Coming home from training (cardiac rehab - which is pretty much all of my outdoor activities), I was greeted by my hairy little son, Lincoln. He immediately makes me smile, and speak in a voice that is only reserved for puppies and small children. I am going to start making sure I greet people that are coming into my home, the same way... check it out:
I have worked out every single day of this week. I’ve been going to cardiac rehab (where they monitor my every move and heart beat during any level of exercise) 3x a week. I am feeling incredible. My heart is fully happy and loving it’s new home. I am hopefully making James proud, how I am treating his heart and constantly doing whatever I can to get stronger and healthier. Here’s a few photos from the last few days.
After a great workout at cardiac rehab - 11/7
It has been a LONG time since I have felt alone. I think it was when I first moved to Long Island, I was about 13 years old. I didn't know anyone. Whenever I wasn't hanging out with my younger brother, I was in my room writing. I think it could've been considered a "phase", I was going through.
A common phrase I have used and witnessed, is "You just don't understand!". I feel I've said it when I feel I was trying to communicate to either my family, friends, ex-girlfriends, ex-friends, etc, and they just weren't seeing my point of view. It was also my attempt to make myself the center of attention, doing what I could for people to either feel bad for me, or to come up or down to my level and try to "understand", for whatever I was trying to communicate.
I have spent much time over the years in my thoughts. For one, trying to process and understand why I was diagnosed with cancer at the age of eighteen years old. As well as experiencing the brutal side effects of chemotherapy, bone marrow biopsies, spinal taps, constant uncertainty and constant pain.
I feel I've become much more mature and much better with communication. Whether it was in the form of writing it down or speaking it out. In July, when I experienced the heart attack and the eventual open heart surgery to implant the LVAD, I didn't complain. I understood when they told me, the heart attack was caused by the two and half years of chemotherapy. It was a matter of when not if.
So when they told me about having to become listed for a heart transplant, I understood. This was all a part of the plan.
Now that I am over three months since my heart transplant, I barely understand the sacrifice for the donor as well as their family. To have received the letter from James' family, and to know James was in the Navy, this Memorial Day has been quite difficult.
Honestly, Memorial Day was mostly a three day weekend for me. It's now a day when there was more than one sacrifice by James. 1. Serving his country. 2. His unfortunate/untimely death, has allowed me to live.
I don't know how to put into words. I have deep, deep feelings about James' sacrifice. It's a painful gratefulness, it's a painful appreciation, and an extremely painful love. I find it extremely difficult to accept how much pain his family is in. His mom, his dad, his siblings, his fellow soldiers, his friends.
I have accepted, that I am fully lonely in my feelings and thoughts of where I am in life, and I am at peace with that realization. 92 days later, I have significantly improved in every way. Mainly because of the incredibly health heart that I received from James. I have lived a long time of my 33 years, unknowingly unhealthy and unknowingly, slowly dying. The rest of my body has fully accepted the organ and I have never felt as alive and healthy as I do right now.
It's pretty sad to read that.
Photography has become my new passion. It all start years and years ago via my Blackberry and eventually my iPhones. I loved having a good camera with me at all times, but I just never wanted to have to lug around a DSLR or a point and shoot. Unless I was on vacation or at a Yankees’ game, would I bring a camera with me. I would take photos in a way that would capture exactly what I was looking at. I wouldn’t edit them. I wouldn’t change them. I would just take them, so I could always have that moment with me.
Presently, I now seek out sunsets and any scenic landscape that I want to consistently be able to look at. See, when you spend as much time as I have in a hospital and recovering inside at home, you live and die with those photos of those beautiful sunsets or scenic point of views that you’ve randomly taken over the years.
I think that’s why I am so into photography now. I want to absorb all that’s around me at all times, visually. If I’m ever back in the hospital for any reason, I’d have tons of photos I could look at to take me back to the moment I shot them.
My intentions with photography is to shoot visuals that inspire and invoke emotion for anyone looking at them. To be able to bring these photos with them, whenever they need to momentarily escape, find some inspiration or find some level of grounding.
In the coming weeks, I am releasing a photo book, of my recent experience being admitted in the hospital, being treated for a blood clot in my LVAD heart pump and waiting for the heart transplant. I am excited to show you and invoke any questions or thoughts you that may come to mind. Anything I could do to educate, inform and inspire you, I will do.
I’ve come to the conclusion that, I may have to live with a bit of tightness in my chest area. Especially in the area of the sternum scars.
This is coming from my post LVAD open heart surgery, and noticing at the 8 weeks recovered then, I still have tightness in that area. Mostly when I stand up.
That’s ok. It’s part of who I am.
I love perspectives. I think it is one of the most influential aspect of our life. We all have them so why not share them? I seek every possible way to share perspectives: I'm an inspirational speaker, podcaster, blogger and now an amateur, enthusiastic photographer. At 33, life has thrown cancer, two heart failures and most recently a heart transplant at me. I have much more to experience and even more to share.
Speaking at a youth event in Torrence, CA
Recording an episode of the So Sick podcast
Killing time on the 4th floor awaiting the heart transplant call.
1st walk post heart transplant
I've been home for a week and a half at this point. I've had two very successful clinic appointments with my heart transplant team. I've had two blood draw appointments and they were able to find a vein both on the first attempt. Score.
I sleep for 3+ hours for naps and up to 11 hours IN MY OWN BED. I shower without a half hour LVAD shower bag prep. My strength is gradually coming back. Every single day I feel better. I wear clothes that I choose and they don't have my ass cheeks peeking out of a very uncomfortable green robe. I lay in my bed just staring at my windows. Sometimes waiting for my brother or Missy to come in to bring in the 1st of 2 massive piles of pills. I welcome the interruption.
It's quiet in our bedroom. I slow down my breath so I could try to hear my heart beat. I put my hand over my heart and I feel it. I hear it. I actually feel it. It's the first times in close to 15 years that I had a healthy enough heart that, I would be able to feel it pump as hard as it's been pumping.
I keep my hand over my heart and I just think about who's heart it is. Who's "Mikey Baby", passed abruptly, way too early. Who's older brother/sister, made a wrong turn. Who's son/daughter got injured badly enough to be so amazingly selfless to donate their HEART to me.
I am counting down the days until 6 months, where I am trying to figure out the words to place into a letter to thank their family, for giving me a chance to continuing living. Continue with my dream and hopefully theirs. I will die with this heart. But forever it will be bittersweet.
Being wheeled to the O/R night of my transplant.
My family seeing me off to surgery.
So at 2pm today, they will be performing another right heart catheter to confirm the pressure levels in my heart and simultaneously install a port in my neck for blood draws and a more stable IV spot (no more peripheral draws - physical pokes or needles 👍).
Tomorrow morning is when they will start my immunotherapy (very very mild form of chemo (not the same intensity as cancer chemo - thank god), which is where they start me off in ICU for the first of three dosages/days (takes 12 hours each) . Then if I’m doing well, I will be able to return to the 4th floor and continue recovering from these therapies and my focus on being able to be discharged as soon as possible.
The reason this all happened in the first place was that I was doing so well post op, that when I had the infection from the surgery, they had to treat the infection so it didn’t spread. With my immunity where it is, they can’t mess around with any infection spreading.
I am completely optimistic in the next 3 days, I will be back on the 4th floor ASAP and will absolutely crush this process. It’s time for me to fully immerse my mindset that my health is literally the most important and highest priority in my life. My fun and ability to return to “life”, comes after my health is able to be consistent and in an positive trending direction. I have a new heart. A new chance to live. I won’t let an extra week in the hands and care of some of the best doctors in the world, discourage me and separate me from my biggest goals and my life’s dreams. Day by day.
sitting up first time after surgery...
My body is officially at a mini war with my new heart. With the blood infection that they found in my body post operation, they had to be cautious with treating the infection, since I already had a lowered/suppressed immune system (due to the anti rejection medications) and did what they can to prevent it from spreading further throughout my body.
Fast forward to yesterday’s right heart catheterization & heart biopsy, they found that my heart is a bit thick (a bit too much fluid) and on the biopsy showed that there is a bit of mild rejection. So they have to reset my immune system. They have to wait for the infection that came back, to disappear completely and start me on induction. Which is a very very slight form of chemotherapy that takes 3 days to complete to get me where they can give me the anti rejection medications without having to fight the blood infection as well.
So another 1-2 weeks here. It’s a major bummer. MAJOR. I received my medication training from the post transplant nurses and coordinators, it all seemed like the next step was just to get the catheterization and biopsy. I’ve had plenty of setbacks in my professional patient career, and so this comes as zero surprise. I’ve just been in the hospital for the past 6+ weeks and I am beyond overdue to enjoy a night of sleep in my bed and feel some what “normal”. I’ve officially been out of the hospital for a total of 50 minutes the past 6 weeks. I feel caged and just completely powerless. Which in reality, I am powerless. Just wearing out my patience and sanity. The good news is, I still have pretty decent WifI, good drugs for the pain and a chance to see what I look like with a semi full head of hair.
I may just write another manuscript while in here, why not eh?
doing whatever I can to get these lungs strong AF.