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Author Archive for Carley

New Normal

Well, if you have been around anyone who has had a life altering health issue you have probably heard the term “new normal” quite a bit.   That seems to be the way to communicate what is otherwise hard to put into words.  Many people (friends, family, all those who have loved on us and prayed for us so faithfully) have asked me how I am feeling and doing and it is such a hard question for me to answer.  That is part of the reason why it has taken me so long to write another blog entry!  As a rule I am one of those personalities who struggles to always know exactly how I am feeling on the inside and I also tend to be somewhat ignorant of what is going on with my body as well.  I guess that can be a blessing and a curse!  As much as I can tell, though, I am physically doing really well and I am so thankful!

My biggest adjustment so far has been remembering to ease into physical activity because my nerve endings were severed when my old heart was taken out so it takes some time for my brain to compute when my heart is working harder.  Once I am warmed up, though, I am encouraged to see and feel the ease to which my body and heart is working.  It feels good to exercise and work out my lethargic muscles!  The hardest thing I am experiencing in my new normal is the effects of the prednisone steroid.  Thankfully that drug is not one that I will have to continue long term so I will get a new “new normal” once I have tapered off of it.  But for now I seem to have fully acquired the jowls or chipmunk cheeks and puffy shoulders and arms that usually accompanies the drug :(.   I am amazed that after all I have been through I still go right back to struggling with my vanity!  But I see that human nature is what it is and contentment will always be something we have to work at no matter what our circumstances are.  So for now I have to be happy being puffy!

The best thing about my new normal is that I have a very strong heart!  My ejection fraction ( the fraction of blood ejected from a ventricle of the heart with each heartbeat) is now over 70% and it was 26% with my old heart.  The average heart pumps at about 60% so I am thrilled by this number!  I finally have blood going to my brain again so I am hoping that will improve my memory and overall brain power!  I was starting to feel like such an air head for a while there!  And since the blood is coursing readily through my veins I don’t look like I should be part of the cast of the Twilight Movie.  I was sobered to learn that my old heart was definitely worn out and my doctor said it had about 6 months left before it gave out completely.  That is a mind blowing thing to hear and just makes me so thankful for the sacrifice of the family who agreed to give their loved one’s organ to me.  It is sobering and surreal.

And that is the main thing I find myself telling those who ask me how it feels.  It feels surreal.  Almost like a dream.  I can’t believe I spent over 3 months in the hospital waiting on a heart donor and then had a HEART TRANSPLANT!  WHAT?!  Seems so crazy and hard to comprehend.  Yet here I am and I have been given a second life, so to speak.  Now what?  That can feel very daunting and yet very exciting as well.  I try not to get overwhelmed at the thought of it and just focus on staying healthy and being thankful for everything.  No matter what part of the journey I have been in I realize that my perspective must remain on God and His faithfulness to me.  That is the only chance I have at being content and living a full and abundant life!

Yesterday  I had my 5th biopsy and am waiting to hear the results.  Up until now I have had 0% rejection of the new heart and I am expecting the same results from yesterday.  My pressures are good and I am feeling healthy.  The prayers of so many have been heard!  We continue to be so humbled and grateful for the many, many wonderful people who have supported us in prayer and finances and emotional support.  Thank you!  I feel very blessed and thankful to be living this “new normal”.

New Normal

Well, if you have been around anyone who has had a life altering health issue you have probably heard the term “new normal” quite a bit.   That seems to be the way to communicate what is otherwise hard to put into words.  Many people (friends, family, all those who have loved on us and prayed for us so faithfully) have asked me how I am feeling and doing and it is such a hard question for me to answer.  That is part of the reason why it has taken me so long to write another blog entry!  As a rule I am one of those personalities who struggles to always know exactly how I am feeling on the inside and I also tend to be somewhat ignorant of what is going on with my body as well.  I guess that can be a blessing and a curse!  As much as I can tell, though, I am physically doing really well and I am so thankful!

My biggest adjustment so far has been remembering to ease into physical activity because my nerve endings were severed when my old heart was taken out so it takes some time for my brain to compute when my heart is working harder.  Once I am warmed up, though, I am encouraged to see and feel the ease to which my body and heart is working.  It feels good to exercise and work out my lethargic muscles!  The hardest thing I am experiencing in my new normal is the effects of the prednisone steroid.  Thankfully that drug is not one that I will have to continue long term so I will get a new “new normal” once I have tapered off of it.  But for now I seem to have fully acquired the jowls or chipmunk cheeks and puffy shoulders and arms that usually accompanies the drug :(.   I am amazed that after all I have been through I still go right back to struggling with my vanity!  But I see that human nature is what it is and contentment will always be something we have to work at no matter what our circumstances are.  So for now I have to be happy being puffy!

The best thing about my new normal is that I have a very strong heart!  My ejection fraction ( the fraction of blood ejected from a ventricle of the heart with each heartbeat) is now over 70% and it was 26% with my old heart.  The average heart pumps at about 60% so I am thrilled by this number!  I finally have blood going to my brain again so I am hoping that will improve my memory and overall brain power!  I was starting to feel like such an air head for a while there!  And since the blood is coursing readily through my veins I don’t look like I should be part of the cast of the Twilight Movie.  I was sobered to learn that my old heart was definitely worn out and my doctor said it had about 6 months left before it gave out completely.  That is a mind blowing thing to hear and just makes me so thankful for the sacrifice of the family who agreed to give their loved one’s organ to me.  It is sobering and surreal.

And that is the main thing I find myself telling those who ask me how it feels.  It feels surreal.  Almost like a dream.  I can’t believe I spent over 3 months in the hospital waiting on a heart donor and then had a HEART TRANSPLANT!  WHAT?!  Seems so crazy and hard to comprehend.  Yet here I am and I have been given a second life, so to speak.  Now what?  That can feel very daunting and yet very exciting as well.  I try not to get overwhelmed at the thought of it and just focus on staying healthy and being thankful for everything.  No matter what part of the journey I have been in I realize that my perspective must remain on God and His faithfulness to me.  That is the only chance I have at being content and living a full and abundant life!

Yesterday  I had my 5th biopsy and am waiting to hear the results.  Up until now I have had 0% rejection of the new heart and I am expecting the same results from yesterday.  My pressures are good and I am feeling healthy.  The prayers of so many have been heard!  We continue to be so humbled and grateful for the many, many wonderful people who have supported us in prayer and finances and emotional support.  Thank you!  I feel very blessed and thankful to be living this “new normal”.

New Normal

Well, if you have been around anyone who has had a life altering health issue you have probably heard the term “new normal” quite a bit.   That seems to be the way to communicate what is otherwise hard to put into words.  Many people (friends, family, all those who have loved on us and prayed for us so faithfully) have asked me how I am feeling and doing and it is such a hard question for me to answer.  That is part of the reason why it has taken me so long to write another blog entry!  As a rule I am one of those personalities who struggles to always know exactly how I am feeling on the inside and I also tend to be somewhat ignorant of what is going on with my body as well.  I guess that can be a blessing and a curse!  As much as I can tell, though, I am physically doing really well and I am so thankful!

My biggest adjustment so far has been remembering to ease into physical activity because my nerve endings were severed when my old heart was taken out so it takes some time for my brain to compute when my heart is working harder.  Once I am warmed up, though, I am encouraged to see and feel the ease to which my body and heart is working.  It feels good to exercise and work out my lethargic muscles!  The hardest thing I am experiencing in my new normal is the effects of the prednisone steroid.  Thankfully that drug is not one that I will have to continue long term so I will get a new “new normal” once I have tapered off of it.  But for now I seem to have fully acquired the jowls or chipmunk cheeks and puffy shoulders and arms that usually accompanies the drug :(.   I am amazed that after all I have been through I still go right back to struggling with my vanity!  But I see that human nature is what it is and contentment will always be something we have to work at no matter what our circumstances are.  So for now I have to be happy being puffy!

The best thing about my new normal is that I have a very strong heart!  My ejection fraction ( the fraction of blood ejected from a ventricle of the heart with each heartbeat) is now over 70% and it was 26% with my old heart.  The average heart pumps at about 60% so I am thrilled by this number!  I finally have blood going to my brain again so I am hoping that will improve my memory and overall brain power!  I was starting to feel like such an air head for a while there!  And since the blood is coursing readily through my veins I don’t look like I should be part of the cast of the Twilight Movie.  I was sobered to learn that my old heart was definitely worn out and my doctor said it had about 6 months left before it gave out completely.  That is a mind blowing thing to hear and just makes me so thankful for the sacrifice of the family who agreed to give their loved one’s organ to me.  It is sobering and surreal.

And that is the main thing I find myself telling those who ask me how it feels.  It feels surreal.  Almost like a dream.  I can’t believe I spent over 3 months in the hospital waiting on a heart donor and then had a HEART TRANSPLANT!  WHAT?!  Seems so crazy and hard to comprehend.  Yet here I am and I have been given a second life, so to speak.  Now what?  That can feel very daunting and yet very exciting as well.  I try not to get overwhelmed at the thought of it and just focus on staying healthy and being thankful for everything.  No matter what part of the journey I have been in I realize that my perspective must remain on God and His faithfulness to me.  That is the only chance I have at being content and living a full and abundant life!

Yesterday  I had my 5th biopsy and am waiting to hear the results.  Up until now I have had 0% rejection of the new heart and I am expecting the same results from yesterday.  My pressures are good and I am feeling healthy.  The prayers of so many have been heard!  We continue to be so humbled and grateful for the many, many wonderful people who have supported us in prayer and finances and emotional support.  Thank you!  I feel very blessed and thankful to be living this “new normal”.

Home

Sigh!  It is so good to be home!  It has been a week and 3 days since I arrived back home from the hospital and it already feels like longer.  It was so good to come in that door and just walk around my home taking it all in and being thankful.  The first week has been full of adjustments and healing and resting.  My body was so tired and bruised and swollen and has just needed time to heal.  My mind was restful at first and I just sat on my sofa relishing the fact that I was home.  It  took about one day for my nesting instincts to take over, though,  and I began trying to organize closets  and purge excess stuff ( the things I do as my stress response!) so I quickly wore myself out and crashed regularly!  I am definitely not the best at taking it easy :). For those who know me well I know what you are thinking!!!

I had my first weekly biopsy on Tuesday and it came back at 0% for rejection so we are very thankful!  That is the main thing at this point that we have to be concerned with.  Rejection and Infection are big bad words at our house for sure.  So I wash my hands a lot and wear a mask when I go anywhere.  I have to exercise daily so I have ventured out to Target and Publix so that I can walk where it is cool.  The thought of walking outside in Jacksonville Summer heat and humidity is about as appealing as wearing an wet sweatshirt!  Plus I still have staples in my incision and that doesn’t go well with heat either.  I should get those out next week.

I started rehab at Mayo on Friday and will do that 3 days a week.   They have me exercising every day and beginning to do strength training every other day.  I mostly feel good but just still tire easily.  My pain gets better every day and I have mostly experienced discomfort at the place of incision and where they broke my sternum as well as some soreness in my shoulder due to the way I was positioned in surgery.

Emotionally, I think I am doing well.  As I look back on the last several months I feel like I have been in a dream.  Everything feels so surreal.  It’s hard to get our brains around all that has taken place and hard to believe that I have someone else’s heart beating inside of me!  What a miracle!  What a crazy, crazy miracle!

I am on a whole smorgasbord of medications that will eventually taper off apart from the two anti rejection meds I will take for life.   I am so thankful to say that my body seems to have adjusted to them well and the side effects are minimal.  We are so grateful for the countless prayers of so many people. and feel God’s blessing and grace and favor toward us in all of the many details.

One of the verses in the Bible that has stood out to me during much of this experience has been one that is very familiar to many people.  Proverbs 3:5-6 “Trust in the Lord with all your heart and do not lean on your own understanding.  In all your ways acknowledge Him and He will make your paths straight.”  I can wholeheartedly say that  I have lived the truth of this promise!  He has been so faithful!  But His ways are so different than ours most of the time that I rarely can make heads or tails of it by just looking at the raw circumstances.  It almost always requires faith to believe that God is doing something, more likely many things, that I cannot see or even understand.  I look forward to catching more glimpses of some of those things in the days and weeks to come!

 

 

Do Not Surrender

Today is day 97 of my stay here at Mayo Resort!  I am amazed by this fact and yet I know it could be a lot longer.  As I have been seeking perspective these last few weeks since my “almost got a heart” experience I have been reading a historical fiction book called “Strength of His Hand” by Lynn Austin that was given to me by a friend.  This is one book in a series that tells the story of King Hezekiah found mostly in the Chronicles and Kings books of the Bible.  As I was finishing the book today  one of the things that stood out to me the most was King Hezekiah’s determination to not surrender Jerusalem to the Assyrian army.  So many times before fear had caused Hezekiah and his father, who was king before him, to compromise and give in to the enemy because his situation seemed so helpless.  King Hezekiah had done everything humanly possible to protect Jerusalem from attack and yet he found himself overrun with Assyrian soldiers partly due to his decisions made in fear rather than trust.  Having seen what happened before when he relied on his own strength and plans, this time Hezekiah was determined to trust God and would not surrender to his enemies.  Several times they demanded his surrender and those around him advised him to surrender but he finally had learned his lesson.  Hezekiah did not surrender because he trusted God to do what He had promised.  And God did do what He promised.  He did what only God can do and struck down the Assyrian soldiers causing them to die right outside the walls of Jerusalem.

The reason I am telling you this story is because I was considering how easily my thoughts can move from trust to fear and doubt.  Many times I so quickly take God out of the equation and let those negative thoughts and emotions rule me.  So I am inspired by King Hezekiah’s decision not to surrender to those things but instead to surrender to the God who made me and trust in His plan. As Jesus said in Matthew 19:26  “…With God all things are possible.”  I am reminded that in my life when I have been bold enough to trust God rather than myself I get to see great things happen, more than I could ask or imagine.  I am trusting and believing that I will one day look back on these months and see how God did just that!

written on June 13th, 2017

Patience

To be honest, I really hoped and thought I would have a heart by now.  It is disappointing, to say the least, that I am still here waiting.  Every day I struggle between the strong desire for God to answer this prayer we are all praying and the knowledge that there is another family that is involved here and God is doing something  in their lives as well.  So I have to regularly talk myself back into perspective and choose to be patient.

I am 68 days into my wait here at Mayo Jacksonville in case anyone is wondering.  The days go by really fast thanks to many friends and family visits,  walks outside, exercising, books and magazines I’ve been given and doing lots of homework with my son 🙂  The nurses are wonderful and I love the doctors here as well.  They are keeping me stable with some tweaks to my medications and overall I am doing well.  So really I can’t complain at all about anything except that I just want to go home!

Waiting on the unknown is daunting.  Yet when you know that God is in control and you are waiting on Him for His best, there is solace in that waiting.  In Isaiah 40:30 it says “those who wait for the Lord will renew their strength;  They shall mount up with wings like eagles;  they shall run and not be weary;  they shall walk and not faint.”  I am seeking to submit to this truth every single day that I am here.  Some days are definitely better than others!

 

 

 

40 Days and 40 Nights

I can now relate somewhat more accurately to Noah, I think!  No, I am not stuck on an ark with a bunch of stinky animals sitting on a mountain waiting for the waters to recede.  But I am stuck in a hospital with a bunch of sick people waiting on a heart!  There are a few similarities, right?!  Neither are predictable experiences and both require a lot of patience.  Both are a work of God and will happen in His timing alone.  But there is an end in sight, thankfully, and I know it won’t last forever so there’s that!

Isaiah 40:31 says “But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”

This is a promise from the Bible spoken by the prophet Isaiah to God’s people.  Because His promises are meant for all time I can trust in them for me as well!  Right before that verse it says why…v. 26 “Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth.  He does not faint or grow weary; his understanding is unsearchable.  He gives power to the faint, and to him who has no might he increases strength.”

Because of that promise, on day 41 of my hospital stay,  I can rest in peace knowing that I am right where I am supposed to be and will remain here until the right time.  That God’s power is my source for strength.   And when that right time comes I will be able to once again run and not be weary and walk and not be faint thanks to the sacrificial provision of a “new” heart!

For Better or Worse

My Best Friend and Love has a birthday today so I thought I would write this post in honor of him!  He is 45 years old today and has spent almost 20 of those 45 years loving and caring for me as his wife.  What he didn’t know when he said those famous words “I do” and “for better or for worse, in sickness and in health, till death do us part” was that God would most certainly put that vow to the test!   It is easy when you are in the throes of a wedding and the fairy tale romance to believe wholeheartedly that it will be a natural and easy thing to commit your life to this beautiful person.  The thought of caring for one another has a very sweet and romantic feel to it and you say those words with so much warmth and feeling.  But as any of you who have been married for any amount of time know that the romance and good feelings come and go and those vows you made become really important!

Well I sure have done a good job of testing Joe’s vows to me over the years!  Most of you know that I had breast cancer in 2006-2007 where Joe cared for me through several surgeries, chemo and radiation while we had small children to raise and he had a demanding job.  Now, ten years later, he is asked to step up to the caregiver role yet again as I have been diagnosed with heart failure and am waiting to receive a heart transplant.  I am so thankful for his love for me and how committed he is to being there for me and loving me through this difficult time. God has used these experiences and many others in our marriage to solidify our commitment to one another.  It has not been easy at all- even in the midst of suffering we are still both sinners and become prideful, selfish, moody etc. and we have to work hard to forgive.  But because of God’s grace in our lives, we do forgive.  And our marriage grows richer with every challenge.

I am so thankful to God for giving me a husband who loves Him with all of his heart, soul, mind and strength.  A man who makes me laugh at his silly antics, who hugs me every time he sees me (literally!) and who doesn’t stop telling me how much he loves me and wants to be with me.  I am thankful that he is able to recognize his mistakes and ask for forgiveness and he forgives me every time I ask him to.  I know that God gave us especially to each other because we fit so well together and life is so much fuller because of our relationship with each other.

Thank you God for giving Joe to me for these 20 years and for creating him and making him yours before he was mine.  Happy Birthday Joe!  I love you.

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Brave

When I went through breast cancer treatment ten years ago and now as I go through this experience of waiting for a heart transplant, some have asked me “how do you do it? “.   Some have commented on how strong I am.  I always find myself feeling a bit unarmed for an answer that would communicate what I experience.  I have recently heard a song that has been a favorite during this season I have been in.  The answer to the question posed earlier is really more about what I don’t do than what I do.  The strength that some may see in me comes from my relationship with God.   That is why I loved this song the first time I heard it!  It speaks to the fact that what I have to do is trust and believe that God is for me and has my best interest at heart.  What I have learned all of these years of studying the Bible and growing in my relationship with Him comforts me and gives me hope.  Not hope in better circumstances or even hope in good health with a new heart, but hope in God.  I know this is hard for those who don’t know Him to understand but it is true all the same.   His promises are enough.  And I am only as strong as the One I lean on.  I have written the words to the song I spoke of below and put a link to it at the bottom  so that you can hopefully enjoy it as much as I have!

 

I stand before you now

The greatness of your renown

I have heard of the majesty and wonder of you

King of Heaven in humility I bow

As your love in wave after wave

Crashes over me, crashes over me

For you are for us, you are not against us

Champion of Heaven you made a way

For all to enter in.

I have heard you call my name

I have heard the song of love that you sing

So I will let you draw me out beyond the shore

Into your grace, your grace.

As your love in wave after wave

Crashes over me, crashes over me

For you are for us, you are not against us

Champion of Heaven you made a way

For all to enter in.

You make me brave, you make me brave

You call me out beyond the shore into the waves

You make me brave, you make me brave

No fear can hinder now the promises you make.

You make me Brave!

by Amanda Cook and Bethel Music

 

http://www.songlyrics.com/bethel-music/you-make-me-brave-lyrics/