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.

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.

I Left My Heart In Palo Alto discharged

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

 

 

Unit walks.

Things are moving on and this week talks about life on the unit and unit walks.

Moving from the ICU to the Cardiovascular unit basically meant more training for life after the hospital, getting in better shape, getting used to the LVAD and all the things that went with it.

My organs and body functions still needed some encouragement to go back as close to normal as possible, and physical activity was a huge part of making that happen. Three walks a day was the minimum. I was lucky (!!!) not to be in any pain so it was fine for me to do this part of recovery. If anything it got severely boring to circle that same place 30 times a day. On the other hand it felt great to notice the improvements and I felt proud over my achievements. The staff was relentlessly encouraging and positive and, again made me feel very special. It is shocking to experience the degradation of ones body and hard to accept the need to limit physical activity. On one of my first walks in the corridors of the hospital I had to eat the humble pie. After insisting, despite the nurse’s warnings, that we keep on going farther and farther away, I had to take several breaks on the way back and at one point I was wondering if I’d make it back at all.

There were some key things with the LVAD that had to be learned and remembered: how to wash the hole where the electric chord went in through my stomach and change the dressing that covered it (not my body in the pic), in what order to connect and disconnect the cables when switching batteries, not to fall asleep without disconnecting the batteries and connect to the wall unit instead. Plenty of things to freak out about, but I had family, friends and hospital staff to support me.

Thanks again for coming by to read and hope you’re all doing well.

Peace and quiet…

Time flies. I skipped last week since I was up to my earlobes in work, but now I’m back!

This week talks about getting out of the ICU and moving to the piece and quiet on a regular cardiovascular unit. I got my own room which was incredible. After spending, I forget how long, in the higher energy ICU it was like being let out in a sunny meadow. In the ICU they have constant check on everything that goes on in your body since you’re fresh out of the oven. Like I said in the comic, there are alarms going off constantly for disconnected tubes or end of IV-cycles (when all of whatever medicine has been pumped into somebody’s body) or if there is some urgent event. I felt very safe there since I was surrounded by people who were focusing on me being ok every hour of the day and night. The flip side of that coin is that it can be hard to get good rest there. I can’t remember if I wrote this before, but a nurse said something like “it’s ironic that the hospital is not really the best place to get some good rest”. Apart from the alarms there are tests and x-rays and studies and check-in’s. And that’s not counting the crazy lady in the next room who screams that she needs to speak to someone who understands Russian. I felt for her. Being in the hospital can be scary, and not understanding what the hell people around you are talking about as they poke you is not going to make it better.

So, my own room felt incredible. There continued to be tight checks on everything, but I could close the door and have my own space, I could have visitors. Of course, in the back of my head I was often thinking “this shit ain’t free”, but the comfort at the moment was the most important.

So, anyway, I hope you’re all doing well, or at least decent. Thanks for reading!

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