Personal Stories: Cathy Mordecai
I cannot begin to tell you how thankful I am for this site. Because of the information you have presented here and the people I have had contact with, I am able to walk through this unusual course of events in my life. I am still recovering and not sure how long or what the final outcome will be. And even though I am physically limited in activities, my emotional state, my attitude and my hopefulness is far better than it was just a few weeks ago. As a result, I am now able to tell my surreal story.
It all began when I went to have a TEE in search of reasons why I have been having bouts of double vision. Since the test is an outpatient procedure, I had planned to go home that day and get right back to my regular routine as I never expected the doctor would discover anything. Next thing I know is I wake up in ICU. I am told that I have an aortic arch dissection which is more often than not–FATAL. The date of the tear is unknown as there are blood clots around the area, with a flap moving every time my heart beat, which also has blood clots in the shape of a hammer head on the end of it. The doctors fear is the blood clots will break off; the flap will tear more or tear off, or the site will aneurysm and/or rupture. The location is very rare making it inoperable. The prognosis is very gloomy. However, I am thinking the doctors and nurses have me confused with someone who is really sick. In fact, I ask the nurse “Don’t you need this bed for someone who is really ill?” It took them 5 days to convince me I had something very serious.
The 5th day the doctor came in to tell me the only thing he can do for me is to keep me on the medication to slow down my heart, lower my already low blood pressure, lower my already normal cholesterol, and thin my blood. “Don’t do anything strenuous, no lifting, and don’t get your heart rate up. My hope is that the blood clots will slowly dissipate, the flap will lie down and the place will heal itself even though in my 15 years of practice I have never seen this. Since the location is so rare and the mere fact that you have survived this long, I don’t know of anything else I can do for you.
Since I live in a very small town in Texas I asked the doctor if we should move closer to the city so that if something does happen I will be close to a hospital familiar with this condition. He looked me straight in the eyes and said, “If anything happens, there is nothing we can do for you even if you are here.” I turned to my husband saying “take me home.” The next statement from the doctor was a suggestion I get my affairs in order. Oh my God! I know I am going to wake up any moment from this horrible nightmare. I am in the Twilight Zone. This cannot be happening. So many unanswered questions, so much life not lived. I am confused and dumbfounded.
Of course, the emotional trauma was stressful in and of itself. I feel like a walking time bomb, not to mention all the medications slowed me down like a snail on valium. Know when this all started I had been tired, but did not feel as if I were about to die any moment. When I returned home, I begin to update my will, write letters to all my children (5), my husband, father, and friends, telling them all those things I hadn’t told them and contacted a Pastor friend planning my funeral. However, through the process of getting my affairs in order I felt an overwhelming peace everything would be alright. I was not afraid of dieing, but I was more afraid of having debilitating strokes that would incapacitate me to the point my family would either have to put me in a nursing home or nurse me at home. Like all of us, neither scenario was one I wanted for my family.
Each day was long yet so short. Emotionally, I was wiped out. And, out of my need to understand exactly what I had, and my desperation to survive, I began to search the internet for everything I could find. I searched and read everything possible from case studies to articles written by doctors, and research data. All the while comparing the information I read with my reports and films. Still, not finding anything that was exactly like my “sub-acute aortic arch dissection beginning in or at the base of the left sub-clavian artery I kept searching. I even listed a medical dictionary on my favorites for quick reference so I could understand the unfamiliar medical terminology.
After a month of searching, crying and agonizing, I found this site. Thank God, more information and others who have similar situations. Links explaining things I could not find anywhere else. Thank God again. What a relief. And thank God for Brain who promptly wrote me back with encouragement. He forwarded my email to Doctors who have experience with dissections who were willing to write me back with encouraging information and information of who to contact for other opinions. As a result, I sent my records and films to Mayo Clinic in MN who set an appointment in one month. Dr. Liang wrote to me explaining things I still did not understand, along with making a recommendation of a couple of different doctors. He also told me he would see me the next week in CA if I could not get in to see Dr. Coselli at the Texas Heart Institute in Houston, Texas. Since I live in Texas I preferred to stay closer to home because it would be easier on me and my family logistically and financially. Dr. Cosellis office scheduled me an appointment within 2 weeks.
In the mean time, while waiting for my visit with Dr. Coselli, the doctors still did not have an answer or explanation for the double vision which was the reason I had the TEE test in the first place. So, my neuro-opthomaligist scheduled me to have a MRA of the brain, which resulted in detecting a possible dissection in the “Right Supraclinoid Intracranial Artery” Just when I thought my condition was hopeful, I received a set back. Now things are more complicated than I could have ever imagined. Along with the MRA, Dr. Coselli wanted me to have another CT scan before I saw him. So, with all my many reports and films in hand I headed for Houston.
When I saw Dr. Coselli he said, the Aortic Arch dissection in the arch was “slightly improved” but before we do anything, we need to find out about the suspicious place in my brain. So he wanted me to see Dr. Mawad, Chief Radiologist at St. Luke’s Episcopal Hospital. He worked me in that afternoon. He did not understand why I was on some the meds the first Doctor (who admitted me to the hospital had prescribed.) So, he took me off Zocor, gradually removed the Coumadin, and then added Plavix( my teflon pill). His recommendation was to have an Arteriogram for the arch and the brain in 10 days.
I thought the last 2 months passed slowly, well the next 10 days were even slower. I made it through with the encouragement of others from the site, family, friends, and Dr. Liang. Now I have a big Valentine’s date with Dr. Mawad February 14th! When I went in for the arteriogram, the anesthesiologist came in to talk to me, I was confused because I had not known anyone who had general anesthetic for an arteriogram. I realized Dr. Mawad wanted me to be very still, no chance I would move. Four (4) hours later when I woke up in Surgerical recovery, the nurse would not tell me what was found, nor could my family come in to see me. It was another hour before I was sent to my room. My husband and father came in with tears running down their cheeks smiling saying “He could not find anything.” “What? Nothing.” “Nothing” my husband said. A couple of hours later, I was released from the hospital to go back to the hotel to go home the next morning.
So what does that mean, I thought. I am healed, healing, never had a dissection or a miracle has happened? On February 18th I was finally able to talk to Dr. Coselli’s nurse who hesitated to answer my question. She then responded with “Probably all the above. You need to stay on Toporal, Plavix and Ecotrin, have another CT scan in 6 weeks, no strenuous activities, and continue to keep your heart rate down. Now what does that mean? I take to mean there is no explanation of the miraculous results. Which I choose to believe it is just that–a miracle. Remember just two weeks ago the dissection in my aortic arch was only slightly improved with the possibility of another dissection in my brain.
Usually for me so many situations in my life become clear when I look in retrospect. The signs and symptoms were there, I just did not know what it was at the time. So in retrospect, I know the day the dissection happened. One day around the first week in September I was sitting at my desk, typing on my computer when my left hand went limp, simultaneously a severe pain in the left side of my chest began, my neck was hurting, a sharp pain under my scapula (under the left shoulder blade) joined the pain in my chest and began slowly moving down my left arm. It was absolutely one of the most excrutiating (sp) pains I have experienced, as if a baseball was ripping through my arm tearing everything in its path. I moved my left hand from the computer board onto my lap, I stood up, bent over with my left arm hanging down, intentionally rubbing my left arm with my right hand. I stood up, walked to my office doorway to get the attention of a worker in the building to call 911 as I was sure I was having a heart attack. I could not see the worker in the hallway. With the same quick onset of the pain, the pain just stopped. I knew something strange had happened, but since the pain quit as quickly as it began I ignored the episode. After all, I had been moving file cabinets and redecorating my office, so I discounted the pain explaining it to be a pulled muscle or tendonitis.
For several weeks I had bouts of nausea, persistent pain in my left arm, exhaustion, the ability to sit down and fall asleep anywhere–anytime, restless sleep at night, forgetfulness, and irritability. Not to mention I was just plain tired all the time. The double vision was happening longer and more intense about every 8 days. Much more often and longer than ever before. FYI–We still do not know why or what is the cause of the double vision.
Brian, I have written my story in such detail because it is my prayer that someone else may not have to go as long as I did before realizing and accepting the life threatening event of dissection. Also, it is my prayer for others to get more than one opinion or at least get the opinion of an experienced Cardiovascular Surgeon who is familiar with dissections. There are many great Cardiovascular Surgeons and Cardiologist but unless they have experience with dissections their treatment could be more harmful than good. In addition, I pray my story will give hope to those who are hopeless in a seemingly hopeless situation.
Brian, again thank you for providing this site. Fortunately, I have met Deb who also has an ascending aortic dissection that has not been operated. Like me, it seems her dissection is healing. I am thankful for our new friendship. I pray others will find the same. God Bless you. And God bless all who have experienced a dissection or had a loved one with a dissection. May God’s healing power touch those families who have lost loved ones from dissections. And God Bless those doctors who treat dissections.
Furthermore, to all of you, remember to tell your stories of triumph or tragedy, as your story will help someone else and bless you beyond your imagination.
May the grace of the Lord be with you all.