Wow.....It's Been A Year Already!

I have always wondered why I have had to face so many obstacles in this life. I truly believe there is a reason for everything. With 100% certainly I believe I have endured everything that I have in order to face Dax's heart issues. If you ask anyone in my life or at work I'm the one who rarely sheds a tear and who is always collected even in the saddest situations/moments in life. I always hear how strong I am. Well, they haven't seen me when it comes to my children. I'm the first to shed a tear during a special moment, I'm the first to panic when something bad happens. For instance, I've seen decapitated bodies numerous times....but, Mya bites her tongue and I fall to my knees at the sight of blood coming from her mouth. I was told I needed open heart and I was perfectly fine with that. But, my kids need their tonsils out and I think it's the end of the world. I honestly, don't think I could have handled Dax's condition if I hadn't faced it myself. My experience has given me the comfort to trust that he will be o.k. no matter what he has to face.
Everyday for almost a year I have thought about Dax's yearly appointment. At first putting it far in the back of my head, pretending it was all just a dream. I last left off feeling so confused about the path to take with him. If surgery was needed J and I were not in complete agreement. I think it's important to be on the same page. Neither one of us wanting to be the leader in case it was the wrong choice. Dax's ASD was right on the marker needing to be surgically closed. By school age if it were to close it should have by now. The good thing is that it would be an elective surgery in a sense to prevent him from future heart issues like myself. We decided, since we didn't know what path his ASD was taking, to give him one year of sports and growth.
Over this past year we have watched Dax like a hawk. He only had one episode of palpitations, a few over heated events and a couple shortness of breath episodes. Although, is it because he is just so small and trying to keep up? He's a tough cookie for sure and never stops.
The week of Dax's appointment I was full of many thoughts. J deals with me so well. He knows what I'm thinking without me even saying a word. I know first hand that our lives can be changed with just one doctor's appointment. I mostly am fearful of having too many choices. Will we chose the wrong path for him? Is this doctor wrong? Is there someone better out there for him? Ugh...... I prayed every second I could.
We enter the hospital and I couldn't sit. J distracts the kids with ipods and hugs. When I finally sit because of the 1 hour and 30minute wait, my tremoring starts. Thank goodness for J's crazy humor. He truly is my gift in life. As they call us back we are all laughing hysterically.
Dax plops in the bed and means business. He knows what he is there for and wants it done and over with. An EKG is done and J's eyes raise up looking at me. He wanted to know if it looked o.k. It does....shew! I smile back. The doctor walks in so seriously. J looks him over and I just have to laugh. I knew exactly what he was doing. He is so fascinated with the different personalities and always after an appointment he tends to imitate each Doctor. Dr. R does Dax's physical exam without saying a word. Zero interaction with Dax. His bedside manner truly lacks but, that's not what we are there for. I view it as Dr. R seeing this is a serious moment and he knows we want him to get to the point. Dr. R states, "Let's hook him up and take a look." Dax lays back without a word and an echo is performed. The six of us in the room hold our breath. The silence is like none other. I immediately see the shunting from the ASD and grab J's shirt in fear. He looks at me. Funny, I think he has learned to trust my opinion before anyone else's. I was praying, I take a harder look and then I whisper..."it looks the same". To see shunting of blood cross where it isn't suppose too rocks me to my core. I don't care how big it is. I know it's not natural and it sends flashbacks of myself. My eyes start to swell a little. But, I take a look at my son who's smiling from ear to ear and I take a big breath. I wait for Dr. R to confirm. He indeed agrees it is the same size. Within a second I realize that it could be much worse. It could have grown. But, it didn't. As a family we didn't know what to do. We held our reactions to ourselves and asked a few questions. We decided to continue to watch Dax and monitor him. Statistics show that by teenage years he will have to have something done. He has a 70% chance of developing pulmonary hypertension by age 40 and an even greater chance of developing valve issues even sooner. Each decade that an ASD is left untreated, it is said that it almost can double in size. We are also concerned about the chance of stroke in the future. Our theory is that his ASD is on the smaller size and we are not happy with what the choices to treat him are. If we can wait even a year to treat him we will take it!! I personally am hoping for the next rising technology. There is a possibility of a cauterization type procedure that can basically close an ASD with a probe and radioactivity. Or even, closing it with a patch made from Dax's own skin cells. Our greatest gift in all this is that we have TIME!
We didn't really celebrate on the way home. We were quiet at first. I said
a few silent prayers and I could see J's face of deep thought. We almost spontaneously turned to each other and started to count off the many things we were grateful for. Thankful for all the positives of Dax's present ASD. We are thankful for the gift of knowing. That he won't be that teenage football player that collapses. We are thankful that we are more knowledgeable and have the ability to weigh our options. We are thankful that medical technology is advancing everyday. We are thankful that God has blessed us with the most amazing little boy who brightens our everyday!

"No matter how you feel, dress up and show up for life"

I use to think that a special dress, the nice sheets, the good drinking glasses and the scented candles were just for those special occasions. I would wait and wait for just the right moment. Although, most of the time I found I soon would out grow the dresses, I liked another candle scent and when I did have someone over they drank from plastic cups. I don't know what I was waiting for really and through my life's journey I realized that every day is a special occasion. Life's too short to waste doing anything boring or joyless. So, I now am blogging while drinking from that expensive glass, while wearing my cutest dress and burning my newest scented candle:)
I have held off for a little while waiting to post. Primarily because so much has happened that I didn't know where to begin. I was nervous to update because it's hard to post when I didn't have at least some answers for you. So, where to begin & how?
Since my stroke in February it has been a world wind of How, When and Why? In February I discovered I had two strokes. One ischemic and the other appearing hemorragic. Odd thing is they were in two totally different parts of the brain. One on the left front and the other in the right posterior of the brain. One I looked back and saw the symptoms but no major residuals and the other affecting my entire left side. I have since recovered 99%. Pretty amazing if you ask me:) It was a scary time wondering if the damage was permanent or temporary. I had many runs where I wobbled and many many frustrating obstacles with my left hand. I tried to adapt as best I could and to be honest it was more difficult than I ever let onto. My neurologist is a saint and had to repeat and remind me many times, "Anne, you have had a couple of strokes" "It is o.k. you are feeling this way, it is o.k. to be frustrated." In reply, I would say, "Real strokes....can you repeat that"? I was in denial I guess. Or maybe I just didn't want to play the result I was given. Funny, when I tell people they give me the, "she's pulling my leg look". In a way that's a compliment to me. I'll take it. I've never been much for playing the result, I go with how I feel...not what a piece of paper says.
Anyway, while trying to narrow down our plan I had another curve ball in mid April. Wait for it......ANOTHER bleed! This time in the right middle to posterior brain. That wasn't something expected. But, by now I should learn that "nothing isn't possible". That saying works many ways. If given a bad outcome I just want to know that's it's possible that I can conquer it. Because, odds are I'm gonna! I do get fearful. Many mornings as I opened my eyes I prayed out loud, "thank you Lord for allowing me another day". But, give me time and I start my game plan of concurring my next battle.
My neurologist called me and explained the situation with great concern. You could hear the difficulty of telling me in her voice. The concern of how I would take it. My first reply...."Does that mean I can't go on any roller coasters for awhile?" I think I threw her off guard for a second. I wasn't being funny and she could tell that in my voice. It was a serious question. You see my son and I were talking about our summer plans and his goal was to ride the largest roller coaster in the world. I told him we'll work our way up to it. When Dr. Y gathered her thoughts she said, "We'll ,make that happen!" You see she pushes me because I am not an 80 year old stroke patient. I am 33 and not many have been in my path. She sees that I need to make my rules but just remain cautious. To me that perspective from her makes all the difference in the world! If I was given the choice of, 2 years of an amazing life full of joy or 10 years of a long drawn out illness filled with fear and becoming someone I'm not. I'd hands down choose the 2 years!! All my doctors know that and respect that. What an amazing group of physicians that I have surrounding me.
We spent the next couple of months figuring out if the bleeds from hemorrhages were from brain vessels rupturing or just residual clots that my heart was throwing. I wore a special heart monitor for over a month called a loop monitor. Once the results were in I was found to be having electrical issues along with some valve issues. Some ventricle and atrial abnormalities were present. The most concerning was atrial fibrillation. Atrial fibrillation is treated several ways but mostly I would need to be on a blood thinner such as coumadin. It was agreed I would have to wait until my bleeds resolved to be 100% assured they were from the heart. Mostly clots from the heart turn into ischemic(dead tissue) and do not appear in the form of blood. I was to have another MRI in the following weeks to see where we stood. With the new bleed, some complications arouse but have since resolved.
I went for my follow up MRI a couple of weeks ago full of nerves. I had been very insistent on holding off on the blood thinners as I had in the beginning and I was fearful my choice could lead me in the wrong direction. But, as always, I go with my gut instinct. I firmly believe that when something occurs to our body, we need to allow it time to heal itself. Also, I believe in the power of prayer. If my MRI was bad I would be headed on a new journey. So.....I waited hoping and praying. It was GOOD!!!! No new bleeds, and in fact all the bleeds had turned to ischemic injury but the left front. The left has greatly improved and is so very minimal. FINALLY....I could breath! The power of the mind and prayer had amazed me yet again!
So, what's next? Well, we're working on that. The thing is that even despite the fact of all these obstacles I believe in miracles. I've seen them first hand in many ways! If you want to see one in your own life just walk outside or look at your children. Although, sometimes miracles come in odd packaging wrapped like big mistakes. The secret is to find the miracle in the mess. My health issues on the outside overwhelm many. I could say enough is enough! But, I choose to find the miracle! The miracle is that no matter what, I'm here and have beaten every odd handed to me. Along my journey I have been blessed in more ways than I could ever imagine. I have been given the gift to see "life" in a completely different way than many others. I've not just been given life but I'm living it to the fullest. My obstacles give me my next challenge in a way. God has never given me more than I could carry. Sometimes, when I feel my load has reach it's maximum level, I still realize the many gifts I have been given. I never compared my life to others, because I have no idea of what journey they have gone through. My life might not have come with a big bow on it, but it's still a gift. With each new journey I face in this life I will still NEVER play the result just because it's expected. I will live my life with no regrets, focusing on the little things in life. There is so much living that can be squeezed out of one single day! While in that single day I'll be the one showing up for it in my best dress, never waiting for that special moment because today is special enough!

ShoreWoman

So, how about this saying..."For every bad thing that happens in life so does something good." The many twists and turns that my life has taken me has been nothing short of...well interesting. Seems, time and time again I keep getting road blocks. Everybody has them, mine are just medical in nature. Haven't we all said, "when will I ever win"? I find myself saying that a lot lately. Seems every week there is something new I have to face. This week has been no different. My path will lead me to another inevitable trip to John Hopkins; this time meeting with unfamiliar territory. The neuro floor.....and the surprises it may bring. I have decided after a long talk with my neurologist and cardiologist that I need to be a better patient. I was so frightened to become a victim that it was hindering my care. I just was afraid to open my mouth because one word triggers an over abundance of tests. It is becoming a full time job. I'm kinda tired of hearing about my health....aren't you!! I wanna talk about the weather and my kids. Not, "What did the doctor say?" But, I now truly know it's because of such caring people around me. I also learned that I can't run from this. This is who I am...it's part of me. Does it have to consume me..."No". I can make this anything I want to. It's all about how you view the situation I always say. I look at my situation in the following light. I am a girl who has two beautiful children, a very sweet hubby, a wonderful family and friends. I have a job I love and a passion for photography that truly fulfills me. Oh, and I just so happen to have had multiple heart surgeries/procedures, a stroke or two, and what ever else happens. Because of who I am and what I've gone through I have affected a life, I have related to that scared patient, I have a new found perspective and I have been able to reach so many others and educate them through a little article known as "ShoreWoman". So today, one day from having my 2nd year heart anniversary I can truly say from every bad thing that happens in life....something good can come from it:)

How did I end up in ShoreWoman? Well, I think just from word of mouth. My friend Jan G. Whom I love dearly, tried to get a story placed in our hospital's personal newsletter for Heart Awareness month last year and it kinda spiraled from there. At first I actually declined. I was afraid the article would be over dramatized or not serve a purpose. As open as I am, I haven't always been in fear as I've stated my illness would consume my life. But, It has been helpful to my family and friends. Actually, all the feedback from my blog and on facebook always inspires me to keep fighting. Hopefully, people will take from the article that anything can happen at any age and that no matter what anything is achievable in life!! So here it is:

"I have zero fears now. I have a great sense of fulfillment."
Article written by:Marilyn Buerkle

After a medical journey that culminated with two surgeries for a rare heart condition, Anne Donaway has a new outlook on life.

Donaway will celebrate her second birthday this month. Chronologically Donaway is 33 years old, but April 9th marks the second anniversary of her last open heart surgery. She describes it as the beginning of her new life. Growing up in Sussex County, Donaway had no hint that she had been born with a hidden abnormality in her heart. She was a Cheerleader as a teenager, and she remained physically active as an adult. A husband and two small children kept her plenty busy; she was also a respiratory therapist at a local hospital, and she still made time to jog several times a week.

A beautiful young woman with a dazzling smile, Donaway has always had a positive attitude. She didn't want to worry her family and friends when she started to have occasional dizzy spells or periodically had trouble catching her breath. After all, as a health care professional, she saw sick people every day, and she'd know if she were really sick. She kept her symptoms to herself. "You see so many people who are worse than you that your situation is minimal," She said. Eventually Donaway had to admit there was something wrong. In August 2008, she finally went to a doctor for help. The physician she saw chalked up her exhaustion to anxiety--typical he said, for a working mother with young children.

She didn't believe him, but she hoped he was right. Her symptoms got worse. Her friends were getting worried.

Lyndsey Feather and Donaway have been close friends since they met in an orientation session when they started their jobs at Atlantic General Hospital in Berlin. "Anne is one of the brightest, sweetest, most sincere people I have ever met, " Feather said. "I watched her go through this process. She was definitely not feeling right, but she was able to justify it anyway." Over a period of months, Donaway's condition deteriorated, but she never missed a day at work. It was a nurse at AGH, watching Donaway struggle to do her job, who finally insisted that she see Jeffery Etherton, a local cardiologist. "It didn't take a rocket scientist to see there was a problem; it wasn't in her mind, "Etherton said. Donaway was ecstatic to find a doctor who finally believed there was something physically wrong, even if he wasn't sure what was causing the problem.

"It is so important to find a doctor who listens and understands,"she said. Etherton admitted Donaway to the hospital and ordered several days of extensive testing. After that, he recommended she see a team of experts at Johns Hopkins Hospital. That's where she learned there was a hole between the upper chambers of her heart, keeping more and more blood from traveling through her lungs, starving her of oxygen. Donaway jokes now that her reluctance to seek medical help was a byproduct of her illness. "Obviously I wasn't thinking right. I wasn't getting oxygen to my brain!"

Her condition was very rare. Etherton calls it "a very sneaky problem." The hole in her heart was disquised by a flap of skin and her problems were more severe when she was upright;many of her earlier tests had been conducted while she was lying down. It was clear that she would need surgery. Donaway and her husband, Jamie, had to make a decision. She could have open heart surgery to repair her heart, or she could try a less invasive procedure which would robotically maneuver a fabric-like patch called a cardio seal device over the hole. They opted for the patch. It didn't work, but that wasn't clear for months. The doctors wouldn't discover until much later that the patch had inexplicably become dislodged. In fact, the prongs that should have secured it came dangerously close to piercing her heart. For six months, Donaway continued to suffer, thinking mistakenly that tissue growth around the patch would eventually make her feel better. What should have been a period of recuperation was, instead, filled with more frightening symptoms.

Feather was with Donaway when she suffered one of several T.I.A., or mini-strokes, she would endure; this one left her blind for several minutes. We've got to do something, " Feather told her friend. It was time to face the prospect of open heart surgery. It was a risky procedure for someone whose heart had already been through so much. "The key is to overcome fear," Donaway said. She drew on her faith in God and the support of family and friends.

In April 2009, she was back in an operating room at John Hopkins. It was a six-hour procedure; her heart was bypassed for more than 40 minutes. Everyone believed once she had survived that, the worst was over. They were wrong. Doctors still don't know why, just hours after surgery, Donaway began to bleed internally. She was slipping away. But she wrote in a blog posting, months later, that despite the medical chaos around her, she knew she would survive. She felt that God was with her. Donaway was rushed back to the operating room for her second open-heart surgery in less than 24 hours. Surgeons were able to stabilize her condition.

It was, as she describes it, the beginning of her new life. There are plenty of lessons to learn from this dramatic tale: Don't suffer in silence, listen to your gut, get a second opinion.

But it is simply one chapter in Anne Donaway's dramatic life story. Her pain leading up to two open-heart surgeries is overshadowed by the determination that followed. "It is a testimony to her strength and her mindset," Feather said. "She was not going to let this derail her plans for her life." So, in December 2009, as Feather and Donaway started to think about resolutions for the new year, Donaway decided to make 2010 her "year of adventure." She laid out a plan to try new things, to live her life to the fullest. "I wanted to show my kids that I was down, but look at how strong I am. You can't keep me down," she said. Donaway proved it by flying a plane, competing in a 5K "mudrun," learning to shoot a rifle, kayaking, glass blowing, beekeeping, even riding a mechanical bull. She also used her new gift of life to help others. She became actively involved in charity fundraisers and she took time to share her journey of faith with local church groups. "I have zero fears now," Donaway said. "I have such a great sense of fulfillment....I know my kids see me as happy and strong." Her positive attitude has a positive impact on everyone around her.

"She had a brush with death.....She knows how important it is to spend time with your family and to help other people," Etherton said. "She's definitely a special person. No matter what, she's always positive, always upbeat, constantly trying to find ways to help other people."

As many who survive life-threatening situations do, Donaway has struggled with her purpose in life. Why was she saved in that second emergency? She found an answer last August. That's when she had her children's hearts checked, just in case. The test revealed a small hole in her 6-year old son Dax's heart. "I firmly believe that's why I'm here," she said. "I've been through the worst of the worst, and now I can help him." Dax is an active little boy who plays soccer and has performed with a local theater troupe. His heart defect has been caught early and that will make a difference. There is time for his parents to consider his options. It's possible that improvements in medical technology will expand his choices. What's clear is that he won't be alone. "She's prepared more than any other mother I know to go through this," Feather said. "Because she lived it."

I Will Not Be Broken

So, I'm sitting here thinking how can I start this blog. My feelings are not those of being upbeat but rather a little defeated. Hey, I never said this was easy. Sometimes, I might give the illusion that it is. Yes, I do focus on the positive and am so very grateful for the health and life that I do have. But at times, I too, get overwhelmed and oddly today was one of those days. Why it hit today of all days...who knows. I've given up trying to understand the human body but rather just go with it. Hoping and praying that God continues to lead me in a positive path. So, here's my day......

I had been scheduled to meet with a local neurologist who fit me in quite quickly. My appointment was moved up several times. I was in no hurry because what could she tell me or do for me that I didn't already know. The damage was already done really and I have been recovering quite quickly. I really have gotten to the point that doctors' visits are becoming a torture event. Same routine...see doctor...get tests(sometimes very uncomfortable ones)...get some answers...more tests based on those results.... It really has no end. Honestly, I want to go to a doctor for once and have them say, "WOW, you're boring see you next year." That never seems to happen anymore.

As I walk into the office the staff already was aware of who I was and what my issues were. They seemed to know me so well it was as if they were old friends. The doctor came in and I immediately felt comfortable. It could have been because I work with her and we have spoken on rare occasion. I knew she had a wonderful personality and a great educational background. We had actually run together in a local 5K. I have now learned that what is most important to me is a physician who gets me. Many are properly trained and have amazing gifts of knowledge. But, if they don't listen and don't understand me, I won't get anywhere, honestly. I've been to so many physician's that I realize that many times I'm just another heart/stroke patient to them. They can't help it. So, I went in with no expectations thinking, I'll get through the appointment...make everyone happy I went and continue on with life. Within seconds the appointment took an odd direction. I'd never been down this avenue before. Normally, I give myself a pep talk and prepare to defend against or discuss any procedures or new medications that may be thrown on me. But, my guard was down and she was allowed in....just her....just this once. Immediately, she became a woman I admired & trusted. She started describing in words things that I hadn't even admitted to anyone. The things that I thought were insignificant, now had meaning. Many of my symptoms I had denied because I so badly wanted to get better. She brought them to the table and wouldn't let me run from them. My mouth dropped.....I finally realized I had a significant stroke. To see her true concern as a mother hit me. It has always shocked me when someone first hears my story. I relive it over and over many times through them. Yes, I look normal. Picture of health right. But what should I look like?

As we dove further into my appointment it was made clear to me that this was not my first stroke....Excuse me? The residual bleed that I had was a different part of the brain. Based on old MRI's it appeared that it occurred 6months to 1 year ago. Occurring in the front of the brain. Her concern with that was there still was remaining blood that needs to be looked at. My new stroke occurred in the back of the brain affecting different areas of my body this time. I needed another MRI to evaluate the damage from both which is tomorrow. In addition, I am hiding my weaknesses more than I even realize. My left hand and leg are still significantly affected by my stroke. I'm just using other muscles to compensate. She actually was very impressed. Her conclusion is that I'm forming clots stemming from my heart. Medication is needed stronger than what I am currently on. I am very uncomfortable with this new medication and it would require weekly lab draws and close monitoring, not to mention the long term effects. So, I have a lot of research to do. I also have had a previous bleed and if another bleeding stroke, not ischemic(dead tissue) occurs it could be deadly. So, you can see my concern. I am truly torn. She has given me a few days to decide and is even calling my cardiologist so we can be on the same page.

So, needless to say I'm overwhelmed. Two strokes is alot to handle on top of everything else. I finally saw in her eyes the reality of a stroke and it put fear in me like never before. I had let down my guard and with that I saw the scary truth that I had been masking. Funny thing about me is that the typical stages through an illness that people go through...I go through them all in one day and move on. Already today I've been through anger, fear, anxiety and now a little bummed. But, as I listen into the other room I hear the following: Mya singing in her room, Dax laughing as his Daddy helps him with his homework and the dog's feet coming to find me. I still have them and I lived today! I was able to hold them in my arms and give them kisses and hugs. Jamie was able to literally sweep me off my feet and hold me. I was able to cook for them and take care of them today. Tonight, I will be able to read to them and whisper, "I love you", as I watch them fall asleep. So, I think after writing this I will be in a joyous and thankful mood. Thankful that any day I have is a Gift. A Gift, I for one will never take for granted! So, I end this with...Yes, another stroke can be added to the list. But, I REFUSE to be broken!

Don't Count Me Out Just Yet!

The weekend flew by and Monday came quickly. I had put everything to the back of my mind as best I could. I've actually gotten pretty good at that. I couldn't sleep very well and woke about 4am. I just wanted to respond to some of the beautiful messages I had received and I wanted to see the sun rise. If my tests came back negative it would require a much longer stay than I desired. Luckily, we were able to get the kids up and off to school and we were on our way. On our way as I was sitting there thinking and mentally preparing myself for what was to come I looked out the window and saw a beautiful sight. Was it a sign....you be the judge:) We arrive to Hopkins in record time. I actually always smile to see it. Poor Jamie's face is not the same reflection. I see Hopkins as a place of healing and hope. He sees it as my wife's being tortured and I can't do anything but sit here and wait. It's funny as we go in we don't even talk our bodies just lead the way. I've noticed over the last couple of years Jamie becoming more and more comfortable in a hospital setting. We've even developed a role. He allows me to lead the way in my care and he sits and listens. He knows the proper times when he needs to pull out the humor card and he's learned when I need him to be serious. His timing is getting more and more impeccable. As we are just about to arrive to the floor...Jamie looks at me and sighs. "Anne, I was hoping we'd never come back." In that moment I felt really guilty. I realized he has been going through this too. It's just not my heart and stroke issue...it's his too!

We get off the elevator and it's as if time went back to almost two years ago. Ugh....but the familiar faces helped in my fear. I was led back to prep for a TEE. A TEE is an echo of the heart. Only difference is they go through the esophagus to get a closer picture. Don't worry you're suppose to be asleep. But, for me I'm so curious I rarely ever am. They wanted to take a closer look at my heart vessels and implant. Checking to see if the cause of my stroke was from a blood clot that broke lose from my implant. As each nurse, fellow and doctor read through my chart it never failed: They would read, look up at me, read again, scratch(neck or head) and then with a confused look say, "You had a stroke?" Yup, and here's the MRI to prove it. Sometimes, even saying it twice. In a strange way it makes me proud. I feel as if I conquered a stroke so well that I am not the victim. But, then again I'm reminded how anything can happen at anytime.

I.V was placed and then many questions were asked. I was led to the TEE room and all hooked up. I was recognized by a nurse and the cardiologist doing the procedure. Kinda strange when you're at a hospital as big as J.H.U. The fellow was wonderful and she was shocked at how comfortable I was to allow her to do the procedure. The nurse amazing!! I reassured her before we started that I would be a great patient as long as she explained what they were doing. But, warned her I hate to lose control so I'll be wide awake. She winked...I don't think she believed me. Medicines were administered and I became very comfortable...But awake:) I watched the whole thing just as I had my previous TEEs. They all were chuckling in dismay. The last couple of pictures are in fact very uncomfortable so I squeezed hard and the nurse and attending MD responded by holding my hand and stroking my hair. Reassuring me. You truly value the presence of touch in those circumstances. I don't care who you are. As the last pictures were taken they dosed me with enough medication that I was finally out. It was just what I needed!!
I had won the award for most awake patient during any TEE procedure Jamie was told. He responded with, "Yup, that's my girl!"

I was told my implant was functioning beautifully and intact. Yes!!!!!! One hurdle has been passed! I was suppose to be seen by a neurologist but my case is a simple one in JHH eyes. Nothing that can't be managed locally. They did say based on my MRI record, that the bleeding was stable and that it was very small in nature. I was told that nothing could be done in a week and half's time anyway. We needed to give my body time to hopefully absorb any residual blood left. What a relief!! There were a lot of worse case scenarios possible for yesterday and the outcome of yesterday could not have gone any better. Today I called my primary cardiologist and his response was, "Such awesome news! You've answered my prayers!" Now, that is why I value him so very much! So, that's my update! I will be seeing a neurologist very soon to get more in depth information about my brain injury(no jokes..lol) and praying no blood has remained. Although, besides my hand that is getting stronger each day and a few jumbled words. I feel amazing!! So, yes...I'm a 33year old woman that has had a STROKE. But, my life will go on just as it did before and I will be loving each and every single moment of it!! Love all of you that support and help me be a better person in life!


Picture taken right after TEE...finally out cold:)

A What? No Way!

There is a saying that goes like this, "God does not give us more than we can handle." I have thought about that statement many times over the past couple of years. Trust me, I'm not any stronger than anyone else. So, why has he chosen to keep piling more obstacles on top of my already battered body? Is it a test? Hummmm...a challenge? I had finally come to terms with the fact that I went through all I did in order for me to deal with Dax's issues and to be given the knowledge to help fight for his proper care. Now another challenge has presented itself. So, the story goes like this......

Since my open heart I've had a few battles. Sometimes an accumulation of extra fluid around my heart which is managed by a drug called lasix. Most of the time it's due to an overworked heart. Other times I deal with an insanely low blood pressure. I'll start feeling run down and get myself in a spiral that normally will resolve itself in about 2 days. Well, last week was just like any other hiccup. I had been battling low blood pressure 70s-80s for about 3 days. A little longer than I had before. I was exhausted and to even get up to get a drink was tiring. I used any reserved energy to tend to my children's needs. It was about 6:15pm in the evening and I told Jamie I just needed a bath. I ached all over and I felt as if I were coming down with the flu. A little lightheaded and just feeling miserable. All of my normal symptoms of a drastically low blood pressure. I made the major mistake of not taking it before I got into the tub. My only focus was to get some sort of comfort. After about 5 minutes in the tub, I noticed my arm felt numb. At first I thought...Wow, the water must be too hot. Within the next minute I realized it was only my left side. I made the possibly life saving decision to climb out. I calmly called to Jamie and said I wasn't feeling right. Within minutes my whole left side went completely numb(almost painful in sensation). I had no control. Talk about mind blowing. I called a friend and discussed what to do. Within 30min with no improvement we were out the door. You might ask, Why so long? Well, partly to have someone watch the kids and I was in denial thinking it would pass. When I entered the hospital I was able to drag myself in. One look at me and they had no question what it was. Everyone was wonderful and the care was spectacular!! I was told I was having a Stroke. I knew what it was but my ears didn't want to hear it. I'm 33 years old. I've had everything in the moon it seems happen to me and now this. No way!! 33year old women don't have open hearts let alone strokes too! The doctor talked about what to expect and as I was calmly asking questions the tears started to run. I put my head down and prayed after he left. Although, extremely disappointed, I still had that unshakable feeling that HE would take care of me. Slowly, as the evening progressed my foot, face, and some arm motion came back. I was praying I had suffered a mini stroke(TIA) only time would tell. Typically, a three to four day stay is expected. I got away with a two and a half days. I battled a few bouts of a significantly low blood pressure that required fluids. I was very hesitant to allow any medications to be started. I had been down that road before. Drips, IVs, oral medications. Sadly, my body needs to work itself out. I'm a firm believer in not over medicating. I will take what I am required but very minimal. I investigate every drug that is placed in my body. Two echos were performed to check the integrity of my implant. They appeared normal. But, an echo can only tell so much. Also, a CT was taken and came back clear but my MRI had not. It appears I had some optic nerve damage and some ischemic(dead tissue) injury to the back of the brain. There is also a patch within the ischemic injury that appears to have been bleeding. My stroke either stemmed from a blood clot from my implant or an even rarer stroke cause by a severely low blood pressure. Because my implant was placed at John Hopkins it was decided that it would be best for them to take a look there. By the time I was discharged my hand had not improved. At times my foot is still dropping and I still am having difficulty using my left hand. But, with each passing day both my hand and foot have improved drastically.

So, the questions have been flooding in to me. Mostly, how am I feeling....am I scared....what are my limitations..and what am I doing to prevent future strokes? Well, shockingly I feel just like normal. My only issues I have are frustration at times which tire me mentally. I've lost my keys more in 5minutes than I had all year yesterday. I watched my coffee maker pour coffee onto the counter because I forgot the cup. I hate asking for help. Sorry, that's how I am. My spirit has mostly been great. But, I am having one issue. If one hasn't noticed I live life quite a bit differently than most. In order to deal with a chronic illness I have to live day to day. I have to live life to the fullest and never allow negativity into my life. I never sweat the small stuff. I am a firm believer that I'd rather have 5 great years than 20 boring/bubbled years. Only HE knows when my time is up. If it's going to happen it will happen no matter what I do to try and stop it. So, why not live it up? I am a STRONG believer in the power of the mind and it's abilities. Have you ever heard the stories about cancer victims who had cancer for years without knowing it and then they were told they had cancer. Two weeks later they are dead. I believe that's because they gave in and allowed the cancer to consume them. Sorry, if my beliefs are hard to understand. But, I have to be true to myself. I will NOT become a victim of heart disease or a stroke! So, for those of you who are struggling with this. I know you are trying to protect me and because you don't know how else to help me you want to place me in a bubble and shield me. I've had so many call me crazy, stubborn or thinking I'm in denial. But, I assure you I am NOT. I need to have a crazy life filled with challenges of my abilities. I need that to heal and to cope so that I don't become that victim. I have faced so many challenges that many would have given in on the first round. So, if your scared or concerned just sweetly tell me...hug me. Tell me you love me and I will listen I promise.

Am I scared? Yes and No. At times Yes, out of my mind. But, that's short lived. Again, I have trust in HIM. I have to trust since we all don't know when is our time is up..I am no different.

My limitations...well for now I have been placed on no traveling or exercise until Monday. At which time I will be getting test done to further investigate what happened. Since there was blood seen on my brain we have to be sure I don't reactivate it or break another clot free. As far as my hand. I have done aggressive physical therapy at home. Thankfully, to some PT friends who have helped me out without actually having to go in for PT.

As far as future strokes. Well, I'm always at risk because of my heart history and previous strokes. I was placed on blood thinners to keep my blood running smoothly but have temporarily been taken off of them until Monday. So, all I can do is pray like crazy and if a stroke does happen anytime in the future know the signs and get help right away.

I hope this has helped for all those wonderful people in my life who are so very concerned. I'm up walking and look normal. I'll joke about what happened and am very comfortable to answer any questions. Lastly, am I frustrated with God or upset this happened to me?? Nope! I love him more than ever and I trust that I'll one day find the real reason why this happened to me. Until then....I'm gonna live it up and SORRY you can't stop me. But, please have faith in me that I am not careless or irresponsible with my life. I just want to show my children that no matter what obstacle they are given in life they have the power to overcome it!

My New Year's Resolution

Every time I decide to close my blog I am convinced otherwise. As I've said before I truly have amazing people in my life. Well needless to say it's been a year. A year of curve balls, continued growth and new found perspectives. The first year after surgery was one of growing continued strength for me. I was on a roller coaster high! Within the last 9 months slowly I'm coming down from that peak. I guess what goes up must come down. Honestly, some issues are surfacing. But, hey it was to be expected. You can't be hypoxic for months, go through a number of heart procedures and still have had a perfect heart. My heart is mine and I'm still extremely blessed that I am here and 95% of the time beating all odds. I still live a life of compassion and fullness. I just call my little bumps reminders is all. Half of those reminders expose themselves because I am stubborn and feel invincible. But, I'm starting to learn to listen(a little). All is well and the kids are doing wonderful. Dax is flourishing only showing signs of windiness during sports. Here and there I get brave enough to touch his chest. For the most part he seems fine. We will repeat his echo in August...we are still praying for his miracle! But, God has a plan and at this time all I can do is trust!

So, I have been asked if I in fact lived up to my New Year's Resolution of 2010. Well, the answer is plan and simple YES! If one was to recall it was to create life experiences and experience at least one each month. My journey literally started off with a "Bang"...haha! I tried to document them as best I could via facebook. Surprisingly, I learned that I appreciated the simple experiences as much as the bigger. I've always tried to have fun and experience new things. But, pushing myself led to a greater sense of achievement. In fact some of my adventures opened the door to others. I also found that living out other's aspirations led to a greater fulfillment more than I could have imagined. Creating some of those adventures was very tough at times. A couple of times I was knocked down a few notches due to health concerns(understandable), had scheduling issues, or the weather became a factor. But, all in all I had a great year!! My friends and family inspired me to keep going and without them I wouldn't have had many of those adventures:) So, here's a few listed big and small:

1. Shot a range of guns(first time even holding a gun)-videos and pictures on facebook

2. Flew and landed a plane by myself-Which has made me think a pilot's license is in the future.

3. Glassblowing- which lead to a magazine picture, business cards, and my picture on a website.

You can view it on http://www.jefferyauxer.com/

4. Beekeeping-Just me and 300,000 bees.

5. MMA training with a wonderful friend & fight with a National title holder-which led to a front page cover in the Sussex Post and web picture.
www.crossfitocmd.com/crossfit_ocmd/2010/04/page/2/
http://www.horizonmma.com/ or look them up on facebook

6. Zumba lessons

7. Snowboarded-Still thinking I fractured my tailbone on that one

8. Published a book for my Mom

9. Took up Golfing-Honestly I'm not that bad

10. Biked 20 miles

11. Kayaking

12. Grew my first garden-truly amazing and beautiful to see what can grow from a little seed.

13. First professional football game

14. Stain glassing

15. Was in a fashion show..Represented Sussex County as a "Go RED Girl"

16. Finished a book for my children

17. Hypnotized on stage-was last one standing out of 40. Sadly, I was relaxed but not really
hypnotized.

18. Mechanical bull riding-was in a contest..missed winning by 2 seconds

19. Danced under the stars

20. Kissed in the middle of a busy intersection

21. Broke out in song for no reason in public-ended up with a number of us singing and dancing

22. Chased by gang members-that will give you a new perspective

23. Photographed my first event

24.Tried escargot, frog legs and Bison

25. Motorcycle riding at a high rate of speed with no helmet

26. Dirt bike riding in a mud pit(No helmet either...not advised)

27. Ice fishing

28. Part of a stage production

29. Somehow my story has been in 3 newspaper in all this year:)

30. Ran my longest distance of 6miles

31. Ran the mudrun with friends and my hubby-Getting my husband to run was an accomplishment in itself.
http://www.delawaremudrun.com/

32. Learned about brewing beer

My adventures might not seem that crazy or interesting to others. But, to me they were all so very special. Mostly, because I experienced them with friends and loved ones. Each one taught me about a piece of life I never knew. Honestly, I made every day an adventure. Numerous times driving a different way home or stopping on a back road just to look around. Not only did I have an adventure but I experienced each one. I took it and milked it for all it was worth. I've never laughed, loved and thought any harder during this year of my life. I've seen some things I would like to change and I've valued some things I love about myself. The most profound lesson I've learned from these experiences and new found positivity in life, is that plain and simple some don't like to see happiness when they are experiencing difficulty in life. At first I was taken back by this. I believe at first glance many think that maybe this excitement and positivity is masking something. Possibly, it could be that they think I must not have any difficulties in life like them. Well, sadly I have the same ups and downs of life just like any other. But, what is different about my life is that I have been blessed with a Gift. The Gift was that I was given an illness that at one point I was faced with an inevitable poor diagnosis. It made me in a matter of days reevaluate my life and who I was. Although, I would never what to go back to that place again I am in a way very thankful because that Gift turned into a true blessing in my life. So, I do hope that those know that they don't have to go through a life changing experience to be happy. Your life can truly be anything you wish. Create it and then go out and live it! Remember to always laugh at your mistakes and praise yourself for learning from them. If you are tired and weary, be thankful because that means you just made a difference somehow. It's easy to be thankful for the good things but that's not what teaches us. The difficult times are when we grow the most and learn our greatest of lessons.

I have so MANY more adventures I can't wait to experience in life! Hopefully, God will continue to bless me with the gift of time. I'm thankful for a physician who recognizes the value of not listening to numbers but rather to his patient:) I can't change my circumstance but I can dictate how I play the hand I am dealt. As far as my new New Year's Resolution well...it will be the same! I've had such a fun year that I can't wait to see what new adventures are in store for me! So, if you have one be sure to keep me in mind because I'm up to ANY challenge!! Happy Holiday's all and Happy New Year!