First dark day.

I spent this morning doing the last part of a 1.5 week chasing down of one of my immuno-suppressant meds. An immuno-suppressant is something that I can not skip since my white blood cells will then start kicking my heart and wonder what this foreign object is doing in there. It can end very badly.

For 2018 I changed health insurance so everything is new. Like I talked about 2 weeks ago, everything has to be linked up to my old records, new departments and doctors has to be hooked up. Let me just state that my new health service place is great in almost every way this far. I took my, literally, last dose of that particular med this morning and had no more even for my evening dose. I mean literally in the correct sense of the word, not in the “pretty much” way it’s being used these days. I ordered the refill two weeks ago and by this morning it had still not materialized. Last week I checked in, waited at the pharmacy in vain for two hours, called a couple of times etc. So, this morning I got upset. I called and wrote every person involved and luckily, four hours later it was solved. It ate up all my morning work-hours.

I totally understand that things are not perfect, things happen and everyone’s working hard to  get things right. Again, I am also incredibly grateful that I even have access to the care I have. However, some health care personnel act as if you’re an ungrateful jerk if you get angry or take them to task over something. As if any attempt of theirs to make things happen should be received with utmost gratitude. I don’t know if there’s some kind of Jesus-like attitude about their work, in that they are doing “the good of the world”. I agree that they are doing a great deed as health care providers, but, it’s a paid career that they chose. If nobody paid them they would most likely not set foot at their hospital or clinic. Just like most other people in other professions. It’s as if I order a ham sandwich at the deli and they hand me tuna casserole. I would complain and they would tell me I should be grateful that I get food. Either way, feel free to rip on me in the comments if you like. I’m happy to hear other angles.

This week talks about my first real dark day after my first surgery. I had managed, with great support from family, friends and staff, to keep a positive attitude during the very serious situation I was in. But, when you’re sleeping your mind goes in whatever way it wants and in my dream I was put back to the time before all my heart issues started. It was really tough to wake up to reality in the morning. I probably had other real downer days after that, but in hindsight, this one stands out.

Thank you so much for stopping by and reading. Hope you all are doing great.

Hugs,
Stefan the curmudgeon

PS. To add to my surly’ness, I just had to ask a lady to not take her dog for a walk in our yard! What???

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

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.

holiday time image

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

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.

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.

I_left_my walking route

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.

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

 

 

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.

iLeftMyHeart_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.

 

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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