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!
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.
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.
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.
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.
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.
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!
It’s been a pretty busy two weeks with a dear visit from family and some tight deadline work. I finally managed to get this episode together that partially deals with, while still being in the ICU, getting a crazy toothache. It just came on all of the sudden and it was really bad. I had to soothe it with ice water first and the water had to be in my mouth constantly, otherwise the pain would escalate to a brutal level. We’re talking writhing-in-my-chair level. It would move from my molar in the back to the front teeth and then back again. I finally managed to take even more painkillers, in between the other painkillers I already took. So, there I was, after open heart surgery, and the worst pain was not in my chest but in my tooth! It was laughable. After a few days a dentist finally managed to come in and she spotted a tiny (!) cavity in one of my molars. Needless to say I immediately booked a time with a dentist to have it fixed as soon as I could leave the hospital. Then, as sudden as it appreared, the ache disappeared. About 1.5 years later my regular dentist spotted the tiny cavity and fixed it.
This week also talks about being surprised about the kind of social help that would pop up in the US system when I least expected it. Growing up in social democratic Sweden in the 70’s and 80’s, the social welfare system in the US could feel heartless and meager in comparison. I guess to sum it up, it feels like I have learned that there is help to be had here too. It just kicks in way later and you have to be in a way more dire shape in order to qualify. Better or worse? That’s a good discussion to have at some point. Right now I am too tired.
Again, thanks all for coming here to read and I hope you’re all doing ok.
Here’s another dang post. So I found out why people who subscribed to this page do not get any notifications when I post a new episode: it’s because I need to post something written here since apparently the subscriptions are tied to these posts. Could it be triggered from the comics, which would be ideal? Maybe, but I am not ready to dive into that technical morass and spend two days to find out.
So I found out why people who subscribed to this page do not get any notifications when I post a new episode: it’s because I need to write a dang post here since apparently the subscriptions are tied to these. Could it be triggered from the comics, which would be ideal? Maybe, but I am not ready to dive into that technical morass and spend two finding out.
Anyway, this is week #35, which means this has been going for almost nine months! Unbelievable. And I haven’t even got to the actual main surgery yet. It feels a bit like this will never end, but I enjoy doing it, so what the hey. I’ll get an intern if I lose my gusto.
The Fox sisters.
I am still planning on publishing this in book form once I have gone through the whole story here online, but I have not yet approached any publishers about it. One reason is that I have not had the time. What do I do with all my time? Either work or look for work. They both take up a lot of hours :). Part of me also wonder who the hell is going to be willing to publish a story about a life-threatening illness? What kind of entertainment value does that hold? When people pick up a comic book they want to escape and perhaps laugh a bit, not getting slammed in the face with mortality! Stop bothering people! If you were a famous person it would be different, but you’re just a regular guy reminding us that we all will end up on a stretcher! Go away!
As true as that is I really don’t care and I have no interest in cutting myself short before I even try, so anytime soon now (soon, meaning sometime in the next year!) I will check out what options are out there. Maybe I can publish it as some kind of lightweight medical journal?
Anyway, I hope you’re all doing well and thanks for reading and supporting this project.
This week has the 100th frame in it!
This episode deals with the first time I received a real shock from my defibrillator. I remember getting it installed into my chest under my right clavicle. Normally they go under the left clavicle since that is a shorter distance to the heart where the two sensor strings will go, but being a lefty I asked to have it on the right to minimize strain and movement restriction on my main hand. After the surgery my shoulder was purple and blue and my arm was in a sling. I can’t remember if I had to stay overnight at the hospital but I think not. On the evening when I came home from the surgery I laid in bed reading the manual to the defibrillator and for some reason it felt really absurd to read a manual for such a serious medical device.
Either way, the manual talked about the different levels of shock that would be administered depending on the severity of the heart failure. For people who don’t know (and why should you?) the defibrillator sits in your body, monitoring your heart. If the heart starts beating slower than the pace you programmed it to, it will make it beat faster with the help of small electric shocks (like a pacemaker). If the heart starts galloping faster than the defibrillator was programmed to, it shocks the heart back into normal pace. It is the same procedure as you see on TV shows and movies about hospitals, where the nurse has two clothing iron-looking things in their hands that they put on the passed out patient’s chest and scream “Clear!” The manual told me that the highest level of shock administered felt like a horse kicked you in the chest! What a great evening read! The consolation was that apparently at that point, you’re in such a bad shape that you’ve already passed out. Phew… I guess.
The shock that happened in this episode was luckily the most severe I had to experience during my time wearing it, but it was enough. The best way to explain how it felt is “like being electrocuted”. I think I did a small jump on my bike and let out an involuntary “ugh!!!”. I could feel it in my jaw and all of the body. It really did feel like it came from the inside. After, I got off the bike, tried to calm down and walked very slowly the rest of the blocks home. My transplant buddy Mike said he got shocked constantly in the month before he had his surgery. I can’t imagine the edge he must have been on, walking around knowing he could have that terrible thing happen to him at any time throughout the day.
Have a great week everyone and thanks for coming here!