An Anniversary to Remember

The Queen of Hearts
The Queen of Hearts

Three years ago at this moment I was sitting in a room in a hospital waiting.  Restlessly waiting, for the heart surgeon to stop by.  It was a beautiful cold and sunny day, just like today.  Christi was there.  She had flown in from New York City for a couple of days.  Mr. and Mrs. Burns were there. Mrs. Burns quietly reading, Mr. Burns checking his Blackberry, making sure every one was taken care of.  We were a bundle of nerves.

Lily had gone into surgery earlier that morning.  Open-heart surgery.  Not your normal lets change a valve or two surface scratching in your chest cavity brand of surgery you hear are so routinely done these days.  The doctor was going to stop her heart, cut into her heart, sow up a tiny little hole in the middle of her heart, and then close it all up in hopes to alleviate the cause of her recent stroke.

A little past 11 that morning, the doctor came in. He spoke with us and told us that the surgery had been a success. Just a short 8-10 minute operation. A routine task, for him, as he had developed this procedure. Lily would be in the ICU soon and we would be able to see her soon.

At half past noon, we were allowed to go see Lily. I still remember her laying there in the bed, with all those tubes in her. Later, as she awoke from the anesthesia, still groggy from the surgery and the pain drugs, she turned and smiled at me. I felt relief. The beginning of the road to recovery and physical healing for Lily and for us. The stroke that happened earlier that summer had been a life-changing incident. The open-heart surgery repaired that little hole, the culprit, of that devastating event. It did not stop us. We were moving on.

The last three years have been some of the best of my life. We still live with the aftermath of a stroke and open-heart surgery. This is now a part of our story. I am still amazed at her strength of will and at her courage. We were both lucky.  Living in Boston. Close to such great medical centers. An incredible support group of friends and family. But most of all, I am lucky for still having Lily in my life.  Thanks for all that you are and all you mean to me.  Besos.

If you want to know more about stroke and heart disease, please visit the American Heart Association web site. Please help stop the number 1 killer of moms, daughters, sisters, friends, and lovers in this country. Know the signs.

American Heart Association Lobby Day

American Heart Association Lobby Day in Washington DC
American Heart Association Lobby Day in Washington DC

I reflected this week on the two days I spent in Washington D.C. lobbying for the American Heart Association (AHA). I went for Lily, my girlfriend, who three years ago suffered a stroke from a 1.5 cm blood clot that was lodged in her brain.  (for more, see her blog on her ongoing experience) She then underwent open-heart surgery to correct an Atria Septum Defect (a hole in her heart) that was ruled as the cause of the stroke.  I know that Lily and I were extremely fortunate in that I recognized the signs of a stroke and we were at the hospital within 20 minutes from the onset of the stroke. The awareness I had of the signs of strokes is what allowed me to recognize Lily’s stroke as it was happening.

As I walked around the conference and saw people, young and old, who live every day with the visible effects of their own battle with this crippling and debilitating disease, I was thankful that Lily has fully recovered and leads a whole and full life.  This trip made me realize that even though I have been working with the AHA in Boston, and I have supported Lily in her advocacy work, I have not been doing enough.  It galvanized my resolve to be a stronger advocate, to be more vocal, and to push harder for advancements in the prevention and treatment of heart disease.

I went to DC to support Lily, not having a specific topic that I was advocating for, but I realized that I could lend a strong voice to advocate for the sustained support of National Institutes of Health (NIH) research funding.  I am fortunate that as a graduate student I received two fellowships from the NIH.  This financial support not only gave me the freedom to do cutting edge research, but also gave my thesis adviser the ability to support other graduate students in her laboratory.  Without these funds, my adviser would have had to deny positions in her laboratory to bright students because of lack of financial support.  Running a research lab with postdoctoral fellows and graduate students cost money, lots of money.

At the NIH funding, we allocate around 33% of research money at the NIH on cancer research, while we spend only 4% of the budget on heart disease research and 1% on stroke research (See here for NIH breakdown).  The money we spend on cancer research drives much of the basic science researching cellular processes.  This research is increasing our understanding of activation and regulation of molecular pathways in cells.  Much of the knowledge gained from cancer research is being applied to answer questions in other areas of disease.

This being said, we need to be lobby for an increase in funding of research for heart and stroke research.  Heart disease is the #1 killer of Americans.  There are several ways we can do this:

1.    Increase the pot of money without changing the total distributions – if the pot has more money, under the current distributions everyone gets more money.
2.    Maintain a steady incremental increase of the NIH budget – a steady 6-7% annual increase in the NIH budget will help us reach goal of doubling the NIH budget in the next 10 years.
3.    Increase the interdisciplinary nature of disease research funded by the NIH – this allows for the sharing of best practices and of the most recent.
4.    Increase the money for prevention and education programs at the NIH and at the Center for Disease Control (CDC) – knowledge is power and the more our citizens understand the risks of heart disease and what they can do to change their risks profile, the more we can do about decreasing the incidence of heart disease and increasing the quality of life of the survivors.
5.    Make sure that the health care reform package that is being discussed in Congress does not get derailed by individuals who do not have the best interest of our citizens in mind – it is easy to think that these changes proposed in the new health care reform package is going to cost a lot of money, but ignoring the issue will not make it go away, and the costs associated with postponing a meaningful package will be far greater that the initial cost of coverage, education, and prevention programs.

These efforts can not succeed without help from everyone out there joining in and voicing their concern to their Senators and Representatives.  You can start by joining the AHA’s lobby page and signing up for updates and issues that come up in our fight for better health coverage for all Americans.  This is an ongoing struggle that does not rest.  The victories can sometimes feel very small compared to the job at hand, but rest assured that every small push forward brings more attention to the issues at hand.  Remember, we are fighting for your parents, your children, and you.   I do this for Lily and for all the others who can not.  Take care and please join the movement.

Hector