Spontaneous Coronary Artery Dissection

My SCAD Survivor Stories

August 28, 2018

It is beyond difficult to begin writing about the most scariest events of my life. I tried sharing my story on the “Go Red For Women” website in 2014 after my first STEMI. I just couldn’t finish. Not sure what is different now, other than I REALLY feel the need to spread awareness. I also feel this is step toward my own healing, while educating others and gaining more research. It was my hematologist that really felt there was “something missing” in my diagnoses. I decided to write about a few other experiences that have happened in between the 4 years span. They were not diagnosed as heart attacks, however, maybe there is a link. I left them out of this story as I wanted to shorten to the SCAD events only.
I am grateful to finally have a diagnosis that makes more sense on what has been the cause of my chest pains and heart issues. I would hear “ we need to get your spasms under control.” I tried to get a visit to Cleveland clinic in 2016 , but my health insurance denied. I temporarily ran out of fight as I tried to remain calm and enjoy my beautiful family, my husband and 4 children. At this time, Carley was 15, Alexis 12, Carson 9, and Avery 5. I work as a part time Occupational Therpaist at an outpatient clinic for Children’s Hospital of Michigan.
I am grateful that I finally have a more accurate diagnosis in order to move forward and to do what needs to be done with managing my new, new normal.
July 27, 2014:
I was 41 years old. My 2 older daughters, Carley and Alexis and I traveled from our second home in northern Michigan. We came to our home downstate for the day to attend a Bridal shower. I had absolutely NO idea what events were going to occur that evening. It is hard to write about it, however, it is part of the why, the reason my emotions were involved. We were enjoying a girls night, eating dinner and laughing. A blocked call came through on Carley’s cell phone. I told her not to answer it, but she did. I told her to leave in on speaker phone so I could hear. I really wish I had just hit the “end call “ button. The voice was disguised, but it was quickly evident that the caller knew our family well. It is hard to write about the feelings that followed. The call was not pleasant, leaving my daughters in tears after we found out the call was from one of our dear friends. Alexis went up to her room to cry. I could feel the adrenaline rise. I immediately went after her , to console her. I never recovered once I got to her bedside. I was trying to get the words out, “It will be ok. Mom loves you so much…” I could never finish the sentence.

The crushing feeling in my chest, so much pressure, I couldn’t get enough air. She asked me, “Mom!? What is wrong with you? Why can’t you talk or breathe?” I tried to blame it on anxiety. Well , it was so much more than that. I felt the need to pace initially, trying to find air. My oldest daughter saw my face, stating that “something is seriously wrong with you mom! “ She called 911 and ran for our neighbor. Alexis ran out too. She was scared to death and later apologized that she was afraid that she would see me die. I guess I looked like I felt. The pressure was extremely heavy and the pain was now shooting up through my jaw and down my left arm. I broke out in a cold sweat. I was drenched. I really felt like “this is it. THIS is what death feels like.” I couldn’t help thinking “This just isn’t fair. I am not even going to be able to say goodbye and I love you to the rest of my family that are 3 hours away. My husband and kids will never be the same.”

I started to pray as I heard the sirens getting closer. “Please hurry, please hurry. I can’t die in my house in front of my children. At this point, Carley was at my side and sobbing..”Mom! Mom! “ Time was moving in slow motion. My neighbor, and wonderful friend, Kirsten arrived and she looked startled when she saw me. She placed her hands on me to comfort me. She said nervously, “I think you are having a heart attack.” She tried to keep me calm and I begged her to not let me die. She said “not today. You are not going to die today. “ I could hear the sirens getting closer.

EMS was now in my great room. Things were moving fast, but slow. I will never forget a nice man named Dave, telling me he was going to take great care of me. He said the bad news was I needed to ge to the nearest hospital. My EKG showed ST elevation. “You’re having a STEMI heart attack and we need to get you to the nearest hospital. “ I wasn’t’ shocked at all, I just prayed.

Dave told me , “ Stay awake. I’m going to have you chew these aspirin, I’m going to place a pill under your tongue. We have to start an IV right away.” I tried to stay focused on his every word. I was feeling grateful that I have amazing neighbors that stayed with my daughters, trying their best to comfort & calm them. It was devastating to to leave them sobbing, knowing that I couldn’t make their pain go away and that I was the reason they were so worried and upset. There is nothing worse than seeing their faces look at you like that. A memory I would LOVE to erase permanently from my memory and from that of my daughters.

I live 3 miles from the hospital, so the ride was quick. A team was waiting for me when I arrived in ER. I will never forget the Dr that was running past my gurney, once, then again. She finally stopped by me, holding a piece of paper. She asked , “Are you Karen? I would have continued to run past you. You don’t look 41, and you don’t look like someone who would have this EKG.”

Now, I was in the cath lab. I begged them to not give sedation, or at least just half. I was afraid to go to sleep. Fear I would never wake up. I heard things like “Her radial artery is spasming . I’m injecting verapamil, nitro.. Can’t place the smallest stent. Her arteries are so small. So many spasms.” They told me, “your arm will be sore, they had to stab you 6 times to get into your radial artery. “ I wasn’t worried about my arm. I was ALIVE! So thankful to be Alive!

My brother arrived and spoke with the Dr. in the waiting room. He told him he will treat me medically and that there was diffuse occlusion in my distal LAD. It was occluded 70% after the medication was provided. He tried to place the smallest stent , but he was unsuccessful. He didn’t want to tear the LAD. There was also no plaque found so he believed that this all occurred likely from a condition known as coronary artery spasm, also known as Prinzmetal Variant Angina, which can occur after extreme, emotional stress. It made some sense, however I was confused and scared. How do I avoid Stress??

I will never forget the migraine from the nitroglycerin drip. I didn’t sleep much that night. I was crying in disbelief of all that occurred. There came a point, where I couldn’t cry anymore. Partly due to becoming numb and it also made my migraine soooo much worse.

The next morning was a blur. I spoke to many Dr’s about what had happened. Most stating that I need to avoid stress. The best part of the morning was seeing and loving on my husband and 4 children. They needed to see that I was Ok and I needed to see them!! We had a lot of family healing to do.

Unfortunately, following that visit , the day didn’t go well. I had a very rare complication. I did notice my hand and wrist were very sore, just like the PA had warned. I was having a hard time moving my hand and wrist and it became worse as the day went on. Next, was the numbness and finally, a doppler of my right arm was ordered. It wasn’t good news. At that point, I knew they found a blood clot and they continued with the IV heparin and would reevaluate in the morning.

Pain, swelling and numbness continued and unfortunately , I ended up back in surgery. I have a condition called “sticky platelets “ , and they think with that, along with the 6 attempts to place the catheter was a bad combination. The vascular surgeon shared pictures of what was removed from my arm. 3 pieces of blood clot , which resembled red worms , were removed, equaling almost 8 inches of blood clot. He said the clot extended from my wrist to elbow, the biggest he had removed from a radial artery. That event added more nights as they had to get my blood thickness therapeutic to go home on the blood thinner, Coumadin.

The monster migraine continued during those days as well. Finally, it was pinpointed that it was caused by the nitrate, Imdur. I couldn’t function on that medicine. They discontinued it, but I feared what would happen if I don’t take it? A question that was never fully answered . There was a trend to these unanswered questions.

After 6 days in the hospital, I went home. I still had chest discomfort and right arm pain, but I was so happy to be home. This was the start of my “new normal” as I was reminded. I still felt like I was living a nightmare. I had an abundance of love and support surrounding me, however, I felt so alone. The emotions took over. I tried my best to hide these emotions from my husband and children. I put on my smile on my face and tried to remain positive. I still couldn’t use my right hand very well, so I needed help with some things, and I HATED that! There was SO much swelling where the clot was removed. My husband or daughter had to give me my lovenox shots while I was bridging on the coumadin. I had an army of helpers picking my up to bring me to the coumadin clinic, Dr appts, watching kids, bringing dinners and treats. I was overwhelmed with the support, but I continued to cry. I knew my life would never be the “same”.

As a family, we laughed again, but things were still not the same. I saw a look in my kids eyes that I had never seen. I felt like they looked at me like I was Broken. Mom’s broken now. They never said it, but i just felt it. They were all still so young and needed their Mom to be healthy and I was going to do everything in my power to stay as healthy as I could. We were a very active family & I wanted to keep it that way.

In hindsight, I should have gone to therapy. My health insurance called to try and interest me in support groups for ‘Heart attack survivors”. I just imagined a room full of folks older than me that I couldn’t relate to. Ones with the “typical heart attack.” It was just another appt I would need help with, so I decided against it. I know that was a bad idea. Oddly enough, Cardiac rehab wasn’t really enforced .I later went in 2016 after an angina attack, and it helped.. I remained on the cardiac meds (metoprolol succinate, verapamil, isordil ) and blood thinners. At this point, I feel I had too many opinions, going off one med, reducing another etc. I felt like this “spasm” condition was not well understood.

July 26, 2018
It was one day shy of my 4 year “heart attack survivor anniversary “. That thought hadn’t even crossed my mind ..until later.
I was home recovering from my neck fusion surgery. I had an old injury from an accident in 1999. I had to get more fusions (c4-7). I was 9 days post surgery. I really thought I was doing well, with the exception of increased pain on this particular day. I thought maybe it was because I was moving around a little more. There was an area shortage of the muscle relaxer, Robaxin that was prescribed to me. I should have called the surgeon or my primary Dr to see if there was an alternative medicine to take. I was going on 24 hours without the medicine, one that was prescribed to take every 6 hours to control the muscle spasms. In my mind, I thought I could handle it, but soon my body would tell me differently.

Earlier in the week, we had decided the best medicine would be for me to rest at our northern home. I could relax by the water, read a good book etc.
I decided to call the pharmacy near our cottage and successfully transferred the prescription there. They said it would be waiting for me at Houghton Lake. Problem solved!

My husband came home from work and packed the car. We were waiting for my son to come home from golf with his friend. I had noticed the neck pain was getting worse, so I rested on couch. I felt an overwhelming exhaustion come over me. A few minutes later, without any other warning I felt very strange. Weakness, followed by heavy weight on my chest and then, severe chest pain. I began to sweat profusely. I initially had a hard time telling my husband, who was sitting right next to me. I didn’t want to believe what was happening. I told him I wasn’t feeling good and that I needed my nitro and aspirin. He knew after he really looked at me, that something was very wrong. He asked if he should call 911 and I agreed. I was trying my best to stay calm, not only for me, but for him and my 9 year old daughter, Avery , who now got wind of what was happening. “What’s wrong Momma?!” she said as she sat next to me on the couch. I hugged her the best I could and said, “I’m fine. Everything will be fine.” She didn’t believe me. She started to cry and said she was “going to hide in her room”. I wanted to follow her, but my body felt heavy on couch.

Suddenly , nausea came over me and my husband grabbed a bucket as he continued to talk to 911 operator .”She has already had a heart attack . I gave her nitro and aspirin.” Time was standing still. I wanted to get out of the house. Again, I had the same thoughts in my head as I did last time, “I don’t want to die in my house, not in front of my family. The memory will haunt them. Please God, don’t let me die. I am not ready God, I’m not ready” I started to pray. I told Chris to get Avery from her room and send her to our neighbors home. I knew they were home.
EMS arrived quickly, even though it feels like forever when you are in this kind of trouble. They immediately did an EKG, which confirmed my worst fears, again. “You have ST elevations , you are having a heart attack, we have to get you to the nearest hospital quickly.” I wasn’t surprised at all, but again, was scared to death. My repeated worst nightmare. I begged them to not let me die and they reassured me I was going to get quick intervention. “We’ve got you, we’ve got you”. Meanwhile , my son came home and luckily there were paramedics outside that stopped him before entering. “I need to see my mom.” Sadly , he knew it was me that needed the help. My heart broke a little more. After seeing me, he joined Avery at our neighbor’s house.

Again, We live a short 3 miles from Henry Ford Macomb Hospital, which still seems long when you need help quick. I was begging for another nitro pill, but it was denied due to my blood pressure being too low. I continued to pray, but it felt more like begging. “Please God Please…
I’m not ready. Chris and the kids need me.please..”

They repeated the EKG and were trying to start an IV. I heard them calling the ER . “Code STEMI followed by all the details of what they had done so far. Time was standing still. “This can’t be happening.”
A group of Dr’s were waiting for me when I came off the ambulance. I could hear the report, followed by so many questions. The first being , “This is the STEMI that was just called in? This is her? “ A similar response to last time. I guess my thin build and looking healthy were confusing.My husband arrived in the resuscitation room. They had no clue why I was in a cervical collar. Luckily, I was just discharged from that same hospital for the neck surgery, so all could be accessed. I could hear the fear in my husband’s voice as he tried to explain everything and he was begging them to please not use my radial artery. “She had serious complications last time. She had a big blood clot. please…”

They let my husband give me a quick kiss and off to the Cardiac Cath Lab I went. “We will try only one poke in your radial artery and then go to the femoral.We will only poke you once.” That’s what happened. They couldn’t thread the catheter in the radial artery, therefore, they used my femoral. The pain continued in the cath lab, but was slightly more controlled. My neck was hurting terribly. TOO much going on.

The interventional cardiologist was talking about SCAD. “I think this is SCAD. I can’t stent this. It will not fit.” He was speaking to the staff with details I couldn’t comprehend. All was foggy at this point and next thing I know, I was in the recovery room.

Chris was there with my oldest daughter, Carley. My second daughter was on the phone. She was at work. Chris put the phone to my ear so I could speak to her. She was sobbing. I tried to sound strong. I don’t think I was very convincing.

The Dr came in and he was showing them the recording of the Catherization, explaining SCAD and the reasons why he thought I had it . “I knew to look for it when I saw her. I brought up her cath from 2014, I believe that was also SCAD , not spasms. It affects otherwise healthy people, usually women. The artery will heal with time. We will treat her medically. “

I was still in alot of pain. My chest, my neck. I was miserable, but I was grateful to be alive. I arrived in my room. That was my first complaint. The pain. So much pain. They were calling the Dr about what they could give me.
I had to urinate at this point and I couldn’t wait any longer. I knew i had to stay flat . There is a new apparatus for woman to use instead of a bed ban. A pad connected to suction on the wall. It sounded great to me, since it would be less pain for my neck too.

My bladder was so full, I couldn’t release it. It is so difficult to urinate in a flat position. I tried to push more. THAT was not a good idea. The pain mixed with straining was a bad combination. The pressure and pain were back again, and it was excruciating. It made me have to cough. It was the strangest sensation. I tried to stay calm as I told them to get someone.. Quick. I had the best nurse that also tried to keep me calm, but said she would have to call a rapid response to get the quick attention I needed. Seconds later , a team of people were in my room with the crash cart. They put the pads on me and on the monitor they could see what was happening. “You are having ST elevations again. We see them and then you go back to sinus rhythm.” I heard a Dr say , “Someone give her some morphine and increase the nitro drip”. Thank goodness!! Finally , some relief. Far from normal, but relief. I kept thinking , “ How much more can my poor heart take?”

The days to follow were rough, especially emotionally. I didn’t read much about SCAD, as the headache was blurring my vision and the light of my phone only made things worse. I also felt a lot of anxiety and I wasn’t ready to know too much. There wasn’t one person that came in my room that knew anything about SCAD. This included staff like the nurses, the neurologist, internist, and a cardiothoracic surgeon with 38 years experience, to name a few. I happened to speak briefly with the surgeon and when I told him why I was in the hospital, he questioned , “What on earth is SCAD?” It was after this, that I REALLY knew I needed to go elsewhere for my care. Dr H. is a brilliant physician/surgeon& he doesn’t know!?

I continued to struggle with reading and researching. Mainly because of visual problems, but also from anxiety. Chris was researching enough for the 2 of us . I could see the worry in his face. SO many unanswered questions. I am very grateful for Dr. Ambulgekar, the interventional cardiologist who identified SCAD that day. It was his quick thinking and obviously , awareness that is slowly spreading, that alerted him. He came back into my room to talk to us and confirm the diagnosis again. He sounded like he was sorry he had to tell me I had SCAD , but to not let it control my life. I hadn’t plan on it, but his words made me want to know more. I knew I would be learning more very soon.
I finally had my neck pain controlled , but the Dr’s were still tweaking my cardiac meds. I knew the imdur medicine sounded familiar, and I was quickly reminded that my body doesn’t like that medicine. By day 3, when the most intense migraine struck at the same time, I knew it was the imdur. On day 2, I became violently ill, vomiting with the most force ever. They consulted neurology to see if SCAD could affect my brain. The neurologist had never heard of nor treated anyone with SCAD, but wanted to order a CT scan of my brain to be safe. I was relieved to find out that my CT scan of my brain was normal.

I still couldn’t believe what had happened. I tried asking questions. for instance , “How many times have they seen this?” I would hear the response , “It’s really rare.” That’s it! And….I didn’t like that answer, but later found out that they think I was the first patient diagnosed at Henry Ford Macomb Hospital. I received a call from a close friend, Angela who is in medical school at University of Michigan. She is in her cardiology rotation at the hospital. She was sharing information with the cardiologists and colleagues at U of M. All were concerned that I needed a higher level of care and they would provide that. I also sent my hematologist an email on the patient portal. I valued his opinion. He let me know he was out of town, but was very concerned about what had happened . He contacted the hospitalist physician, who also really wanted me to be transferred to a hospital that had more experience in treating SCAD. The Dr called to see if they would accept me at U of M. I was quickly accepted. They said I would be transferred in 1-2 days.

The next morning , the nurse said I should pack up as U of M should be picking me up. The day came and went. No transfer. Day 2, same story. The nurse case manager came to tell me that U of M had no beds and they didn’t know when one would become available. I was very disappointed. Day 3 was the same . No transfer. Meanwhile, I was able to focus without the monster migraine and made some calls myself.

I called U of M for an outpatient visit with a Dr who treated SCAD. December 6th was 1st available. I took it , even though that was crazy! Next, I called Cleveland Clinic. They said the first available appointment would be January or February. Lastly, I called Mayo clinic in Minnesota. I couldn’t believe what I was hearing. I was told if all could be confirmed , all records transferred etc, I could be seen as early as the end of THIS month! The Dr’s said I was stable enough to go home and wait for the appointment.

I retrieved my own copies of the angiograms and sent them as soon as I was discharged. I found out mailing the discs from medical records could be up to 30 days. I decided to mail them myself. I was grateful for the medical records dept at Henry Ford Hospital as they promptly faxed all the pertinent medical records.

I was ecstatic when I learned that Dr Sharonne Hayes would see me on August 30th! ! The most promising voice was on the other end of the phone. Amy, the woman who schedules these appointments was very positive and calming. I will never forget what she said . “It sounds like you need to see Dr Hayes. She will help you live again”
That sure sounds great to me…

To be continued…