COVID from my experiences

[TW: Death.. Mild graphic details of near death, life support, ventilator… my writing, grammar, experiences and opinions] We could be entering into another situation like March 2020, or even the end of 2020. Watch to the end!! I almost gave up half way through, but it gets more and more apparent this is a terrible situation. (Also I will tie this post to my own personal experiences by the end) With numerous games and teams from the NFL, NHL, NCAA dealing with some having 20+ people testing positive. Canada is probably going to trigger a level that forces 50% capacities.…

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So I fell behind…

This week I am preparing to make my way back to Florida. My last appointment that I’m required to be here for is scheduled for tomorrow (Wednesday September 23rd). I have had the plan made for a couple of months that I would drive home, avoiding being cooped up in an airplane with potential carriers of COVID-19. After discussing plans with my doctors for returning for future check-ups it occurred to me that I could wear an N95 mask, with a surgical mask over it, which was an idea given to me by some people at Cedars. Over the past…

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The Long Overdue Update

Overdue is an understatement for this update. I can't believe after months of trying to get this site back up, I am finally writing. There were plenty of times I was ready to give up and go through the process of starting a new one. Now for the update: If your only exposure to my life has been reading my posts on here, you are in for a big surprise. I've received a "replacement transplant" on June 22nd, 2020 at Cedars-Sinai Hospital in Los Angeles, CA. This latest chapter started on May 11th, I had not slept well in a…

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Delayed update

Last weekend I ended up in the emergency room. Saturday I started to get a headache but it wasn't out of the ordinary, I have a history of migraines as a side effect of Tacrolimus (one of my anti-rejection medications). Headaches are one of the most common side-effects and according to one neurologist I spoke with could be in the 60% range if people who take the drug. Since 2017 I have been receiving Botox for this reason and have been maintaining the headaches well. When I woke up Sunday morning, the headache had intensified, but still wasn't the worst…

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Another Wasted Weekend (And Not the Fun Kind)

There are a lot better posts that I would like to be making, but this is the reality. I am writing this from the hospital. At this point it seems to be only for an infection, parainfluenza type 3, which contrary to its name is not influenza, but basically a cold. In some cases, especially people with suppressed immune systems this virus leads to pneumonia, which I developed in my right lung. Friday's sunrise from my hospital window In hindsight, my first symptoms were probably middle to late last week. Whenever anything is starting to go wrong with my health…

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That moment when your life changes forever

Today is May 7th. A day that would not stand out for most people, including me if it wasn't for Facebook's memories feature reminding me of the posts informing the world that today, four years ago, my life would forever change in a way that no one should ever have to go through. I would never wish this life on my worst enemy, but it is the life that I have now. And as anyone would do, I make the best of what I have left. If even one other individual can be inspired to go to the doctor, be…

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I Think a Change Would Do Us Good

Change seems to be the theme this week, and for the most part, that is a good thing. The biggest news is that, for multiple reasons, I will be changing to a different primary transplant cardiologist within the same team in Florida. My current primary cardiologist is leaving later this year, and if I had known that, for sure, before approaching him with my concerns, I might have slept a little easier leading up to that conversation. Either way, I needed to express my concerns, and I am switching sooner rather than later. The main concern from my perspective as…

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Rejected

Friday afternoon I received the call from Cedars-Sinai Hospital. As the title of this blog states, they did reject me, but it's for a big reason that is better than I was hoping. The team has reasons to believe at this point that my heart is still recovering. So as of now, they are working with my transplant team here, in Florida, on further testing. Right now they are ordering a cardiac MRI. This will show how much fibrosis, or scarring, is present on the heart. Hopefully, the rejection has not left too much scar tissue, we will pursue recovery…

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Decision Day

Today is decision day for Cedars-Sinai's selection committee, and I am still deciding how to feel about them deciding. My large part of my personality wants them to have the decision a week away, always. This transplant listing is the fourth time that I have gone through an evaluation and waited on a call with the decision. I can say, it's just different every time, never really easier or more difficult overall. The first time was within weeks of when I first found out I had a heart condition. I was in Utah and denial of the severity of the…

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