My Open Heart

I was scheduled for open heart on April 9th, 2009. I decided to go with a fairly new procedure called robotic open heart. Instead of cutting straight down the chest bone(sternum), I would be cut mainly on my right side. One large cut underneath a person's right breast and several other smaller cuts to place a camera and the robotic arms. Depending on whom you speak with the pain initially is much worse due to more muscles being involved. But, a person heals much faster with this type of procedure. The average stay was 4 days. Sounded pretty good to me. I was just desperate to feel better at this point.

As surgery approached I did get very fearful. Not of pain this time, but rather would this fix me? I had been through so much already that I was fearful to go through all of this and find out that I had some other rare issue. Also, I had no one to talk to about this procedure besides my doctor. I felt that he was a little biased. After all wasn't I in a way his guinea pig? I was also a little timid about the bypass part. Yes, it's been performed a million plus times. But, not on me! To think that my heart was going to be stopped and my lungs deflated was so unnatural. Being in the medical field I know to much about the possibilities that could occur. Sometimes ignorance is most definitely bliss.

We arrived as per instructions at 5:30am for pre op. Then we waited and waited. It felt like a life time. I never knew when they were going to take me back. After about 2 and 1/2 hours of waiting my doctor walked in and said that most likely my implant would remain in tacked. It would be to difficult to remove it due to tissue growth that had occurred on top of the implant. I signed my final consent and then anesthesia walked in. I'm so thankful for them. The resident was about my age and I had the feeling she could read my mind. I hated going into that cold OR and being strapped down. I would feel alone and tremoring while trying to put my game face on knowing that my heart would stop shortly there after. She was a gift from GOD. She encouraged her mentor to give me a little something before I went in. I literally watched them put the Valium in and was out cold.

Apparently, the hard part about open heart or any major surgery is the waiting done by your loved ones. It took quite a few attempts and almost 2 hours to get my swan ganz line in and arterial line. Finally, surgery was started it lasted about 4 hours(6 in all). I was on bypass for 42min. My heart started naturally on it's own. No shock needed. Just a little medication to get it back in rhythm. As far as cuts go, I had a 4 inch cut in my right groin, about an 8 inch cut under my right breast, 3 half inch cuts below my armpit, a cut for the pacemaker wires/blake tube, and another half inch cut where the chest tube was.

I awoke on the ventilator(a breathing machine). My body felt it first before my eyes. My family was at my bedside. I heard my sister and husband. I was told surgery went well and I was part cow. What? These drugs are making my mind go crazy I thought. Apparently, my implant never had deployed correctly on my right side. The mesh was folded in and the nickle prongs were protruding upward. My old surgeon had to be called in to help with the removal. In it's place bovine(part of a cow's heart) tissue was sutured in. I was told later that open heart saved my life. The implant was causing clots to form which was a large possibility to cause a massive stroke. Also, the prongs were dangerously close to vessel puncture. After about 2 hours post op my blood pressure was unable to be stabilized. I was bleeding profusely and needed to go back to the OR. I was so weak at this point I signaled to please resedate me. Luckily, my sister was there as translator for me. Within minutes I was out!

I was taken back to the OR and reopened. Apparently a large hematoma(large formation of blood) formed under my original opening. I was lucky it was nothing more. Although, It was enough to be given 3-4 units of blood, about 40 pounds of fluid, a chest tube and internal pacer wires were placed. I was returned to the SICU. From the pictures I didn't look quite like myself. I was having trouble maintaining me blood pressure (averaged 50/40mmhg) so inturn fluid is bolused in. Due to such a low blood pressure my heart was effected. Eventually, my heart rate dropped below 30. I had a new junctional rhythm and my blood pressure was unreadable. In an effort to aid my heart it had to be artificially paced. Meaning a machine continuously shocked my heart. So, there I was on a ventilator, receiving blood, receiving fluids and being shocked wide awake. A nightmare like no other! I was given no sedation due to the fact of such a low blood pressure. I thank God for shock. I was in and out of consciousness. I awoke once more signaling to the nurse to please at least take me of the ventilator. She was hesitant, but called the respiratory therapist. I showed the respiratory therapist I could breath on my own. After another hour of a weaning attempt(a test to see if you can breath on your own) blood was drawn and I was extubated. After I was taken off the ventilator I was able to communicate and begged to stop being paced. I was shocked that they listened! Then, after about 20 min. everything seemed to improve I was one my way to recovery!

My recovery had to wait a few more hours. Apparently, I wasn't improving as fast as the staff liked. I was told that my blood pressure was still drastically low and my heart wasn't cooperating. A nurse practitioner walked in and stated that there was a large possibility that I had a grade 4 aortic tear. I knew instantly what that meant. Surgery again! She was practically in tears. If this were the case I might not make it through this surgery. I looked to my nurse for support. She held my hand and stated, "We don't know for sure Anne, hang in there." I decided not to tell my family until I had to. They had been through so much already. My story sounds crazy. How much devastating news can one family take! I had to wait 3 hours to finally hear that everything was o.k. My blood flow was just having a little trouble finding it's new pathway. Within 1-1/2 days I was placed on the step down unit. My recovery at the hospital was difficult and I could go into more detail but why? Those who know me know that I don't tolerated medications well and tend to have every side effect possible. The most difficult part was finding out what pain management worked best for me. The hardest part was the chest tube and drains. Once they were all removed it was smooth sailing. On average I was loosing 12lbs a day of fluid. I felt so relieved once all that weight was lifted. I was discharged after 7 days.

The Next Six Months

The next six months were torture. Not, due to the implant, but rather the fact that I never seemed to be getting better. I called my doctor at one month and two months post op and he stated, "Give the implant time. You might have some residual shunting, but it will go away once tissue growth has occurred." The luxury at working at a hospital is the availability to equipment. My oxygen level was still dropping into the 80s(normal 92-100) and my heart rate would shoot up to 130 just standing. In addition when I walked it would sore to 170-200. I was exhausted from my heart pumping so hard to try and compensate for my low oxygen level. I was forgetful and always winded. Sometimes I would have to take an extra breath in the middle of a sentence. Then at 3 months, 3 and 1/2months, and 4 months post op I had 3 TIA(trans ischemic attacks). AKA mini strokes. In my case I lost vision anywhere between 30min.-1 hour. My first one I had slurred speak with the vision loss. How is a TIA treated? Just observation. Most of the time a person recovers completely from them. I was already on a blood thinner. TIAs are mostly an indicator of something bigger to come. Of coarse I called my doctor and a TEE was performed. He stated, "It looked fine. Just a little shunting which would resolve." I completely understand why he wanted to wait. Sometimes it takes as long as one year to fully close. But, what he failed to remember is that all my TEEs were performed laying flat. That was when my defect tended to be more closed. When I sat up or walked it was still bursting open. He would never see this unless he performed an echo sitting up or walking. He wasn't in my body. He didn't know how hard my daily life was. By month 5 I had enough. My oxygen level was now as low as 66%(that's right). My heart rate was always soaring. I was having numerous cyanotic events(blue face, fingers and feet). Lastly, I was wheezing. After speaking to my primary cardiologist and a pulmonologist it was concluded I might have pulmonary hypertension. Not good news! Pulmonary Hypertension develops mainly when your heart has had enough. When it has been working too hard! There is no cure for pulmonary hypertension. If you are lucky, you might make it to a lung/ heart transplant.
I called my doctor and told him my symptoms. I also stated enough was enough and I was at the end of my rope. He quickly had me meet up with a transplant specialist who dealt with pulmonary hypertension on a regular bases. I couldn't believe all this. I was now becoming mentally drained. Although through all of this I was not anxious nor depressed. How? It's called a very strong family support and an unbelievable faith.
To test for pulmonary hypertension they put a catheter in my neck and threaded it through my heart called a swan ganz. It measures the pressures of your heart. They also placed an arterial line in my wrist(pictures to follow) which would continuously measure a exact amount of oxygen in my blood. I had to exercise with these line in on a bike. Oh and I forgot they strapped an echo to my chest during this test too. I do wish I had pictures! I feel so blessed that I did not have pulmonary hypertension. I was showing signs of developing a form of secondary pulmonary hypertension. Which, in the cause of secondary pulmonary hypertension once the main problem is corrected early enough then it will resolve itself. SHEEEEW! What they did see was that I was still significantly shunting. In fact I was shunting more than my original echos. Crazy Huh! Only me! So, I was given absolutely wonderful news and bad news at the same time. What a mind blower! To fix my still shunting heart I would have to have open heart! Errrghhhh!

Cardio Seal Closure

Surgery was quickly scheduled for October 17th, 2008. I would have a newer procedure where an implant called a cardio seal device is placed via my groin. It would be simple. Lasting, approximately two hours. One side of my groin would be used for threading the implant the other side would be used for a small camera to help with the device placement. They threaded my implant through my septal wall and popped each side up like a balloon with one quick pull.
These implants had not been FDA approved for PFO closures at the time, but having no time to really research I went ahead. The doctor never told me that fact nor did he tell me the after effects and feelings I would be having. Of coarse he explained the risks; which were far less than that of my other choice "open heart". Looking back, I don't think that my doctor was trying to hide any facts. He was merely trying to fix me the fastest and least aggressive way possible. The implant has been very successful in many others. Depending again on what medical journal you read it is on average 80% effective. In addition, those who have residual shunting(some leaking around the implant) manage to clear up in about 15% due to skin growth on top of the implant. It was very difficult to find any information about long term outcomes of the device. The few articles I read the implant dislodged, did not deploy correctly or the metal eroded over time. But, I was reassured that it only occurred in the older models developed before 2007. Still, it is unnerving to feel like an experiment.
The day of my surgery I was petrified. It's amazing what runs through your head. Everyone was very nice, but acted like this was an everyday thing. To them, "yes". To me I was going out of my mind. I was so close to getting up and running. Why? The fear of the unknown. How much pain would I be in? Would I have complications? What would a foreign body feel like? Will I always worry about this thing in my heart? I was put to sleep and a 33mm(almost an inch) implant was placed to close my defect. I woke up completely pain free. Just like a cardiac catherization a patient has to lay flat for a few hours. They use large catheters threaded through you veins or arteries. If you sit up the pressure could push your groin to have excessive bleeding. When you wake up, they check your blood clotting times through the catheters still present. After they are satisfied that your blood has thickened they remove the catheters. Removing the catheters is not painful at all. Kind of mind boggling on how long the catheters are. The painful part is the nurse holding extreme pressure where the catheters were. As I said I was pain free. But, all of a sudden it felt as if a BB gun was fired into my chest. For the first time I saw fear in my husbands eyes. I told him what I was feeling and without a word to me he called the nurse in. He told her to look at the monitor. My heart rate was all over the place. Even to the untrained eye it was obvious. The doctor was called and I was kept over night. My heart had become irritated from the new device placed. My doctor said eventually it would pass. Although beating pretty fast the strange arrhythmias(atrial fibrillation) did pass in the early morning. I was discharged home to take plavix(a blood thinner) for the next 6 months. I would also have a follow up TEE(and echo of you heart performed by going through your mouth into the esophagus) in 3 months. The TEE would keep an eye on the tissue growth around the implant and keep a check on the function of the implant.
At home the arrhythmias returned, I had constant chest pain for about 2 months(almost like a chicken bone stuck). I can say that I much rather would have pain than have the feeling that my heart was going to jump out of my chest. No one told me this was very common to occur. I had to find that out in all my research after the fact. I can tell you that I was scared and continuously petrified. I returned to work within three days. I suppose for some they would feel instantly better. But, that wasn't my luck! Again, after looking back I would have still chosen the procedure. Despite what you'll read later on. Really, the chances of what occurred next are very rare.

The Diagnosis

As I arrived to John Hopkins I was relieved and fearful at the same time. It was a long, cold bouncy ride in that ambulance with much anxiety. What was in store? I felt like they had performed every test possible already and every vein had been used at this point except for my legs. They’d be used later! Within an hour a nurse practitioner arrived to my room and said we think we know what’s wrong. You have a hole in your heart between the upper right atrium and left atrium called a PFO. Instead of all of your blood going from your right heart to your lungs then back up through the left heat. Your blood is going from your right heart directly to your left heart and almost completely bypassing your lungs. It’s called shunting. We don’t know how large it is but it has to be significant to show a decrease in an oxygen level. Most people present symptoms as minimal, fatigue and shortness of breath. Or they have strokes due to the abnormal shunting. I was to see the doctor in the morning. I was left again with my thoughts.

What is a PFO?
A patent foramen ovale (PFO) is a defect in the septum (wall) between the two upper (atrial) chambers of the heart. Specifically, the defect is an incomplete closure of the atrial septum that results in the creation of a flap or a valve-like opening in the atrial septal wall (see illustration). A PFO is present in everyone before birth but seals shut in about 80 percent of people.
With each heart beat or when a person with this defect creates pressure inside his or her chest - such as when coughing, sneezing, or straining during a bowel movement - the flap can open, and blood can flow in either direction directly between the right and left atrium. When blood moves directly from the right atrium to the left atrium, this blood bypasses the filtering system of the lungs (the lungs actually do dissolve tiny blood clots). If debris is present in the blood, such as small blood clots, it now passes through the left atrium and can lodge in the brain, causing a stroke, or another organ, such as the heart, eyes, or kidneys.

What are the Symptoms of a PFO
Although present in about one in five adults, PFOs usually cause no symptoms at all. Far less than 1 percent has a stroke or other outcome that results in the need to have the PFO closed.

What causes a PFO?
A PFO is congenital, meaning it is a defect that is inborn or exists at birth. Stated another way, the defect is an abnormality, not a disease. The septum between the two atrium of the heart developed normally before birth but the flap did not seal completely after birth.

The doctor came in first thing in the morning and explain what a PFO was, but that they needed to out rule some other structural defects. More tests! For a PFO to even be problematic is very uncommon. In addition mine not only was problematic, but it was causing significant shunting when I was upright! I found out I had a very rare conditon known as platpnea-orthodeoxia. Meaning that when I stood up or walked the minimal shunting that was occurring when I was laying flat during all my tests(echo, cat scans, TEE ect..) opened up to be the size of a quarter due to the normal changes of heart pressures. Why it occurs in some is unknown. In 2002 there were only 50 documented cases and the last figure I read was 2,500 depending on what medical journal you read. All is known is that you have to have a large PFO and a atrial septal anuersym(meaning a flappy septal wall that divides your right heart from your left). I had both. This condition is so rare that even the most experienced doctor would miss this condition. It has to be caught by continuous monitoring and checking a walking oxygen level. So, what was happening in my case is that when I sat in certain positions or walked over a matter of seconds. I started shunting, which caused my heart rate to soar, then came my shortness of breath and then after a few hours my heart was so irritated that arrhythmias would occur. Mostly just a super high heart rate; as high as 200 and some premature ventricle beats and atrial beats. Premature beats can be very common, but they can also be an indicator that something is wrong. In my case my body needed more oxygen so my heart was pumping harder and faster to get it. So, my surgery was scheduled and I was on my way to a quick recovery; or so I thought!

The Diagnosis Attempt

My appointment was on that Wednesday. Two days from my misdiagnosis. They were not restful at all. I had an syncope(passing out) episode the following night. I had been exhausted and woke from my sleep to hear my daughter having a nightmare. I ran to her room forgetting about my issues. I was fearful she would wake her sleeping little brother. After settling her back down I started back to my room, stopping by the bathroom to splash water on my face. That's the last I remember. I awoke on the floor with the water still running and blood dripping from my forehead and upper lip. No, I didn't want to go to the ER. I was not very trusting of my fellow physician at this point. I was feeling better now. It could wait one more day!
When I arrived to my appointment the doctor was running over an hour late. Great, I thought, "I'll never get answers because he'll be in too much of a rush to listen. The doctor greeted me with a hug and an apology. He did listen and very intently I might add. He sent me immediately for a stress test. It was suppose to last at least 20min. But, mine lasted two. Within 30 seconds my heart rate increased from 102 to 170. Some arrhythmia's were occurring and my oxygen level dropped to 86%. The RN performing the exam called for additional help. The doctor was also immediately called in. The doctor came in with a model of the heart. This can't be good I thought! He stated I had a defect somewhere within my heart and wanted to admit me ASAP.
I was admitted and had three days of every test possible even ones I had never heard of before. I was poked and scoped; I was given contrast and gases. I was x-rayed and ultra sounded head to toe. After three days in walks the doctor. Anne, he said, “I just don’t know what is wrong”. You have a family to think about and I want to get you treated as soon as possible. I will be sending you to Johns Hopkins they’ve been having a pow wow about you and will find the answers out for you! I was exhausted. I couldn’t believe that after three days, all those test, and with today’s medical knowledge no one could give me answers. Unbelievable!

The Mis-Diagnosis

I was to get my echo the following week on a Thursday. My 30 min. echo turned into 2 hours. The ultrasound tech told me he saw some abnormalities but nothing serious. But, he also stated he saw something he had never seen before and it was probably nothing. I went home thinking that if something was seriously wrong a cardiologist would have called me immediately. Unfortunately, in my gut I knew something wasn't right. Something had to be making me feel this bad. Friday I actually thought about going to the ER, but afraid of being embarrassed again I didn't. Besides I was working the next day and I could pull up my echo report at work for reassurance.
As I scrolled down the lengthy report I was horrified. Leaky valves, pleural effusion, ASD, PFO, septal deformity, and lastly the word ANEURSYM. I couldn’t move. I was in front of people and didn’t want to freak out! Can someone come hear I asked? They all read and were coming up with their own theories trying not to alarm me. Some even cracked jokes (medical professionals tend to do that in times of stress). I made a few phone calls but knew I wouldn’t get answers on a weekend. I’d call my doctor on Monday. Why didn’t they call me you ask? Well, the report wasn’t even read till early Friday evening after office hours had closed. I made a few phone calls to my husband, my sister and my friend. I thought talking would calm me. It worked for awhile. Throughout the day my symptoms worsened probably the stress kicking in. Finally, the charge nurse asked me what is going on with you, you look awful. I told her about how I’d been feeling and handed her my echo. She told me I had to go to the ER she couldn’t allow me to work for my own safety. I told her I would think about it. I eventually went to the ER after my shift was over and after talking to one of the ER doctors who wanted to ship me directly to another hospital. Shifts were over and I was turned over to another ER doctor who wanted to check me out first before sending me to another hospital. I didn’t know him well and reluctantly agreed. I didn’t want to be seen by a doctor and staff who I worked with. What would happen if nothing was wrong with me and it really was anxiety how embarrassing. All labs were ok, x-ray was ok, HR was way high and I was having arrhythmias.......

Insert-*I have decided to keep the events that occurred during that time private..I understand that I have shared them before, but it was an extremely difficult time and I would rather leave the past in the past and move forward*

I was suppose to be admitted Monday morning to another hospital nearby. As I was just getting tucked in and labs were being drawn in walks another physician with a confused look. It turned out the ER physician was just reading off the echo report as I had. He wasn't a cardiologist nor, would I expect him to be. The echo report was dictated wrong! It was an honest mistake. My septal wall is very fatty and changes in pressure along with shadowing gave it the appearance of an aneurysm. Was I mad? No, I was so thankful! There were some abnormalities, but we could wait later in the week to discuss them after I had a few restful days! The discharge nurse really fought the new admitting doctor to keep me, but I was just relieved I wouldn't be dying anytime soon and wanted to go home!

The infamous doctor's visit

When I arrived at my doctor's the following day I had a low grade fever, a heart rate of 136(normal 60-100), and an oxygen level of 88%(normal 92-100%). The nurse asked if I was nervous(due to my heart rate). I said, "No." She played around with the pulse ox(measures an oxygen level) and my oxygen level returned to 96% after resting and a few deep breaths. She asked what my symptoms were and walked out with a frustrated look on her face. My symptoms were very common and could be a number of many things. She gave me the impression I was wasting her time. But, didn't she know how much it took for me to even walk into that office? As the doctor walked in I saw his face. I knew that look! He had already pre judged me. I explained my symptoms and stated that all I really wanted was some lab work because I though I was anemic. Anemia can cause all of the symptoms I was having I thought. He then proceeded to have the talk. The, you are a young mother with numerous responsibilities talk. He gave a gentle hand and said, "I see it all the time. I'm sure it is very difficult to manage a family and work. Many women have this issue." At that moment I did become anxious. If only he knew how sick I was. My heart rate started to fire. I'm thankful for that anger because when he finally did his assessment he heard an arrhythmia. An arrhythmia that he felt was very common. None the less, I had a little validation. He send me for an Echo and lab work. As I walked out the door his last words were, "when all your tests come back normal we will revisit the anxiety topic again." I left his office feeling embarrassed. I called my husband and a friend and told them I was done with the issue and even thought about not getting the echo done. Throughout the past months I've learned an important lesson. Never let anyone influence you or your health. Might sound easy, but for me I never want to disappoint or be a burden. I've really had to put myself first for once.

The Beginning

It all started 4 months prior. I had been running and found it more and more difficult with each passing week. I also was noticing that I was becoming winded just by carrying laundry or talking on the telephone. But, I am more stubborn than I'd like to admit. I just assumed I was anemic and that it was normal for a young mother to experience complete exhaustion. Throughout the years I managed my tiredness with naps with the kids. But, they were growing and naps weren't on the agenda. As the weeks passed my 2-3 miles were taking longer and longer. Then one day running I felt a tear across my chest. I thought what was that? I slowed down and then the vomiting hit. Boy, I though you are really pushing yourself. I was foolish to brush my symptoms off. I, who am in the medical field failed myself. After that day my symptoms started progressing with much intensity. My occasional dizzy spells(which I ruled it to be due to low blood pressure) were more and more frequent. I started thinking about my bed as soon as I awoke. My shortness of breath was more intense. I found myself almost falling to the floor climbing one flight of stairs. Still, I was in denial! I'm 30, I'm the ultimate picture of health I though. Over the next few weeks I kept bargaining with myself. One more episode, then I'll call the doctor. The bargaining continued until one day at work. I was speaking to a co-worker who has cardiomyopathy. She was explaining her symptoms. Mine sounded so similar. So, I confided in her. She sat with me until I called my doctor. I was able to get an appointment for the following day. I didn't realize that in that moment I would be labeled "very sick" for almost an entire year. My life changed completely and will never be the same!

Just A Quick Intro

Well, here I am with my beautiful daughter Mya one month before my diagnosis. I didn't appear to be that sick. In fact I was running 3-4 times weekly at least 2-3 miles. Running was my outlet. I along with many though my illness hit me fast. But, talking to my close friends I realized this was something I had delt with throughout my life. My symptoms just got so noticeable that I could no longer ignore them. I remember right before I turned 30 I looked at my husband and said, "If I feel this bad at 30 there is no way I can make it to 50." For the past couple of years I had blamed my lack of energy to the stresses of motherhood. All my friends spoke of how tired they were. I thought it was normal. I also have always had a super fast heart rate and as it crept higher and higher I just brushed it off. I was also having dizzy spells but blamed that on lack of fluids. Besides nothing happens to a 30 year old's heart! Right?So, my story really began in late August of 2008. It might be difficult to hear and I might be a little to frank! My story is not to scare anyone or dramatize what happened. But, rather to paint an exact picture for those who are interested. Despite my medical knowledge I felt very alone in my choices due to lack of information available to me. My doctors at Hopkins were even curious to see my outcome. It was in a way uncharted territory to them too.

Something New

I'm working on a blog to tell my story. After going through my adventure this year, I realized how many of my friends didn't even have an idea what I was going through! Some just gave me the blank stare and then others had more anxiety about my condition than I did. My condition was both common and very rare at the same time. There have only been about 2,500 documented cases thus far(my own research). My circumstances were over 1 and a million to occur(multiple surgeries). So, after feeling lost looking for answers myself, I thought maybe my experience might help another. Also, my wonderful friends have so many questions and concerns. I want them to get a better understanding about my condition. So, in the next few days I will be working on my story! I hope it helps!