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
False Alarm

Last night, out of nowhere my evening nurse came in with a "hat". For those of you not versed in what a "hat" is, it's used to take a stool sample. The second she walked in, my intuition was a bit heightened. Why would they need a stool sample? I've been here for almost three full weeks and they haven't had any need for this test before. My doctors told us that a good sign of a possible transplant match, is when more tests or different tests would be performed.

 A couple minutes before during my walk, I noticed the surgeon who is the person who would be performing my heart transplant, was standing around the nurses' station. I've gone for a good amount of walks and definitely am able to recognize the staff on this floor. With all of these odd, definitely random things happening, I thought that tonight could've been the night. 

It wasn't. I never got any calls. No-one woke me up to bring me down to the operating room. Slept relatively well. Definitely a false alarm. 

Currently listening to: 

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Taken on my evening stroll around the 4th floor. 

Mike Cohen
Satisfactory Heart

It is 18 days since I was transferred to UCSD Sulpizio Cardiovascular Center. Every morning about 9am, I receive a visit from my cardiologist. This past Friday, he came by and told me they received an offer for a heart for me. They said it was a satisfactory heart. It wasn't to the quality and condition they are looking for. They passed. 

It is ABSOLUTELY CRAZY to me, that my life has gotten to this point. I went from finally getting used to the LVAD and the insanity of being connected to a constant power source and walking around with a cord, to being admitted for over two weeks awaiting a new heart. 

Damn the times have changed just a bit. I had a few tough days last week. I spent a few days very quiet. Staying in my head, wondering why I am here. Sad, that I am still here. I am a stubborn man. I know this. I am here because I have a blood clot in my heart pump. The medication that I need to constantly be on, is only available in IV drip and I am at risk for a stroke if I am not at a level to come off of that medication. 

Physically, I am walking constantly. I have no issues getting in and out of bed. I am using the restroom without help. Missy brought my LVAD shower gear and the other day, I had a shower. Showers, are absolutely amazing. They can be a frustrating procedure, but they are such a pleasure. I have them about 1x a week. I am grateful to have those couple minutes to myself and just enjoy. (See below for shower clips).

Mentally, I am great. I am overall, feeling great. I have been doing my best to prepare myself mentally for this surgery. There is no schedule. No set date. No prep. It can happen at ANY minute. I can be on my daily walk and the doctors come up to bring me to the operating room. I try not to do too much planning. This is my new routine. This is my new life.

It's Monday, be grateful for your Monday. You are subconsciously experiencing your day. You are in your routine. It is so crazy how it can all change without your consent. Enjoy.

Currently Listening to: Explosions in the Sky - Warrior

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Morning After

Morning after finding out the news about being listed for a heart. I am still in shock. I am not emotional. I am focused. I am focused on doing everything I can with the previous experience with cancer treatments, open heart surgery recovery, and LVAD instructions, to absolutely crush this upcoming recovery. I have always been completely in alignment with my doctors and physicians throughout all of my medical experiences. I have been “seasoned” for this. I plan on with this absolutely incredible, eventual second gift of life, take my living, my mindset, my strength to a higher level. I finally will be wireless again. The leash is off, just watch and see what I will accomplish.

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on phone with Dr Urey (lead cardiologist) receiving the news about being listed. 

Mike Cohen
Dear Heart,

Dear Heart,

I am writing this to you as I am in the process of being prepared to have you replaced. I cannot even begin to describe or explain how difficult it is to put this into words, but I will do the best that I am able to do. Our time together is unbelievably coming to an end. You were beaten and abused to the point of no return. Being in relationships and various life experiences that broke you, countless amount of times. Experiencing growth that really stretched you, I did my best to not let it completely break you. Some people’s hearts never recover from those serious life events. Not you. Then cancer came at 18. The chemo drugs were just too much. You failed then but yet were still strong enough to keep me going. You gave me the chance, to pursue some crazy shit. You spoke to me and I followed your advice and completely relocated out to San Diego. After getting the rest of my body recovered and strong enough to pursue “cardio” based physical activity, I completed several running events without missing a single beat. Not long after you also gave me the chance to cross a major item off of my bucket list. You became strong enough to allow me to ride a road bike across the United States. I’m not sure if that was too much for you, but it was absolutely unreal. After the ride, I really became completely focused on letting your voice be heard. I realized that what you and I have been through, was really important for other people to hear. For others to see how strong you have been through all of my life, up until that point. It seemed fitting, that right around that point, was when I met Missy. She had a heart that was able to completely communicate with you. The love that her heart has given to me is almost as amazing as yours. It seemed that I was actually making some significant progress with getting both of our voices heard, you were pushed to a point where you couldn’t recover. We were seriously attacked. Those chemo drugs were significantly more powerful than we both anticipated. The clot that formed in your left ventricle was way too big. I get it. There was just so much that you were able to do about it. They tried to fix you with some powerful medications and it just didn’t work. Then they installed the pump that was supposed to help you do your job. You did a great job with the help. It just wasn’t enough. You’ve been through so much, it’s time to let you rest in love, in peace. It’s time for me to get a stronger heart. It’s the only way I can continue living. It’s not fair to have you go through more stress and chemicals. I want to thank you. Thank you for giving me the opportunity to live an absolutely crazy, inspiring, powerful life for the last 32 years. You have been able to create so much love from others, love for others, strength in every aspect of life and just the amazing ability to open my eyes and absorb what this world has to offer. You have given me so much to be proud of and to share with the world. Your voice will be heard, your strength will be recognized. You will not be forgotten. Love is not the word, to describe my feeling for you, it’s life. I’m not giving up on you, as you know I’ve never given up on anything.  If I had a choice, you would be with me until the end, I’m just not ready to have that end be at 32 years. I have so much more to do.

 

Your partner in crime, 

Michael David Cohen
Mike Cohen
Mikey New York
Mikey Baby

Mike Cohen
Not in Good Timing

I am sitting in the hospital waiting room waiting to be admitted. This is definitely significantly different from the last time I was admitted. There’s no drama. If anything I feel like I’m in an airport waiting for a flight. I’m looking for an outlet to charge my phone, getting ready for a long trip. The waiting room is empty, I am alone waiting for Missy to come meet me. Once she gets here, we’re going to go upstairs and get admitted to the 7th floor. I have tears in my eyes but not the front, the back. They’re ready to fall but they’re not. I’m not scared. I’m more frustrated. I have so much I want to do. My book is not done yet. My speaking career has not launched yet. This is definitely not in good timing.

 

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Mike Cohen
12 Years Cancer Free

I am sitting here at night doing my usual writing. Dialing in my podcast, refining my inspirational speeches and I glanced at the calendar on my laptop. It hit me that tomorrow is a pretty special day. It is my 12th year free of cancer. I usually celebrate with a bunch of friends, have a few drinks and such. This year is different. It's a bit bittersweet. Reality hits, and it hits hard. I would normally be grateful for how amazing I was feeling, and how healthy my life has been. Once I had the heart attack, honestly, I didn't know I would get to the point of celebrating. I didn't know how/if my life would ever be the same again. Now that I'm almost six months out from the LVAD being put in my heart, I have MUCH to celebrate. I have a different, AMAZING life. I am living. I am thriving. I am doing the best I can, to get my health back. I have much more to accomplish with my health and the direction of my life. I have the most amazing girlfriend, family/friends, anyone can ask for. I have SO much to work for, so much to live for. 

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Failed Heart

Today's walk started off as any other walk. Same routine. Parked at Kate Sessions, facing downtown. I headed to the left from my Jeep and started my walk along the cement path around the park. I really wasn't feeling my battery vest, so I decided to hold both of my batteries in my hand and carry my Hydroflask in the other hand. When I got to the point in my walk, where the steep incline started. I was really struggling. I made it, but I had to sit down to catch my breath. It was just a very real, realization that I do have a weakened heart, that has had failure on 2 separate occasions. This has taught me to not push too hard. Scale back the intensity and take my time. I am not training. I am not preparing for anything competitive. If anything I'm preparing for another open heart surgery to replace this weakened heart. So much remains of my old, training mindset tendencies. Slow down Mike, it's okay. 

 

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out of breath.. 

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Handheld.. 

Mike Cohen
Like a Tree

Every time we pass by a tree in our daily lives, how often do we think about the process it took to get to that size? Never. Maybe a few tree huggers here and there but most of us do not even consider this thought. Most of the trees around us are really, really old. On my walk today around the park, I noticed there was a new tree planted. It was a cutie. It definitely had a good start to it's growth but it was definitely a baby. I stopped and stared at the tree for a couple minutes. I took a few photos and said outlaid, " That tree is me." No I am not a tree. I feel like my life is in the same growth process of that tree. Slow and steady. I am constantly recovering, and constantly changing, but I am growing and progressing in the same forward direction... up. 

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That’s me

Imagine
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Imagine if you have spent a large part of your life feeling confused, mislead and just plain lost with the intent on finding your direction. During that time you are constantly desperate, constantly seeking validation & consistently seeking recognition for your efforts. Imagine if you have ventured out into various different areas of your career, pursuing your interests, working multiple jobs at a time and still coming home at the end of your 15 hour day, to focus on projects that might never ever come to fruition. Yet you stayed focused. You stayed positive. You saw your vision. You believed in your vision. You never ever even considered the idea of giving up. It eventually took a heart attack & open heart surgery to allow you to recognize, that each and everyone of those efforts were never futile. Each and everyone one of your adversities ended up strengthening you beyond your wildest comprehension. Every failed attempt at a friendship, relationship, career or intention was actually just a unexpected lesson you subconsciously learned. If all along that all of your physical & mental pain, uncertainty would all add up to being your life’s work, would you be okay with that? Obviously this is my life. My answer to that question is yes. There is much left to this story. Much more pain and uncertainty that I know is ahead of me, which means I have much more work to do. I love this life. I love this path. My path from the second I was born was to inspire, motivate and get the most out of life. This year has definitely shown me what I am capable of. Cannot wait for 2018. I hope nothing but the best for all of you to live your best life. We all deserve endless health and happiness. 

Mike Cohen