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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

Home bound.

Hi all,
This week is about coming home for the first time since I was admitted to the hospital. It was a pretty big deal. I had been pretty close to death, gone through my first open heart surgery, and now had a device that my life was depending on. I had to clean and change the hole where the chord went into my body to make the LVAD, the pump, go. I had to remember to take meds everyday. There were a lot of things to remember, to possibly forget or do wrong and to freak out about.

 

 

 

 

 

 

Also, having two exceptionally active and curious four year olds in the midst of equipment that could not be tampered with or supplies that had to stay as bacteria free as possible was a concern too. Despite all this, things went fantastically well. The kids were amazing an we had none of the troubles I had anticipated. Per usual, Christine had to coordinate a bunch of stuff, the grandparents were basically a second set of parents during all this time, plus friends who helped out with various needs. I don’t know how many times I was called “The Bionic Man” or a “Cy-borg” during this time.

Anyway, thanks for stopping by and hope you’re all doing really well.

 

Hugs,

Stefan

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