DETERMINATION CAN GET YOU THROUGH, BUT IS IT WORTH IT? – Marilyn Armstrong

FOWC with Fandango — Determined

I can relate to determined.

It was that kind of day. We needed some food, but no money comes in until next Thursday, so we are flat broke … but prescriptions still need to be filled. I sent Garry to the store with a list and a reminder that we are seriously broke, so ONLY get what’s on the list.

Also, I had to reschedule a hospital appointment because they’ve deferred me so often, the original tests are two months old and I don’t even know if I’m still anemic or it has bounced back to normal. I’ve been on the edge of below or slightly above anemic most of my life so it wouldn’t surprise me if I was now back in the normal range.

University of Medicine and roads

I have no complaints about the medical care at UMass Memorial, but getting an appointment in a reasonable amount of time is crazy. Garry got in fast because … well … he knew someone. That’s right. He had an old connection from his working days. I, on the other hand, do not have a connection. Worse, UMass is the kind of place where they don’t listen to you.

I have seizures. Short, limited, with a quick bounce back — but still frightening. I thought, after the last one, I should see a neurologist. Garry, who has the hell scared out of him, agreed. My doctor agreed. We all agreed, but I could not convince any neurologist at UMass to see me without requiring I get a head MRI first.

My doctor and nurse couldn’t convince him either. He was dead set on that MRI, even though I would probably have all my problems solved because following the MRI, I’d be dead.

You see, I have a metal pacemaker in my chest. Even being in the room with MRI equipment would kill me. Literally, would tear the pacemaker out of my chest and leave me gored, bloody, and dead. I can’t prove it because apparently, I’m not mentally equipped to explain my medical problems on my own.

So I never saw a neurologist. Never talked to one. Never heard from anyone. It has been months, maybe close to a year. Every time I get a bit dizzy, I’m terrified I’ll have another seizure, but since I can’t see a neurologist without dying, I figure I’ll have to live with the seizures.

And now, it’s time to change cardiologists because Garry and I are getting too old to haul our asses into Boston. I need a local doctor. Even though I can and did completely describe my heart surgery — all of it — I still have to prove it. PROVE IT?

How do you prove heart surgery? Can’t they just call Beth Israel and get the records from them? I may have the records somewhere, but they aren’t “legal” if they don’t come from the hospital. But we have all these medical privacy laws, so they can’t GET the records without a lot of transferring of paperwork.

Medical Building and ramps

Meanwhile, I still have to go to the lab and get my tests redone and maybe  (MAYBE!) they will be done before I go to the hospital where they will take my entire medical history again and it will be the same as the ones they’ve taken before including all my medications.

ALL of this information — everything that has ever happened to my body — is in their computer including the heart surgery, both replaced heart valves, the bypass, pacemaker, and cardiomyectomy. They have the serial numbers for each implant (I am full of serial numbers) and serial number for both of my breasts that are ALSO implants. I will never be an unidentified corpse on a slab because all of my body parts have their own USB code. Unless they fix that computer, too.

Everything has been put on their computer. But, since they “fixed” their software program, they can’t find anything.

And then there was the telephone which doesn’t work and the ten pounds of mail I have yet to finish sorting.

That’s been my day. How has yours been? You have to admit that only a determined 72-year-old woman could make it through this sort of day.  When I was done, I cooked dinner. Mussels with spices, tomatoes, Worcestershire Sauce on angel hair pasta. And I cleaned up, too.

THE TIMELINE – Marilyn Armstrong

Finally, last night, I figured out that I’ve got between 10 and 12 years to live. It would be great if it were longer, but that’s pretty much what I’ve got and I want to live them well.

The math isn’t complicated. Hopefully, I’m finished with cancer. As much of my gastrointestinal tract has been removed as can be removed. My spine is completely calcified and most of the time, I can barely move.

The valves and Pacemaker they put into my heart are stamped and dated. They have time limits and the clock is ticking.

I’ve got two replaced heart valves: the mitral and the aortic.. Both are made from animal parts (valves?) and have an average life of 15-years. I’ve had them for nearly five years. They can last a little longer — sometimes as much as 17 years or as few as 12. Four down, let’s say ten to go?

Then there is the Pacemaker. The battery runs out in about 10 years, at which point they will want to open me up, remove the old pacemaker and replace it with a new one with a new battery. I think maybe since they have made major improvements in Pacemaker technology since they put this one in me four-years-ago, I could have this one replaced with one of the newer ones. Better batteries. And not metal.

That way, I wouldn’t have to wait until my eighties when I doubt I’ll want to go for heart surgery, minor or major.

My post surgery heart pillow; You grab it and hug it when you need to sneeze or cough, it is supposed to make you feel better. It doesn’t.

The valves are a larger problem. I know they are making progress designing replacement heart valves which last longer and work better, but whether they will be ready for me – in this lifetime – remains to be seen. As it stands right now, I have about 10 years. Maybe 12. After that, it’s time to say goodbye.

Unlike most people, there’s an actual clock ticking in my chest. Optimism will not make a difference. The timeline was created the day they did the surgery — five years this spring. The best I can do with it is pay forward on the Pacemaker (if they let me) and hope for the best with the valves.

Meanwhile, I am coming off a two-week remission of pain and misery using Prednisone.

I know Prednisone has a lot of side effects, especially for a woman my age with heart issues. Nonetheless, this two weeks using Prednisone has been the best two weeks I’ve had in years. I’ve been able to walk upstairs. Down is harder because it’s a balance issue, but I can walk upstairs. Slowly, but I can do it. I’ve been able to sleep in a comfortable position … which means I’ve been able to sleep.

I can get out of this chair without pushing myself up with my hands. I didn’t have to limp between the kitchen and the bathroom. In short, I have felt like I’m really alive. Now that I’m down to my last four tablets, I have been doing serious thinking about how I want to spend these next ten years.

I probably can’t take a full run of all-the-time Prednisone. That would more than likely wind up ending my life sooner rather than later … but maybe intermittent Prednisone? Like two weeks on, a month or six-weeks off? If I’ve got a limited lifespan, I would like to live it. Enjoy it.

I want to be able to move and not spend most of my life fending pain.

I’ve run out of options. I can’t take any NSAIDs. I am already taking narcotics light and I don’t see heavier doses as a direction I want to take. It doesn’t make the pain go away and it makes me stupid. What’s more, I’m allergic to most of them.

So, following the holidays, it’s time for a long, complicated talk with the doctor.

I can hope science will make a great leap forward that will change my future. Otherwise, I would like to make sure I don’t spend the remainder of my limited time battling pain. And you never know. They might find the miracle I need. It could happen.

Sensible ideas are welcome. I have choices to make and it’s time to make them.