Tag Archives: cardiology
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.
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
Holiday time…
Hi all,
Happy Holidays to everyone and thanks for all the support!
The end of the year always seem to rush up on me, so here we are all of the sudden. I am taking a well needed break and get to spend some quality time with my family. I hope you all are doing something nice for yourselves and get some time to relax.
My new installements have been coming slower this past half year, due to me being more busy with my company, but I am aiming to balance things a bit differently in 2018. I guess I simply need to add more hours to the day. Overall, 2017 was a good year and I am looking forward to an exciting 2018.
Please stay in touch, hug each other and enjoy being alive!
Stefan
Mom care – week #41
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.
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.
Keep walking – week #40
Walking is it.
Hi all,
This week’s episode is about getting into the new routines in the three week stay at the temp housing. It was one step closer to being back into normal life and there were many new routines to get used to, to not forget (!) and, therefore, be nervous about: taking the meds, keeping the LVAD batteries charged, change them in the right order, not getting caught with the chord that went in through my stomach and up to my heart to the pump/propeller that was attached to my heart.
Walking was a central part of recovery and boy, did I learn every millimeter of that walk. I consider myself extremely (!) lucky to be able to be where I was though. Sure, it was a bit of a drab business hotel close to the highway, but it was peaceful, the staff was very nice, it was right by a slough that came from the San Francisco Bay. And it was a hotel! I was being very well taken care of. You’d hear frogs there and once we saw a small leopard shark by the edge of the water. The neighborhood was a car dominated suburban, strip mall sprawl-land, but there were sidewalks to walk on pretty much everywhere. There were restaurants and a grocery store in the strip mall within walking distance, once I healed up more. And, the weather was pleasant.
Thank you all for coming here and supporting this and I hope you had a good Halloween, in case you celebrate that.
Big hugs,
Stefan
Discharged…
Hi all,
I finally got back into the swing of things, at least for this week, and made another episode. It feels great! I never doubted that I would continue, but once you take a long’ish hiatus like this one (7 months), it turns out there’s a bit of resistance to start again. I filled up that time with other things. Walking around, sitting on the couch, looking a YouTube videos.
Either way, this week tells the tale of when I was discharged from the hospital and went to stay for three weeks at this business hotel about 5 miles from Stanford Hospital. There were a handful of other patients like me there too. We would have stayed at some building on the Stanford Medical campus, but they were, and still are, building a new hospital there, so the air was deemed a hazard for us straight out of open heart surgery or body transplants. The soil contains spores and mold which to an immuno suppressed person is bad news.
So, we drove back and forth to the hospital every third day for check ups, using what I had named our “Death Trap”: Christine’s ’95 Subaru Impreza that had caught fire when I was I going down the highway a few months earlier. No biggie. I feel like I might have gone over this story in some earlier post, but I am too technically challenged to check.
Thanks a billion for coming by to read and I hope you all are doing ok, but hopefully in some cases even better.
Big hugs,
Stefan
Time flies…
I don’t know why I haven’t posted anything until now, but here we go.
Since my paying work started to pick up earlier this year I got busy to the point of not wanting to cram any all-nighters in order to get the weekly episode of this done. However, I was totally baffled to see that the last round was all the way back in March! Time flies.
So, during this time I have produced a bunch of video graphics and animation. I am attempting to move my company Stefangus Design up a notch in seriousness to make it work in a more sustainable way.
Years ago I used to play guitar and croon in a band, and I am finally mixing and producing the album we recorded back in – wait for it – 2008! The songs will be released in a series of online “singles” (remember 7″ records? For those of you who were born after CD’s bit the dust). You can check out the first batch here: https://luminousfamilytrust.bandcamp.com.
To wrap this up, the plan is still to finish this story here online, and then make a book of it.
That’s it for now. Hope you’re all doing great and see you soon.