Today is the day.... I always wondered when I would start writing or what I would write so here goes..
It is December 13, 2009 (Sunday) as I sit here I am still at a loss of words of how to express or even start. It is almost 2010, my 5 year mark since it all began. The struggle with my health that is, on December 31, 2004 I gave birth to most incredible and amazing little girl in this world, named Aysia Marie MCCline!! Our family was complete, so I thought. Tyrone and I got married, had my big boy Jayden, and now my baby girl. Life was good. As the days flew by it nearing time for me to return back to work, but not only that something was definitely going on with my body that I was unaware. As a new mother again after 5 years I thought nothing of it. I felt so weak and short of breath but continued to push myself, as us women tend to do. It wasn't until early one morning I woke up out of my sleep gasping for breath. I thought someone was choking me, I had never been so scared in my life. That is when it all unfolded... After hours of being in the ER and test(s) ran it was discovered the my heart had enlarged 3x the normal size and my lungs were full of fluid. When the doctor told me, I was sure he had the wrong patient. How, when, what, this could not be I was a 25 yr old with no prior health conditions or problems but the minor cold. He began to explain I had postpartum cardiomyopthy, which is weakening to the heart after prenancy. Never heard of it!
My life then was turned upside down in an instant. Family and friends confused, concerned, doctors in and out, so many questions, and no answers. I didn't know what to think or feel. All I could do is believe and know that God had me in his arms. I ended up staying in the hospital for about 3 months, it was like they didn't know what to do to help me get home and even live any type of life. Finally a doctor that took the time to feel my pain said "I am going to get you home." His name was Dr. Hobson, a short and cheery man, you could tell he was a father. He sat down and throughly discussed my condition with my family and I what he had planned for me, which was to put a pacemaker/defibrillator in. He explained that my heart was very weak, an ejection of 18% and would not want to take a chance of it stopping on me. The ICD would be my "lifesaver" if anything were to ever happen it would "fire" and restart my heart. Later that week it was implanted into my chest, and all I could think of was I'm going home!
The journey had just begun.... being in the hospital bed for so long i did not realize how weak I was or my limitations. I could not lift my baby girl, interact with kids physically, drive, or even check the mail without being exhausted. I was frustrated, angry, sad, every emotion ran through me. On top of taking multiple medications with a million side effects I was a wreck.
From about May to September I was "stable" but never felt good. That is when Dr. Hobson referred me to Mayo Clinic in Jacksonville FL. It seemed crazy because I lived 4 hrs away! The insurance said I needed to receive treatment there as well, I was being evaluated as a transplant patient. In mid-September I was on my way to Mayo with my dad. All I could think of is someone make me better please. The first day I met with another amazing man, Dr. Yip. Never would I have known that this man along with many other Mayo staff would save my life. Dr. Yip's plan was now in effect, he tweaked my medicine, set me straight on diet, and kept close contact with me. I went back with greater hope and excitement, within 2 months I was able to walk further distances, exercise, drive, and most of all had more energy.
I did well, felt better than I had ever in awhile. We were able to move into our own home, even though it was right next door to my mom and dad it worked. I started to have life in me again, life was "good" again, so I thought. In Febuary 2007 Tyrone got a promotion at his job. I was happy for him he had worked so hard to move up. The downside was it meant moving 2 1/2 hours away from my family. My family was my biggest support. I prayed about it and decided we were a family and should all be together. I had to give it a shot, or I would never know. I had not put my self first though, bad decision. In March we were on our way to Ft. Myers FL.
The first couple of months things were pretty good, I kept an open mind. The new place was nice, Jay was in a good school right next to the house, and we lived a minute away from Wal-Mart! :) Maybe the change was good for all of us. Yes I missed my family dearly, but we went up often and they came down as well. My dad was so worried about me he even came down and worked for a couple months to make sure I was ok. I love that man. After about 4 months I think of not having my family to help, Tyrone working such long hours (12-14 a days), and me having to do all the stuff with the kids and house began to take a huge toll on my health. So quickly I did not even realize how bad I was doing... I remember the last weeks there Aysia and I being confined in the bedroom because I had no strength to really care for her. I lay in the bed as she sat watching cartoons and entertaining herself at times. That is why she is my hero, she took care of her mom. She was only 3 yrs. old. She always stayed with me, whether I was kneeling at the end of the bed praying, leaning over the toilet vomitting, or standing in the shower for hours.....SHE WAS THERE. She knew her mom was sick, but she always knew what to do. During the day Jay would be in school so he didn't see much, he too had been through so much already. His real father barely in his life and now an ill mother on top of just trying to be a 8yr. old boy.
Enough was enough it came to a point where I could not even climb the stairs to our apartment. Jayden finished up the school year and we (Me,Jay, and Aysia) were on our way back to Clearwater. We lived with the folks, I actually felt some weight being lifted off my shoulders. I had help again, which I very badly needed. Unfortunately it was not that easy for Tyrone to transfer back to Clearwater, he would have to wait for a "spot" to open up. We made it work for a awhile, he would come up on his days off. We saw him once or twice a week, it was hard but told ourselves the circumstances were only temporary. Beginning January 2008 he still had not made the transfer and other issues began to evolve in our marriage. The distance was rough but not just that our trust had been broken. I was devastated, I had been with this man nearly 8 yrs. and living with a life long condition after giving birth to his first born. I felt anger, rage, betrayal, most of all a broken heart. Shortly after it came out that he was having a full blown affair with a co-worker. I could not stand to even look at him, I thought I could forgive him and "work things out"...that did not happen. I began to despise and hate him. How could he I was sick in and out the hospital, trying to take care of the kids, sacrificed so much for our family and he was down there running around on me!
In March 2008 he did transfer, we continued to try, but I just did not look at him the same anymore. We went along with the charade till about May. In May I returned to the hospital, I was full of fluid and my heart was tired of pumping. I could barely move or walk. The doctors tried to get me stable and as much fluid off with diuretics, but it was a tough balancing act trying to keep my blood pressure stable too. I was in pain and weighed down by so much water in my body. After about 3 wks. some fluid came off and I was able to go home. I was home for about a week and began to degress more. I followed up with Dr. Hobson and he took one look at me and said "you need to go to Mayo right now."
Three days later, June 6, 2008 there I was face to face with Dr. Yip, who was not so happy with me for neglecting my visits with him (financially I could not afford to make the visits). All he could say is "you have to stay and I do not know when you will be going home." I was admitted immediately. The first few days they tried to get my levels up and monitor my heart rate/blood pressure closely, using different IV meds to "help" my heart. It was then that I was placed active on the Mayo Transplant list as a status 1A (at the top). Things seemed t be going okay, until late evening on the 7th day. I would experience something so unreal in my life, my life literally flashing before my eyes, as staff stood near and all they could do is embrace theirselves and watch..they could not help me at this point. Only HE could help me. All I remember is voices, lights, jerking movements of my body, the intense shock/pain in my chest firing back to back. That night I went into defib 7x they did not expect me to make it to morning. BUT I DID! The next step...Dr. Hosenpud and my family were notified he then started his "plan" for me.
I remember that morning still in a daze, my family there, including Jimmy, Mia, Isabel, Dorothy, Jayden, and Brittany who had flew/drove to be with me. Around 7am Dr. Hosenpud h came in and gave me basically 2 choices life or death? And of course there was only one answer, he explained to me there was a device that assists the pumping of the heart called a VAD. It works somewhat like an artificial heart, major surgery, risks, and life would be challenging, BUT I would be alive and thats all that matter. At this time they were still researching the pump I would recieve, the difficulty was the size of the pump and I had a short abdomen, would there be enough room for it all to fit? After the doctors and surgeons conversed and exchanged information with the manufacturers of the Heart Mate II I would go into surgery for about 12 hrs. The manufacturers even flew in to insure a smooth operation. I was now the first patient to receive the Heart Mate II at Mayo Clinic.
I was pretty much knocked out for the first 3 days... as tubes were removed I was able to talk. I didn't move much I was in alot of pain, and still unsure of exactly what to expect or what I had been through. My body just hurt. Slowly as stuff was removed the nurses started educating me on my "equipment" it was mind blowing and scary. I did not feel like my self at all, I had incisions all over my chest and abdomen. The most obvious my "zipper", people still stare but I am proud of it and so is Micah! (he got a tattoo in tribute to my transplant right by his heart) In all honesty I felt like a robot. The wonderful therapists at Mayo began working with me and I was up and walking in no time, batteries and all. When I was in the room or in bed I was hooked to a power base unit by wires attached to the device that always stayed on my waist. If I wanted to be mobile I would switch to batteries, which at times was challenging. I had to get used to carrying about 10 lbs. of equipment, balancing, clothing style, being aware of my time constraints. Each set of batteries lasted 3-4 hours. Everywhere I went my "black bag" went. It had a back up controller and extra batteries.
A month or so later I was going home! Well my home for now, at this time my whole family had dropped everything and moved from Clearwater to Jacksonville.
Welcome home, it felt so good to be out of the hospital and in my own bed. My parents had done a spectacular job setting the house up and getting it ready for me. Thank you, I love you.
I was ready to move foward. Being in Jacksonville was a fresh start and new beginning for me and the kids. I began my healing process....I kept very busy. Doing things with the kids again, washing dishes, doing laundry, yoga, reaching out to old and new friends, finally focusing on me. I felt great the VAD had worked wonders for me, I was working out 3x a week, losing weight, feeling awesome, and looking amazing!! I said to myself "I'm back!" Being that I had the VAD my status now had moved to a 1B which meant I was no longer priority on the list as long as I was stable.
I figured this must be in his plan and I was content. I did not let having the VAD discourage me and kept a positive spirit helped tremendously. I even talked with other patients that had questions and concerns about it. I had my days, stares, and cries but for the most part adjusted pretty well. The one thing that was never easy was I could NOT get wet, which meant no showering or pool. I love water. My mom I admire her strength, there is nothing this woman would not do for me. Even though we never see eye to eye, she was there. I love her. My mom was my caretaker, she helped bath me, cooked, cleaned, and cared for my children. Tension began to grow in the household causing problems between myself and my parents. Here I was 30 yrs. old I felt so trapped and like I had no privacy. Even though I knew my parents always meant well, were concerned, and wanted the best for me. Financially it became difficult both of my parents had been out of work for 2 months, everyone was stressed out and losing their patience with EVERYTHING.
August 2008 I would meet my "Angel." August 22, 2008 I met Micah Darius Hatcher, this was the beginning of great friendship and unconditional love I would never expect to find in Jacksonville FL. He somehow was always able to make me laugh, smile, and even allowed myself to open up. I felt so comfortable with him I began to share with him "My Story," not only did he have compassion but he embraced like no other, NOT even my own husband. Micah made me feel wanted, loved, happy, and beautiful again. He helped me overcome my fears with the public (i.e. people, places, activities). We broke down walls together! After a couple weeks we went from friends to best friends to inseparable. He stepped into my world as if he was always there going through daily life with me and my children. Jay and Aysia could not get enough of Micah, I heard laughs and seen smiles come from them that I had not seen in a long, long time. I was blessed.
November 2008 my mom and grandma had moved back to Clearwater. She went back to work and my dad stayed behind with me. My dad never really got used to the wound care of my VAD site so I was kind of on my own and began changing it myself. In December Micah moved in and became my other caretaker, so my dad could find work. Things seem to stabalize again and there was balance and harmony in the house again. Dad began making frequent trips to Clearwater to repair the house (it got trashed when they had to rent it out). Mom was working, the kids were situated in school(s). Then we hit a little bump.....after taking some cultures of my VAD site it was determined that I had an active infection :( Most likely from trying to clean it on my own. This was a good and bad thing. The good thing is my status moved back up to a 1A, the bad thing is they had to try to keep in under control so it would not spread and I now ran higher risks with having problems with the pump. Which is normal the longer you have it the more risks because it is a foreign object your body will never recognize. Just when I thought I was being careful and safe I had to try harder. Micah would then learn to clean the VAD site, and he did it better than the nurses! I trusted only him, the infection calmed down and it became less painful and itchy, but flared up from time to time, and I managed.
April 2009, by this time dad and the kids were mostly in Clearwater and Micah had got laid off. This now presented another challenge in our relationship. Thank God I have been blessed with excellent medical insurance. I too began to feel sad being apart from the kids and missing my family and friends. Application after application with no such luck, we tried a different route, we both decided to go back to school, together... He motivated me, I motivated him it was just like that between us.
We found ourselves at The Heritage Institute enrolling in the pharmacy program. For me it would refresh my skills and knowledege since I had been out of the field for over 4 yrs. as a tech and prepare me to take the PCTB (national pharm tech test). For Micah it would be a nice change something out of the box. Prior he had served in the US Army and worked in consruction. We were both excited.
June 2009 I was coming up on my year with the pump and with an active infection, Dr. Yip once again presented another "plan" for me. This time I would undergo a "treatment" to kill antibodies, the antibodies made it extremely difficult for me to get any matches, which meant No calls. This treatment would hopefully do the job. Within a week I was hospitalized, I was nervous still not quite sure what I was getting (IVIG & Ritauximab) until the day of when the nurses started posting chemo signs....fear began to set in. I had nothing to lose, the first dose lasted 12 hrs, the second lasted 4 hrs. I didn't notice much, I just felt fatigue and a headache. By morning the headache was still there and had gotten worse, I was throwing up, and running a fever. I was then taken for a head scan, where they discovered I had a brain bleed, with no known cause. I was there for a short stay to monitor the bleed and be treated for an infection. A couple days later a scan was done the the bleeding had resolved itself! The treatments were resumed, for the next couple months I would do the treatments outpatient 3x week, 4hrs. a day, and attend school 5x a wk 4hrs. a day! Good news the treatment was working mt antibody count went from 23% to 0%!!
August 2009 my body did not agree with the routine. The treatments wore me down, I was tired and no longer had the energy I used to. I postponed school. Micah continued. He still never left my side, taking me to every treatment, waiting patiently always, never once complained. I love him.
September 2009 an uneventful month, 14 months living with the pump. This month I was missing my moms birthday(23rd) and my bestfriends daughters 1st birthday(24th). To cheer me up Micah surprised me with a hair appointment. I had always wanted to get my hair braided especially to make it easier since I could not care for it like I used to. It was on a Tuesday, that day couldn't of been worse! We woke up to the a/c being out and it is HOT month for FL and late to my appt. Turns out I was at the shop from 11am -11pm and my hair still was not done! I needed to come back the next day. We went home to a 90 degree house trying to get some sleep, and wait for the a/c man in the morning. I am surprised me and Micah didn't kill eachother...lol.
8am Wednesday morning a/c man arrived. Bad news the a/c would not be fixed till Monday! Help dad, he was on his way... BEST News I got THE CALL! He is always on time! Just when I thought I was about to lose it all, he was right there. God is GooD. I love him. It was insane, I believe Jenny Reynolds (Dr. Yips nurse) called me at around 10am and said "we need you to get to Mayo right now." Mixed with soo many emotions as Micah and I looked at eachother and I began to cry we both said "it's time." Dad was on his way, and mom and the kids would be following shortly behind. The news spread quickly, everyone was praying and so happy for me. Thank you all. I arrived, checked in, and was unexpectedly greeted by a familiar face, Kate. Kate was the wife of Carl (VAD/transplant pt.) I had met them both months ago and talked to them about the VAD, such a wonderful,loving, and caring couple. Carl had been transplanted months prior and now it was MY TURN! I think for the first time joy overcame my fear............
I do not remember much everything happened very quickly. I was prepped, said my I love you's, and was off to the OR room.
Transplanted on September 24, 2009. (Aliana's birthday, crazy huh?!) It took a day or so to "wake up" I do not remember anything, except what my family says...lol...they say I was rambling alot about nothing! The first thing I asked for was iced tea from Dunkin Donuts one of my favorites! Which Micah brought for me ASAP, everyone laughed! This was it no more batteries or cords attached to me, I felt free for the first time in over a year. I could move about freely and not get "stuck." All I could think about is how grateful and blessed I had been given a second chance at life. Besides feeling the physical part of the transplant, the emotional part also began to set in, I began battling with it all in my head. My real heart was gone, was this new heart going to work, someone died, a family lost a loved one, did I deserve it..etc,,. The thoughts raced around endlessly in my head, with the support of my family/friends it has helped me a great deal. On this day GOD sent me another "Angel," L.M." Because of her I am here today with my family and able to be a mother to my children. Thank you and I love you. There are no words I can say to take away the hurt and pain you all must feel but tell you that her journey continues through me. I can only hope she is looking down and smiling. Even though I never met "L", I am honored and proud to be a part of her. By looking at her photos and postings of friends and loved ones I know she was an incredible young lady. The achievements, accomplishments, and adventures she has made and been a part of. She seemed so full of life, bright, cheerful, friendly, caring, and had a BIG heart. I would like to think we share some of the same chracteristics :) Her beauty is not only on the outside but inside as well. She is so gorgeous and that smile would light up any room! A young woman so self-less to want to be a donor and save lives, is not only impressive but commendable. I am grateful for L.M.
December 14, 2009 as the year is ending I obviously have so much to be gratful for. I am now 2 months and 10 days post-transplant. So far so good, I try not to worry too much about my health since I have been consumed with it for so long. I just want to live now, and focus on getting my life back on track, our future and a new start. At times it can be overwhelming, the first 6 months are very important to monitor for rejection. There are 4 statuses: 0, 1A, 1B, and 2. 0 being the best and 2 the worse. My status has been a consistent 1B, which I'll take :) My appointments went from weekly to now monthly, at these appointments they draw labs and take biopsies of the heart through my neck. It is not the most enjoyable but is the only way to tell how the heart is doing. I am on about 20 pills a day, which eventually will be lowered once I become more stable. I understand I will have to be on medication for the rest of my life, it it is all worth it. I continue to go to rehab at Mayo 3x a week, which helps a great deal, not only for the exercise but support too! So many great people there, the cardio rehab ladies are wonderful, I call them my moms' :) Christmas is right around the corner I could not ask for a better or more perfect gift than I have already received from "L".
My next biopsy is scheduled for December 16, 2009. Lets keep our fingers crossed and pray for a BIG FAT ZERO! If all goes well the doctors are talking about releasing me maybe by the end of the month or beginning January. Looks like this chapter in my life is coming to an end here in Jacksonville. Jacksonville will always be a second home for me though I have met many great people, Mayo "saved" me, I met the love of my life here, and my favorite cousin, Sandy Budd lives here! Thank you. As I begin to prepare mentally and make this transition back home, I am thrilled and nervous all at once, but more than anything READY! My plan is to study for the PCTB (national pharm. tech test) and become certified, go back to work, also I would like to attend Arts Institutes for culinary arts (I love to cook and eat!), and be the best mom I can be. I love you Jayden and Aysia with all my heart and I will always be here. One day I hope to give or share this with you all, until then I will continue to write. Good night. 12/16/09
1:00am
