2:11AM Conclusion

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 see. You see. Let’s see.

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.

 

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Speaking at a youth event in Torrence, CA

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Recording an episode of the So Sick podcast

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Killing time on the 4th floor awaiting the heart transplant call.

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1st walk post heart transplant  

Mike Cohen
Bittersweet

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.

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Being wheeled to the O/R night of my transplant. 

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My family seeing me off to surgery.

Walking out of my discharge  

Walking out of my discharge  

Mike Cohen
Next Three Days...

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.

 

 

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sitting up first time after surgery...

Mike Cohen
Mini War

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?

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doing whatever I can to get these lungs strong AF.

Mike Cohen
Birthday Hangover

Just finished my go-to daily breakfast of blueberry pancakes and turkey sausage. For breakfast dessert, I had a couple pieces of chocolate chip cookie cake from my birthday party yesterday. As I’m enjoying the second slice of cookie, I look around the room and it is pretty stocked with remnants of birthday celebrating. I smile. I just remember how hard I was laughing playing Mario Kart and Goldeneye with a couple of my best friends. I am definitely in the beginning of a birthday hangover.

I enjoy this breakfast thoroughly, knowing that it may be my last before my heart comes. Or it may be the last before I get discharged, and likely never have this same breakfast again. I mean I’ve had it pretty much every day that I’ve been admitted to the hospital. You should be able to see why I would never want to have it again, if I am able to cook my own breakfast, once I get home.

I disconnect from the wall power and connect to batteries. I put both batteries in my Herschel dob kit, which has acted as my new battery holder, for as long as I’ve been in the hospital for this stay. At some point it should return to its initial intended job of holding toiletries and my toothbrush. As of the moment it is just another momentary glimpse of some what of a normal life.

I slip on the new Ugg slippers that Missy got for my birthday, and smile. She has amazing taste in slippers. I put my AirPods on (one less cord) and turn Spotify onto my favorite playlist. Consisting of Explosions in the sky and The Mattson 2, to name a few. I walk out of my room and close the door behind me.

As I walk I am walking past the first nurse station on my right, I say hi to whoever is sitting there. I just walk. Sometimes as I walk, the doors of other patients’ rooms are open. I try not to peek inside. Sometimes I can see that these patients are really struggling. The faces are just blank. They have a bunch of tubes and cords connected and definitely void of inspiration, of happiness. I truly find myself wanting to walk in the room and sit down with them.

I stop myself because I am extremely concerned with getting sick right now, especially being on the heart transplant list in the highest position. I don’t want to do anything to jeopardize receiving that call, if I contact an illness or a flu.

I smile. I try to make eye contact. I hope with them seeing me walk around the floor, they are inspired or motivated to walk whenever they can.

I continue walking. I see all of these very sick, in bad situation patients and I just can’t stop being grateful for how healthy I am. Some of you may read that and think I’m crazy to say that. I am actually healthy. My heart is the only part of my body that has failed and is not in good condition. If it wasn’t for me having 2.5 years of chemo, years and years ago, I would’ve never had all of these heart issues. I constantly recognize this gift and live with constant positivity. Constant gratification. Constant inspiration and motivation. Just because my heart has failed doesn’t mean the rest of me has. Whenever I get the heart, I will recognize my second chance at life and just live exactly how I do now.

The most constant concept that I think about in my head, that keeps me grounded and fighting for this life and those in my life is, that it could be worse.

Takes the Cake

I’ve been through a good amount of shit in my life. I’ve started death in the face a few times. I’ve had a significant amount of uncertainties. I am officially ranking this current experience as the hardest I’ve ever felt. The most powerLESS. The least amount of control I’ve never had. I mean chemo is pretty fucking bad. The worst in regards of treatments, or in the idea of a solution, it is absolute torture. However, that came with a schedule. I knew when it would be, I knew how long it would be for and when it would be finished. If I survived each and every day of chemo, that was my way of measuring time. Having the heart attack, was sudden and out of nowhere. The time frame of that process was quick. If medication didn’t work, we need to implant the LVAD and remove that massive clot from your heart. Friday would be the day of surgery to get the LVAD. 

This current process of staying in the hospital and being on the heart transplant list in my current condition, is fucked. As I’ve already expressed, my heart already drops whenever the door opens for the last 28 days. They transferred me here to UCSD to treat my high LDH level (the clot in the pump) and eventually receive the heart transplant. Having the complications of my heart pump, allowed them to list me on the heart transplant list as a 1-A for 30 days. Now my LDH level is constantly decreasing, and my condition is constantly improving , means that the clot that has been in my heart pump, is almost gone. This also acts as a double edged sword. With my condition improving and the clot dissolving, I will lose my 1-A level once the 30 days is up (in 4 days). So pretty much if I don’t get a heart in the next few days, it could be a much longer while until I receive one. The constant mind fucks that I’ve experienced in the past 28 days have been unbelievable. I am over them. I am literally to the point of not knowing what I would prefer; receiving the new heart in the next few days, or be discharged and then wait at home for that call. My brain is fried. I am done thinking. Oh yeah and my 33rd birthday is  February 21st, what do I want to do? HA!

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Mike Cohenfrustration, heart, patience
Only took me 4 weeks...

I always walk to the area where I can look outside to the world that I am currently not a part of. I will be, but not right now. It only took me 4 weeks to realize that:

This place is so familiar. Their faces are familiar. I have become a prisoner because of my health. Yet this is probably the best thing that ever happened to me. I’ve lived a lot of my life in a hospital. More recently than ever before. Now I am presently in the best condition than I ever have before, compared to the other hospital stays.

I’ve never been healthy enough during my previous visits, to be able to freely walk around the floors whenever I wanted, unsupervised. The position where I sit in the waiting area, allows me to just people watch. Observe others in their life and just allows me to recognize my opportunity to truly and genuinely focus on myself and preparing myself for this life change. This wait and this time is more than opportune. It’s just. It’s exactly the way it’s supposed to be.

I may not be where I want to be but I currently have time to just focus on myself. To be me. To be constantly pursuing a direction of forward. Pursuing health. Pursuing freedom.

Here's some wisdom that I've learned from today's walk some thoughts that have helped me get to this conclusion, I am grateful to share with you. I hope you find something to apply to your own life:

Throw out your map. Ignore & forget the way you had envisioned your path, your relationship, your career, your life, etc. Life happens, whether you want it to or not.

Let go of your desire to control. The more control you crave, the less you actually have. Focus on controlling your mindset. You dictate whether or not something affects you. You are in charge of having a short fuse. The more negative you are, the more negativity you attract. The more positive you are, the more positivity you attract. 

You can do it. Whatever it is. Focus on what you can do rather than what you can't. Focus on what you have, rather than what you don't have. Make today the best you can. You deserve it.

 

Currently listening to: The Mattson 2 - Pleasure Point

 

 

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Mike CohenPositivity, life, self-help