from that day (sorry it is a bit long, but it's a good story).

While I am in the hospital, my family never leaves me alone. However, some times in the mornings after Ray leaves for work and before Dad arrives, I have a few minutes to myself. It was in that time that the transplant team came to my room and delivered the precious news that a donor heart would be ready for me by evening. I was immediately shocked and terrified and relieved. They did tell me the donor was 29 and local and that it was a good heart. I immediately began praying... trying to calm the emotions that were welling inside.

It truly didn't matter that I was alone, because I think every nurse, PCA, doctor, staff, etc. from the hospital came to celebrate with me. And I mean celebrate. The OSU staff know that a new heart saves lives, and they know that without one, their patients pass on. They have such difficult jobs, and they have learned how to take excellent care of their patients, including the ones that just found out they are going to have their chest cut open, their bones sawed in half, their heart pulled out, and a new one put in place. They kept coming in and crying, yelling, encouraging, and celebrating with me. And to top it off, the nurse I had that day was the nurse who had originally admitted me to OSU, whom I have developed a wonderful friendship.

The family began arriving, each one with different feelings and emotions. Everyone had a mixture of concern and excitement on their faces. And I felt everyone watching me all day to see how I was reacting (did I mention that we found out about the heart at 9 in the morning but didn't go for surgery until 8:30 that night). I cannot tell you how much it meant to me to have everyone there. We filled my room and the waiting room with family and friends, and I can't think of a better way to spend my last day before the transplant.

In my mind, I was talking with God all day. In an earlier post, I had told you that I felt God had told me that if the transplant was His will, He would make everything "perfect." Well, the heart they had for me was 29 years old and had no heart or drug problems. It seemed like a "perfect" heart to me. So I was telling God that if this was His will, I would try not to be afraid and to trust Him. I was also asking Him that if His will was for me to not get up from the table, that He would take care of Ray and my family and friends and let them remember me before I got sick. My day seemed to start in fear and panic, but by the time I had spent the day in conversation with the Lord, I was at peace for my surgery. A peace that it is so difficult to explain, except to say that it is a knowing in my heart that no matter what happens, God is in control and that made it okay.

We have a dear Christian friend who is an anesthesiologist at OSU. He happened (I believe at God's will) to be on duty that night. When I spoke with him, he seemed a little wary to do the surgery since we had developed a friendship; however, I assured him that having him there with me in the operating room would be very comforting for me. He was the one that came to take me to surgery.

Throughout the day I had received all the transplant medications. They burned going in and made me queasy (not to mention I couldn't eat all day). They also put in an arterial line to monitor my blood pressure more closely. When they wheeled me to surgery, I will never forget the peace I had in knowing that I had no control and that God was guiding my future. That is a place we all should live in every day because then we could quit messing up our lives and be able to let Him guide us; however, for me, it took a transplant to teach me to completely rest in His will. I will never forget the faces of my loved ones when they wheeled me out of the room for surgery (by the way, my dear nurse Maghee actually stayed way past the end of her shift to see me to surgery... she is so sweet).

The operating table is always the most scary for me. The room is cold and extremely bright with tons of equipment and people bustling about and no one really talking to me. This time was a little different because my friend was there. He kept telling me exactly what they were doing. It really made it easy for me to continue in God's peace. Before they actually began to give me drugs, I asked him to say a blessing over me (twice) and began praying.

When I woke up, I had the breathing tube in and felt pretty groggy (those drugs do crazy things to you). I heard the nurse say, "It's a miracle!" I thought, "The surgery must've gone extremely well because I don't feel nearly as bad as I thought I would." Then I opened my eyes enough to see the nurse and knew I was on the wrong floor. Ray was immediately there to tell me what had happened. I made him tell me twice, made my Mom tell me, then made my little sister tell me. God is so great!

It was hard to rejoice at first because the effects of the drugs had worn off and I still had the breathing tube in, which is the toughest part of recovery from surgery for me. Ray told me that the doctors had come out after I had only been in surgery for a few hours and huddled the immediate family into a little room. I couldn't imagine the fear they must've felt. Then they delivered the amazing news... My heart was functioning at 40-50%! There was a lot of shock and unbelief, but from the believers, there was a lot of rejoicing. God answers prayers.

The next morning when I got the breathing tube out and was feeling better, the anesthesiologist called me. He told me that when he was performing all the pre-transplant procedures, he had a little time and decided to do a trans-esophageal echo cardiogram (TEE) to take a look at my heart. (This was not a normal procedure for transplant patients because they are just going to cut out the heart and throw it away.) But since he had a little time, he did the procedure and found my ejection fraction to be around 40-50%. He called in a colleague, who told him not to say anything to the surgeon because I had just had an echo the week before that showed my EF to be 20% and they had turned down my pump and I had had heart failure symptoms. Plus, it was an amazing heart I was going to receive. (And hearts just don't humanly heal themselves, let alone in a week.) But our friend informed the surgeon anyway, who quickly retorted that my EF was only so high because of my pump. He then turned down my heart pump and for 20 minutes they watched my heart beat strong. These were two doctors who had put my heart pump in five months before and said that they had to strain to even see my heart beating at all. Now they were standing in the same operating room, watching it beat strong on the monitor.

My friend was rejoicing with me on the phone. He told me that he was so humbled to be a part of such a big event, God's miracle. I told him, so was I! I have no idea why God chose to heal me that day, but I am certain that it in part was due to the countless number of people and churches who were praying for God's healing.

The surgeon came to see us the next day. It was so sweet... while he was talking, more and more of the OSU staff kept cramming into the room to listen. This was the first time they had ever had a patient's heart heal. The surgeon told me that he had no idea what made my heart sick, and he had no idea what made it better. I told him I did, PRAYER. He just kept right on talking. He said that over the next few months they would start me on heart medications because they hadn't thought there was any need the last several months because they were certain my heart wouldn't heal. But now that it had healed, they wanted to start the medications, perform several tests, and then take out the pump. It will be the first time at OSU that a heart pump is removed to recovery.

Every day I am reminded of God's saving grace. Not just spiritually, but now physically as well. I think some times we don't pray with enough faith. Or we think our problems are too small. Or we wonder why we should pray since healing may not be God's plan. If I could just encourage you that the Bible says if you have an illness to have the elders of the church pray over you. It also says to cast all our burdens on Him because He cares for us. It also constantly talks about Jesus healing the sick according to their faith. I have been wondering lately how we could change the world if we would just starting praying with the kind of faith that has complete confidence in the miracles that Our God can do...

Perhaps my family and friends have more they would like to add to the story or to share their thoughts on the day? If so, please post a comment, for I am sure we would all like to celebrate together.