DJ'S Hope

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All was going fine. I was going through my routine as normally as possible when suddenly in summers of 2010 I felt light headed and tired. It was summer of 2010 when I was feeling light-headed and tired. TheDoctors then informed me that the heart anti-rejection medicine is now causing my kidneys to fail. The room felt far too serious for the news, that I would eventually need a kidney transplant and would probably receive one within the year. By now I am proud of my scars, because these scars developed empathy in me toward other people who suffer from various serious medical conditions and was actually excited when I heard this. More scars to be proud of, would you not say that I was courageous??. I can be more like Sally from Nightmare Before Christmas. I was told that I would have to get bloodwork monthly and inject myself with Aranesp when needed. I told myself that it would be nothing compared to a heart transplant. Silly of me? No at that time it was a perfect thought, I was so positive and the fighter in me was telling me so.Silly me. I could have never have anticipated how long I could possibly wait and only thought of the end result.

In 2012, I got my first job at a place called Chicken Wow. I only worked there for a week until they stopped contacting me. Then I was hired at McDonald’s and worked there for about six months until I decided that I wanted to be treated better and make more money.

DJ’s Hope for Hearts surprised me with a gift card during 2012. I will never forget the kindness and concern given to me.

August of 2012, I started working as a bakery clerk at a grocery store. I had a lot of fun, but as time went on, things became increasingly hectic and difficult for me to keep up with by myself. In August of 2014, my kidneys were at 20% and I was beginning to have tired, dizzy, and dehydration spells. I was forgetting to check the temperatures of food more frequently and discovered that the heart by-pass machine used for my heart transplant effects my memory. Before I could turn in a doctor’s note on time, I was terminated. I was relieved because I thought that I could get proper help by filing a grievance. When I found out that they would not help me and that my grievance was denied, I was furious. I refused to put any effort further on working at such a company and began applying other places.

Applying became emotionally exhausting, and having had only two interviews, I began to lose hope more and more. Why this negativity is approaching me? I kept on wondering. I realize the urgency of having a job and that mycircumstances health condition are effecting affect my chances of getting one. With my hope, my health began to decline more. With my declining health my hope of getting job also declined. My blood pressure and cholesterol arelevel started increasing high, and level of iron and other nutrients started dipping low.

At present as a result of my kidneys failing, my BP and Cholesterol level is very high, while my iron and other nutrients are low, as a result of my kidneys failing. ,Mmy appetite can be horrible and fluctuating, I bruise easily, and feel tired and light-headed often.

For many months, I struggled to accept my reality and awoke in a new rage at my nightmare. I still struggle with it because I can’t picture my life in the future or how I will survive financially. I don’t like feeling helpless. It’s despairing. I’m torn between having a job that is tolerable or taking a huge risk in order to be happy. Currently, I’m in the process of being evaluated so I can be put on the list. All that is left to do is a heart biopsy May of 2015. It’s a waiting game that I have been anxious for from the beginning.

My life now consists of eating, sleeping, and overthinking. I miss having energy and enthusiasm. I sleep so much, I lose track of how long I sleep and my days bleed by. What day is it? It doesn’t matter. What matters is that I’m one day closer to being able to do something about my life. I will get through this.

Life is about being positive, striving to happy and live with self-esteem. I am a strong girl. I will not fail the young boy and his family who donated his heart and thought of other’s happiness during their misery. I draw strength from them, my family, Tony my boyfriend and scores of people who have been with me during my low and high times. I will live a long happy life bereft of misery and negativity.

Len Merriman, Founding member of the board, DJ’s Hope for Hearts, conveys their forever support and strength to Emily : 

Emily K,

All of us at DJ’s Hope 4 Hearts Foundation are thankful for you allowing us to come into your life & follow your heart transplant journey for the past 4 years. We hope you nothing but the best with your continued journey’s and want you to know you we will always be with you on that journey.

You too can help Emily, and others like her. Please read more about how at this link

My chest was being painted with a cleaning solution for my transplant. It tickled and I was rooting more vehemently for the Browns because I was being painted orange. The original transplant day was scheduled for October 16, but the double checking of the heart pushed it to October 17. I was 17-years-old and had only been on the waiting list for 7 days. I didn’t realize how odd these numbers were yet, but I did realize how lucky I was. Some patients spend years and holidays waiting. I was the calmest person in the room. It was soothing to be surrounded by family and friends. I was ready to say goodbye to my bad heart. Goodbye water weight. Goodbye sores.

While hugging everyone before being wheeled into the operating room, I felt a small panic. “What if this is the last time everyone will see me?” I calmed myself by telling myself that I wouldn’t feel a thing. I would be in a two day coma. I made sure each hug was long, but had trust in the surgeons. I decided not to look back once inside and I remember how big the operating room was. I hopped up onto the operating table where they had me count backwards. Before I could finish counting, I was out. I remember they told me that when I would be half awake, they would ask me to move. I don’t remember moving.

The next thing I remember was that I was fighting to be awake. I had a difficult time trying to open my eyes and everything I could barely see appeared to be covered by a thin veil. It turns out that my eyes kept opening even when I wasn’t awake so they had to glue them shut. I felt like I was burning up with a fever. My feet could only move at first so I tried kicking off my blanket then I muttered, “it is too hot.” I don’t remember who I first saw when I woke up, but I think everyone was there waiting for me. I learned that everyone waiting wasn’t informed right away when I was done and that I was put in my room from back door backwards. Mary (Who is Mary Should be told sister/friend)didn’t sleep or leave my side. My dad had cried upon seeing everything that I was hooked up to.

I had a breathing tube in that I felt upon waking, tubes to drain the blood from my lungs, multiple infusions, pacemaker wires, and loads of tape. I thought that my heart was racing when I first woke up, but then I remembered how slow my heart had been. Even though I was loaded up with morphine, I could feel the tubes in my lungs digging into my back. When it was time to get the tubes removed, I was excited, but it was the most unpleasant thing I can remember experiencing. They had me take a deep breathe before pulling them. Despite the deep breathe that I took, I gasped, choked, and cringed in pain.

They say that transplant patients crave things that the donor liked. I was craving M&M cookies. I had to wait until I healed more until I could eat more foods. They let me have an M&M McFlurry.

I told the nurses that I didn’t mind being poked over and over again with needles, but I had an infusion put in the side of my bicep to insure that I didn’t get an infection. I had a pencil sized infusion in my groin already. I didn’t want to bend my leg and was afraid that I would accidentally pull the pacemaker wires that protruding from my body out. The worst part about getting the infusion in my bicep was the numbing process. The surgeons were asking me if I felt anything and they kept hitting a nerve in the process. It created the tingling sensation you feel when you smack your open hand on a table.

I was upset at the fact that I needed a permanent and rather bulky pacemaker because my new heart wasn’t beating fast enough. Taking medicine has never been a problem for me because I have always had to take medicine even as a child. I will continue to always have medicine for the rest of my life. There were new limitations that I hated, but had to accept. I would have to receive heart biopsies on a regular basis. I wished that there were other ways to check rejection levels. No more Mountain Dew. The grapefruit juice would interfere with my anti-rejection medicine. No standing in front of loud speakers or going through metal detectors. Electronic devices could interfere with my pacemaker. For my pacemaker surgery, I was fully conscious. I couldn’t feel the incision, but I did feel the pressure of the surgeons pounding my pacemaker in. The pacemaker scar hurt more than my transplant scar did. I was annoyed at the fact that I couldn’t lift my arm for a while in order to keep the pacemaker in place. I had some of the most vivid dreams and got to spend my Halloween in the hospital. It was exciting to get a whole pillowcase full of candy from everyone there.

I was allowed to walk a short distance with a wireless heart monitor. I loved to sit and watch the tropical fish in one of the waiting rooms. One day, I noticed a large family grouped together. They were crying. I learned that Denzel Douglas’ heart was failing and it was too late. He was only 16 years old. I had survivor’s guilt and cried for them. I thought about how knowing for certain when you would die would feel peaceful and horrifying. I wanted to comfort them somehow, but thought I would only make it worse.

I recovered relatively quickly and was able to go home. The tingling sensation remained for a whole month. Everyone who came in the house had to wash their hands and I couldn’t go out anywhere for three months. My dad wrote a letter to the donor family. I wanted to write to express my gratitude, but felt like I would be reopening a wound. My donor was a twenty year old male who died in a motorcycle accident.

I was home schooled poorly, but still managed to catch up when I did go back to school. It was upsetting that I had to withdraw from my chemistry class because it was the only class I shared with my boyfriend, Tony. My chemistry teacher was very fond of me and was all praises for my will power and positive approach throughout my recovery period.  trying and recovering. I learned that people spread rumors at school that I died. It was humbling and amusing.

I was extremely anxious to finally kiss Tony. He earned immense trust by staying with me I started respecting him more because he loved me despite of my medical conditions. We kept glancing over at each other while watching South Park late at night. Our eyes met and he said, “Hi.” “Hi”, I responded with and then finally leaned in. It was passionate and long overdue. I could finally return to normal life.

For many who do not have other complications life goes on normally, with in the frame work of limitation, which is as good as having a new life altogether. I wish I was one amongst them.(I fell this should be end of part one of the story which tell about the fight of young girl to get normal life. This end would make the readers curious about what happened later.)

I am Yet Positive Towards life. I will not fail my donor. I am a strong girl.

Read more about Emily here.