Over the past few years I have written about health related things a couple of times. I haven’t written a great deal about the current conditions we live with – here in the middle of a global pandemic. A friend wrote a piece the other day admonishing folks to have a certain level or preparedness when it comes to things going pear shaped on the medical front. I’m going to repost all of the story I’d done previously further down, but I am need to emphasize a few things first.

One of the most important things you can do is be aware of your own health. Don’t lie to yourself about it. That’s not going to help anyone. Once you are honest about things with yourself, try to figure out if there are any things you should be doing to help yourself to maintain. Sure getting better is an important goal, but sometimes stable is where you need to start. Staying healthy is a long term struggle.

Sometimes in that struggle, things go wrong. Stuff happens. It happens to all of us – some of us more than others. (One of the lines from Animal Farm that has stuck with me all these years, “some animals are more equal than others…”). When it comes to being the support person for medical related problems I have gained a fair amount of experience. As I typed in the notes to my friend, this is not my first rodeo. I have been “support guy” for 3 hospitalizations a year (on average) for the past 15 years. Medical problems/emergencies/surgeries can be scary things, even to those who are familiar with the processes involved. There is a list of things you should consider in order to be prepared. I’m going to cover a few here.

It’s a good idea to have what the military guys call a “go bag”. It’s a backpack or some kind of gym bag or something that has emergency stuff in it. Get some casual / loose fitting clothes and put them in a plastic bag in there. Also in there:

Insurance Information
List of Medications and Medical Conditions
Toothbrush, hygiene products.
A novel, puzzle book, electronic game to pass time
Extra phone charger, AC adapter
Personal Emergency Contacts

Set up a Text Group to notify key individuals at once.

Appoint a main point of contact among your emergency contacts to avoid confusion.

Make sure everyone has a role – who takes care of the pets (and how)? Who gets the mail (where does it go)? Who needs to call others? Who has access to your vehicle and home? Who will secure and watch your home in your absence?

Vital on this list – get your will, your living will / medical directives AND a durable power of attorney done. No, it won’t be free. YES, it matters a lot. Do it as soon as you are able. This is not the territory of the ancient and infirm. You need these documents and you need to put them on record at your doctor’s office. Keep a copy in whatever secure location you have at home. Make sure people on your list know about them and can get to them. This is NOT a secret!

Make copies of your (general/big item) medical history and your list of meds. Shrink these copies down to a small but readable size. Get self laminating sheets from the dollar store and make them durable. Jamb those things in your daily carry item (wallet/purse/fanny pack). Have an extra (durable or not?) copy that you can simply hand to the EMT/Paramedic/nurse/police officer and not worry about losing. Keep this information up to date!

Don’t Panic. You help nobody if you can’t help yourself remain calm. Freak out later, take care of your people first. IF it’s possible, get a second person to listen to what everyone says. Don’t be afraid to take notes. YOU must be your own advocate!

Track all the things. Discharge paperwork, dates of service, home instructions/restrictions. Yes, it’s like homework but it matters. Keep all this in a safe and accessible place. The insurance company doesn’t know what happened and will probably have lots of questions later.

Ask friends for help, and give help to your friends when they need it. It’s a very hard lesson to learn when people you thought were “tight” with you bail at the first sign of trouble. Take care of yourself and those you care for.

This is an edited version of what I wrote before, chronicling our early roller coaster ride of heart and health related issues. There has been a LOT more since this was written:

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I wrote this for our fanzine as part of our first meeting at The Midtown Scholar. I felt it was important to give a little sample of how the community of fans of science fiction and fantasy can really come together and make a difference, but I don’t want to limit the number of people that see it. I have had many wonderful experiences with this fan group and genuinely hope to have many, many more. Rare Constancy was originally written as part of an advocacy fanzine to help raise awareness of heart problems among fans. I’ve kept the advocacy bits in here, but I also hope the connections I’ve made to some wonderful and amazing people show through as well.

I’ve not experienced heart problems myself. I hope I never have to. I hope you never have to either. I’ve got some small experience dealing with hospitals, ICUs, cardiologist visits and all that mess. You can keep it if it’s all the same to you. Nothing against the people doing those jobs, I’m just not a fan of hanging out there more than I really have to.

Rare

Just over 5 years ago (at the time of this writing) my wife and I were expecting our first child. It wasn’t a simple process with the doctors because there was a certain amount of risk involved. Rebecca, my wife, had been diagnosed with a heart condition when she was very young. She had been taking medication for this “condition” which was diagnosed as various things, including Cardiomyopathy, all her life. The doctors monitored and checked and made copious notes, but in the end we were ready to go. We were thrilled, excited and running about trying to “be prepared” just like any other first time parents. We thought we had it all nailed down. As the saying goes, just when you thought you had all the answers somebody changed the questions.

A couple of weeks after our beautiful daughter was born wonderfully healthy and without complications, my wife started having trouble breathing. She had a cold and was as tired and wrung out as any first time parent. We did our best to cope with everything. Despite our best efforts my wife’s health got worse. Worse to the point where we needed to get back to the doctor. As it happened, this was fortuitous timing. She described it as drowning. Very, very slowly drowning. My wife had pneumonia. That’s bad in and of itself, but it didn’t respond to medication well because as it turns out pneumonia wasn’t all she had going on. That was where things really started to go downhill.

In terms that I can understand, congestive heart failure means the heart weakens leading to things like fluids building up through out the body and that does things like puts pressure on the lungs making it hard for them to expand properly. The fluid also adds pressure to the heart (already less than perfect in my wife’s case) and makes it’s beating less able to pump things out, therefore allowing more fluid to build. Lather, rinse, repeat until dead. My daughter was born mid November and before Christmas my wife was in the hospital with congestive heart failure. I was home with our newborn and lots of long days and nights.

I’ll be honest. Those days are a blur to me now. I don’t remember what I did other than sleep mostly dressed with one hand on the baby basket rocking it in my sleep. I could mix formula without conscious thought and have a diaper changing time that would shame most pit crews. Christmas in the hospital isn’t a great thing. The staff there do their best to keep spirits up, but tinsel on a gurney doesn’t look festive to me, it just looks sadly out of place.

After a couple of weeks attempting to get things cleared up and get medicines straightened out my wife was released from the hospital. The doctors gave directions to have very limited fluid intake and a low sodium diet in order to avoid a reoccurrence of the fluid buildup (and therefore more heart failure).

Constancy.

You are educated people! If something is vague or unclear, ask questions consistently! How much is “limited fluid”? Turned out they wanted to limit my wife to a liter of fluid per day. One liter – any and all liquids – that’s it. How low is “low sodium”? How about less than 1500mg per day. For perspective, a typical candy bar has about 150mg of sodium in it. Yeah, 10% of your daily allowable total for a snack. Try that sometime – see how it works out. The key is to ask every time you don’t understand something. Get specifics. This isn’t easy to do in emergency situations, but once the immediate crisis is past there really isn’t any excuse. Read everything they give you. Consistently follow their recommendations. The only person you’re lying to if you don’t is yourself. The ones that truly suffer are those around you. If you’re in the support position, as I was, this is the key to getting by.

Rare.

Be one of those rare folks that takes the time to ask the questions. It’s your (or your partner’s) health, be interested! You don’t need to be like my wife and ask if you are allowed to watch procedures while they’re happening, but you should get the scoop on them. Usually once the doctor knows you’re interested they’re more than happy to expound endlessly about the minutiae they were forced to memorize that nobody cares all that much about on a day to day basis.

The end you say? Hardly.

Sometimes despite your best effort things don’t go the way they should. After ten months of following this strict plan, counting everything, residing within the limits given, and taking all the medicine as ordered Rebecca started having trouble again. Yes, for those of you scoring at home that brings us around to another holiday filled with heart problems.

Here is something from the glory of e-mail archives, a message to friends in my wife’s own words:

“About 3 weeks ago I started to have a tight heavy feeling in my chest. When it kept coming back after a few days I called the cardiologist. They are a little cautious about these sorts of things considering the situation, so in I went for tests, tests, and a few more tests. The nuclear stress test they did led them to believe I had a blockage which led to a recent heart catheterization. During the cath they realized that I did not have a blockage, but that my arteries don’t all go where they’re supposed to. In other words I was born with an abnormally formed heart. (I blame Dad’s Polish heritage…probably had the freakin’ blueprints upside down or something when they made me. What the hell? I blamed his German heritage for my liver processing the Coumadin so fast that they couldn’t get my levels high enough and I was stuck in the hospital for weeks over Christmas. Good thing Daddy’s got broad shoulders, huh?!) Don’t ask how someone can be seen for a heart condition for as long as I have and they just now realize what exactly the problem is. Apparently, the whole thing is pretty rare…”

Rare.

There are times when it’s not such a great thing to be the rare one – and despite television’s take on all things medicinal – heart trouble is one of those times. The rare condition my wife had is actually called ALCAPA (Anomalous Left Coronary Artery originating from the Pulmonary Artery). Rare in the United States means it affects 1 in 300,000 live births. ALCAPA represents approximately 0.25-0.5% of congenital (born with) heart defects. When it does happen (these days at least) they either find it in infancy because the baby shows signs of heart failure and they fix it or it kills the baby. In the odd instance where the child survives and reaches adulthood with a misdiagnosis or without being diagnosed at all, the defect is most commonly found post-mortem. Usually the person just drops dead with no signs of anything having been wrong – because the heart is only working in the neighborhood of thirty percent of its actual capacity.

Thankfully we have a fantastic cardiologist. Once he figured out what was wrong and how rare it was to have an actual, still breathing case of this he told us the straight version of things. He said there was a pretty good chance this was a once in a practice kind of thing for him. He may never see another case like my wife if he practices from now until retirement. I say he’s fantastic because rather than try to fix it himself he wanted to direct us to his mentor (who had seen three or four of these cases). Rare indeed.

To make a very long story a little shorter, we ended up consulting with the mentor (a fine thoracic surgeon). He, in association with his partner, had written a peer reviewed paper on the condition and had done some studies on surgically repairing the condition. I say if you need a repairman, get the guy that wrote the directions when you can.

So at age 33 my wife joined the zipper club and had open heart surgery to repair the defective arteries and place a new valve in her heart. It was a very successful procedure with fewer complications than expected. The only glitch in the entire process was with the camera they had set up to record the procedure for teaching purposes. If something in the process is going to fail – let it be the camera that’s recording the whole thing. The procedure was smooth and the hospital stay relatively short. Recovery time from open heart surgery is not so short.

Constancy.

I am amazed and blessed with the friends my wife and I have through fandom. They are chosen family for me, and they are always there. I had a friend from this crowd volunteer to sleep on the couch one night each weekend during those recovery months so that I could get some rest (my wife wasn’t allowed to pick up our infant daughter for six months after the surgery for fear of tearing something). When my schedule became too tight and I couldn’t manage everything I had a friend from the group burn one of her vacation days to help out. I know how few of those everyone gets, and to have a fellow fan surrender one in the name of helping out is something I am grateful for to this day. Be constant for your friends and fellow fans, it means more than you know. When times get really tough your true friends remain.

Cooked meals, companionship and helping hands all from connections I made through fandom. Fellow fans are my chosen family and have been for a very long time. The sense of community is amazing for such a diverse and scattered crowd. Once connected all those years ago I found a rare and constant bunch. They all showed me how amazing (and crazy) they could be when the chips were down. I’m hoping to continue to expand the circle of fans I know because I can’t imagine who might need my help out there, but if I can pay even a little of these things back it will be worth it.