Starting off my story, I feel it is important to start by saying I had a grade four concussion in December of 2017. Most of my memories during that time, and in the near future, are blank in some places, and in others it is foggy. However, there is one moment where I fully remember and this is where my story begins.

My story starts on a Wednesday night in the parking lot of my cheer practice. My mom got a call from my uncle’s doctor. The mood in the car immediately shifted. When I saw my mom’s face change from a giggly smile and singing music with me in the car, to an instant change in mood, and it suddenly got scary. This call was one of many however it stood out to me simply because it was when everything got serious for me. In this moment many things came into my head but the one most important thing was instantly regretting not having enough time with my uncle.

Families go through everything together, challenges, arguments, successes, and most importantly we experience life with each other. There was a time in my life that my whole family was not together. There was a time that I did not know my Uncle Bill enough to know how to feel when he had his first heart attack. When this happened the first time it was kind of expected but I still wasn’t sure how to feel or even how to understand what was going on at the time. He eventually got over the heart attack and continued to just go through my life as a distant uncle. When things went south for him again is when I actually started to get to know him and him get to know me.

He got so sick that the environment he was in at the time was not the best for him so he moved in with my mom mom. My mom mom is my best friend. Growing up it was always so important that I go see and visit with her as much as I could. So when I would visit her I would also hang out with my uncle bill. Although he was sick he still managed to put everyone else above himself. He did not know me at the time but he did everything in his power to always make sure he never went through life again without staying close with my family and I.

Throughout this time of getting to know my Uncle Bill he progressively got worse. As soon as we thought there was a light at the end of the tunnel, something would push us back and we would have to keep climbing up again. My family was always very “glass half full”, going through everything and even when things got dark they still managed to find a positive in a bad situation. Although I do not recall what exactly the phone call was about, as I was sitting in the car with my mom right before cheer practice and her mood changed in an instant, that is when I knew it was bad and going to get worse. My mom rushed to the hospital, called my Aunt Barb, and basically yelled at doctors to try harder.

I’ve heard this many times and I believe it with my full heart, my family saved my Uncle Bill’s life. Yes, the doctors were amazing and there was one doctor in particular that did everything to save my uncle. I believe it was the power of love and fight in my family right alongside my uncle through the worst days of his life that truly saved him.

October 8th 2016, was my brother’s birthday, also happened to be the day my uncle had a robot put into his body to manually operate his heart. Yes I know what you’re thinking, sounds wacky. But it was actually very cool. It was called an LVAD, Left Ventricular Assist Device. This was basically a machine attached to his heart beating it for him. He would have a battery pack in a cross-body murse, man-purse, that he would need to keep charged. Yes, charged. He would plug himself into the wall at night to live another day. When you would put your ear to his chest you would hear nothing but a faint sound of a machine working. My uncle had no heart beat at this point, his hands were always cold, his skin was always pale, and his body was very limp, however he was walking, talking, and even busting on me for stupid stuff as uncles do.

My memory from right after this fades into the day my mom told me my uncle needed a heart to survive. I don’t know where I was exactly or even the words she said. All I can remember so vividly was the broken tears in my mom’s eyes when she told us my Uncle Bill was going to die if he did not receive a heart transplant. As time grew longer doctors told us our luck was running out and there was little time to find a heart to save my uncle’s life. I remember the day doctors told us he only had days left with us.

Just when we had all come to terms with the simple fact that he was leaving us soon, God sent us a miracle that we are forever grateful for. September 5th at 12:00am I woke up to my mom standing in my doorway crying, I was so confused. I had only just gotten to sleep because I was so anxious about the first day of junior year the next morning. When I asked what happened she told me we got the call. A million things went through my head and the simplest thing was how were we all getting to school the next day. Those two simple words changed our lives forever. This was the call we’ve been waiting on. This call had told us there was a heart for my uncle. They were required to tell us the heart was a compromised heart, this could mean anything from HIV positive to the person had one tattoo. We were willing to take the risk. The day we got the call was the day my uncle’s new life had begun. Risks to a new heart were always in question, the biggest risk was heart rejection. This meant the new heart could reject the new chest it was in.

Me and my brother were able to go see him the next day. My mom had prepared us to expect our uncle to still be weak and not his 100% self. When we walked into his room and saw him sitting up smiling with rosey cheeks, tears filled my eyes. This is the reason we went through everything we’ve gone through. I can not be thankful enough to the selfless family who donated their loved ones organs. Due to this simple act of selflessness, my uncle received a second chance at life. And for this myself and my family are forever grateful

The Story from my perspective……. This is the task assigned to all of Bill’s family, to write THE STORY from our personal perspective.  This seems like an easy task, however I have been staring at a blank screen for days now.  Bill is 13 years older than me. My brother, my protector, my “drop everything for me” person. I never in my life thought the tables would have been turned.  I was all those things for him.  I had to be. I had to sign the papers to make medical decisions.  So this task is a hard one because I don’t know where my story begins.  Siblings is a term not everyone understands.  Not “step” not “half” just siblings, period. The bond that siblings have is undeniable. The love is a special one.  So I guess my story starts at a place where that was not understood.   My brother Bill and I were not on speaking terms.  He made a decision at the time that he thought was best to save the integrity of his family.  So in turn there was no contact with him or his children.  One day I arrived at the hospital for my shift just like any other day.  Little known at the time that day would be the beginning of my story. 

Your attention please….SEPSIS ALERT ER19…….your attention please………. SEPSIS ALERT ER19.

Like any other shift, I went to do my job, went to the SEPSIS ALERT. 

It was my brother.  I tapped out and waited for a call.  After a while Bill called me to tell me he was in the hospital and told me I could come to see him.  After what seemed like days and due to an amazing questioning physician, we had some answers.  I excused myself from the room, went to the hall and called my sister.  Crying, I explained that it was bad.  Bill’s heart was failing.  He had three blockages.  100%, 95% and 75%.  She told me she was on her way and we cried some more.  After that Bill was in a long road to health.  He had many heart attacks.  His typical mesh stents were grabbing clots and causing attacks.  I distinctly remember sitting in the waiting room and having a young, open-minded surgeon come into the room to tell us Bill was dying.  He had made one last effort using metal stents.  It was only a matter of time till it failed.  I asked if he could get a transplant and he said no.  Bill was too sick.  He did give us the name of a vascular doctor to consult but wanted us to know that Bill was very very sick.

So now after all this Bill had to start on many heart medications.  Side effects of meds are a very real and scary thing.  Bills kidneys were failing.  We made an appointment for a informational class to start the kidney transplant procedure. Bill ended up admitted that day to the hospital where he had a cardiac consult.    At this time I did not work on Wednesday’s.  So every Wednesday we had an appointment to do to.  In the end Bill needed a heart transplant.  He had to go to 23 appointments to be cleared for transplant.  It is ironic how many times he ended up on and off of the transplant list after that. He wasn’t sick enough or too sick. Between appointments Bill would end up in and out of the hospital.  Everything just flew by until September 2016.  Bill was so sick. He was determined to be in kidney failure.  They needed to do dialysis immediately. Once placed on dialysis, he had another heart attack.  It was the beginning of the worse. Within one week Bill died.  Well technically he was only kept alive by a heart lung machine.  Doctors disagreed on how to proceed. Some said he was too sick and we should let him go. Our hearts were breaking when one amazing man and doctor said to us that he was willing to try.  Bill was going to die if we did nothing but had a huge chance of dying if we did the surgery also.  WE DO NOT QUIT in our family. Losing is just not an option.  So we all agreed to surgery to place a LVAD (left ventricular assistant device) into Bills heart to help his heart beat. Something his body could no longer do for itself.  He came out of surgery with an electrical cord coming out of his stomach to attach to batteries and keep him alive.  He almost lost his colon from extensive bleeding.  He was so week needed to learn to walk again. Was in the hospital for 3 month.  Over the next 11 months I changed his connection port every Wednesday.  I would always tell him it was his last week I was gonna do it because he was gonna get the heart by next week.  One week I didn’t tell him that, he didn’t need me to do it the next week because we got the call.  On September 2 Bill was admitted yet again to the hospital for more blood. You see the LVAD was keeping Bill alive however it was depleting his blood supply.  Bill needed 108 units of blood in those 11 months.   Labor Day weekend was upon us and we were having a picnic at y mother’s house.  My sister, my mother and myself had a private talk that day. We agreed that we were losing Bill. We still had hope however it was fading some.  We knew how sick he was and didn’t know how much more his body could endure.   Bill told us that the doctors told him if he didn’t receive a heart within the week he wouldn’t make it any longer.  Labor Day Monday we stayed home and decided to go down to see Bill that Tuesday.  My kids first day of school was Tuesday so I had a lot of things to do to get them ready. It was a long day and didn’t get to bed until later than normal.  I must have closed my eyes around 1130pm.  At 1211 I received a call from my sister telling me that we got “the call”.  I was so confused.  I couldn’t remember what that meant.  She said, “Bills getting his heart!”  OMG, now what. I knew we wouldn’t shower for a while so I got ready to get in the shower. Then I realized I needed to tell my kids and find a way for them to get to school the next morning for the first day of school. I stood in my oldest childs doorway and was crying.  She woke up looking so scared. You see I was naked and crying.  I told her we got the call. Uncle Bill was getting a heart!!!  In turn the other kids woke up and found me crouched in the bedroom rocking trying to figure it all out.  I tell this part of the story because I am usually a planned, and figure it out type of a person. At this time, I was lost. So many emotions going through me. So many people needing me all at the same time.  I straightened my crown and got it all done. My cousin helped with my kids first day of school, my oldest daughter put the kids in bed with her all snuggled in my room. I was picked up by my sister, brother-in-law, and mother and off to the hospital we went.  Silence was all there was in the car that night. No chatting, no banter, just silence. All of us in our own minds with our own feelings.  When arriving at the hospital at 1am we sat and waited with Bill. We had laughs, took pictures, we gathered blankets and pillows from around the hospital, and prayed.  At 2pm they came to take bill for surgery.  We all joined hands, nurses, doctors, clerks, and family and prayed for Bill and all the staff involved.  Then after tears they took Bill….. Oh wait, no it was a false alarm.  Not Bills turn wrong floor. Oh My. The orderly was on the wrong floor.  Accidents happen.  Now 3:30pm Bill is on his way to a surgery that none of us have any control over.  We gathered in the OR waiting room and did just that, waited.  We had to wait for the donor procurement team to inspect the heart, hold it in their hands and deem it a suitable organ for transplant and also a good match for the recipient. So we waited for that call.  Then we waited for the team to hear the heart was now at the hospital where we were.  Out of nowhere the phone on the wall rang. I answered it and it was the nurse in the OR with my brother.  She was giving us an update.  Her words are as clear today four years later that they were that day. “Your brother is doing great.  We have the LVAD out, his heart is out and we are cleaning his chest cavity.”  WHAT!!!!  Oddest phone call I have ever received.  I was thinking, “Shouldn’t you get back to him?” All I could imagine was them with a rag and pine sol cleaning out his chest like a bowl. The night went on. We were hungry, tired, and didn’t want to leave the waiting room.  We received the call that the new heart was connected and beating. The doctor told us the new heart looked like it fit better than his old heart. Like it was made for him.  My emotions were so all over the place.  Someone was grieving. Some family lost someone they loved.  Some family made the ultimate CHOICE to save another human being. A human being they didn’t know.   We had my brother back.  Bill had a shot. One that he didn’t have a few days ago.  We were allowed to see him two at a time.  He was sleeping and the first thing I noticed was he was pink.  You see since he had such problems with his blood supply for about a year, he was always pasty and gray.  He was pink. Healthy blood flowing through his healthy heart. 

Sleep came easy that day.  We went home, rested and came back early the next morning.  My mother and I were expecting to see Bill in the same state we saw him in previously.  We went in and were chatting with the nurses asking how he was.  They said, “See for yourself.”  As we turned and looked into his room, Bill was sitting up, smiling, and waving to us.  I get chills writing this. That moment was the sigh. The calm. The moment we were fighting for, for over two years.  He gave us a stethoscope and we listened to the strong amazing heartbeat of a selfless person.  He rejoiced. Praised God and them prayed for the donor’s family.   I sent pictures out through text messages.  My sister the first to respond.  Calling me crying.  Unbelievable is what it was.  My kids, sitting in quiet classrooms.  Gasped out loud. Amazed at the miracle we were seeing. 

Life has been a whirl wind since that day. Weekly hospital trips for checkups. Then monthly to bi-monthly. To now yearly.  Medication classes. Side effects good and bad. My brother is thriving.  He is still just a man, however he lives because of the amazing gift he received. He knows that.  He struggles sometimes wondering why him? We don’t have those answers. All we know was that God isn’t done with him yet.

There are times I wonder why I fought so hard to keep him alive, I wanna kill him sometimes. There is one word for that…… Siblings.

ANOTHER HEART ATTACK

This all started with a heart attack. Doctors would say your lucky it wasn’t that bad. But really tell me what isn’t bad about a heart attack? Your ok for a bit, but then it all goes crazy. They say you are in heart failure and the next time could be the end. So the long road begins.

Another heart attack. This time it far more than just the heart his kidneys are failing. We all meet at the hospital they tell us he needs to start dialysis now. They come to his room with the equipment and start the procedure then all hell breaks loose he is in congestive heart failure. This is it they call a code people come from everywhere. I, we, all of us are losing him they tell us he can’t handle the dialysis they can’t do it. Then as the hours go by a fever starts he has an infection. The fear of losing him is real. We can tell he is scared he asked us not to leave him because he is afraid he is going to die. My sister and I spend the night right by his side when he would wake up we would let him know we were there and he was safe. The fever isn’t getting any better and his heart is getting weaker. His doctors decide to transfer him to the ICU unit. Then we are told ‘we can’t do any more for him.” He is being transferred to Temple Hospital. As we wait for transport to take him to temple friends stop by to say hello and for all they know goodbye because he is that sick. When the ambulance arrives we let him know we are going with him all the way never leaving. We take the short but longest ride to Temple of our lives. We have no idea what will happen or if he will be strong enough to survive. We get him settled in his room he is in good care the nurses and doctors get him all set up they assure us they will take good care of him. I lean over his bed as we are ready to leave and I said to him “I will be back tomorrow and promise me you will  be here. Just keep fighting”

As time passed he has good days and bad days his doctors are encouraged by his progress. But then it happened again. The phone rings he has taken a turn for the worse. He is taken to the ICU and put on a Heart Lung Machine (a machine that takes over the function of the heart and lungs) to give his body a break he is so weak. Now what? What is next? How much more can he take? The only option left they believe and his best chance of survival is an LVAD (left ventricular assist device) (An LVAD is an electromechanical device for assisting cardiac circulation, which is used either too partially or to completely replace the function of a failing heart) and failing it was in fact it stopped beating not once but about 7 times in all. Off to surgery he goes this time I promised him I would be here when her came back. We wait in the family room not knowing what the outcome will be. After what seemed like forever the Doctor comes in. He sits with us and he laid it all out on the table. He tells us that they have successfully implanted the device but only time will tell if it will work. The doctors also let us know there was a point in the operating room when they all just thought he is just too bad maybe they should just let him go in peace. But they didn’t. They told us he had a long hard road ahead of him but if he kept fighting he would make it. He is taken back to the ICU where we can see him. You walk into the room he has so many tubes and IV’s and medicines you can barely get near him. He will sleep now and we will wait. The nurses promise they will take good care of him and will call if they need us. I lean over his bed and say “I will be back tomorrow and you better be here”

Again another phone call this time he is bleeding not just a little, but well lets just say he shouldn’t have survived. His nurse is amazing he won’t leave his side he keeps telling him to hold on thy are going to fix it and fix it they do. He has a long road back and a new lease on life. He spends 3 months in the hospital. I do believe at times he wanted to give up but he didn’t he couldn’t he promised he would be there when I got back. He needs to learn to walk again he has lost all muscle tone and strength. But with hard work and determination and a strong team of people around him who will not let him give up he comes home. The bleeding is still an issue just about every two weeks he is admitted to the hospital for blood transfusions because they can’t totally stop the bleeding. What’s next he can’t keep going on like this it isn’t good for him or his other organs. His body does not like the LVAD some can live on it for a long time other not so long and he was one of those.

Next step The Gift of Life a Heart transplant! How crazy the thought to take another’s heart and have it beat inside your body. We have lots of conversations about it just the fact that someone has to die for you to live. What a gift. That another family is grieving and yours is rejoicing it is the ultimate gift one family could give another. We have conversation on how can you live with the guilt but then without it you wouldn’t be here to have the guilty. It was a truly emotional time for everyone. So as we all prepare for this and there is a lot that goes into this is isn’t like anyone can be on the list you have to work for it and be the perfect match and condition have to be right not to sick not to health. Mentally and physically you have to be ready. Then one day he isn’t feeling well he goes and checks in with his doctors they admit him to the hospital. Here we go again his LVAD is failing his heart isn’t strong enough to continue much longer. He. We are told this is it the only way you leave here is with a new heart or you don’t leave. We visit the hospital as much as we can, we have no idea how long his heart will hold out. But every night as I leave I say to him “I will be back and you better be here Promise me.

Then one night we just crawl into bed just close your eyes and the phone rings. You jump up. You look at the caller ID. You answer the call and you hear “Hey I am getting my new heart tonight.” Now your brain is on pause you cant speak you can’t move you just spit out nonverbal gibberish. You jump for joy you cry you have every emotion that is posable then you get up and get dressed grab some snacks for the long wait and you take that drive to the hospital. Then you wait. The work that is put into The Gift of Life is an amazing thing they work so hard to find the perfect people to match the gift they are about to receive. As we sit and wait one doctor after another come into the room they all tell you they are part of the team that will be in the operating room. But I only remember one he was just like any other doctor at first then I hear him say his name but then he said to my brother “so I am on my way to go get your new heart.” I am speechless all I can do is look at his hands. They will hold the heart that will save my brothers life. Please be careful. To anyone else they are just hands not to us. The team is ready the heart is getting ready to transport. They come to take him for surgery. This is it the live or die moment. So now we wait again not knowing what the outcome will be. The phone rings and update from the nurse “all is well.” The heart is here they are really doing this. A few hours later the phone rings again an update from the nurse “his new heart is in and it started right up.” Joy, tears, laughter once again the emotional rollercoaster. We wait till he is in his ICU room and before going home I lean over him and again say “I will be back tomorrow and you better be here Promise me.

Once again we get in the car for the ride to the hospital park the car and take the ride up to the 7^th floor. We callback to ICU ask to be let in to see him. To our surprise there he is awake sitting up talking and looking amazing. The doctors come in when we are there they all say how well he is doing and how perfect the new heart is working. In just a few days he is moved down to the regular heart floor. All of the nurses and aids that have been caring for him come to see him they all say how great he is doing. After a few weeks we are told he can go home and get back to living his life. The best day was picking him up from the hospital him walking out saying goodbye to all of the nurses, aids and anyone else he made friends with. No wheelchair needed here we walk to the car he stops for a moment I ask you ok he says yup I am just savoring this moment I wasn’t sure I would ever walk out of there and the fresh air just feels so good. I think we all took a moment at that point to reflect and thank God for not taking out brother from us.

RESILIENCE

Heart attack. After heart attack. After heart attack. It all started in or around 2015 from what I can remember. My family and I got a call saying Uncle Bill had a heart attack and has been admitted to the Aria Torresdale Hospital. H was treated and released. Time goes on maybe months or so then another phone call. Another heart attack. Once again, he was treated and released. More time goes on and he is admitted this time it is not good. He is laying in a bed on the heart floor of Aria Torresdale Hospital. He is slowly crashing. So much so that we get a call saying that we must come to the hospital because the situation is not looking good. As he is laying In the bed his room is overflowing with techs, nurses and doctors you name it they were in his room along with multiple machines that were beeping and flashing. A nurse and doctor come out of the room and say that he needs to be put on Dialysis because his kidneys are failing. He could die without it. Chills come over me and the family. Doctors start Dialysis thinking that would solve the issue. No. It is only making it worse. Uncle Bill has yet another heart attack, because his heart was sp weak it could not take the dialysis. We are told that Uncle Bill will be getting transferred to the ICU the Intensive Care Unit to be watched and monitored 24/7. In the ICU things take a turn for the worse as if it could get any worse. Uncle Bill has turned septic he had a high fever and was very lethargic. It was like he wasn’t even there. At this point doctors and nurses are telling my family and I that this does not look good and to have friends and family come say their final goodbyes. Uncle Bill was so scared as were all of us. My mom and Aunt Heather took turns staying overnight with him to let him know that he is okay. He did not want anyone to leave his bedside. I remember giving everyone a break and sitting bedside just watching TV. I recall getting told that Aria Torresdale Hospital could do nothing further to help Uncle Bill. Ok so now what?

Temple University Hospital comes into the picture. I remember getting told that Uncle Bill is being transferred to Temple. My mom and Aunt Heather followed behind in the ambulance. I remember being at work one day and getting told that my mom was on the phone. It was about Uncle Bill. She told me that she was coming to pick me up and that we needed to get too Temple as soon as possible. We get to Temple and we are being told that Uncle Bill is in grave condition and something needs to be done quick for him to have any chance of survival. My family and I sit vigil in the waiting room for a meeting with the doctor. The doctor explains to us that they can place an LVAD in his chest. A LVAD is a Left Ventricular Assist Device. I remember thinking to myself okay so how long is that good for and how does that work? The doctor explained to us that he will have to fully rely on batteries to keep his LVAD charged and keep him alive. I recall this being a long surgery as we waited in the family waiting room for what seemed like an eternity. The nurse lets us know that we can go and see him two at a time. I go in with my mom. We gown up and walk into his room. He is barely recognizable with cords and wires coming from every which way. I was very intimidating. I stand there and let Uncle Bill know that I am here. He recovers from the procedure eventually and gets to go home. His whole lifestyle suddenly changes. My only thought is “what is the power goes out?” Months go by and suddenly he takes a turn for the worse yet again. He is admitted bac to Temple. Every Saturday morning for a couple of hours we could go and sit with him to let him know that we are there for him and just to keep him company. Flash forward three months he is finally able to leave the hospital with my mom, aunt Heather and mom mom.

The call. The call we have been waiting for. A September night in 2017 at about midnight the call came from Uncle Bill himself. My dad answers the phone. My comes into my room wakes me up and and yells “Uncle Bill is getting his heart!!! he called dad and I are leaving!!!”. As I try to go back to sleep I cant help but think wow finally. The morning comes and I reluctantly go to work. My phone is in my pocket all day just waiting for the text to say he is in recovery. Days go by and we visit him on the 7^th floor of Temple University Hospital. I am thinking that he will be laying in bed and unable to get up. No. I was wrong. We walk in and we are greeted with a smiling face Uncle Bill is sitting up and very cheerful. We are shocked. About 10 or so days later is finally ready to go home. The doctors and nurses, but especially the nurses all say goodbye to him. Months pass by and we are at the Gift of Life Donor Dash. In the rai. My cousin an I running around looking for ponchos. The whole family walked the 3 mile or so walk to support the donors and recipients, but especially Uncle Bill. Uncle Bill stood at the finish line and waited for us. We all celebrated at the finish line. This whole experience from start to finish has been something that I will never forget. Our family is so much closer because of it.