Sorting by


May 2022 Updates: I Need To Live

Sometimes I wake up in the morning, look in the mirror, look at myself, and say to myself, “Wow! This heart still beats; I am still alive. That’s Right, and We have not done all that surviving, to yield” Then I do my Black Panther come back. “I never yielded… as you can see, I am not dead”. I am reminded that I am still alive.

So, I wake up, and I go after my day. For “this is is the day that the Lord has made…”, and I need to live it. But what is it to live? What is the goal of it all? To me, it must be to be happy. They say happiness is a series of victories, and I have been winning; I am very grateful for this life, every day, every minute, and second.

I feel like Black Panther Returns, on loop.

I could never express enough how grateful we are to all of you for your continuous support, thoughts, and prayers for the community. We appreciate you for all of it. Today, I thought I’d give you a brief update on what has been going on with my health, life, work, and social enterprise.

At Home, we've been doing well.

Desi and I are managing to keep up with the boys, who are growing scarily fast. There are no dull moments in life with three boys (In July, Buraq turns 8, and the twins, 4).

Check this link for some recent photos. And a video project we did last Fall with the great Living in the Light Team for Tenaya Therapeutics.

Healthwise - I am still with my HeartMate LVAD inserted in my heart, going 5 1/2 years now.

I am still on the heart transplant list. Being on the waiting list has its moments. I find that my coping mechanism has been to instead focus more on living life moments to the point that I forget being on the waiting list at times. I’m not necessarily eager for a transplant as everything has been going well with the LVAD. But lately, I have been more often thinking about the possibilities of a new heart and life after a transplant. I consider the pros and cons of each of them. It’s a back-and-forth thing where I am delighted with the LVAD; the team is excellent, but I have to think about the limitations. At the same time, a heart transplant is not a cure in itself. Then I have to think of the impact and implications on my health and, more importantly, my family.

Despite a couple of challenging moments last year, I have been well.

Despite a couple of challenging moments last year, I have been well; I had three hospitalizations between June and September of last year for multiple reasons, including an infection at my driveline exit site, passing out twice, and being anemic (because I had been losing blood due to hemorrhoids and AVMs or malformed veins in my duodenum, and an anaphylactic reaction to an iron IV. Thankfully, on each of those occasions, my team and I caught them on time and treated them effectively. As a result, I made a ‘full recovery’ and got back to it.

This month, my medical team is revisiting our roadmap to the transplant. I am going through a series of tests (including liver, kidneys, or the head) at the hospital. Thankfully, all the results have come back positive. My team is considering listing me for a heart and kidney transplant. I currently have several significant cysts in my kidneys.

Thankfully, my kidneys have been working fine. But the kidneys are expected to be under extreme pressure because of the medications after the transplant to the point that they may fail. So, replacing one of the kidneys while doing the heart would better my chance of recovery and long-term quality of life. This is all in progress, but I’ll keep you all informed.

About Heart of a Giant Foundation

On the Foundation/non-profit side, I’d like to thank all of you for your generous support, for buying the t-shirts, donations, advice, and love. Your investment into the cause goes a long way. So, today, I want to share a few notes about what you have allowed us to accomplish.

Thanks to your generous support last December and grants from the AHA (from both the National and M.A. branches), BCBS MA Foundation, CVS Health, and Walmart, and after much planning and laying the groundwork for our community health programs, the infrastructure is ready from both a system and a staffing point of view.

Our primary focus had been building our team, operational readiness, and community partner network. While we designed and launched our services, we chose to first built robust systems and operations to give our impact trajectory a solid foundation to benefit the maximum of people in and around our community.

Click here to check our latest updates Here. And don’t forget to sign-up for news&updates about HGF.

We need your help, and if you can support us, please follow this donate link or contact us for alternative ways to send your contribution. We always welcome significant contributions, but even the smallest contribution you can make to our Hypertension Screening campaign this month will go a long way. Your donation will be used to empower adults in our community and improve their lives.

Thank you again for your love and continued support.

Bye for now!

Leave a Comment

Your email address will not be published. Required fields are marked *

We use cookies to improve our user experience. You can read more about our Cookie Policy in our Privacy Policy. Click here to read more.