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- Getting to the Heart of the Matter
- Life with HCM - How we lie to hide our pain
- When a loved one dies suddenly... again and again and again
- Why it is important to know what those letters after a doctor's name mean?
- The Day that changed my life
- The Affordable Care Act: Working to provide care!
- 24 weeks as a clinical trial participant... a look back and forward!
- Lisa, We have your heart. How soon can you be here?
- Tell me what it is you plan to do with your one WILD and PRECIOUS life?
- Life with a Pre-existing Health Condition Pre ACA
- The Day that Changed my life - June 12, 1995
- Is it the “Better Care” Act or a shell game?
- Reunited with my best friend and worst enemy
- Heart,soul... and a little prayer
- Thankful for the gift of bravery
- The Last Gift
Tell me what it is you plan to do with your one WILD and PRECIOUS life?
“Tell me what it is you plan to do with your one wild and precious life?” This is my favorite quote from poet Mary Oliver. I can tell you what it is I plan to do with my wild and a precious life, Live, Learn, Love and Teach… with my heart in my hand.
My last submission left you hanging with the phone call that was going to change my life. Today I’m going to tell you about the 12 days I spent in the hospital getting my heart.
On February 2, 2017, Groundhog Day, 12:23am “the call” came. I was asleep, my husband by my side, when the phone rang. The call came from a personal cell phone, not a hospital phone line, so I was a little confused. She spoke the magic words, “Lisa, this is Emily from Newark Beth, we have your heart how soon can you be here?” Adam, my husband, sat up in bed and asked me if it was them? So I was trying to speak to the transplant coordinator and him simultaneously. I told him yes it was, and it was time, and then I went back to speaking to Emily. I said “I really would like to take a shower before I come down, we can be there in two hours.” She said that would be fine. I got off the phone sent Adam to shower first while I made phone calls. My first call was to my daughter, Becca, I told her it was time and that she should get to the hospital in about two hours. My next call was to my niece, Stacey. As she lives a few miles away we arranged to pick her up on the way to the hospital. My other two calls went unanswered. My nephew, John, sleeps like the dead so I was not surprised that he didn’t answer. My sister on the other hand, isn’t a great sleeper and never turns off her phone, but this night she slept soundly and had her phone off! I sent a message to the rest of my family and had set up a group message in advance, so they would all be in the loop.
I took a very long and thorough shower, knowing it was going to be my last one for a while. As I stood in the shower, my mind was spinning. It was finally happening. The reality that I was currently “terminally ill” and my “get out of jail free” card had just arrived, IN TIME, was just so amazing to me; I felt like I won the lottery. Interestingly, I was not scared, nor was I worried, I was excited. My 36 year journey with this wonky misbehaving heart was about to end. I had always dreamt of what it was like to have a normal heart and I was either going to find out or I going to leave this earth. Truth be told I, had never let the latter thought cross my mind. I was going to do this and it was going to be successful and my new heart was going to be wonderful.
We arrived at hospital two hours after the phone call, 2:34am, walked in the door, straight to the security guard and said “we’re here for a heart transplant”. It was surreal and exciting, even the guards smiled and were excited. My daughter and her boyfriend arrived shortly after. I had not thought much about all the prep work needed... pre-op. IV’s started, medications started, they sent me to the bathroom to cover myself head to toe in betadine (I was ORANGE!). I have terrible veins, so starting an IV may sound like a simple thing, but NO... it took several attempts. Even the vein finders machine found nothing. In the end I had 2 IV’s started in very strange places which made movement of either arm difficult. They told us my surgical time was 7:30am. Of course, I opted to go to the HCMA Facebook private group at 4am and do a Facebook Live and tell the group what was going on! We had some fun while waiting, they pumped me full of steroids so lack of sleep wasn’t an issue. Thankfully, I am a “happy” steroid person, some people get agitated or emotional… my emotions were all positive! At about 6:30 my phone rang. My sister Lynn was awake! She saw my Facebook Live and jumped on the phone from Florida... she almost MISSED it! She jumped the first flight she could to NJ. My Nephew woke about the same time and got in his car and headed over, making it an hour before surgery… good thing they pushed me back to 8:30!
It was time to say goodbye to everyone. I hugged each of my loved ones and told them I loved them. They were all teary, but I was too excited, and told them I will see you all in a few hours, “I got this!”. I left them each with a letter to read while I was in surgery. Each was personal, some silly stuff and some “what if” stuff. I did not want anything left unsaid. I’m sure they didn’t appreciate the “what if” stuff while I was in surgery, but I needed to say it. I arrived in the pre-op area and they offered me a sedative, “NO THANKS, I want to remember going into the OR,” I was pumped up with steroids and I was happy and excited, still no tears. I went into the operating room bright eyed and ready. I asked everyone if they had their coffee and a good breakfast. I think they thought I was a bit insane, but they were all smiles. I told them I wanted them to listen to good music and have a great day. Then I said, I bet you have work to do and would rather me asleep. The mask went over my face… no fear… only the promise of a life without HCM. I was OUT.
In what seemed like a moment, I was aware of a tube in my throat. I was in a bed, I was alive, but is was so quiet something was missing. That was the first moment I KNEW I had a my new heart. It was TOO quiet... my constant companion was gone I couldn’t hear her anymore. What I have not told about is what it was like to live with my HCM (hypertrophic cardiomyopathy) heart. I heard every heartbeat, every skipped beat and the pounding of each beat since I could remember. This isn’t something I would discuss, it was simply my normal way of living. It may sound strange but to me, it was normal and now it was GONE... silent, strange, yet somehow reassuring. As I lay in the bed awake, but unable to move, I tried to move to let someone know I was awake… all I could do was move my toes a little. I opened my eyes, it was 8:05. Was it Thursday night? I told myself yes, I was wrong it was Friday morning. It had been a day since I went into the operating room. I started to gag against the intubation tube; thankfully, they pulled it just as I vomited. That was not pleasant. I dozed back to sleep. The next thing I recall is my family coming into the room it was about 10am. I was shocked to see my sister, who last I knew (in what seemed moments ago) was in Florida.
I was moved to a chair by 11am. I preferred the chair to the bed and stayed there for several days. Seeing my family was so reassuring but I knew I looked rough and they had a hard time with that. I had tubes in my neck, bandages on my chest, temporary pacemaker wires, chest tubes with blood draining from my body, and a urine catheter and a huge bank of IV meds being pumped into me. I was awake but they were giving me morphine. As soon as I could verbalize it clearly, I begged for something OTHER than morphine because I hated the feeling of drifting down the “rabbit hole” into the fog of morphine. They switched me to oral Dilaudid (hydromorphone), which cut the pain and kept my head clear. Friday afternoon they got me on my feet and I took a walk around the floor. It was an awkward and slow, but I did it, ONCE. The next day I walked again and a bit more confidently.
Sunday was “Superbowl Sunday.” While you were all at parties, I was having a killer migraine and sitting in my chair. When I had to cough, grabbing my “heart” cough pillow, I tried to cough hard and clear my lungs… success and CRACK. I FROZE. What was THAT? Right away, nothing “hurt”, then I sat up and the pain pierced through me, I screamed. In ran a doctor, he just asked “WHERE” I pointed to my right upper chest. He pressed on my chest, no pain, then he pressed my side, my rib and I screamed again. He calmly said “what happened?”, I said “I coughed and heard CRACK” , he said “you broke your rib, not much to do about it, give her some more pain meds.” It was about this time I noticed that the wound from my implantable defibrillator (ICD) removal (what is an ICD) was on my chest, not under my arm where it had been implanted. I also had a HUGE hematoma, and a drainage tube in my chest for this site. So let’s recap my “injuries” my sternum is cracked, my left chest is swollen and painful and I have a broken rib on the right. These injuries made taking a deep breath nearly impossible but I was using the tools given to me to move my lungs. However my lungs really didn’t want to play along, so there was a pneumonia scare and they treated me for it which meant IV antibiotics over the next few days.
Monday was the day my heart was to be returned to me and my husband was to ship it out to the University of Toledo Ohio so that it could be preserved with Plasticine to allow me to retain it as a teaching tool. To me this was more of a logistics issue, so what happened next took me a bit by surprise. In walks my “rock star” of a surgeon, Margarita Camacho, MD with a small plastic container. I had thought the container would be given to my husband who would take it to be shipped. Thankfully, my niece thought to bring her friend, Sarah, a photographer to capture this moment. I was 4 days post op and Dr. Camacho opens the container and pulls out my heart and hands it to me. I didn’t expect this and was shocked to first SEE, then HOLD the thing I loved and feared more than anything else on this earth. I admit my first words to “her” were not the kindest. I said “So you are the little bitch causing all this trouble!” I then said “Thank you for holding on as long as you did!” Feeling the weight of my dense, thick and heavy heart was surreal. It was in that moment I appreciated how “light” my new heart felt in my chest. It was an amazing moment. It was an ending and a beginning all at once. I was thrilled that many in my family were present for the moment. My heart was given to my husband who left to ship her off to her future. I look forward to being reunited with her in a few more weeks!
I spent 2 more days in ICU and then off to a step down unit for 6 more days of recovery. For about 8 days of my stay, I had gifts in to give to each shift nurse. I had thought I would be in the hospital for the Christmas holiday or there at least close to the holidays. So I had packed little gift... why, I don’t know really I just thought if I was getting an amazing gift, I wanted to give gifts and smiles to those around me. It was fun to give the gifts out and see the surprise on their faces. They were just little things, like socks, hand cream and little kitchen trinkets but it was more about showing appreciation to these amazing people. I had the most outstanding nurses, aids and support staff.
February 13, my discharge was planned for the next day, yes Valentine’s Day, the “heart advocate” was going home with a new heart. It was also National Donor Day! I met with the CEO of the hospital that morning, Darrell Terry. I wanted to tell him personally, why I chose Newark Beth Israel for my transplant and share my experience. I had also opted to share my story with the public relations department in hopes of raising awareness of HCM and the need for organ donation. I will write more on organ donation in the future. My entire care team (with the exception of my friend Mark Zucker, sadly he was not in the hospital at the time of my discharge) wheeled me out of the hospital, and I was honored to be have my “transported” in the very capable hands of non-other than CEO Darrell Terry. A local TV channel, News12 NJ, came out on Valentine’s Day to film me leaving the hospital with my new heart. They took the most emotional part of the interview where I thanked my donor family and my donor for the gift of life. My story captured a bit of international media exposure, thanks to a passionate HCMA member who stepped up to play my publicist while I was in the hospital, here are some of the links to articles covering my journey.
I arrived home shortly later to my niece, daughter and her boyfriend with lots of fun Valentines gifts and balloons and a special lobster dinner! It was an amazing day! God Bless my donor and her family.Learn how to become a donor today. In my next post I will tell you about the HCMA and how it all began!