Even the Little Milestones Count!

Since my recovery I am amazed as I pass each milestone. My first 5K, passing my initial diagnosis day, first TIA marker, and first surgical marker ect.. Something this week hit me with surprise. Every year the day after Thanksgiving we put up our Christmas decorations. I have my assignments and Jamie has his. Last year my first assignment was to put a series of small trees up in our dinning room. I decorate with snow, houses, and lights. As I was putting it up last year I was struggling. I had to stop even though I was working sitting down. I remember vividly shaking, being winded and dizzy. Which, shortly there after would cause extreme vomiting. That was my normal world at the time. I couldn't finish this easy task. At the time I didn't know I was developing pulmonary hypertension. Raising my arms or walking caused pressures in my chest to build in turn putting to much workload on my heart. I was heartbroken! By that time my family was use to me heading off to bed even though I had just woken up an hour previously. My days off from work I slept or layed all day.
This year I was just about finished in record time and ready to go to the next task. Then a surge of emotions hit me. I remember that exact moment from the year previously. It's funny how things come to you out of the blue. Yes, I knew I was much better but to compare an exact moment was incredible. The weak, pale, and sickly image was replaced with a strong and vibrate person. Of course the tears come quickly to me...but this time they were beautiful, happy tears of joy. I wish I could put into words how blessed I truly feel. God, my family and friends have given me a life I could have never dreamed of. I thank God everyday for my gift of life and all my milestones...even the little ones!

6 Month Echo

So today was the day! A day that would determine if I look back or keep on trucking along. If you ask me I would much rather not have even had an echo done or be hooked up to any more monitors or machines. I would like to no longer go by numbers or values and just base my health on how I feel. No news is good news in my eyes. I've done pretty well these last few days up until they made me wait.....I despise waiting it makes me think. So, luckily for me I have some great friends that I decided to bother for a pep talk. As always they are so true to me. I don't know what I would do without them!
I was finally called back. The technician a little cold in the beginning heard my story throughout the echo and became my new friend. She was actually quite helpful and knowledgeable. I think we were both a little stressed. I probably wasn't in the cheeriest of moods and her a little uneasy about seeing a cow part in someone. We were both entering an area of the unexpected. What is my heart suppose to look like and how is it suppose to perform now that it has been a little restructured. When we were finished she called on of my favorite Doctors in. He has been with me since the beginning and truly has been my angel. He came in hugged me and took a look. With that he smiled and suggested a stress echo to take a little closer look. Always asking if I minded:) A stress echo is just an echo being performed while you are walking on a treadmill. They asked for the nurse practitioner to be present...o.k. I thought! Hummm... The nurse practitioner immediately recognized me. She recalled our visit a little over a year ago where the circumstances were much different. She gave me the eye..I laughed and said, "Don't worry this time it will be o.k." She gave me a look of uncertainty. I walked on the treadmill with ease and then waited for Dr. E to return.
Dr. E again returns with another hug and smile. He first always likes to start with the compliments. He's pretty good with them too! He said how proud he is of me for turning such a horrible experience into a good one. How I haven't used this as an excuse not to live life to the fullest. He expressed how he often thinks of me and what he has learned. He teared up a little which makes me always look down when I should be hugging him. Dr. E reiterated what a miracle my outcome was! He is amazing! He made comments to the effect like he should have done more for me. I explained to him that he in fact was the one who did it all! After I was prejudged in the beginning by a previous physician; he took one look at what was suppose to be this normal, healthy 31 year old and took my word for it. He not only took my word for it but had me tested right away! He could of just sent me for further testing over the next few weeks. I was actually directly admitted that day to the hospital. So, I explained, "you were the key factor in my diagnosis." I couldn't ask for a better physician on my side. In a way we were on this journey together. Then after a little more discussion a high five and a hug I was off.
In all my echo looked great! Dr. E said he didn't even see any scar tissue at this time nor enlargements. My septal wall was still very flexible and my implant looked beautiful. It was doing it's job. The only concern at this point was the valves being a little stretched from all the new blood volume and hopefully in time my heart will adjust. If not, in about 20-30 years I might need some new valves. Who knows what will be in the market those days. I might end up part cow and part monkey or something along those lines. Hey, if that's my only problem I am more than thankful! I am still here doing the things I love and being with the people who complete my world. Right now that's all that matters!

Do you ever forget?

As with many of my posts I am completely honest and upfront. Never sugar coating my thoughts and feelings. I had many, many difficult days. Although, I always tried to focus on the good days. So, this post is one of fear/concern(just being honest). This week I will be having my six month echo. Of course everything should be fabulous.....right? Obviously, I am much better and have beat every odd against me. But, something never goes away with any major illness or trauma. That is the fear of going back...back to that scary time of your life when you had no control. When you are going through something so traumatic during that time period you are in survival mode. All you're focused on is getting through the next procedure, the day or sometimes even the next hour. I never had time to think of the what ifs....but now I do. Funny, I thought once my fight was over I had made it through completely traumatized free. I know now what post traumatic stress syndrome is. It is the fear of going back...back to uncertainty. Most of the time I am proud of myself for charging through my illness and it gives me a sense of accomplishment. But, other times I hate to look back. I'm frightened to think how close I was to loosing so many things in my life. I was living in a word where my body was a prison. Honestly, can you blame me for not wanting to ever go back. I was given an illness and I dealt with it the best I could. I chose the high road and learned from my journey. Even though my illness taught me so many life lessons I still wouldn't have even wanted it to happen in a million years. Not even to my worst enemy(if I ever had one). So, all I can do is pray that the fear doesn't consume me. I will also pray that my implant is working, that no scar tissue has developed, my heart pressures are low, and hopefully no signs of heart failure. No matter what, I have and will continue to do the best I can to cope and persevere in life!

Life choice's......what to do?

During the process of being ill a series of self/life evaluations normally occurs. You ask yourself the follow questions.....am I a good person, mother, friend? What will I leave behind if I pass? Was I good enough and true enough for God to accept me? Lastly, did I achieve all of my hopes and dreams that I had for myself? Not only are you dealing with a stress of an illness of the unknown...your dealing with the stress of that major self evaluation. After my initial diagnosis I was determine to make an all around difference. I was a good mother but I was going to better. Never pushing my children to the side or telling them I was to busy. I wanted to show them that no matter what happened I was a fighter. When the world handed me a lemon I was going to make the best lemonade possible. I was no longer going to say maybe in a few years I'll get to my dreams in life. I was going to truly show God how thankful I was to be alive even if that was possibly just a day longer. He in fact had already given me so much. I was going to be the best wife I could and make sure I was the wife that Jamie had always dreamed of. Although, if you ask him he says I always was. Boy, do I love that guy! I was going to make sure my friends knew how important they were to me and not let us grow apart. I would make every life experience a good one.

When I realize I was blessed with such a miracle I have to admit I felt a heavy undeserving feeling. Why am I the lucky one? Now what? I tell you dealing with that was almost as hard as dealing with my illness. Finally after talking with friends, family, co-workers, church members, and my patients my path was clear. I realized that just by telling my story and being an example of faith was enough. I have actually been told that I was someone's angel and that I made a difference in several people's lives. There is no greater gift in life than that! I have made a difference just by living!

As I finished writing my blog yesterday I received a phone call from the American Heart Association of Delaware asking if I would consider becoming a member of the Board of Directors!
They must have been mistaken what do I know about being a chair person for events, or raising money, or making decisions that would possibly effect many! That's right...nothing! All I know is that I have a passion for the medical field; I've had it since a child. I know every aspect of the human heart my favorite medical discussion. I love to research and read studies...but lastly I have a passion to help others. Initial I was so excited! Do you know what this meant? I would be somebody! A person of prestige and honor! I would make a tremendous difference in people's lives! I couldn't wait to share it with the world! God had sent to me my purpose, my plan! But...had he?

I was up most of the night trying to figure out what to do. Jamie had told me he would support any decision but as always knows me better than myself sometimes and kindly reminded me of my dreams, goals, and stated vows to myself. Could I do it all? Yes, I do believe you can have it all, but with what sacrifices? I firmly believe that when you take on a responsibility you should take it on 100%. Otherwise, it's not fair to others involved! We have just entered a life of normalcy and it was amazing. What a gift I tell you! No more life on the edge! No more struggling to get through each day! I realized that I barely had time now to do the things that I enjoyed and fulfill a few dreams along the way. Raising my children and giving them what they needed in life meant making a difference in two people's lives already! Like many of us I have put God on the back burner at times. How could I do that after all this? If any time was to be devoted it had to be to him. So, I think he would be proud! I have a few dreams I'm working on right now! So, until I can give 100% to such an honor I will continue to follow a different path. Hopefully, as one door closes another will open. I still am determined to work with the Heart Association but in a much smaller scale. Hopefully, they will still see my passion and find a better suited role for me! I have to admit though I really wanted to say "Yes". It was a dream that I have actually had, but I pray that the opportunity will come again!

Delaware Mud Run

How can I explain the last few weeks?? I feel as if I am walking on clouds! This month has been extra special because of where/how I was this time last year. I was living a life of uncertainty, fear, pain, and mental/physical exhaustion. To be honest...in my head I was overwhelmed with thoughts of death, and fear of the unknown. Who would take care of my children, where will my path lead me and how much pain would I endure getting there? I was in the hospital being tested(painful tests) for everything under the moon....I was getting ready for my first surgery...and shortly there after having my first TIA. Crazy month right?

Well, every month made a big difference in my life; especially a whole year! For the past three weekends I have involved myself in 5Ks. Something even as a child I wanted to accomplish but never had. Last week I was asked to participate in another 5K! But, this was different...much different! It was a 5K which involved mud(a whole lot of it) and a military type course. I looked at it online and thought what the heck...it didn't look too bad. But, when I got there it was a whole different ballgame! Not only was there mud, there was tunnel crawls, large hills, low jumps, mud pits, mud pools and 12 foot walls to climb. All doing this sopping in cold mud! Funny part...as much pain as I was in, it was a blast! A memory I didn't think I would ever have! Guess what..I can't wait until next year!

*For more picture/video visit www.delawaremudrun.com*

Heart Walk

This past weekend I was fortunate enough to participate in another 5K. This time walking for the American Heart Association. I along with 11 of my friends and family walked and enjoyed each others company for a cause near and dear to my heart! We raised a little cash and I did an interview which made my children think I was a movie star! The most amazing part was that a year earlier(one day shy) my world was turned upside down as I had known it. For the next year my faith, strength and mental health would be tested like never before. I like to think I turned out o.k. I'm proud of myself for making it through the daily stress, living and pain of all the surgeries and obstacles. But, my greatest achievement is that my faith never faltered. In fact it grew and gave me the ability to not only get through, but with grace. I think more of my friends and family were taking it harder than myself. I actually cherish what I have learned from my journey. This month has been one filled with more accomplishments and fulfillment than I've ever had in my life. I can't wait to see what the rest of my journey holds!

*Click on news article to read in detail*

What a difference a year can make!

A year ago around this time I was struggling to breath, walk without falling, and scared to death to drive in fear I would pass out with my children in the car! I carried around the nickname "smurf"! Today, (I write this with tears of joy) I ran my first ever 5K! Can you believe it??? I can't that's for sure! I spoke with my cardiologist yesterday and he really pumped me up for today's run. He said,"Anne, I'm begining to think there is nothing in this world you can't do!" The run was so surreal. Of coarse I've been running to train and have been doing about 4 miles every other day. But, to run with normal people and be treated as a equal was such an overwhelming feeling. I am in fact now no longer the girl who was given several poor prognosis, the one who had 3 TIA's and was in the testing process to be considered for a heart lung transplant or who had just had open heart ....I was a RUNNER! My old life will be left behind but not forgotten. Like I've stated before in every life experience there is a lesson. Through it all I've learned so much about who I am and who I want to be. I value every moment big or small, I make it a point to tell my friends and family how much they mean to me. God decided it wasn't my time and has more for me to do in this world and I won't let him down! If you would excuse me I have some celebrating to do.............!

Last but not least.....

Jamie,
You are so sweet! Am I that predictable that you can hack into my blog? Well, I am so thankful you did! What a wonderful note! I don't have to tell you that you have been my rock since I met you! In the almost 15 years that we have been together you have never let me down nor failed me in any way! Throughout our journey you constantly kept me on my toes always breaking the tough moments with laughter and a joke. My physicians didn't always get the humor, but I did! I will never forget how in moments that I couldn't get to the phone you would rush home from work just to see if I was o.k. Or when you would get my medications all lined up and set the alarm to make sure I received them around the clock. How about our slow dances in the hospital or the doctor impersonations? You have and always will be my heart and soul! All I can say is what a ride we had....but WE MADE IT.....! Love you baby!

My wonderful wife

Anne,
It's been nearly 5 months since your heart surgery and I want to say how proud I am of you in how far you have come in a short time. (don't be mad, I hacked into your blog!). It seems so long ago that the one doctor scared the both of us with the thought of an aneurysm and that it could be any day you might pass. That night was a shock and I didn't show much emotion other than silence. I held back tears on a lot of occasions. I was trying to show strength and that everything would be fine. When you were struggling walking around and getting tired, I just thought "shes getting older, wait tell you hits my age" I knew something was wrong, when you woke me up that night you passed out in our bathroom and had a bruised forehead. I felt helpless that night as you came in the door and fell in my arms after the mis-diagnosis. My thoughts were" I could help provide for my family and protect them in our household, but fixing a medical issue is something I could not do". I remember becoming frustrated when we were at PRMC and all the test they ran and still couldn't find out why you were desaturating. I did feel hope when they said they were sending you to John's Hopkin's to do more tests because they are the best.

I struggled with emotions of being sad and mad. There wasn't a day that went by thinking about our kids and myself if you were not around. I hated every thought I had about that because you were to always be here. I was supposed to go first, not you. Even though we were coming to know God, I was mad at God for putting my wife thru this. Now that I look back, what an amazing thing God did. The church surrounded us with open arms, meals, and brought us closer to people we never really knew who care about us. Anne, it is amazing the courage you had when going thru 3 surgeries. You know me, a cold puts me on a death bed.

I'm not the greatest with words as you can tell, but I want you to know how amazing you really are. I am proud of you in your knowledge of the medical field and how you are so caring of people you wait on at work who you hardly know. I think it's amazing that 4-5 months after open heart surgery, you are running 4 miles(WOW!!!). I am so proud of who you are and how I have watched you grow since we met. You are a wonderful person and I love you with all my heart(no pun intended).

Thank you for giving us 2 wonderful kids who make life worth living for. You are a great person, a great mother, and an awesome wife. I love you

Love from your husband,

Jamie

P.S. Thanks for doing the clothes today also.

Four Months Post-Op-plus a thank you!

Wow, four months has gone bye and life is so very normal! Never thought that a normal boring life would be such a blessing! I am now running 3.2 miles daily and am debating about being in a 5K this Saturday to celebrate. I have always loved to run and boy is it much easier without a hole in the heart and a normal oxygen level. I feel so empowered when I run and always have. I'm actually debating on being in a triatholon next September. Well, it sounds like a good idea in my head. I'll let you know next year!
Well, in the two months since my last post of course my life perspective has changed yet again. I guess that's why I call this a journey. I no longer have any feeling of guilt. I discovered that, "yes" we all have a purpose big or small. I guess I assummed that I had to do something miraclous because of the gift of life I've been given back. But, I've realized that SMALL encounters can contribute to a BIG purpose. What do I mean? Well, if Dr. Yuh saves another life and learns from my case he's just saved not only that person, but by saving that life he has effected everyone that surrounds them. I had three out of my four main doctor's state they have either learned something from my case or stated,"their eyes are now much more open." I had one doctor actually say, I'm sorry, I should have listened." Was I mad? No, I was actually shocked he said that. All I said was, "Thank you, now learn from me." Or my story might just cause someone to finally go to the Doctor(just like another caused me to finally pick up the phone).
I've learned that we can empower each other. Words and comfort go a very long way. I always was worried that I wouldn't say the right words to someone that was hurting or in pain. But, I know 100% something is better than nothing. I actually had a couple of friends disappear during my illness. At first I though, "wow, they must have not been a really good friend, What did I do?". Later, I had a friend call and say,"I'm sorry, I was scared! I couldn't relate to what you were going through and I thought you might want to be left alone." Never, does anyone want to be left alone. Not only did God help me through this ordeal, but you my friends were my empowerment! It never failed that when I was starting to feel a little down the phone would ring or I would get a simple text. Most of the time it was simple words like, "I'm thinking of you or I'm here if you need me." Those are some of the best words to hear when you are down! If anything I have learned to lean and cherish my friends much more. I love you all so very much!Still, even today I receive phone calls or texts on how am I feeling. I love the encouragement you all give for me to achieve all of my goals and dreams. You all are one of the reasons I am here today. I owe you the biggest thank you for helping me make it through! My friends and family are my inspiration and will continue to be!!!!

Two Months Post Op

Well, it has been two months since surgery. It really feels as if it was a year or more ago. I no longer have any pain or matter of fact ANY residual symptoms. I am now running a mile and half without complication except that of being out of shape. When people ask,"how do you feel?", I honestly forget I just had open heart. I feel so alive and vibrant again! I didn't realize how bad I was because I had become acustom to it. I have an absurd amount of energy and now need to learn that sleep is a neccessity.
The one issue I'm having is a little residual guilt or almost a feeling of undeserving. I guess you could say a form of survivors guilt. I was told in three different ways besides the risks of surgery that I probably wouldn't be here on this earth very long. I survived many obstacles put in front of me and fought to stay strong. I was told two days ago from one of the Doctors on my case that I was less than a year requiring a total heart and lung transplant. Now what? Why was I the one to get the second chance? How can I show that I am worthy of such a gift? Is my purpose Big or small? Until, I discover my purpose all I can do is put what I learned along my journey to good use. It's funny I thought I already cherished every aspect of life. But, I learned much more than I every thought I could. Not just about life, but how one person can effect many. I pray that one day my purpose will be clear!

One Month Post Op

It has now been one month and my recovery is going quite smoothly. I have returned to all my normal activities expect for running. I almost feel
completely normal.

Myself and my surgeon Dr. David Yuh
AKA:Inventor of the program for Space Invaders

My only issues that remain are occasional side and chest discomfort. I also tend to tire a little, but I believe that is due to a lack of activity in the past eight months. My oxygen level has been checked twice and has been 99-100%. I can't ask for better. I no longer have dizzy spells, extreme exhaustion, heart arthymias or a heart rate over 120. I am amazed of my progress and feel better than I have in the past few years. My life as I knew it has been given back to me.
I would never have guessed that at 31 I would have been through such an extreme journey. In one year I have faced the thought of death several times, been through two major surgeries, had three small strokes and most importantly developed a better understanding of my faith and what life has to offer. Many were amazed at how I handled myself through all of this. How I look at it is simple, a person has two choices to deal with it or not. For a while I was petrified and only focused on my illness. But, that was only short lived. I realized I could be thankful of what I did have rather than what I didn't. I was in fact still alive and kicking. Sure, I was scared at times but I knew that I didn't have control if I would die or not. What I did have control over was how I chose to live the life I still had. One day after my open heart I said to my 8 year old daughter," I'm sorry Mommy has been so sick. I promise you I am going to get better soon so that I can run and play with you again. I will work very hard so that day is soon." She turned and looked at me with a look of true compassion and a statement more mature than her years. She said, "Mommy, what's important is that you are here with me at this moment. Your going to get better, but I don't care how long that takes as long as you are still here. I need you no matter if your sick or not." I realized in my daughter's eyes that sickness wasn't important to her. As long as I could hold her and nurture her it was more than enough. I am in fact still here and plan to be for a very long time!

Post Op Pictures

Surprisingly, many have asked to see pictures. I posted these only to show that Yes, I went through a very difficult surgery but I conquered and completely recovered. Many were shocked that within a matter of weeks I looked better than ever. I was walking 1/2mile 8 days post op and pulling weeds at two weeks post op:)

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.