Last year, we posted an article regarding one of our dearest friends: Kai, who many of you know from the LPU, was diagnosed with a life-threatening disease. He had to undergo an extremely dangerous surgery and we wanted you guys to leave a positive message for him on our website. Many of you complied and Kai now – exactly one year after his surgery – wants to thank you all with the letter below:
“Dear LPUers, LP-fans and everyone else,
my name is Kai, 29 years old, from Germany. Some of you might know me as „RandomHybrid“ from the LPU, of which I am a member since 2012. Throughout the years I have met a lot of you guys at various LP- or LPU-related events, such as concerts, LPU meet ups or the LPU summit in Amsterdam in November 2014.
Being a member of the LPU really enriched my life considerably. Not only that I got to meet my very favorite band, but especially because I made new (also best) friends and even met the best person on this planet through this community, the person that I now call my wonderful girlfriend Raissa for almost 2 years now.
For all those experiences and new friendships plus my relationship I can actually already never be thankful enough. And I am looking forward to more moments and experiences likes these to come!
The reason why I write this post for LPFC has a completely different purpose though. Or, lets say, one purpose with a few small, yet important messages. Messages for everybody, not only LP/U. Some of you might remember an LPFC-post from last years June, about my open heart surgery. Yes, it really happened and I survived. I write this post to tell the whole story behind it, not to put myself in the spotlight. If you read the story you will understand why. You will realize that nothing happens by coincidence or accident. Every small thing has a reason. Whether you’re religious or not, believe in anything else or not… Some happening are just too much to be just coincidence. I wanna tell you the whole story of my disease/surgery, how I deal with it, how I feel today, how I have to live with it in the future and how it made me think about things in life. If you are open to those kind of stories and the messages behind them, then take some time to read the following text. Otherwise, no one will blame you if you just close this window.
I always considered myself to be a happy and healthy person. I have a good and well-paid job, I play in a very cool rock band, I have friends and a good relation to my family, I have a perfectly working relationship with my girlfriend, just to name a couple of things that I have in my life. Besides that, I do sports 3 times a week, I don’t smoke, I have no overweight and my nutrition is mostly balanced. I never had any kind of complaints or pain. I do runs for miles and always felt fit without any problems at all.
In spite of all that, in the beginning of last year, I „randomly“ decided to do a general health check at my GP (the „family doctor“). I took this step because firstly you more and more hear those sad stories from friends or colleagues, like „My god, my acquaintance suddenly got a heart attack“ or „The wife of my friend got a stroke, even though she always lived healthy“. Also in the beginning of last year a famous German politician, Guido Westerwelle, died from leukemia which was diagnosed occasionally (!) after he had a small accident while running. Besides that, my father has hypertension (high blood pressure) and my mother died from cancer 12 years ago. So, even though I felt healthy and fit, without any problems… Why not doing a health check, just to make sure?
Of course my GP looked at me like „What the hell do you want from me? You are young and healthy“, which I can understand. But still he was willing to do it and even made my insurance to pay for it. Blood tests, ultrasound scan, ECG… They all had good results. He said I really was in a great condition, as expected. He only heard „a veeeery small cardiac murmur“, a very small heart noise, „but it won’t be a big deal, since it’s only really small. And this can be normal for someone who is doing sports or just had a cold. So don’t worry. But still, here is the referral to the cardiologist. Let it get checked by an expert, just to make sure“. A word and a blow. I arranged the appointment at the cardiologist, which was 3 months later! One weird thing about the German health system is that even if you have a referral from your GP, you have to wait months before you get the check at the specialist. Because what happened to me and what also happens to other people, sometimes even worse things, is so serious that it’s actually irresponsible from the system to let the people wait for so long, even if the referral isn’t considered as an emergency.
Anyway, I went to the cardiologist on the 20th of June 2016. While he was checking my heart with his ultrasound machine, my head was already outside of his office. Thinking of what I could do with the rest of the day. He did his work quietly and ordinary, then he told me we were done and I could just put on my shirt again and sit down. While he was writing down some small things I expected him to say something like „You’re fine, have a nice day“. What he really said was „Sir, you have a problem…“.
The diagnose read as follows: „Thoracic aortic aneurysm by bicuspid aortic valve, with aortic insufficiency“. Yes, I didn’t understand a thing either. But after he explained it to me, I realized it was very serious. Basically it means that I had two problematic areas concerning my heart. The aortic insufficiency means that my heart valve was damaged or „worn out“, due to the fact I was apparently born with the bicuspid aortic valve instead of a tricuspid one. So, the valve didn’t close properly anymore, so more blood came back to the heart which needed to be pumped out again. Simply speaking it means that my heart had more work to do than usual. This is something people can still live with a long time though. But at some point it definitely has to be fixed. Usually people feel problems in the age around 50, so probably in around 20 years I would have gone to the doctor anyway, because then I would feel something was wrong. So, it’s bad but not life-threatening in the first place. What was life-threatening for me though was the aneurysm. Having an aneurysm means that the aorta or vein is more or less „bloated“. Usually the aorta, so the main artery, has a diameter of 2-3 cm. If it gets bloated to 5 cm it’s actually too late and it will rupture, so I had to undergo surgery urgently. If it ruptures you die immediately. My aorta had a diameter of 7.5 cm (!!!). Yes, it was even 2.5 cm over the maximum. Now tell me, how would you react if a doctor tells you that?
I immediately got sent to the emergency room at a hospital in Cologne, which made the nightmare actually start. After the first shock, I spent until the middle of the night, having diverse medical inspections… Blood tests, x-ray, CAT… All within maybe 6 hours, with hours-long waiting times in between, having no foods or drinks… Of course I wasn’t able to sleep at all the following nights. The doctors made more and more check ups, because even they apparently couldn’t believe the extent of my health problems. Several doctors sounded my heart, asking who my GP was and that I should thank him for saving my life, because they didn’t hear any kind of heart noise.
You guys can never imagine how it feels like being “the one”. The one in danger, the one being terminally ill. If you hear stories from family or friends who tell you about people passing away or being badly sick, of course you are like „man, that’s bad“, but you can never ever feel the way that one person feels. As I said, it’s a nightmare. I wouldn’t wish this to anyone.
After two days in hospital we all decided to convey me to the hospital in Bad Oeynhausen (around two hours away from my home), which is Europe’s best known cardiology clinic. Because of my scary diagnose, we thought it would be the best for me to get the surgery and therapy at this place. The surgeon who would operate me came to talk about the following day’s treatment. After falling asleep due to the narcosis they would open my chest, open up my breast bone with a saw and connect me to a heart-lung machine, so my body could still get blood and oxygen while I would actually be… „turned off“. They would implement a mechanical aortic valve and an aortic prosthesis to replace damaged parts. The complete process of the surgery would take around six hours. Yes, that sounds scary. And that’s how I felt: just scared.
I was trying my best not think of it before, but it’s impossible. You cannot imagine how many crazy thoughts pass your mind. Will I survive this, or won’t I? Either way, what happens afterwards? Will I have a normal life after this? If not, what restrictions will I have? And the most scary case, what happens if I won’t survive the surgery?
Of course I couldn’t sleep at all. And luckily the next morning they gave me that kind of drug, this euphoriant or sedative pill. In a German slang we call it the „Fuck-this- shit-pill“. It’s effect was very strong, because I don’t remember anything from that day, except only one picture with the surgical team anesthetizing me. So, it was time. Even though I wasn’t really present on the 23rd of June 2016, now it was on me…
I woke up in the middle of the following night. I made it! It was the moment of my second birth, the start of my second chance. It turned the switch in my head from being scared into joy and knowing that now it’s only a matter of time and patience to get back to physical strength and fitness. I spent 10 more days in the hospital without any complications and right after I was lucky to spend 3 weeks at the rehab facility. The healing process and coming back to fitness was/is really going well, so after 3 more months being at home, at the doc and cardio sports each 2 times a week, I could eventually go back to work in the middle of October last year. I feel more than happy being „back to normal“.
Only one thing that didn’t go well was the healing of the surgery wound. Unfortunately around one month after the surgery it opened again partly and it just didn’t want to completely close anymore. No matter how hard my doctor and me tried, we couldn’t find a way to make the skin form back. So I had to change the bandage every day myself and also clean the wound to prevent an infection. Eventually we decided that I would go back to the hospital where I had the big surgery in January. Luckily now they could properly close the wound with another small surgery and after one week I could go home again. So, this wasn’t a big deal, but unfortunately it was necessary. Compared to the problems half a year earlier, this one didn’t really cause anymore problems or some kind of „shock effect“. It just felt like one of those small uncomfortable things every one has to go through sometimes. It’s actually not even worth a mention.
So, how was I able to get through all of this? This physical and psychological stress. Yes, it was a hell of an emotional rollercoaster. It’s something you can never imagine if you are not affected yourself. No matter how many sad stories you hear… You have no idea!
But I can proudly say that I am a fortunate person with the best family and friends in the universe. The whole thing was a shock for all my loved ones as well, everyone was scared as I was.
Are there any restrictions for me now? Yes and no, depends on your point of view. Basically I am able to have a normal life again. I also won’t need a new heart valve after 10 or 15 years, since the one I’m having now is an artificial one. But because of this, since it’s mechanical and not organic, I will need to stanch my blood coagulation to prevent getting a thrombosis, which would harm my new heart valve. So, once a week I have to check my coagulation value (INR) and take anticoagulant pills every day. In my eyes this is not a restriction. It’s something that you have to take care of and the risk of bleeding is higher, yes, but taking a pill only takes a few seconds and I am already used to it. Besides that, knowing it will support your health also makes you feel more comfortable with it.
A few things that I can’t do anymore are extreme- or contact sports (e.g. fighting sports, football). I never planned to do those though anyway, so I won’t have to worry about that. The sport I love is fitness training and this is something which is even helping my health. So now I feel even more motivated to just go running. Also, being in the middle of the wild crowd at a rock concert is something that I need to be careful with now. I really loved to mosh in the pit to Linkin Park or other bands. But the urge to do this considerably shrinked the last couple of years. I mean… In the end of your 20’s you just don’t feel like in the beginning of your 20’s anymore. 😉 I started enjoying to just watch a concert from further back. I love to watch a good show and enjoy the sound, which is much better in the back anyway. So, even this aspect is something I can really live with.
And that’s it! Everything else is still as usual. Most things I can still do without even thinking of my heart problems. The feeling of being worried is much less than expected and also shrinks day by day. I’m still far from saying „I don’t think about it at all anymore“, but I’m getting more and more used to it. Just like I wrote before, I feel back to normal.
The most essential part of winning this fight was the incredible support of my family, my friends, my band and – most important – my amazing girlfriend. In times like these you experience who REALLY cares for you and would do anything to help you out, no matter how hard it is.
Raissa was with me the whole time while I was in hospital. Even though she still lives in the Netherlands and was actually busy with finishing her studies. No-one could comfort me more like she did. Can you imagine the feeling that if your situation is actually so extremely fucked up but that one person makes you feel like you don’t care about it just by being with you? That’s basically what she did to me. I was in hospital and had to go through very hard bullshit, so there wasn’t really anything she could do, because I had to do this myself. But only knowing she was there confirmed that it’s all worth it and everything will eventually be better than before. I can never be more thankful for anything and I just love her so extremely much! This is forever!
My family and friends were there for me too, I don’t want to forget to mention them. They made the first few months after the surgery much easier for by helping me with going grocery shopping, driving around or just giving me company. I am also especially thankful for Melissa (the great head of LPFC and amazing friend) making it possible to get so many best wishes from all you guys! Thank you all at this point!
And also I have to mention my band mates, who were so patient with me and cheering me up all the time. I am now fully back in the band and we just recorded a couple of new songs. So, if you like to check out new music you should you check out „Distinct Vein“ on Facebook (www.facebook.com/distinctvein) or our homepage www.distinctvein.com! *Covert advertising mode off* 🙂
Well, cutting a long story short… Why am I writing all of that? Asking for attention by telling how much I suffered? Scaring you guys by being an example how fast it can be over? Nothing of that! If you read the story carefully and especially paid attention to the last few paragraphs you will realize that this isn’t a story of sorrow. It’s a story of luck and fortune! Look… How incredible is it being diagnosed with an actually deadly disease by „coincidence“, being successfully treated and experiencing what life is actually about? It’s all about the small things in life. It’s about realizing what or who is most important to you ever. I enjoy everything now more than I did before and I don’t give a damn about those irritations which aren’t actually even problems. I now focus much more on what makes me happy and follow my heart (pun not intended) to feel complete, instead of trying to fix what isn’t worth the effort. Isn’t that how it’s supposed to be?
And this is my message for you all. Enjoy the small things in life and cherish every second with the ones you love and who is important to you. I know that sounds so easy because everyone is trying to live like that. But it’s easier said than done. So with this letter I want to contribute trying to make people focus on finding out what the essential things in their lives are and be happy with what they have. Don’t waste your time with being angry or irritated. Stay positive to make this world a better one. In times like these we all need positive energy!
Once again, thank you all! And, see you at the next Linkin Park related shows and events! 😉
Sincerely grateful and humble,