The mind

Getting these installments out while running my own video production shop has shown to be a challenge. I am very happy to be very busy with paid work, but it doesn’t leave much extra time to jot this stuff down. I am hoping to reach the end of this story pretty soon and then make a book.

On a different note: as of 2018 I changed health care providers and am now going to a different hospital. Did I mention I had my annual checkup in August and everything looked great! A big relief, since a couple of months before that I had noticed that I did not have the same stamina in my workout class as before. I used to be able to run at pretty high speed for the reps we did, but now I found myself getting tired quicker. Granted I had taken a few months off, and at 50 years old my shape is going away pretty quickly if I don’t keep at it. I had also experienced a few head rushes when standing up after squatting or sitting on the floor. In short, all things that I used to feel before my surgery. My first thought was “oh man. Is this it with this heart? Will I need another transplant?” There’s a big range of how long your heart lasts after a transplant and a few years ago I heard about a guy who’s heart started to get a lot weaker after 9 years. I am only 5 years out, but you never know. Basically, I will never be “out of the woods” with this. I will always need medication. The best thing I can do is to take as good care of myself as possible and I think I am doing alright in that department.

week 48 mind games

But, the annual test results told me all was good! I feel like it was yet another wake up call. To the point of this week’s installment, it is easy to start slipping on your commitments. Even the life important ones, like in my case doing some kind of physical activity every day. So this time I realized that I really wanted to be serious about regular workouts. It doesn’t have to be some insane cross-fit sessions, but going for a swim or a walk or some type of workout class. I always hated running so walks is a good compromise, and right now there is research stating that a 30-minute walk is as good as any heavier workout. Who knows? Those things change every six months it seems like, but I choose to believe it since I really like walking.

Anyway, like I said, this week is about saying and promising things that you think you will for sure (!!!) do, and then still not following through on them. Even things that could be life-threatening. It is a mystery. Life is not as linear and organized as I thought. It is a goup of emotions, happenstances, circumstances, wims and other mind mysteries. Hopefully, it has made me a bit more understanding of other people and their struggles.

Thanks for coming by and reading,

Stefan

Powered…

Hi all,
Another account of life after coming home from the hospital.
I could not be in a situation where did not have access to electricity for any longer periods of time. I had to be in touch with the local fire station in order to ensure power in case there was a power outage. That kind of preparedness was mind blowing to me and made me wonder how many people in similar, dire situations were located in my neighborhood.iLeftMy_electric

Luckily I had never had to run down to the fire station. Instead I got to heal up, ride my bike, pick the kids up from pre-school and take part of daily life. It was great.

It’s amazing how quickly one adapts to new conditions. When going to sleep at night I plugged myself  into the outlet on the LVAD machine while the batteries were charging. It just had become the new normal.

Hope you’re all doing well and thanks for reading.

Stefan

Support from my peers.

Greetings,
I am trying out publishing these every other week. Bi- monthly? I can’t remember what it’s called. Bi-weekly? Anyway, it feels like that might be a good pace.

I am currently on Spring Break with my family and some friends out by Zion National Park. It was a loooong drive out here. It seemed longer than I had anticipated. The landscape out here in Arizona and Utah is incredible though. I feel like I am in a copy of National Geographic when I look at the huge, red mountains and rocks. It puts me back to the old Western movies I saw as a kid and I wish that suddenly a band of the Native Americans I idolized back then would come riding over the prarie.

Anyway, this week is about my first encounter with the fantastic heart transplant support group. It was so great to connect with other people in the same, or similar, boat as mine. Swapping stories and experiences about hospital stays, medication side effects (the tremors!) and other morose things. There were also people there who were on the wait-list to have their transplants. I remember a woman who looked very uncomfortable as we joked about the different harsh experiences we’ve had. No wonder. We tried to assure her that things would work out fine and I was happy to learn later that her hanging out with us really had eased her fear.

Thanks for reading and hope you all are doing well.

Stefan

Re-start again!

Hi everyone,
Ok, let’s re-start again. It turns out it is harder than I thought to get back into the routine of posting new episodes. Things keep falling down in front of me that seem to be more urgent. I deal with those things and suddenly the day is gone, the weeks have passed and a few months are behind me. Deadlines and a set schedule are my friends! (have anyone ever heard that before?)

I am honored and extremely happy to have new subscribers! I hope you will enjoy the story.

On the health end I have been going through two changes of health care insurance (from one provider to Medical and then back to another provider) which meant that for the majority of 2017 I didn’t actually see any doctors or other health care personnel. Everything was up in the air, I was waiting for replies from hospitals and health insurance providers. At the end of the year I got in with a new hospital in San Francisco and one in Oakland. They were all great. We got aligned with my health history, updating blood draws and filling out paper work. When I changed again, I re-started the same procedure and I think I am at the end of wrapping up all the updates.

Either way, it turns out I am doing fine and just needed a few medicine adjustments. No matter what it is though, not matter how much doctors and nurses tell me it’s fine and nothing to worry about, it always makes me uncomfortable on a subtle level. “Why have things changed? Is it for the better or worse? Is my health slowly declining only to crash land in 2-3 years? Of course the doctors are going to tell me not to worry!” To make myself feel better I remind myself that everyone’s health is slowly declining throughout life. Sorry if I bum everyone out, but the best I can do is to enjoy the laundry list of great things I can still do and experience. Ok, enough life coach’ing. That’ll be $40.

0255_iLeftMy re-start again

This week’s installment talks about not being able to see my kids for about 3-4 weeks straight. The big surprise, stupid as it may seem, was how very quickly I felt very distant from them. For a lot of my life I was planning on going on tour playing music. I’d think it’d be totally fine to have a family and kids, go out for 3-4 months and then come back. No biggie. Obviously people do that all the time, but I was taken aback at seeing how much they seemed to have grown in those few weeks we were apart. They seemed to have developed their vocabulary a whole lot! All of the sudden 3-4 months seemed insane.

Either way, I haven’t had to wrestle with the decision of going or not going on any lengthy tours this far, so I guess that problem has solved itself. However, I’d probably wouldn’t turn down the opportunity should it present itself.

Hope you’re all doing great and thanks for showing interest.

Stefan

Family closeness…

This week talks about family closeness and more time in temp housing. Somebody had to be with me at all times to make sure everything was ok. I was lucky to have my mom come over to the US to help out. Christine had to be home with the kids for most of the time, but, thanks to all the unbelievable help from her parents, was able to come down so we could be together here and there.

I can’t imagine how overwhelming it must have been for Christine and my mom. Christine had to hold up the fort at home, deal with the kids and take care of all the communication and practicalities. My mom who was 69 at the time and had trekked over here on her own. She had to deal with the crisis situation in a foreign country, in a second language, and drive me back and forth to the hospital, to the pharmacy or wherever I needed to go.

0236_iLeftMy family closeness

Staying in the same room, 24/7, for close to three weeks offered some precious quality time. We talked about our family, old adventures, growing up, my mom’s life history (which is interesting to say the least) and a bunch of other random things. Needless to say that kind of extended time together never happens anymore. With anybody. At the same time, it also awakened the good ol’ parent-kid relationship full force and there a few big blow-outs, sometimes with yelling and tears. It all ended well though and I am certainly lucky to have the families I have around me.

Thanks all for stopping by and reading.