Wednesday, June 17, 2015

STILL not dead! Midyear health update

Dear loyal readers,

It's been awhile since I let everyone know what's going on, so I'll start with the latest news for those of you who work for a living and just want the highlights, and then I'll do a little "how we got to here" for those of you who can't sleep or are in the bathroom and need something to read. Or for the two or three of you who are detail geeks. Trust me, if I hadn't written it, I wouldn't have made it to the end, so no judgment.

So first, the latest news: Vic is having surgery tomorrow (Wednesday, for those of you who aren't reading this on Tuesday). It's an ablation, where they go in and, like, scrape the scar tissue out of your heart. Egads. They'll also be adding a third wire to his defibrillator, which will turn it into a pacemaker that will pace his heart full time rather than just when his heart decides to misbehave. We are fine. He is a little anxious about the surgery (who isn't?), bored with being in the hospital (even though he has every iDevice known to man, five streaming services and free WiFi) and tired of being a lab rat (see below). As for me, I come from sturdy pioneer stock. And besides, I have to be fine. What other option is there? Worrying does nothing. I can't do the surgery. I can't change the outcome. We have done everything we can to make it better. I'm not in denial. I know the risks. I know what can happen. I choose not to dwell on them. The power of positive thinking and all that. Okay? Okay. (If you haven't read The Fault in Our Stars, that will be meaningless to you.)

And second, how did we get to here? Well, if you don't know about his heart problems, you can read all about them here:

Death: The Prequel: A stirring rendition of Vic's near-death experience in 2010.

Death: The Sequel: A stirring rendition of the first time Vic's defibrillator went off.

Still not dead! But also not driving.: A stirring rendition of when Vic passed out at the Safeway and had his first ablation.

I wouldn't, but then I wrote them so I don't have to.

Caught up now? Great.

So, after the first ablation, everything seemed to be going fine. Then we went for the first follow-up visit in February, and he was feeling pretty funky on that day. Turns out he had, like, seven instances of ventricular tachycardia (V-tach) in, like, the hour after we left the house to go to the appointment. His doctor wanted him to check into the hospital immediately, but he (the doctor) eventually decided it would be OK if he (Vic) just upped the dosage of this drug he was taking, amiodarone, from 200 mg to 800 mg.

Vic did not want to do this. He was not particularly fond of the drug because it was making him extremely sensitive to light and had a lot of side effects, such as damage to the liver and lungs. (But not the kidney. And this is important because—say it with me—he only has just the one.) But it was that or check into the hospital, so he went with the increased dosage. He did that for a week and had no V-tach incidents, so the doctor reduced the dosage to 400 mg. Still higher than anyone likes, but the lower dosage lowers the risks.

After that, he didn't have any V-tachs, but he was dizzy a lot and often felt like he was going to pass out. Then one day he did.


He was just taking our bird feeders out and BLAMMO. Fell face first into our rock lawn.

But when we went to the doctor's office, they hadn't registered a V-tach incident. So now he seemed to be passing out for no reason whatsoever. They adjusted some medications and reduced the monitoring device to a lower level. (He has a device that transmits data from his defibrillator if he has a heart event that occurs at a certain threshold--for example, if his heart has an event where it's beating at 140 beats per minute, that would register. 139 BPM would not. After the reset, it was registering anything 120 BPM and above.)

Still no incidents of V-tach, but still feeling dizzy. So the doctors tinker with his medications some more and decide, while we're at it, we should get a blood test.

So we go in on Monday the [whatever date it was]. Monday afternoon, the doctor calls and says "YOUR LIVER ENZYMES ARE THREE TIMES NORMAL. Don't panic, but STOP TAKING THE AMIODARONE IMMEDIATELY." (Emphasis mine.) And we went in to see the doctor the next day.

There were a lot of options at this point:
  • Get another ablation (on the last ablation, the doctor stopped short of getting this one big piece because (a) he'd been operating for six hours already, and (b) it would leave Vic dependent on a pacemaker, which Vic did not want at the time but has warmed to since)
  • Put another lead into his heart (his defibrillator has two wires [leads] that go into different chambers of his heart; they could add another lead to go into another chamber—and this would also make the device a pacemaker)
  • Do both
  • Try other drugs
We decided to take a wait-and-see approach. They didn't want to do either surgery right away anyway, so we scheduled a follow-up appointment at the doctor's office and went on our merry way.

Last Thursday (June 11), Vic sends me an instant message (because I'm at work). He passed out again that morning (this time in our driveway, damage not as significant as the face plant in the rocks), and the doctor said Vic had been having a lot of V-tachs. 25 in the previous 24 hours, in fact. The doctor called it a V-tach storm. He wanted to schedule the ablation for June 17. Vic said, "Oh, I can't do it on June 17. That's Patty's birthday." He tells me this. I tell him, in a tone that I'm sure came across on IM, "Oh, you call that doctor back RIGHT NOW and tell him you'll take the June 17 slot." Vic says, "Oh, but I don't want to ruin your birthday." I say, "OK, imagine this. I take off for my birthday. We have a perfect day. Yummy dinner, fresh air, cake, presents. The next day YOU DIE BECAUSE YOU DIDN'T HAVE THE SURGERY ON MY BIRTHDAY. DO YOU THINK THAT WOULD RUIN MY BIRTHDAY? HMMM? DO YOU???" He says, "OK. I'll reschedule."

Then he calls me a half-hour later and tells me the doctor wants him to check in to the hospital that day so they can monitor him before the surgery. This delights him (not). Meanwhile, I'm at work with no way home. (Because I take the bus. I can get a bus at 11 that will get me home at 1. This seems a little to late.) Fortunately, a few months ago, my boss made me promise (we did a pinky swear) that if I ever needed a ride home for just such an emergency, I would tell her and she would take me home. Which she did. (Awesome boss. I know—you're jealous. Suck it.)

So Vic has been in the hospital since last Thursday. He loves it there. LOVES it. Because he doesn't feel sick. In fact, he never really has. Oh, sure, the dizziness. And some general feelings of gunkiness (it's a medical term; look it up). But he's taken Wags on their walk every day, and he even cleaned the house the morning he went to the hospital ("I didn't want you to be alone in a dirty house," he said). We used to describe his condition thusly:
  • Me: In between dying, he's fine.
  • Him: I'm fine. Until I'm not.
Our new metaphor is this: The chassis looks great, but there's some trouble under the hood.

Since he's been in the hospital, they've tried myriad things (not "a myriad of"—that's just wrong):
  • Heart doctor: Let's do the ablation tomorrow. Or just the third wire. Or maybe change his drug. Or maybe do one of the surgeries Monday. [We end up deciding on the drug, sotalol.]
  • Kidney doctor: No, that's hard on the kidneys. Kidney. Let's give him a lidocaine drip.
  • Heart doctor: He's doing better. Let's send him home tomorrow.
  • Kidney doctor: Hey, his creatinine level (it's something that tells you how the kidney is functioning—just go with it) is 3.0 (a "good" level is 1, but they're happy with 2). Let's give him a saline drip. And don't send him home.
  • Heart doctor: Hey, his creatinine levels are better, but his liver enzymes are high. Let's give him a different drug. And schedule some surgery for Wednesday. Not sure which one yet.
  • Heart doctor: Shoot, his defibrillator went off yesterday. We need to shit or get off the pot. (These are the only words in this tale that actually came from the doctor's mouth.) Let's do both surgeries on Wednesday. And then let's keep him here the rest of the week.
Now, lest you think at this point that I think these doctors are all a bunch of morons who don't know what they're doing, I do not. Let me emphasize that: I DO NOT. It's just that there is a lot going on. Why are the liver enzymes high? Why is the creatinine level high? Is it because of the amiodarone? Because of a combination of the amiodarone and something else? Because of the V-tachs? There are a lot of possible causes and a lot of possible combinations of causes. So it's hard to pin down the right thing.

But I have faith in our doctors. The primary doctor, Dr. Oza, is coordinating with Vic's primary heart doctor, Dr. Reynolds, and one of the other doctors in his practice, Dr. White—both of whom Vic has been seeing for 10 years. They've been managing his condition very well—it's only been recently that things started acting up. He's also working closely with Vic's nephrologist (kidney doctor) to make sure that one kidney stays healthy. Today he asked for a consult with a gastroenterologist, who really helped us put the liver thing in perspective—Vic's enzymes are high (in the 300s), but similar patients in similar situations have had enzymes in the 1000s. And yes, the surgery (and anesthesia) will be hard on the liver, but he is convinced that the V-tachs are causing most of the damage—not the drugs. Fix the heart, you fix the liver. And he himself is coordinating with his partner of 30 years, one of the senior staff members at the University of Michigan Medical School. No one is sitting in a room with a slot machine saying "What should we try next. Come on, lucky number 7!"

Also, the nurses and nurses aides love Dr. Oza. Patient reviews can tell you how much patients liked the doctor and how the doctor made them feel and even whether they had good outcomes. But nurses and aides know things patients don't. I trust the nursing staff.

Finally, Dr. Oza has been very open about treatments and the options we have (other than driving—don't ask), he's conservative (but aggressive when he needs to be). He gave up his weekend plans last weekend to check in on Vic every day. He takes the time to explain things to us even when we know he doesn't have the time. It took me awhile to warm to him, but I now have complete confidence in him. I know he will take care of my husband and give us many more years together.

So that's our story. I did not do a spell check, nor did I reread for any grammar errors. If you find any, do not point them out or I will unfriend you.

And no, I do not need anything. Waggy is in doggie daycare until Thursday, the house is clean (thanks to Vic), the yard has been weeded (thanks to my brother-in-law and my nephew), and the trash has been taken out (thanks again to my nephew, who also cleaned my kitchen, if you must know). I have a book and my crochet to keep my head and hands busy tomorrow, and I have promises of baby pictures being texted to me. (I also take dog and cat pictures and, who am I kidding, anything that's cute.)

Who made it all the way to the bottom? You? Then you are an amazing friend. Or maybe you were just in the bathroom for a really long time. I hope you're feeling better.

Let me leave you with a video of Vic and Wags taken at the hospital on Sunday. Wags was very happy to see her dad, as you can see.


(You probably won't be able to see the video on your mobile device. Check it out on your desktop or laptop.)

14 comments:

Anonymous said...

Made it to the bottom. All good wishes and tons of hugs from me and the herd.

Love you guys.
Mary

Wendy Crichton said...

I made it too and read every grammatically correct sentence and perfectly spelled word. I'm crossing fingers and toes for you both today. Sigh. (To Universe: Enough BS already for the Loves!) Sending loads of wishes for strength and general awesomeness.

Anonymous said...

You make what would normally be a dull medical report, very entertaining and informative. And yes..........I too made it to the bottom :) Please disregard all my grammar mistakes in these short lines because I probably have plenty. Fortunately.........that's not what I've been placed on this earth to be good at!!! :) Hugs and best wishes for a fantabulous surgery and speedy recovery! Michelle :)

Jeff Hammond said...

My heart is with you today, dearest Patty, and I am sending a flood of good thoughts Vic's way all day today. Let me know how it goes. And if you ever need to talk call me, please! Love, Jeff. PS: And I love your writing!

Julie Leidel said...

I love you so much Patty, you have no idea. Such strength and a great sense of humor through everything. You and Vic together are an inspiration. Sending all my love to your both!

Unknown said...

Ditto to what Jefe wrote (I never try to top his prose, so I just steal it). Hugs from here, my friend. -- Sue Z.

Anne Zander said...

It's Anne....Taking the time to post all of this on the Blog is a great job. You brought all of us up to date and I am sure that was not easy to do. I have been keeping you both in my thoughts and prayers.....like so many others. I can't wait to see you and give you both a hug or two or three.
Love always

Deb said...

I made it to the end, too. Love you both and keeping both of you in my prayers!
Debbie

Anonymous said...

I will keep Vic in my prayers.

I worked with Vic at IBM in the IBM club and playing softball (a million years ago)... was Diane Schiewetz (now Diane Scott). Please give him my best.
Diane

Ron said...

Made it. Thanks for a very informative and entertaining report on Vic's condition and how you both are dealing with it. Think about you both every day . . . . . Usually more than once a day. Prayers and well wishes. Hope to see you both soon.

Colette said...

I read everything on accounta I knew nothing. Sheesh! Go big or go home, huh? Obviously, I hope the heart and liver and kidney all get their collective acts together and behave. Enough shenanigans! (Have you tried reasoning with them?) I'm thinking of you and Vic and sending good vibes.
However...still scratching my head over why she's called Wags.
:-)

Patty Love said...

I really need to get a new blogging format, because I would have liked to respond to each of these comments individually. Instead, I'll just say thank you for reading--a little or all the way to the bottom--thank you for your kind/humorous/inspirational words, and thank you for thinking of us and sending your thoughts/prayers/wishes/advice. We have the best family and friends. We are so lucky. <3 <3 <3

Denise said...

Hi Patty, I just wanted to say thank you for sharing your story. My dad was just diagnosed with the same type of cancer and I ran across your blog in one of my many google searches for more information. He's in week 4 of treatment - it's getting pretty tough. I'm going to print this off for him to bring a little pick me up to his days. I think it will help him to get through this dark time.
Best wishes and strong health to you and Vic!
Denise

Patty Love said...

Denise, thank you for reaching our and your kind comment. I'm so sorry for your dad—four weeks is just enough time to feel super crappy. Fortunately, it's also when you start to see the light at the end of the tunnel, even if it is a pinprick. Please email me if you need to do any venting or have any questions (from you or your dad). My coworker's dad just went through this as well, and we answered a lot of questions for them. I also had a "cancer buddy"—a woman whose husband went through THE SAME THING just the year before we did. It's invaluable to have someone whose been there. I'm thegrammarqueen@msn.com. I wish all the best to you and your dad and send you all my strength and resilience. <3