Marfan Gala

Dear readers

Last week I attended the national marfans foundations annual gala at cipriani’s restaurant in new york city. It was an exciting event with many distinguished and honored guests such as mayor Bloomberg and leading doctors from around the country. The event was mainly about promoting early diagnosis of marfans. Almost 50% of people with marfans don’t know they have it. I was lucky to have an early diagnosis and have my symptoms monitored all my life. I feel proud to be part of this great association and I am happy for all the people who come after me.
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Best regards
Spencer Grabel

End of winter

Dear Readers

I am now back in school full time and about to complete my first full week of the new year, I am excited that winter is almost over and the start of the boat season is only a few weeks away. I am hoping to be one of the first people to have their boat in the water this year. I am looking forward to the weather getting warmer and going to camp over the summer. 

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Best Regards

Spencer Grabel

 

A year later

Dear Reader

A year ago today, I was lying on a table in operating room 25. I had a one hundred four degree fever, I had an endocarditus infection that could go anywhere in my body and cause serious long term damage. A year ago today, my chest was opened and ribcage was broken,  I had a heart lung machine hooked up to me keeping me alive. A year ago today I hadn’t eaten anything more than a cracker and some water in more than a week. A year ago today I was 95lbs. A year ago today I was not in great shape. A year ago today, My doctors made the choice to put me into a long open heart surgery under horrible operating conditions rather than risk the vegetation spinning off and causing a stroke.

Today, I am lying on a lounge chair on a beach in Jamaica, its about 85 degrees. Today, My heart is healthy with a clean and repaired mitral valve and a normal sized aorta. I am waiting for a cheeseburger, fries and a chocolate shake to come to my seat. Today, I am 150lbs. Today, I am healthy. My biggest decision today is whether I should go sailing before or after lunch. They say that time heals all wounds. That is certainly true for me.

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Nest Regards

Spencer Grabel

Making progress

Dear readers

I am in a stable recovery. I wake up every day feleling a little bit better than the last. My homeschooling is going well and I am hoping to go back to real school starting the end of this week or the week after February break. Over the break, we are going to Jamaica. I am extremely excited and am hoping its gonna be a good trip. So, for once everything is going the way it should. And I intend on keeping it that way.
Thanks for reading
Check back soon
Best regards
Spencer Grabel

Friday

Dear readers.

On Wednesday, my heart went back into the flutter again. We went into the hospital on Thursday planning to get shocked.
When I got there, they did the normal triage of tests and concluded that my heart pulled itself out of the flutter. I am back to normal again and back to the road to recovery. Also I decided to change the backround and theme for the blog. There is a new style and picture up. I hope everybody likes it
Thanks for reading
Check back soon
Best regards
Spencer Grabel

Recovery

Dear readers

I am doing well. My recovery is going smoothly and my homeschooling has restarted after last weeks delay. I am feeling good and have more energy every day. Tomorrow it will be one month since surgery. I am still not back in real school but I am getting closer each day.
Thanks for reading
Check back soon
Best regards
Spencer Grabel

Friday afternoon

All good. Hoping to escape within the hour and head home
Dad

Out of surgery

Spencer is back from OR.
We are waiting for someone to tell us what was done and how it went.
Spencer just came out of sedation and first words were “grill cheese, French fries and milk shake”
I’m guessing that’s a good sign but not a scientific conclusion
Dad

Friday morning update

Dear readers
My atrial chambers are beating very fast and are uncoordinated with the lower chamber. My atrial chambers are beating at about 300 bpm and my heart has a safety mechanism that knows when the atrial chambers are beating to fast and tells the lower chambers to beat at a fraction of the speed. The way to fix this is to reset my heart. They use the same machine that restarts dead people’s hearts and basically shock me. The shock serves as almost a reset button for the heart and should put it back to normal. It should take about 45 seconds, but I will be unconscious for about an hour. I am comfortable and waiting . Procedure scheduled for 11am
Thanks for reading
Check back soon
Best regards
Spencer Grabel

P3 here I come

Dear readers

I assumed after being home for just over 2 weeks, that I was good to go and safe from the hospital. Everything was behind me and good.

We had one scare with a mess up in medication, but we got through it and I was feeling good.
But last night we ran into another complication.
My heart rate was extremely high whenever I moved. We called dr Gelb this morning and he told us to come in. They did the normal triage of tests and measurements, then I was told that I have an atrial fibrillation flutter. That means that the top half of my heart is fluttering and sending weird signals to the lower half of my heart and it needs to be fixed. So I am being admitted to the newly renovated p3 section of the hospital. Tomorrow I am going into a procedure to shock my heart into beating normally. Best case scenario I will be home by tomorrow and everything will be fine. Worst case scenario, there is a clot and I will have to go on blood thinners and wait for the clot to go away before they can shock my heart into beating right.
Thanks for reading
Check back soon
Best regards
Spencer Grabel