LVAD On, heart anatomy, surgery chest scar
In October, I celebrated my second year on the waiting list for a heart transplant. What a journey it has been! Yet, so much more to come.
Though, I have been quiet on the blog, past few months have been truly eventful, to say the least. It started with the Lions de la Teranga (of Senegal) making us proud at the 2018 FIFA World Cup in Russia in Juin/Juin. Then, our twin boys were born mid-July.
Supporting Senegal during the 2018 FIFA World Cup
The month of August would never be the same for me. This year has simply been awful, we’ve had to say goodbye to more than a few inspiring and prominent personalities. Then in the month of August alone, I’ve lost at least 6 people who were family or close friends.
Living with my illness, the idea of death and how to cope are often visited. But, this has been a very tough time. Despite my familiarly with the subject of death and the mourning process, I’m still struggling to come to terms with their passing. To make matters worse, I missed a few of my (monthly) psychotherapy sessions.
In addition, August was particularly hard because my mom was hospitalized back home. Painfully, I had to witness her struggles from afar. Being on the heart transplant list and living with the LVAD pump make it hard to travel, especially long flight over the Atlantic Ocean.
My mom has been dealing with her own chronic illness for over 30 years. She is the toughest person I know. As always, she remains inexplicably very gracious, lucid and serene, dealing with her struggles. So, I was not too worried. Even so, it hurts not being able to be there for her, in person. Luckily, she has been on the mends since and she should be back to work soon. We are thankful!
LVAD Clinic visit and Heart transplant evaluation
Following these recent episodes, I had to take a break, take time to regroup and to reflect. I have made some changes, primarily to how I manage my time and being more patient with my life. It’s been a few weeks now, and I feel confident that I would continue to manage. Fortunately, October (my birth month) was just around the corner. The month of the balance, where everything comes back to equilibrium.
I celebrated my birthday on October 13. This same day now marks my anniversary on the waiting list for a heart transplant, at the Brigham and Women’s Hospital in Boston.
I recently went for my re-evaluation in order to remain on the list. Luckily, so far, I have managed to maintain my weight, being compliant whilst enjoying a positive experience and good medical outcomes. The review by my medical team was much shorter (half a day instead of five days two years ago). On the day, I met with the nutritionist, the pharmacist, the social work and the financial coordinator. I also had some blood work drawn.
When living with my condition, the margin for error is very small. Hence, I appreciate this milestone more. I feel very fortunate. I will continue to prepare myself physically, mentally and spiritually for the next phases of this journey.
With regards to life, the attitude remains the same: Ça Va Aller (and *Carpe Dieme).
Although patience is often a challenge, the journey continues. Thankfully, I’ve been doing pretty ok at being patient, some days are tough to deal with, some are tough to forget and others tough to accept. In any case, I’ll strive to pursue living with courage, grace and character.
Our surreal life goes on and we’re making the best of it - loving our life in joy and happiness.
* Carpe Diem
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