I remember when all this heart stuff started happening I felt very impressed to write everything down. How grateful I am for that! Being able to re-read through this journey is very helpful.

Surgery is set -- December 1st, 2010. We will fly out on Monday, November 29th. Tuesday, November 30th will be spent doing pre-surgery testing all day, then Wednesday is the day. It is nice to have it figured out. Dr. Dearani's staff is very nice and helpful.

I had an interesting experience last week that I wanted to share. I got a call from my friend Paul Shields - Paul and his family have been such a wealth of information for us during this process. What a wonderful family! Anyway, Paul called to suggest that it might be worthwhile to have another great surgeon give us a second opinion. This surgeon is at Boston Children's Hospital and one that the Shields have dealt with. That thought surprised me because I hadn't even thought about doing so. I was so excited that Dr. Dearani could help us that I didn't even think about a second opinion. As Paul and I discussed the option of getting a second opinion I got a strange feeling - a not so good feeling. After I got off the phone with Paul I was confused. When I thought about getting a second opinion from Boston Children's Hospital I just felt sick, and that really confused me. Why would I feel that way? Getting a second opinion seemed a harmless thing, why should I feel sick about it? Really strange...... so I spent a few days doing some pondering and praying. After doing so I made my choice, and felt great about it! I thought I felt good about the choice to go to Mayo, but after talking with Paul I felt even better about it. For whatever reason that is where we need to be. Whenever I think about Boston Children's Hospital I feel nervous, but that is not the case with Mayo. I am glad Paul called and made me think about another option. Although we didn't decide to get a second opinion I now feel even more solid in the choice to go to the Mayo Clinic.

Before My Heart Stops

Every week I get random emails from Deseret Book advertising new books. I usually don't pay much attention to these - until this past week. This week when I briefly looked over the email sent I noticed a name that stuck out. That name was Dr. Angela Yetman, who is my heart specialist. She had written the foreword for a new book written by Paul Cardall entitled "Before My Heart Stops". I was draw to read the few bits of info on the book since I think so highly of Dr. Yetman. It was then that I felt very impressed to read this book. I felt so strongly about it that I quickly ran over to Deseret Book at 8:45 p.m. and quickly picked it up. Now, that is so not my thing. I like to ponder every expense I make so to jump up and get it the moment I see it advertised is very un-Cary like. But Heavenly Father prompts us for reasons He knows, and He knew I needed to read that book.

Before My Heart Stops is a memoir by a man named Paul Cardall. Paul was born with congenital heart disease, which means he was born with a severe heart defect. This book is based upon a blog Paul kept while he waited over a year for a heart transplant. What an inspiring story this book shares!!

I needed to read Paul's story. I do not face a heart transplant - thank goodness! - but it is hard waiting and wondering for an outcome. Paul shares many words of wisdom that I can relate to and I am very grateful for them! Some such things are these: #1 - Patience is more than just waiting. Waiting is being lazy. Patience is waiting while still giving of yourself. #2 - To deny others to serve you is to cheat them out of joy. It is always easier to serve than to be served, but allowing yourself to be served strengthens character. #3 - Live for today and not for what could be. So many people waste countless hours thinking that when certain events or other various things occur they will suddenly be happy. I am a huge believer that you can't wait for tomorow to be happy. Happiness is a daily choice. Paul's thoughts about this issue reminded me that I can't put everything on hold until I get better. I need to live today for today. And #4 - Attitude is everything! I have always been a huge advocate of attitude. I believe your attitude determines the outcome your life. You cannot control what happens to you but you can control your attitude about it. Reading Paul's story reminded me of the importance of hope and how hope affects your attitude. We all need hope and we all need a positive attitude - those two attributes will get you very far in life!

Thanks to Paul for sharing such a wonderful story! I believe many lives will be enriched as a result. I truly admire his ability to share such a personal struggle with others. I know that that would be a hard thing for me to do.

Congenital Heart Disease is the leading cause of death in children. As I have been up at Primary Children's Medical Center I have noticed many children who are very sick. I feel very humbled to have the health I do. Yes, I do have congenital heart disease but overall my health is good. I am grateful for all I have been blessed with and have hope for a bright future.

The Verdict once again...

We finally heard back from the Mayo Clinic! Dr. Yetman called yesterday and said Dr. Dearani had called her that morning. And the verdict.........MAYO CLINIC!!

Dr. Dearani says that he cannot perform the true cone procedure because one of my tricuspid leaflets is too damaged. His plan is to take out the old ring in my heart and replace it. He will then do a repair my heart valve using my own heart tissue. There is still some question about having a pacemaker or not. I believe that will be determined when meet with Dr. Dearani.

Dr. Yetman believes this to be our best option and truly, Keven and I feel it is the best option we could have been given. Dr. Dearani is a very gifted surgeon. He knows this heart defect SO well. It is comforting to be under such wonderful care!

May I add that Dr. Yetman and her staff - Barbara and Nancy - are so wonderful! They treat me with such kindness! I just love nice people!

Dr. Yetman said the next step was too make sure we can get our insurance to approve the surgery, Mayo Clinic, etc. So after talking with Nancy, Dr. Yetman's nurse practioner, I made a call to the insurance today. More wonderful blessings. First, our insurance happens to be BCBS of Minnesota! That means our insurance approves the Mayo Clinic, Dr. Dearani, etc. I love it!

Once we check one more insurance issue we will be ready to schedule a date for surgery. We are looking at November. Our home is supposed to be done the first week of November so anytime after is fine. We are thinking right after Thanksgiving. That way our house should be done and we will be here for Thanksgiving with our kids. The Thanksgiving/Christmas season is a crazy time to be doing all this but we need to do this before the end of the year and we also want to be in our own house so what do ya do?

Ahh....so glad to have some sort of answer. Not knowing is harder than knowing.

Got some word back from Dr. Yetman regarding surgery. The doctor here who has done the cone procedure did not know if I would be a candidate for the surgery. He felt the best thing to do would be to contact the specialists back East to get their opinion. So, all my cardiac tests have been sent back to Dr. Dearani at the Mayo Clinic in Minnesota. Now we play the waiting game...... Dr. Yetman says we could hear back in one week or four weeks, we just don't know.

Our plan right now is to wait to hear back from Dr. Dearani. If he says he can perform this new surgery then we will get things scheduled to go back East. If we find out he cannot do this surgery then we will be talking to a heart surgeon at Primary's who will do a valve replacement.

No exact word on whether we will need to have a pacemaker or not. I think that will depend on what surgery we have and how it helps my heart function.

So, the waiting game. Hopefully we will hear something sooner than later!

And the Verdict Is...

A few days ago I went in for a special exercise test at Primary's. Dr. Yetman told me she wanted to do this test to check a few things.

So I came early in the morning and came dressed to exercise. They checked my lung capacity, my oxygen levels, and did an echo cardiogram. As soon as those were done they had me get on an exercise bike. They hooked me up to a monitor, put a funny helmet thing on my head that put a mouthpiece into my mouth to measure oxygen rates, and then told me to bike until I couldn't anymore..... And so I biked! I biked and biked and biked! I could tell the bike resistance got harder and harder as time went on. When the doctors could tell I couldn't bike anymore they had me hurry and lay down on a table to have an echo cardiogram done. They took many pictures of my heart and then said Dr. Yetman would be right in.

Dr. Yetman came right in and said she found what she was looking for -- and that is this: I have stenosis in my tricuspid valve. She thought that was the obstruction she was seeing but she wasn't sure. Now she is sure and is so sure that she said we did not need to do the cardiac cath anymore.

So, how do we solve that problem? With surgery. Yes, Dr. Yetman said surgery is a must. Now the real question is - what surgery will we do? There is a new procedure out called the cone procedure in which surgeons are able to use you own heart tissue to repair the tricuspid valve. We would love to have that surgery done if it is possible, but we have to check it out. Dr. Yetman was going to call a doctor at Primary's who knows this cone procedure to see if I was even a candidate for this surgery. Dr. Yetman says this surgery is usually done on young patients (age 8-15) who have not had any previous surgery. I am not in that age range and I have had a previous surgery. If this surgery is a possibility then we will be going back to the Mayo Clinic to have it performed.

Dr. Yetman says we also have to address the rhythm problem I have. I have a different rhythm issue then most Ebsteins patients so she was also going to consult with a cardiologist who specializes in rhythm issues. She believes that my rhythm issue might resolve when I have surgery and my heart is functioning better. But there is also a good possibility it will not. If that is the case then we will most likely need to have a pacemaker put in.

So there we have it. Lots of thoughts about how this is all going to come together -- but I will save those for later. Right now I must just state that I overall I feel at ease. Both Keven and I feel like doorways have been opening and they will continue to do so. We have felt the Lord's presence over the past week and a half. I have no doubt He will continue to support us.

Part 3

Tuesday, August 3rd, I went to meet with the Shields Family - Paul, Sandi, and Sarah. What an amazing family they are! I shared with them my story, they shared with me their daughter's story, and then we both gleaned information from each other. It was wonderful to talk to someone else who had experienced something like this. It felt so right.....just meant to be. I left feeling that the Lord had put them in my path for a reason. I also left knowing I had made some lifelong friends. What a wonderful blessing and miracle!

I came home, discussed many thing with Keven, and went to bed feeling very much at peace.

The next morning I received an email from Paul. He was able to email his daughter's pediatric cardiologist to see if Dr. Yetman was the right doctor to see and this doctor quickly responded that she was indeed the right person to see. She said she planned to refer their daughter to Dr. Yetman as soon as she reached adulthood. I was excited to hear that news and proceeded to call Dr. Yetman's office for an appointment.

When I called Dr. Yetman's office they told me her first opening would be in September. I knew it would probably be a wait to get in to see her so I didn't fret much about having to wait so long. In my heart I just felt like it would all work out.

I emailed the Shields to let them know I had scheduled an appointment and to thank them for their help. About a half hour later I received a call from Sandi. Paul and Sandi had once again emailed their doctor asking if I should wait so long to be seen. They immediately got a response from their doctor stating that I should not wait and in fact she had taken the initiative to talk to Dr. Yetman. Sandi gave me the phone # for Dr. Yetman's nurse who was waiting for me to call. I called this nurse, Nancy - who is super nice!, and she had me set up to come into their office the next afternoon!

Wow!! That was surely a miracle and blessing! I was once again reminded the Heavenly Father puts people into our lives for specific reasons. How grateful I am to all these people who have put me into the right places - Yeehaw, Megan, The Shields. How grateful I am to my Father in Heaven for His watchful eye!

Thursday I went up to Primary Children's Hospital. I started my afternoon with an Echo cardiogram, Bubble Study, and EKG. I could see that my heart rhythm was doing some weird things. After the tests I met with Dr. Yetman and her resident, Dr. Lou. Super nice ladies! Both doctors listened to my story, asked lots of questions, and then explained what was going on. #1 - My heart rhythm is off. I have a 2nd degree heart block, which causing it is be irregular, slow, making me feel off. So no driving was then put into place. #2 - There is some obstruction in my tricuspid valve. Dr. Yetman was great to explain all this to me and then explain the plan of action. First, we would do an exercise test to see what my heart rhythm does when I exercise. After that we would do Cardiac Catherization. This cardiac cath is a same-day surgical procedure in which they go up your femoral artery with a little camera and look inside your heart. She said this was the only way to determine if I needed another heart surgery. It would also determine what they would do about my rhythm problem.

Those answers may seem scary, but to me they put relief on my system. Now I had answers. Now I knew what was happening. Now there was a plan of action to resolve the issue. That provided peace for me. Also, it seems like during my whole life I have had this cloud over my head - the cloud of when will I need another heart surgery? Dr. Yetman said that this surgical procedure will give us that answer. Either I will need surgery or I won't and I won't ever.

I spent some more time talking about other issues with the doctor. Would I need a valve replacement? Could they do this new cone procedure? Was I able to have more children? She was able to answer some of my questions. Others would have to wait until we knew what was going to happen.

So that is where we are at. My exercise test is set for tomorrow. They are supposed to set up my Cardiac Cath for sometime over the next week or two. I am getting more anxious to know what is going to happen - BUT, overall I know it will all work out. I know the Lord has been with me during the last crazy week and He will continue to open up pathways. Of that I have no doubt!

Part 2

Alright, here is Part 2 of my story.

Monday morning I called my cardiologist. Now, a little background. The cardiologist that I had been seeing since I discovered a had a heart defect left his practice a couple of years ago. A new doctor took over his practice but I had had a hard time getting to know and understand him. I had only met him once and he seemed a nice enough guy, but his office staff was not great. The first time I had tests with this new doctor it took me 4 months to get tests results back. The doctor had told me to call about the results but each time I called the office staff would tell me they weren't sure what I needed so they sent me to a voicemail for the doctor's nurse. I called once a month getting that same answer for 4 months! I don't feel like I am a very demanding person. I know doctor's offices are busy places so I gave them plenty of time to get back to me. After 4 months I finally called the manager for the facility and that got me some answers pretty quick. After that experience I haven't had much follow up. So when I called Monday morning the office staff started giving me the same run around. I explained what had happened over the weekend, that the ER doctor had wanted me to come in that day, etc. etc. The lady on the phone told me that she didn't know what they needed to do. She said she would have to call me back later. I hated hearing that answer because they NEVER call back. I asked if she thought I would be able to get into see the doctor that week and she told me she wasn't sure what she could do for me. I then tried to explain that I wasn't feeling well and felt nervous about what was happening. She once again told me she didn't know what she could do and she would call later. I hung up the phone in tears... I decided right then that that was enough of that.

I have a good friend who works over at the new Intermountain Medical Center in Cardiology. I gave her a call and explained what had happened. Megan was great! First, she listened to my story while I was super emotional then made some phone calls to people she worked with. Within minutes she was able to tell me more about what my irregular heart rhythm meant and what doctor I should call about it. I immediately called the office she referred me to. The office staff there was super nice! I explained some of my heart history and what had happened over the weekend. They told me that I needed to be seen asap and it just so happened they had an opening available that day with one of the doctors my friend Megan told me to see. What a miracle! These heart doctors can take forever to get into!

That afternoon I went into this new facility, had some tests done, and meet with this new doctor - Dr. Rueben Zitto. What a great guy! He was wonderful! He asked me lots of questions about my past heart history and then gave me a foundation of new knowledge! He first told me that he didn't feel like he could answer any of my questions. He said he had been practicing medicine for 30 years and he had only seen my birth defect about 10 times. He was surprised I had been seeing a regular cardiologist because they don't deal with heart birth defects as much as other pediatric cardiologists. So he said I needed to go see a certain doctor named Dr. Angela Yetman. He felt confident she would have the right answers for me. I really appreciated his honesty and was glad he didn't try to make up answers for me. He did tell me that he thought my heart was going in and out of regular and irregular heart rhythm so I needed to get that checked out soon. He scheduled me for a special test the next day and told me to call this new doctor as soon as possible.

It was wonderful to get some good answers! I felt very relieved and knew that the correct doorways were opening.

The next morning I went in to get a brand new heart monitor that the Intermountain Medical Center had just got the previous week. Getting that was another miracle. I went in first thing in the morning to the hospital and realized that my insurance wasn't covered at Intermountain Medical Center. So, we tried calling some other hospitals to see if they had this same heart monitor available but no one did because the monitor was so brand new. I called Keven and told him what was happening. He reminded me that we did have coverage for this test because we had paid extra for certain insurance benefits that year. So I went and got the right documentation we needed and was able to get the monitor. How grateful I am we elected to get this particular coverage!

When I got home my friend Yeehaw called and said that the family who had the daughter with the same heart defect as mine would be able to meet with me that night. I was pretty surprised we found a time so quickly since when YeeHaw and I first talked about getting together we thought it would have to be in a few weeks. But then we suddenly were able to make it work and I was very anxious to chat with them. What a blessing!

And the start of just that visit with them is a whole other story that I will save for my next post.