Beyond the Clouds

From Ashley’s mom.

As you know, my sweet Ashley was admitted to Duke Health Center one week ago. She was in congestive heart failure and had more than 15 pounds of fluid on board.

More than 3-years ago before Ashley’s first heart transplant, I remember that my husband Greg and I went to the altar at Garris Chapel UMC and gave Ashley to GOD. We knew there would be many challenges. But if I am being honest, I sure didn’t think we would be where we are today. But we decided to trust GOD then and we will continue to trust GOD now.

The doctors have worked with medicine adjustments trying to help her heart pump stronger and also to help her kidneys work better. We were told the first day that Ashley would be in the hospital until ….. 2nd TRANSPLANT. During the past week, Ashley lost all that fluid weight and has been walking around the 5th and 7th floors, smiling and at peace as we move further along her 2nd heart transplant journey. Because Ashley seemed to be doing well, I sneaked home for a day. Well, as things would happen, Ashley’s kidneys really weren’t happy and have worsened today. So, the doctors have decided to go forward with an aortic balloon pump. The balloon pump will be placed via a catheter in her groin. Ashley will be restricted to laying flat and will also be required to stay in CICU. Ashley has always visited with others when at Duke, encouraging and inspiring many. Her smile is always bright. And, I know her joy comes from THE LORD. So laying flat for days, weeks, months, until ….. will be very difficult for her. Please pray Psalm 46:10, that GOD will give Ashley peace and calmness as only HE can.

As I was driving back to Duke this afternoon, there were many storm clouds around. But, as I listened to HIS Radio, I noticed behind the dark clouds, the sun glistened off the top of them. Once again I realized that no matter the storms in our life, GOD is always with us. Please take time each day to tell those close to you that you love them, hug those children, share kindness with others, look for GOD things, and count your blessings.

So as I say good night, I will TRUST IN THE LORD WITH ALL YOUR (MY) HEART, Proverbs 3:5.

And, I would ask that you whisper a prayer tomorrow for Ashley, for all of our family and for the doctors and nurses caring for us.

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Lost in the Wilderness…

Last Sunday I went to “Max out the Max” and listened to Jon Jorgenson’s wise words to us. Many of you may have never heard of Jon Jorgenson but he has dedicated his life through a YouTube ministry by sharing God’s love with others and encouraging us through life. In the worship service, he said that we experience seasons of wandering through life. Since my last blog, a lot has gone on in my life. From being depressed and frustrated, feeling that nothing else can be done to help me to going on my Make-A-Wish trip and getting some really exciting news.

There have been many times that I have felt lost in my own wilderness and felt there was no other way. I did not know what path to take or what I needed to do to make the best out of what was happening. But God doesn’t waste our wilderness. I found many times where I asked God why didn’t He send me the perfect heart the first time. But, after listening to Jon Jorgenson I should be asking God, “How is He going to use my current situation to prepare me?” I am here to tell you that no matter what you are going through that God uses every experience, every disappointment, every fear, every anxiety, every tragedy, and every joy to prepare us for what we are going to face in life.

As I said, I have been very down and depressed lately feeling like I cannot lose the weight I need to in order to get relisted for a second heart transplant. I have found myself very frustrated at myself because I feel I am not doing enough to lose weight…but I can only do so much. I am still taking many medicines, some of which make it difficult to lose weight and causes fluid retention. And, as my heart weakens, I am tired most all the time and sleep between 12 – 15 hours a day. But through all this depression and frustration, I have seen God’s grace. I have been reminded that God never leaves us alone. He is always with me. Deuteronomy 31:6 says “Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” I AM going to continue to fight.

God sees and knows all and He knew just what I needed. My escape came as a Make-A-Wish trip was granted. Many of you may remember that my family was supposed to go to Hawaii last year for my Make-A-Wish when I went into rejection and ended up in the hospital. Make-A-Wish worked to re-schedule the Hawaii trip but as my heart got weaker, I realized that I would not be able to make such a trip. To my surprise, Make-A-Wish contacted my mom saying that they still wanted to grant me some kind of wish. With help from the ACC Conference, Make-A-Wish sent me and my family to the ACC Men’s Basketball Tournament in Charlotte, NC. What an AMAZING experience!!! From getting to go behind the scenes to seeing my team, the Duke Blue Devils win the whole thing. Duke didn’t give up and last night, Virginia didn’t give up and won the NCAA tournament. Congrats to the Virginia Cavaliers and especially Coach Tony Bennett! (See Picture Below) I just love ACC basketball! I will post some pictures at the end. But I want to thank Make-A-Wish and the ACC Conference for making my wish come true.

As I know my heart is getting weaker, that Make-A-Wish trip allowed me to kind of escape everything that is going on. Since then, I have had a few weeks that I really didn’t feel well and was dizzy a lot. I know that I am in a race against time. But in this life journey, I have learned so many things and my faith has gotten even stronger. I still struggle with frustration, I get discouraged, and sometimes I’m afraid. Sometimes we can’t see “how” or understand the “why.” But, even on the days that I struggle that’s when I just choose to trust God and then I pray even more.

Well, many of y’all know that I had applied for nursing school at the University of North Carolina at Greensboro and got a letter stating I was on the waiting list. I was very disappointed but my family and many others told me to keep my head up. I began to think about what I was to do next with my life since I didn’t get into the nursing program. You see, my dream has pretty much always been to become a nurse to help other sick kids with heart issues like me. So, what was my future going to look like now? But God’s grace never fails and He does not waste our wilderness. You see, a little more than a week ago, I got a call from the Associate Dean of Nursing at the University of North Carolina at Greensboro saying that I had been accepted into the nursing school for the class of 2021. Since I am needing to focus all my attention of my heart journey right now, UNC-G has allowed me to defer for a year and hold my spot in their nursing program. So, I will join the Nursing Class of 2022 at UNC-G. I could not be more excited to embark on this new journey with a NEW Heart. God is so good and I thank Him everyday for all the good things in my life.

So, as Christians, what is it that we are supposed to do when we are faced with frustrations, are afraid, confused or lost? I believe that God wants us to trust Him. He wants us to surrender to Him. Aren’t we supposed to give Him our everything and let Him control our thoughts, our words, our actions, and our future? As I wrote in my last post, Jeremiah 29:11 says ……. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” I know God loves me, even when I can’t see Him working in my life at a certain moment. We all have a choice to make…..choose to control our own lives and probably mess it up or LET GO AND LET GOD!!! I have learned through my journey that no matter how bad I want to control my life and do things differently that I can’t. I must surrender it all to God. I must give Him my everything. As Jon Jorgenson said “God never wastes our wilderness.” I choose to trust Him!

 

God is ALWAYS Faithful…

With every morning, God gives us a new day. It really is a gift. But so often we let our circumstances determine our day. My question is “Why?” I believe that sometimes things happen and instead of asking “why?,” maybe I should ask “What?” God, what am I supposed to learn from this? Or, maybe, how can I praise God and glorify Him in my circumstances. God never promised us the way would be easy, but He did promise to always be with us….even in our circumstances. My life verse is Isaiah 41:10 given to me by Pastor Jerry Mitchell. “So 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 right hand.” Even on our tough days, God loves us. We just have to choose to trust and believe. God gives us an opportunity to make each day special. We can find strength and peace in God’s word. We can choose to show God’s love to someone else. We can be thankful. We can choose joy.

Since the last time I posted, there has been a lot going on with my health and life. My life has become very uncertain. You may remember from my last post that I had been in and out of rejection several times during the last year. Because of this rejection, my medicines were constantly being adjusted. I ended up on higher doses of prednisone which was causing my body to retain fluids and as my heart was struggling more, I just had little energy. My pediatric heart transplant team knew something wasn’t right and that was when they discovered that my right-side coronary arteries had spontaneously dissected. It was then that I knew I would have to have another heart transplant sooner rather than later. Needless to say, all of this was overwhelming, frustrating and even scary. I didn’t understand then and if I am honest, I still don’t. But, Romans 8:28 says, “For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher that the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

As things stand now, I have met with the Adult Heart Transplant team 2 different times now. With the progressing coronary artery disease, the doctors have made it very clear that the only option I have is another heart transplant. However, the problem is that with the increase in my weight and the inability to exercise much, I can not be relisted for transplant. I have lost about 20 pounds, but still need to lose another 10 pounds in order to get listed at Duke. I can tell that my heart has gotten weaker and I need to get listed. I am trying so hard. I need lots of prayers. It really is a race against time.
Since November, my family and I have done lots of praying, thinking, talking with doctors, and research to figure out what is the best option for me. I was having such a hard time with walking to classes that I have withdrawn from UNCG to focus on my health. I have also taken a leave of absence from work because it had just gotten to hard. These decisions about school and work were not easy for me, but I know that I made the right choices. My days now consist of walking 3 to 4 times a day to get 10,000 steps and taking naps. Because of the complexity of my case, Duke was attempting to get me referred to Vanderbilt Heart Transplant. However, we found out yesterday that Vanderbilt was not willing to accept me into their transplant program. So as of right now, I am still being taken care of by Duke.

I know each day is a gift and that GOD’s plan is perfect but it just doesn’t seem fair. So, some days I really struggle. It is a little overwhelming and even frustrating. I know GOD loves me and HE is a good GOD. I will choose to keep trusting HIM. I will never NEVER give up. Everything WILL work out in the right way and at the right time. Jeremiah 29:11 says ……. “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”
If you learn anything from me, remember that each day really is a gift. Choose to find the good! Choose to forgive! Find something to smile about. And, tell those in your life that are important to you that you love them!

This song was sung at my church and now holds a special please in my heart. The words relate to everything that I am going through and thinking, but GOD is ALWAYS FAITHFUL. Please listen to the words and I hope this song can help someone else that is in need of GODS grace and mercy today.

Love Life, Be STRONG, Don’t Give UP!!

Hey Prayer Warriors,
It’s been quite a while since I have blogged. In fact, I think the last time I blogged was after everything had gotten normal post-transplant in November of 2016. I wanted to believe that nothing was wrong but I have been reminded that having a heart transplant didn’t fix everything. It really is a journey. Just like our journey to the cross. In life, there will always be trials but I know GOD is with me. HE is in front of me guiding my way. HE is beside me holding my hand. And, HE is behind me to push me along. So here is a quick update on my heart journey. Many of you know I have been battling with rejection and not feeling the best for about a year now. With that said, about a month ago, I started feeling worse. I started retaining more fluid, having upper abdominal pain, and in the last couple of weeks noticed that I was short of breath when walking to class. This past week, it was to the point that I did not even want to go to my college classes because of how out of breath I was when I got there. After calling Duke, I was seen Friday, Sept. 29 and the doctor decided to increase some of my medicines and I was scheduled for a biopsy/cath on Tuesday morning. Going into the biopsy/cath, I was thinking I was in rejection again and would need to be admitted. Even though we didn’t get admitted, we did not get good news. I needed some time to come to terms and process what was going on before I posted anything to let everyone know. But, I have realized I need to continue to share my story. Or, I should say, share GOD’s story through my life. After the heart cath, the doctor said I have had spontaneous coronary artery dissection. Based on how and when I started hurting, probably developed in last couple of weeks. But, there really is no way to know. So, what this means is that the bottom right quadrant is no longer getting blood flow. For the first time, I have to admit that I am scared. I am struggling thinking that blood is not getting to part of my heart. This has definitely created a much higher level of concern. We are seeing the chief of adult heart transplant on October 9th to see what options are available. I currently have lots of restrictions. I can’t lift more than 5 pounds and I am not allowed to do any type of exercise. I currently have a lot going on and going through my mind. I would appreciate it if y’all would send up some prayers for me. I am trying to stay positive and found this Bible verse which is helping me. 1 Corinthians 16:13 “Be on your guard; stand firm in the faith; be courageous; be strong.” I am still at school and trying to accomplish my goals of becoming a nurse or child life specialist so that I can help other sick kids. GOD’s plan is Greater than anything I can even imagine! This is just another chapter as GOD continues to write HIS Story on my heart. As I needed some time to let things sink in this week, I got into my Bible. Here are just a couple of versus that Have Kept Me Strong. Mark 10:27 “Jesus looked at them and said, “With man this is impossible, but not with GOD; all things are possible with GOD.” And, one of my mom’s favorites …. Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD,” plans to prosper you and not to harm you, plans to give you hope and a future.”

I am a Warrior, a Fighter, and a Believer! I know that this may be hard, but I have to stay strong and positive. I cannot do this without GOD! GOD is not FINISHED with ME YET and I am not giving up anytime soon! He is my REDEEMER, my HEALER, and My ALL-POWERFUL SAVIOR! I know GOD’s got this! #GonnaKeepTrusting
This song is having developed a very special place in my heart the last couple of weeks! Please listen to the Words!

Please pray for us in the coming weeks as we search for answers. Until Next Time… remember that each day is a gift! Do something to share GOD’s love and shine for HIM!

Thanks!

THANKSgiving

Hey Blog Family,

What are you THANKFUL for on this Thanksgiving? I would love to see what all of you guys are THANKFUL for, so feel free to post something on here or on Facebook! I hope everyone has a wonderful Thanksgiving.  Enjoy your families and count your blessings.

I know I have not been very active with doing blogs, and I am sorry. Between school, work, lots of follow-up appointments at Duke, and having a low white count; it has been crazy.  But, I am very thankful for so many things this year.

Most importantly I am THANKFUL for GOD.  Our GOD is an awesome GOD.  I have a GOD of miracles.  GOD is so Good!  GOD sent His only son to die for each and every one of us. WOW!  Thanks to GOD I am saved and I know where I will be when I die. I thank GOD every day for giving me this journey so that I am able to witness to others about how good HE is. I never thought that GOD would give me the opportunity of getting a new heart, but HE has.  I cannot thank HIM enough for what HE has done in my life to show me that HE loves me!

I am THANKFUL for JESUS.  HE paid the ultimate price for every single one of us by dying and suffering on the cross. We do not THANK HIM enough for giving up HIS life for us. Every morning when I get up, I thank JESUS for giving me another day and I thank HIM for washing away all of my sins. None of us would have been able to do what JESUS did.  Each day, we need to be able to THANK HIM for the price HE paid and for loving us just so much.

I am THANKFUL for my parents. My parents have been amazing when dealing with everything. I am sure I won’t be able to fully understand until I am a mother.  I know that their FAITH in GOD is what has kept them going. They have always been there for me through the big things and the little things. My mom never really left me in the hospital and my dad took care of everything that needed to be done at home.   THANK YOU for always supporting me and being at all of my games, awards ceremonies, and etc.  I THANK GOD every day for blessing me with the very best parents I could have asked for. I don’t know how I would have gotten through this journey without you guys in my life. I LOVE YOU DAD AND MOM!!!

I am THANKFUL for my brother, Daniel. We may argue sometimes, but I am THANKFUL that GOD put you in my life. You have always been there whether I needed help with homework, wanted to talk to you, or even just to hang out. This journey has brought us so much closer together and I THANK GOD for that every single day.  I will be ok.   And, you will be OK too.   I just want you to TRUST GOD that no matter what happens IT’S ALL ABOUT HIM!!!  Jeremiah 29:11   Let’s keep sharing our story to praise GOD.  THANK YOU for being the best brother ever.  We have been through so much together with losing my twin Matthew, and with both of us being diagnosed with our heart conditions. But, we always know that there is something good that comes out of everything. Romans 8:28   LOVE YOU LOTS DANIEL!!!

I am THANKFUL for Caroline. We’re not sisters by birth, but we knew from the start that GOD put us together to be SISTERS BY HEART!!! I am so THANKFUL for you.   As I am writing this, I think back over our journeys and feel like we have known each other our entire lives. GOD put you in my path for this reason, so that we are able to have someone to talk to that has gone through the same stuff. THANK YOU for always being there for me, and THANK YOU for being my big sister that I never had. You continue to inspire me!  LOVE YOU from my NEW HEART to your NEW HEART!!!

I am THANKFUL for my church family.  Garris Chapel UMC just rocks!!! My church family has gone through this entire journey with me, just in a different way.  I am so glad that GOD brought my family and me to this church. They are always there for me and my family. I cannot even begin to say how THANKFUL I am for every single one of you guys. THANK YOU for all you have done for my family.

I am THANKFUL for my Youth Pastor and his wife. You guys started off kind of like being my “second parents” and then become my youth pastor. You guys have always been there for me and continue to love me every day. THANK YOU for being my go to people.   I THANK GOD every day for you because I really don’t know how I would deal with things in my life if it were not for you and Donna. THANK YOU for always being there and loving me.  I LOVE YOU GUYS!!!

I am THANKFUL for my doctors and nurses. THANKS to all the doctors and nurses that were able to keep me alive when I was born weighing less than 2 pounds.  Because of them, I have reached many life milestones.  I have had a good life and now I have a new heart to have a better life.  I am very THANKFUL for my transplant team.  GOD gave me the perfect team.  This group of people talk to me and always help me to understand all the medical stuff.  THANK YOU for being my transplant team.  You guys always make me smile and I have always known that you would never give up on me.  You have always wanted the best for me, challenged me and believed in me.   THANK YOU!  Each one of you is special to me and I am so THANKFUL that you all are a part of my life.  This has been an amazing journey. You guys are the best. I would like to give a shout out to Whitney and Joann for loving me and letting me be there nurse in training.

I am THANKFUL for my Cardiologist.  He is one smart doctor.  We joke with each other and then we laugh at each other.  He is always there for me when I have a question, need to talk, or need to laugh. I THANK GOD for him.   He is my favorite doctor in the world, and I like to believe that I am his favorite patient!!!  HaHaHa!!!  THANK YOU Dr. Carboni!  

I am THANKFUL for all of YOU!!!!!!! If it were not for all of you seeing this and then sharing it with all of your family and friends, because it allows me to show GOD’s love and how awesome HE is. As someone reads this, I want them to see just how much GOD cares about ALL of US.   HE is with me every day, during good days and not so good days.   And, HE is with you too!   Also, I am doing this Blog to raise awareness for organ donation. PLEASE consider being an organ donor.  Don’t take your organs to heaven, GOD knows that we need them here.  Register and tell your family and one day maybe you can give someone a new chance at life.  THANK YOU for all you do by reading and sharing my Blog with others, and THANK YOU for supporting me through this journey.

This year I am most THANKFUL for my donor and their family. I can’t imagine how they are feeling today. I think of them often.  Really, I think of them every day.  They will always have a special place in my heart and I pray that I can honor them as I continue this journey. They have given me a new life and I cannot thank them enough for the choice they made to donate the organs of their loved one.   Please keep them in your prayers as you celebrate with your families.  Really look around at your family and friends and remember to tell them that you love them.  Have a wonderful THANKSgiving.

Discouragement

Hey everyone,

On July 11th was four months post transplant for me! It is still hard to believe because it went by so fast.

I am so proud to say that GOD has blessed my sister and partner in crime. This past Thursday was Caroline’s one year mark of having her transplant! I love you so much and do not know what I would have done without you in my life. Praising GOD every day for you!

As I thought about our donors a lot these past two weeks, I just kept thinking just how blessed we are. While the families were grieving, they still had the courage to donate the organs of their loved one. We should all be like this, because GOD does not want your organs in Heaven when you can donate them to save a life.

I know I have not updated you in a while, but I am trying to finish my summer classes out strong. This past month has been a rollercoaster. From trying to get A’s in my summer classes to enjoying summer. From being on my oral medicine for a virus to being put back on my IV medicine. From having a white count of 4.8 to having a white count of 1.4.

My transplant team has taken me off two out of my three anti rejection medicines to see if it will bring up my white count. I am so grateful for my transplant team who take really good care of me. However, this past month I had to say goodbye to one of my nurse practitioners. This was very hard for me because I had made a very special bond with this person.

My next biopsy is August 9th, so we will see what happens.

For now I am on house arrest, meaning that I am not allowed to go out of my house to see anyone and people are not allowed to come see me. Since, I am on house arrest I am not allowed to attend ACS this week, which is very sad for me. I have been looking forward to attending this event for a long time. ACS is a conference event for the United Methodist Churches.

I am getting very tired and discouraged because I still have this virus and PICC line in, my white count is low, and I am on house arrest; but I am continuing to Trust GOD.

Until next time…

Please pray for my white count to come up, there to be no rejection, and for this virus to get OUT of my body. Also, please pray for my good friend Kyla who is at Duke waiting for a heart transplant. Pray that she will receive the perfect heart that she needs very soon.

Thank you for all the continued prayers and support as my family continues on this journey. I am going to not give up and continue to fight!! All of you that are going through something need to remember to continue to fight too!!

GOD Things…

Happy 2 Months Everyone!!

I know I have not been very active on the blog these past two months, but during this time I have been able to do lots of thinking and just see how blessed I really am. Throughout this journey I have had so many GOD things happen.

1. From the very beginning of this journey on June 2^nd, when we found out that it was time to start the heart transplant process; GOD always gave me the peace and calmness that only HE can give.
2. I never had to have a heart surgery, get a pacemaker or defibulator put into my heart, which is why my cardiologist wanted to go head and get me on the list before I got to sick.
3. GOD showed me that no matter how tired you are that you should always look for the good things every day.
4. Through this time GOD sent me a good friend to help me through this entire process. And now she is my sister that I never had. Love you Caroline E. Tart!
5. In December I was admitted to the hospital to start an IV med, I thought I was going to be inpatient until I got my new heart. However, GOD surprised us and because I was doing so well with the medicine I was able to come home in a week.
6. We received the call saying that they found a HEART! This was the perfect Heart at the perfect Time.
   1. The night before the transplant Brooke Amory had a dream about me getting a heart transplant.
   2. My cardiologist was leaving for Massachusetts the next day to pick up his daughter from college.
   3. GOD knew who I wanted to do my transplant surgery, and that was exactly who was on call that night. However, after he finished my surgery he had to get on a plane in three hours.
   4. My anesthesiologist that has always done my heart caths was the one on call that night to do my transplant! And while waiting for heart to get there he read my blog.
   5. I went to the OR so calm and peaceful with no sedation. I had the privilege to see everything and meet everyone, but my favorite thing was that I got to pick the song for the surgery.
   6. The night we received the call that there was a heart, Caroline had spaghetti, which was the same thing she was going to have before her transplant.
7. At 6:58am on June 11^th, I was off bypass with the new heart beating, and Bethany Perry sent a picture to my mom of the beautiful sunrise with a cross in it from Goldsboro.
8. I was able to have walked within 24 hours after my transplant surgery!
9. The surgeon had to put me back on bypass in order to fix where the aorta was kinked because the donor heart was bigger than mine. So everyone thought it would be a longer recovery time, but still got out in 11 DAYS!
10. Even though I was pretty sedated and still on vent I was still able to smile, and the first person I smiled at was Nurse Tyler when he came to visit.
11. While in the hospital, we meet a wonderful family from Brain Roger’s church, who came to the unit I was in because they had run out of space in the PICU. If I had gotten out of PCICU the day before that we would never had met them. I am so glad that Caitlyn is doing so well.
12. Three weeks after my transplant I was admitted to the hospital for CMV, which is in the line of the herpes, chicken pox, mono, and etc. I was not going to let this CMV win, and I was able to come home in time for my SENIOR PROM. I would like to thank all the students at Wayne Early Middle College High School that gave me the honor to be PROM QUEEN!
13. I am currently home and I am not letting anything stop me from getting to walk across the graduation stage on May 26^th.
14. Through this journey I have been able to meet other patient’s families that are waiting on heart transplants too, and help them as much as I can.
15. There are so many people that are much sicker than I was before the heart transplant, and I was able to have a very fast recovery even with being put on bypass twice.

This Mother’s Day was hard for me this year. I spent most of the day thinking about my donor family and the mom losing her son or daughter. This was the first Mother’s Day the mom did not have their son or daughter to celebrate with. But, thanks to my donor I will be able to live many years and get to celebrate Mother’s Day with my mother.

Thank you for all of the continued prayers. My CMV is still not in the range that we need it to be in, but we are getting there slowly. I have a lot more energy, and have had all my restrictions pulled. I have been driving for the past two weeks! WOW!! We are heading up to Duke to have another biopsy next Thursday to see if any rejection. Also, my brother is having a cath done that morning too to make sure that his cardiomyopathy is still stable. Please pray for NO REJECTION, and for all of Daniels number to be stable. Right now my Tac level is low which is one of my anti-rejection meds. However, they do not want to adjust any of my medicines until we see what it is when I get off this IV med and what the biopsy reads.

Until next time…

Every day GOD will show us something we just have to look for it. So this week, I would like to encourage everyone to look for something every day from GOD!

NEW HEART… New START

Happy 2 Weeks Post-Transplant!!!!!!!!!!!!!

WOW! These past two weeks have been crazy and I feel like nothing has really happened to me. However, something BIG has happened!!! If you remember me telling you on the last blog about Al-J getting his new heart on the 10^th and my mom happy, but upset because she wanted that to be my heart. Well, I told her “that is not my heart!!!”  And, then the next day we got the call for my HEART!!! On March 10^th, my cardiologist called and said that we needed to head up to Duke because they found a heart.  We got up to Duke and checked in, everyone there was so excited to see me back for a good reason this time!!! We had to wait for a little while so people were coming in and out of my room and everybody was excited.  Because I wasn’t supposed to go down to surgery until 11pm, I got to just hang out.  And, while doing so, I got to go see the helicopter.  That was COOL!

IT IS NOW TIME…

I prayed with everyone that came for the surgery before I got a bath and taken downstairs to the OR around 11PM. My doctor that put me to sleep on transplant night was the same doctor that has put me to sleep for of all my other heart caths. He told me that they usually give anxiety meds to relax the patients before leaving the PCICU.   But he said I was so relaxed and then asked me “Ashley, do you want some sleepy medicine before you go down there or to just go down?” I told him that I want to go down to the OR and see everything.   I was not nervous because I knew GOD had me. We went down to the OR and my nurse on call that night had never had a patient that was getting a heart transplant, so I told him he could come watch it because I was his only patient for the night. Come to find out that his girlfriend is my child life specialist. So we all have a really close bond now.

I got into the OR, and the first thing they asked me was what music or song did I want to listen to, I immediately said “Good Fight” by Unspoken.  They started playing it while everyone was trying to get me ready. I started asking what everything was and of course they spent time explaining everything and just talking with me. Then, the fellow that was working with Dr. Jaquiss came in to say hey. This was her very first transplant that she got to stand by Dr. Jaquiss and help with the surgery. I began to start singing “Good Fight” in my head around 11:30 and then Dr. Ames said I gave you the medicine.

That was all I remembered for then…

The heart got to Duke around 2:30AM and I was out of the OR by 8:30AM. They had to put me on the bypass machine twice because my surgeon noticed a leak in the aorta where it did not stitch right, so he had to go back and fix that. My surgeon said, with me being put on bypass twice that more than likely my recovery would be a lot longer. Boy, did I prove them all wrong. Within 24 hours they got me up and walking, however physically that took a toll on me and I had to rest for the next two days. Then, Monday came along and I was back to my normal self!!!! Within 5 days of being in the PCICU, I was moved to a regular room!  I was doing so good, I got to skip the step down unit completely!!!! And within 11 days, I am back home. It is kind of strange, but it doesn’t even feel like I have had the heart transplant and am still waiting for it.

Through this whole process there has been so many GOD THINGS and stories to tell, however, those will be coming in later blogs. I wanted to give everyone a quick update and my side of the night of the transplant. There are only a few things I remember. First, I remember my wonderful church family that was there to love on me and my mom and dad.   To each of you, THANK YOU!   Then, I remember my first walk, I remember spitting pills out at my nurse (haha), and then I remember seeing a few other people. As time goes on, I am sure I will remember a few more things, however they do not want you to remember a lot of went on.

I am at home with my NEW HEART… NEW START, working on finishing this semester of classes, going to PROM, and GRADUATING from High School. Please continue to pray for a speedy recovery because I am still quite sore, especially on the days that I get out and do things. Most importantly, while I have a new life to live there are the family members of my donor that are still grieving. Please remember to keep them in your prayers.

Today is a beautiful day.  It is spring time, a time for new beginnings.  Take time to look at each new day and realize all the things that GOD has done for you.

Thank you for all the cards, texts, calls, meals, and most importantly the prayers!!!!

 

Heart Time…

WOW!!!!! This is the last day with this old heart. I finally have gotten that perfect heart on that perfect day!! The day after Al-J got his transplant. We just got our call. Please pray… we will let everyone know more later.

The Gift of Life…

These past couple of weeks have been pretty rough, but I am not going to let that stop me. I am having headaches, fevers, and am dizzy pretty much everyday. My BNP number 4 weeks ago was 175 which is in normal range. And last week it went all the way back up to 501, which is not what we wanted. The BNP number is the heart failure number. I have another appointment next Thursday. Please say a pray for my cardiologist as he tries to figure out what to do next.

This blog is not about me today. I was going to write this yesterday, but had this feeling that I needed to wait.

THIS IS A GOD THING…

Just a couple of weeks ago there was this sweet 13 year old boy on WRAL news that needed a heart transplant. I have been communicating with Al-J for a couple of weeks now. Today was his 99th day of being in the hospital. He was on the same medicine that I am. And just a few minutes ago I went out on Facebook and saw that AL-J is getting his NEW HEART today!!!! GOD IS SO GOOD!!!!!

Please say a special pray for the doctors and nurses, Al-J, and his family. But, as they are celebrating; someone is grieving. Please pray hard for the donor family as this is going to be a hard time for them.

I got the message from Caroline this morning while I was changing my medicine bag. After I finished changing the bag, I immediately came running into the kitchen and told my mom. She was so happy for Al-J but later asked why it was not us. Mom really wants me to feel better.  I told her that it is ok, because that is not the heart for me. I am glad that new heart went to Al-J because he was really having a very hard time.

GOD’s GOT THIS!!! Al-J is getting his new heart, and my time is coming up faster then we know. I am still Trusting GOD, and know that I will get that Perfect Heart on that Perfect Day. This is Al-J’s Perfect Heart on his Perfect Day!!!

This song goes out to you, Al-J!!! I am proud of the good fight you have had, and I love you!!