How Much Is Too Much?

Tis the season for parties, time with family and friends, baking, shopping, cooking, etc.  Life can get a little hectic.  Although the memories and precious time with loved ones are good for the soul, the activity, stress and all around business are not good for the heart failure.  In the past two weeks, I have had half a dozen of my closest family and friends tell me that I am doing "too much."

This started an interesting chain of thought in my mind.  How much is too much?  My husband and I have been honored to meet several others in heart failure, along with a great group of friends that have LVADs or transplants.  I watch as these people live their lives and make the best of their illness.  Here are a few things I have learned:

1.  Idleness is not always your friend.  If you do not exercise your mind, you will lose it.  (Insert your own funny remark here.)  Also, if you sit around too much, your body will become stiff and you will notice all the aches and pains.  The more you sit around, the worse your body will feel.  So get out, take a walk, go to the gym, or play fatty-bat with your nieces and nephews and feel proud that you are taking care of your body.

2.  Depression can hit fast and hard.  I truly believe the reason heart patients experience depression so quickly is because they lose their sense of purpose.  This is especially hard for those of us that have given up our careers.  And the more we take it easy and quit doing things, the more we lose our sense of helping the world.  I know God has a plan for my life, but I feel unused when I am sitting around doing nothing.  I find myself reading, rereading, and then reciting the book "The Purpose Driven Life" to constantly remind myself of my purpose.  But I really enjoy volunteering and helping others.  So how do I find that line between fulfilling my purpose and not doing "too much?"

3.  You are what you eat.  If you knew the special characters in my support group, you would know that we end every session discussing food. :-p  When I first got sick, I knew nothing about low-sodium cooking.  In fact, I really didn't know much about cooking altogether.  But slowly I am learning how to flavor foods with various spices and herbs and we have thrown away the salt shaker.  I could post on and on about cooking; perhaps another day.  But what happens at the holidays is that everyone keeps giving my sweets.  Then we have parties where there are more sugary goodies.  Everywhere I go, people have baked these delicious things and it would be rude of me not to partake.  The problem is, how much is too much?  How many of these tasty treats can I have before my legs and abdomen start to swell from the salt (yes, there is quite a bit of salt in baked goods)?  How many calories can I eat before I pack on the pounds? :-)

4.  Rest comes in different forms.  Some people enjoy relaxing in different ways.  In the past few years I have learned that I don't hate books, I really do enjoy all types of music, there is such a thing as too much news, you don't have to feel bad about ripping out pages of a magazine that you like and throwing away the rest, and Sudoku is just so much more fun to play on paper with a pencil and not electronically.

So as you can see, there is a fine line between resting and rusting.  How do you draw the line??

Fat vs Obese

Last week in our LVAD/Transplant Support Group we were discussing how hard it is to lose weight and how much more difficult it is to not put on pounds at the holiday season.

We were all saying how difficult it is that our charts say we are "OBESE."  We came to the conclusion that we would much rather just be called fat.  There is something about the word "fat" that paints a semi-pleasant picture of a joyful, happy person. (Perhaps this is because some of my favorite relatives and friends are fat and they are so much fun to be around.)  But the word "obese" just gives an instant mental picture of harshness and disgust.

In the last several months, Ray and I have both been trying to diet.  Some of you may not know, but there is a cutoff limit to how high your Body Mass Index or fat level can be in order to receive a heart transplant.  Because of the possibility that I may one day have to have a transplant, and because it is easier on my heart to not have to support my weight, we are trying to shed the pounds.

So far, Ray has lost 24 pounds whereas I have only lost FOUR. LOL!!  I know that men lose weight faster than women and that we can't compare ourselves to them.  But it is difficult.  I try not to make excuses for myself and just use my disappointment to fuel the flames of going to the gym and eating less.  We do pretty good with our diet and try to get a good amount of exercise in.  However, there are days when I am just so tired I can't think of going to the gym.  And I am certain that my low blood pressure and heart failure meds play into my metabolism being slow.  So, I have decided instead of being discouraged or disheartened by my "obeseness" I will try to be positive and remember that I have a lot of people I love and want to spend time with and I'm pretty sure they don't care if I'm a few pounds heavier than I should be.  As my good friend Paul says, "Thin is in but fat is where it's at!"

Prayer and Healing

All through my childhood, my parents had this picture hanging in our kitchen:

I remember as a child thinking how old and plain this picture looked; clearly the message was lost on me.  Thankfully I had parents who brought me up in the church and taught me how to pray.  My mom often reminded me in the most difficult times, when my faith was being tested, that God would always hear us when we prayed.

Ever heard the phrase, "A moment on the lips is a lifetime on the hips?"  A prayer can be said in a matter of minutes and can have lasting effects on our life.  A simple prayer can change our attitude, our minds, and can put us on the pathway to healing not only our minds and bodies, but our world as well.  And my heart is living proof that He still answers prayers (and we sent up a lot of them).

While I was sick, I remember hearing someone say that we often turn to God and ask for something and then when He doesn't answer, we begin to really beg.  After He still doesn't answer, we finally begin to really seek Him and plead for an answer.  Sometimes I think God brings us to our knees kicking and screaming.  But I am so glad when I finally reach His feet.  And although we often don't understand His answers, I am so thankful that He always does what is best for us when we seek Him with all our hearts.

My life has changed so much since my illness.  Like this painting, I feel like I have grown older and gained maturity (whether I wanted to or not).  I also feel like Ray and I have simplified our life.  Much like this painting, I feel like we are trying to get back to basics.  Before the heart failure, we were ALWAYS on the go.  I am sure that most of you pack way more into your day than you should. We run ourselves ragged.  But because my body doesn't allow me to live at such a fast pace anymore, we slowed down.  Know what I found?  I LOVE life!  There are so many things in life that bring me joy that I wasn't really enjoying because I was always in a hurry.

So each day I tell myself to slow down a little and pray.  Pray for peace, pray for healing, pray for strength, pray for the courage to overcome injustice, pray for resolve, pray for family and friends, pray for those in need, pray for our Country and those serving it, pray.  Pray to God with all your heart and soul, then gather up your might to meet the challenges that lie ahead.

Prayer changes us.  It awakens us.  Our eyes begin to notice beauty where we never noticed it before. Our hearts begin to feel compassion we never knew we had.  Our priorities shift.  As we talk to God, we receive the encouragement to live up to the potential inside us.  Soon we start to see beyond ourselves into the world that is waiting for our help.

I believe God is listening. And I believe God answers us. God’s answer to our prayers may be very different from the answer we were searching for; God’s reply might come as the strength to fight on. It may come as the courage to face what we have been fearing.  God’s answer may be the ability to accept what we have been denying.  Or it may appear as hope in the face of despair.  God is neither distant nor deaf.  We are not alone.  God is present in our lives.  When we stop bargaining with God and start opening up our souls, we will find that He is waiting patiently with open arms to teach us how to be a little more like Him.  Blessings to you.

Life - Two Years LVAD Free

Hello readers. Sorry for the gap in writing.  I guess I wasn't sure anyone was reading this blog; however, yesterday a Social Work Intern at the hospital reminded me of how easy it is to encourage someone else just by sharing our story.  So, for those of you that are interested, I will try to do better about sharing my thoughts and story with you.

It has been over two years since I had my LVAD explanted.  I am often asked if I ever question the decision to not have a transplant and to have my LVAD removed.  This is always an interesting question for me because although I am still tired ALL the time, have not been able to go back to work (that might be a plus on some days), and cannot have children, this in NO way compares to the blessings that I receive every day from being on this side of the ground.  Every day I am reminded of how amazing life can be and how loving relationships can mend any amount of pain and suffering.  So, of course the answer is - NO - I have gained two years of life and nothing can compare to that.

Thanksgiving was fun. Between three of my sisters, I have 16 nieces and nephews. You can only imagine how much chaos, love, and fun happens at our holidays.  I cannot WAIT for Christmas.  The only down side of Thanksgiving was the 4 pounds of fluid I put on.  Most heart failure patients are on a daily diuretic to keep off fluid, but Ray and I have been able to diet control my fluid so that I don't have to take the medicine.  But not at holidays.  Lol!!

I have been very blessed to be able to conduct my church choir again.  They are a great group and I find so much fulfillment in being able to worship with them.

With the loss of my career and feeling so tired all the time, I began to feel a little useless and lost sight of my purpose in life.  God has been reminding me that I am still here for a reason.  So, every day I choose a task/goal (cooking dinner, grocery shopping, volunteering, babysitting, etc.) and do my best to complete it.  This has helped me to rebuild my confidence and to remember that God's not done with me yet.  Some days I am a little too busy, and then I pay for it the next few days.  But I feel like each day I grow just a little and am hoping that little by little I will again find my purpose.  Blessings and love to you!

Optimist or Realist?

A few weeks ago, our Mended Hearts chapter had a psychologist that came and spoke on "Keeping a Positive Outlook Throughout Heart Disease."  I was surprised when she showed statistical data that "optimists" had a 67% shorter hospital stay than normal patient. She submitted that optimism was a character trait that some people are gifted with and yet others have to work to attain the quality.

As I was listening, I began reflecting on myself and whether I am an "optimist." NOPE. But I like to think of myself as a "realist." Throughout my illness, I have always tried to prepare myself for the worst while thinking that if the best happens, that's great! In my mind, I felt pretty positive that my "realist" mental state was the best it could be and that by being an optimist, you are sort of sticking your head in the sand and ignoring how dire heart failure truly is. But then she continued...

She defined optimism as "ANTICIPATING THE BEST RESULT GIVEN THE CIRCUMSTANCES." She argued that you can't ignore the surrounding factors, but that you could CHOOSE to anticipate a good result. Hmmm.

She gave an example. When you are cut off in traffic, you have a response. Those of you like me (and I know most of my friends and family are) would shake a friendly fist at the guy while yelling under your breath. She pointed out that when you do this, your blood pressure rises, your heart rate increases, your mood changes, etc. She argued that if in our minds we could give the guy the benefit of the doubt, that maybe he has an emergency, maybe he has had a truly terrible day, or maybe he just made a mistake (like all of us have) that we can actually bring down our heart rate, our blood pressure, etc.

This got me thinking. Of course first there was a verse that came to mind that states, "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." Isaiah 4:8. I always interpreted this verse to mean that we should keep our mind focused on the good and not the bad. On love and not hate or revenge. On compliments and not insults. On hope and not despair. On blessings and not wants.

Next on my mind was the evidence that simply anticipating getting better and out of the hospital, actually made people better faster than those of us that were prepared to stay in the hospital as long as it took to get better. Hmmmm.

So, I am now trying to adjust my thinking slightly. To believe that my heart will continue to recover. To believe that my husband and I will have a long future together. To believe that we will see our dreams of travelling over seas fulfilled. That somehow and some day we will be able to expand our family. But most of all, that we will grow into the people that God has called us to be and that no matter our circumstances, we will serve Him.

My Story

Today I was writing this short recap of my journey with heart failure, and I thought you might like to read it to remember how great is the love that God has for us.

My name is Melissa. In March 2009 my husband and I went on a cruise to celebrate a huge promotion I had just been given. Little did we know that less than three weeks later, I would not be able to walk the six blocks from my office building to the parking lot without gasping for air and clutching my chest. At 31 years old, I was diagnosed with cardiomyopathy - Congestive Heart Failure. Within two months, it progressed to end-stage. June brought us the news that the only chance at surviving was to get a heart transplant; however, I was too sick for the transplant (the pressures in my heart and lungs were too high). So, in August 2009 I had a Left Ventricular Assist Device (LVAD) implanted through open-heart surgery to help my heart pump blood.

Imagine the feeling of being 31, wanting nothing more than to become a mother, and undergoing your first surgery - open heart. It was scary. It was painful. But there was a peace in knowing that God works all things together for good in some way... even if that meant my death. I was surprised at how much strength came daily from my husband, family, friends, and prayers. We learned to live one day at a time and not to worry about the next day.

In December I was finally well enough to be placed on the heart transplant list. On January 11, 2010 a heart became available for me and I was taken to the operating room. While on the table, the surgeons did one last scan of my heart and found that my own heart had begun to heal.

When I woke up after the surgery, I heard the nurse say, "It's a miracle!" And I thought to myself, "I do feel better than I thought I'd feel having my heart cut out and another one sewn in." And then entered my husband, who was always by my side. He told me the news. I didn't get that transplant because my own heart had started healing. Wow!! Next, I made him tell me again, I made my mom tell me, I made my sister tell me, I just wanted to hear it over and over again.

A few months later in September 2010, I became the first person at my hospital to ever have their LVAD removed. That was over a year and a half ago. Every day I wake up with a new appreciation for life and am learning to take each day one step at a time. I have learned an incredible lesson first-hand: MIRACLES DO HAPPEN. If only we could remember that in the most bleak of situations. Dawn always comes after the night. Beauty can be brought from ashes.

It's Official - No Longer On the Heart Transplant Waiting List

This morning I received a call from my doctors telling me that they think I am doing so well that I can be removed from the Heart Transplant Waiting List. Previosly I have been in an "inactive" status.  My doctors wanted to wait and see how I did after explanting the LVAD.  So, 16 months after explant I am well enough to be removed from the list. What an amazing hurdle! I am so blessed. Thank you to everyone who has journeyed this time with me. I certainly could not have done it without each of you. YEAH!!!

Doctor's Visit

Last week I had an appointment with my cardiologist and to have my pacemaker/defibrillator interrogated.  Excited to report that all seems well.  Just one minor run of Vtach in over 5 months... That's pretty awesome. My doctor adjusted a few of my meds and tweaked my pacemaker down a bit.  The bad news is that she put me on fish oil. YUCK!!

She also ordered an echo (ultrasound) of my heart at our next meeting in June. But she said that my feeling well is what is really important.  I am so thankful for my medical team and the way they have helped me get back to a semi-normal life. 

This week has brought with it the loss of several of my friends loved ones. Yesterday I was talking with some friends that were feeling a little discouraged at how many of the people around them have passed away.  It reminded me of how precious time with loved ones is and how each of us does not know the time when our life on earth will come to a close.  It strengthened my resolve to be so thankful for each day and to try to make it count. Thank you to every precious person in my life. This past birthday week was an incredible one!! I am so blessed.

Money Can't Buy Me Love

This year one of my New Year's resolutions was to read through the Bible in a year. Earlier this week in my reading Jesus told the story of a manager who knew his boss was going to fire him so he brought in the people who owed money to his boss and reduced their payback amounts. The Bible praised this man for using money to make friends but I was confused because I like justice (not just because it's my name) and it seems to me this was a horrible and dishonest manager.

I also couldn't help recalling a cheesy movie from the 80s with Patrick Dempsey (Can't Buy Me Love) and I was questioning why Jesus would be encouraging us to use money to buy friendships. And it took me a few days of meditating on this to find the answer.

See, it's not about "buying friends" it's about having a heart to help and bless others. If we are willing to give of our time and money to others that need help or maybe just need a small blessing, then hopefully along the line others will recognize that goodness in our hearts and want to be a part of our lives. And most of all, we will be proud of ourselves for having a more selfless heart.

It's interesting because my mom is one of the most giving people I know. And I admire her for it, but of all the habits I picked up from her, this isn't one of them. I do love to help others but I think perhaps I have used my illness as an excuse to curl into myself the past few years and not give back as much as I know I can.

So, I can't wait to start giving out time and money. (That doesn't sound quite right, but you know what I mean.) Join me in helping or blessing someone else today and becoming someone we can be so much more proud of! (Sorry Mom for ending my sentence in a proposition.) :-)

Not-Transplant Day

I often refer to Jan 11, 2010 as "not-transplant day." In reality, every day for me so far has been not-transplant day and every day I am so thankful for the healing God gave me; however, that day was a very special day...

Do you ever have those days when you feel insignificant or forgotten? Truthfully, that's how I felt when I got sick. I knew God had a plan, but I was broken and praying daily for the strength and grace to make it through the day. Then Jan 11, 2010 happened. I remember my sweet mom hobbling into my hospital room telling me she was so excited that she slipped on the ice and sprained her knee. But she didn't care - she wanted to be there. I remember my husband by my side, my brother and dear sisters. My cousin, aunt, best friends, and the staff at OSU that had become like family to us. How very important I felt that day. Not just because God healed me, but because He surrounded me with such a multitude of amazing people in my life. A special two-year thank you to all those that shared that day with me. I have oft told Ray it was a perfect "last" day if it had been my "last" day. But amazingly, it is just a perfect memory!! Praise be to God!

Christmas is Over Charlie Brown...

Sorry that I have been a little non-existent here on the blog for a while. Like so many this season we were busy with all the things we love - baking cookies with many nieces and nephews; eating; choir cantatas and parties; eating; family get togethers; shopping; eating; zoo lights; and did I mention eating?!?!

This season I have been so grateful for my family and friends. A few weeks before Christmas, my friends started confiding in me with their difficult situations. This may seem small, but it has been years since my loved ones have been able to lean on me. See, when you are sick everyone is afraid to add to your plate. And I am so thankful that I am now strong enough to help encourage them through tough times. So, for those of you that had a rough Christmas season, may God bless you in this new year.

Aren't you so happy for new beginnings? I have been thinking all week of all the things in my life that I would like to change. For example, this weekend Ray and my sister and I were playing a game and it asked us to share 3 things that we are really good at. In the past, that would've been easy for me. I was a leader at church, a good musician, very level headed and sensible, I tried to be an excellent manager at work, was a terrific communicator, etc. But more then just my health changed with the diagnosis of heart failure. I am not the person that I used to be before I was sick. Although I have regained a lot of my health, I cannot go back to being who I was. In addition, my mind was radically changed through all the surgeries and hospital time and I can no longer think or remember things the way I used to. I no longer know how to handle stress with ease. It is tough for me to concentrate on activities for too long. I am easily angered and annoyed. My lungs hurt when I try to play the trombone or sing. And I am no longer in charge or in control of anything in life.

On the flip side, I have learned to smile through the storm. Learned to depend solely on God's strength to carry me through the day. I have a deep appreciation for every moment with the people I love doing things I love to do. I am more caring, thoughtful, and encouraging to those facing hard times.

So, when you take the good with the bad, I am thankful for the growth I have had but frustrated that I feel a little unimportant or not as useful... Then this morning I was reading in Genesis when the Lord was talking about the earth being filled with violence and He was so angry that He wanted to destroy it - until He considered Noah, who was a "righteous man." And because of that one righteous man, God saved mankind. WOW!

So the rest of my day today will be spent thinking of ways that I can be more "righteous" and praying that somehow and in some way, God will find favor with me and hopefully be able to use me for His glory. Praise be to Him!