Hey!
This is a little bit of a different newsletter than usual…
Yesterday I traveled to the USA’s, if not, the world’s best hospital/clinic for my specific heart disease, ARVC.
For those of you who are unaware, last march I collapsed on the soccer field into a cardiac arrest, and it is a miracle I am alive. Later that year in October it happened again, however, I was saved my internal cardiac device.
This video sums it up if you are interested in the “full” story — I put “full” in quotes because it was full from that current point, but there’s been developments since then.. Anyways…
In this newsletter I just want to share a couple things and results from my visit.
1⃣I am going on a different medication that is best for my condition, and the cardiologist strongly recommended that I be monitored in the hospital for 3 days to transfer from the medicine I'm on now to the new one because the transition CAN cause shocks in my cardiac device. this will likely be in a few weeks/months depending on when they can get me in the hospital (given it’s non emergent).
2⃣There is a gene therapy in clinical trials that I will be on the list for. It could be rolled out in 6 months or 2 years, or longer (the Doctor doesn’t even know yet) they've seen signs that it can slow the disease progress, however, it'd come with some risky side effects and a serious commitment to be a part of. So that’s potentially down the line. As of now, there are no "cures" or ways to heal the disease. The Dr. (Who is the USA's, if not, the world's leading Dr. for my specific condition anticipates not having anything like that for another 15-20 years.) It also would affect my wife and I's ability to conceive.
3⃣Doc says on a scale of 1-10, I am at about a 5 for progression of the damage. But he also said it didn’t seem that there was any further progression in the last 10 months since the first cardiac arrest, which is great news!
4⃣He reiterated that I can't participate in competitive sports, but he said to keep exercise to a level where I don't get short of breath and can hold a conversation with someone else. which again, discouraging, but I felt this was more clear of a boundary, which is helpful. But this will likely be the case for the rest of his life.
5⃣We learned a lot more about the disease, and why certain meds are better than others, and what the disease actually does. It's quite complex.. but very interesting. For example, almost all shocks happen during the "cool down" period during exercise. But they could happen at any point. When PKP2 (The gene I am missing) and is mutated: Heart cells lose their grip on each other and with stress (exercise, adrenaline, time): Cells get damaged, Cells die, and the body replaces those dead cells with scar tissue which are effectively useless. Essentially, I am missing the "glue" that keeps cells in my heart together. So, over time, my heart could get progressively weaker and weaker and can be accelerated by physical activity, or in situations where my heart beats fast, can lead to arrythmias, which, put my body into cardiac arrest in which I would die unless my device goes off and shocks me out of that rhythm. Thankfully, only really my right ventricle is affected by the scar tissue, but if it spreads to the left ventricle, that's when things would be very very bad. So really, all we have are "band-aids" for this disease. No "fixes" or "cures."
6⃣I'm also showing signs of having scar tissue on the underside of the ventricles which isn’t necessarily good and we don’t want that to progress, but also it wasn’t any sort of emergency, just an a-typical spread of the scar tissue.
7⃣My wife and I left feeling kind of somber as these kinds of appointments are just a reminder of the harsh reality of this condition. But we want to focus on the positives because there are so many - more positives than negatives honestly! But it’s been a hard evening of just feeling sad and discouraged that this is even happening in the first place. But God gives us hope and joy and peace, and in the perspective of Eternity, this is a small moment in time that God is asking us to bear this cross, and we will gladly, say Yes! The suffering of this present time is not worth to be compared to the glory to be revealed to us in Christ Jesus (Rom 8:18) Paul asked the thorn in the flesh to be removed from him 3 times, God said no, and told Paul that his grace is sufficient, and where he is weak, God is strong. So if there is no healing of my heart, either via the advancement of medicine, or God supernaturally healing it, I can rest assured knowing that where I am weak, God is strong.
So, there’s still a lot of unknowns and that can bring a lot of uncertainty, but it won’t stop me from continuing on this journey God has for me.
Talk soon,
-Nils