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To Live Through September with a CHD

Monday, October 01, 2012

By Ellen Greenberg

As a child, I always called September “hell month.” I called it this because I, like other CHDers, grew up with learning disabilities. What does this have to do with September and the name I chose? When school began again, it was scary to have to deal with new teachers and explain that you have a learning problem, and give them notes from your cardiologist on the days you were absent. These were fears that ran through my mind at the beginning of the year.

As years went on and everyone knew me, and two or three or four surgeries later, you get over this because you realize any month can be “hell”—not just September. You become acutely aware that at any moment that shoe could drop and eventually it will. I also began to look at it objectively. Realizing that should the shoe drop, it is not a foreign experience, and I would conquer through just like all the times prior. If the teacher had to make an accommodation for me because I was absent due to a cardiology appointment—tough. What was their alternative? Frankly, I was the one with the bigger life issue at hand.

In college, I began to see September in a completely new light. I would share stories with friends about when I was going home to for the Jewish High Holidays. I really began to cherish these traditions. Not only is it the start of the school year, but it began to feel like a fresh new start. I wish that New Year’s Day would be September first. This way as everyone heads back to work and to his or her routines, they can feel they are doing so with a clean slate.

September 2011 through the middle of October 2011 was indeed “hell month” for me. I was so ill and full of ascites. The doctors literally did not know what to do for me. After nearly exploding and dying at my mother’s table on the first day of Rosh Hashanah, I spent more than three weeks in the hospital while I was evaluated for a heart transplant, and had multiple treatments and procedures. The doctors did not know if it was my liver or my heart or both; they felt I needed a new organ but were unsure of which one. Every day was a battle as I “stumped” the doctors.

Finally, they decided I would need a second opinion. Being told that if I needed a heart, they could not transplant me because of my anatomy, and the fact that they do not transplant adult CHDers upset us all. This back and forth was extremely hard on my family. Meanwhile I was missing every holiday there was and was bedridden when I should have been with company and friends for the start of our religious new year. I missed my yearly participation in the Yom Kippur services, which has become something I did since my last surgery, so it means a lot for me to be able to get up and chant for the congregation.

This September I got many of my wishes. I am not on the transplant list and do not need to be at this time. I was home for the holidays, which are continuing. I was offered to chant in the large sanctuary in my synagogue. I had my rabbi up there with me. When I finished he called me over and stated that he knows it was important for me to have chanted and he was delighted I was able to this year.

This September has been a magical one and a clean slate for me. I participated in the holidays, while proving to myself that I am still capable of doing so, plus I am in my last year of graduate school, doing my internship prior to student teaching. I feel like shouting, “Yes, I am back!” I am singing, seeing concerts, and all the hell of last year is behind me with the door closed. I see the new one opening. So far, I like what I see!

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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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