NSR.
Normal sinus rhythm.
It means Victor's heart is beating regularly. Slower. Normally.
And that makes my heart glad.
I've heard from many of you, wondering how my sweet Victor is doing these days. And I am happy - ecstatic actually - to report that he's actually ... better!
Bless his cardiologist who refused to give up on his theory that the entire cardiac weakness was the result of Victor's heart growing weary of beating reeeeeeeeally fast for a reeeeeeeeeally long time.
I was skeptical.
Now I'm a believer.
We're lucky that Miracle-Man suit still fits Victor to a T.
Whew.
I know this reprieve may have a limited life. Things might get worse. But why focus on THAT? I want to pay attention to the 98 percent of life that IS working. And there's a lot of positive stuff going on.
Thank you for your concern. Thank you for your prayers, your healing energy and your warm thoughts.
They helped. A lot.
Showing posts with label Victor. Show all posts
Showing posts with label Victor. Show all posts
Friday, March 21, 2008
Wednesday, January 16, 2008
Healing a heart
There is an enormous gap between my last post and this one. And a good reason for it. So what IS that reason?1. I have been busy? Yes, but that's not the reason.
2. Life has gotten in the way of my writing? True, but that's not it either.
3. I've been reluctant to post about Victor because I'd like to post good news and it hasn't been all that good....Now that rings more true.
Honestly, he's doing fine, considering the situation. A quick factual update: after months of trying to get his blood thinner to the right levels - it was up a little, down a lot, up a bit, then down - the docs finally did a cardioversion (shocked his heart after administering a lot of meds to regulate the rhythm) in late December.
I was amazed at his heart rate - it went from 120+ with lots of meds on board, to less than 80. A huge improvement. I was happy as a little lark - to have the procedure over, and to have his heart back in "normal sinus rhythm."
Until last week. On Tuesday night, when I was at GardenSpirit hosting the monthly Meetup group for ADHD adults, his heart retreated to its old patterns ... 120 heart rate, back to atrial flutter again.
Damn. Sorry for the language, but....damn.
And today we find out that the new heart medication is reacting with one of his antibiotics for cystic fibrosis....and one of them has to go. To complicate matters even more, the same heart med is suddenly unavailable to the pharmacy. Pfizer has simply stopped shipping it. What in the world??
Next step? Figure out meds, but more importantly, move ahead with an even more scary procedure, radio frequency ablation. I read about it long ago on the 'Net - the doctor goes in with a skinny little probe and essentially kills off parts of the heart that might be sending the wrong electrical impulses to the atrial part of the heart.
Sounds awful. Sounds dangerous. Sounds like a last ditch effort to save him.
I'm all for saving him. I want him around a long time.
After such a nerve-wracking January 2007, this news isn't the best. I am exhausted, frankly. Trying to be optimistic. Trying to live normally. Trying to breathe and be grateful for each day.
I am grateful, trust me.
I am also greedy. I want more days. More nights. More longevity and hugs and sweetness and love.
A neighbor and good friend who lives at the end of our street lost his wife two weeks before Thanksgiving 2007. I spent some time with him recently and he told me that Nancy's body just wore out from the onslaught of drugs and transfusions and procedures.
I suspect that's what will happen for us. Victor has been so strong for so long. He fights the fight better that anyone I know. And yet, none of us get out alive. We all die. He will too.
I refuse to accept it in the near future. But how the heck much longer can he bounce back? My own heart hurts thinking about it...
Sunday, May 20, 2007
Hope in an amber bottle
Victor has always been a poster child for the pharmaceutical companies. He's what doctors call "compliant." He takes his meds every day, at the appointed time (sometimes it's a bit ridiculous to stop everything so he can pop his 7 pm vitamin), he never misses a dose and on Sunday nights he faithfully refills his weekly pill dispenser.
It's a many-hued assortment - a virtual rainbow of chemicals that work this way and that (but not at cross purposes!) to keep him humming along. With the heart ailment, a new array of colors, sizes and doses were added. It's a handful. More medication than I would care to take. I avoid pills like the plague.
But it's not my life that has been prolonged for years by inhalable antibiotics and their ilk. And now, Victor's life may again be revived by a stiff cocktail of pills that look pretty much like TicTacs. They work differently, though. Quite differently.
The most recent doctor visit, a sure bet for hospitalization and heart monitors, yielded instead a 90-day trial of stronger drugs. After all the drama, we are now in the "wait and see" pattern.
What's the prognosis? Who knows?
All I know is that Victor's question never would have crossed my mind. Not while we were sitting in the cardiac intervention unit, not later at home. But Victor piped up instantly: "Does this mean there's a chance the condition is reversible?" I thought he had lost touch with reality, that the cardiologist would pooh-pooh him and pat his shoulder.
Instead, he nodded. "Yes," he said. "We've had folks on the transplant list who were able to go home without surgery." It hit me like a cold wave of froth. Hope. Amazing hope. Lighter step hope.
Reversible. What a wonderful word. There are no guarantees, of course. The future could look just as grim as it did before the appointment. I don't care. Victor believes he's feeling better. And though we have weeks and weeks before we actually find out whether he IS better, I am living life as though he IS.
Still going to keep that appointment to get the finances in order. Still going to update the wills. But that's what regular people do anyway, right? Right?
It's a many-hued assortment - a virtual rainbow of chemicals that work this way and that (but not at cross purposes!) to keep him humming along. With the heart ailment, a new array of colors, sizes and doses were added. It's a handful. More medication than I would care to take. I avoid pills like the plague.
But it's not my life that has been prolonged for years by inhalable antibiotics and their ilk. And now, Victor's life may again be revived by a stiff cocktail of pills that look pretty much like TicTacs. They work differently, though. Quite differently.
The most recent doctor visit, a sure bet for hospitalization and heart monitors, yielded instead a 90-day trial of stronger drugs. After all the drama, we are now in the "wait and see" pattern.
What's the prognosis? Who knows?
All I know is that Victor's question never would have crossed my mind. Not while we were sitting in the cardiac intervention unit, not later at home. But Victor piped up instantly: "Does this mean there's a chance the condition is reversible?" I thought he had lost touch with reality, that the cardiologist would pooh-pooh him and pat his shoulder.
Instead, he nodded. "Yes," he said. "We've had folks on the transplant list who were able to go home without surgery." It hit me like a cold wave of froth. Hope. Amazing hope. Lighter step hope.
Reversible. What a wonderful word. There are no guarantees, of course. The future could look just as grim as it did before the appointment. I don't care. Victor believes he's feeling better. And though we have weeks and weeks before we actually find out whether he IS better, I am living life as though he IS.
Still going to keep that appointment to get the finances in order. Still going to update the wills. But that's what regular people do anyway, right? Right?
Monday, March 19, 2007
Nailing down a cloud
We expected last week's test results to be a little more encouraging. They weren't.
Victor, my adored and adoring husband, still has a serious heart problem. That, on top of his ordinary, old, everyday cystic fibrosis.
Yeah, right. Living with CF for nearly 56 years is anything but ordinary. There are only 30 or so men in the world still alive with this awful disease that clogs lungs and causes infections that can kill.
But CF is a familiar monster. After almost 17 years together, I have grown accustomed to the loud buzz of the nebulizer that delivers his medications three times a day. I've learned to locate Victor in a crowded room by listening for his CF-influenced cough. And I know the dangers of the cold and flu season with their inherent possibilities of bringing in yet another lung infection.
That's when the heavy artillery comes out: IV antibiotics and home care. Only rarely has Victor been a patient at Duke Hospital, even though he spends a lot of time there. He's a physician and a professor of medicine in the Medical School, so his interest is professional. It doesn't hurt that he knows his away around a PIC line and can monitor his own health.
He knows the significance of his latest tests, too. He is acutely aware that his heart has not improved even after beta blockers and blood thinner. The combination of CF and weak heart muscles make him breathless even when he climbs the stairs to our bedroom at night. It scares the hell out of me. He has started to prepare me for his inevitable decline.
I claw and fight at it like a crazed cougar. I won't have it. I refuse to allow it. Victor is a miracle man and he has a few last minute miracles in his back pocket. Right? Then I dissolve into tears, hearing his voice in my head, "I'm not afraid to die, but I hate to leave you alone."
Last night, I woke up about 2 am and listened to him breathe. Tight, short little breaths that gradually get softer and softer, then grow louder again, a cycle that repeats again and again. he tells me he is out of breath during the day. It won't be long before he will need oxygen. And soon after that, he'll be staying home instead of going to his office, too winded to walk the path from the parking lot to his office at the hospital.
I snuggled up to him, feeling his warmth and he stirred, too. "Do you want me to cuddle to your back?" he asked, sleepily. No, I said. I want to smell you. "To smell me?" he repeated. Yeah, I want to breath deep and take in all the Victor essence I can possibly hold. I want to capture you in a bottle so that when you're gone I will still be able to feel your touch, your warmth, your Victor-smell.
It's like trying to nail a cloud to the ground, beautiful and tantalizingly elusive.
So how do I hold onto a memory that is so fresh today, yet that will vanish when he's gone? I wish I knew. Nails aren't working worth a damn.
Victor, my adored and adoring husband, still has a serious heart problem. That, on top of his ordinary, old, everyday cystic fibrosis.
Yeah, right. Living with CF for nearly 56 years is anything but ordinary. There are only 30 or so men in the world still alive with this awful disease that clogs lungs and causes infections that can kill.
But CF is a familiar monster. After almost 17 years together, I have grown accustomed to the loud buzz of the nebulizer that delivers his medications three times a day. I've learned to locate Victor in a crowded room by listening for his CF-influenced cough. And I know the dangers of the cold and flu season with their inherent possibilities of bringing in yet another lung infection.
That's when the heavy artillery comes out: IV antibiotics and home care. Only rarely has Victor been a patient at Duke Hospital, even though he spends a lot of time there. He's a physician and a professor of medicine in the Medical School, so his interest is professional. It doesn't hurt that he knows his away around a PIC line and can monitor his own health.
He knows the significance of his latest tests, too. He is acutely aware that his heart has not improved even after beta blockers and blood thinner. The combination of CF and weak heart muscles make him breathless even when he climbs the stairs to our bedroom at night. It scares the hell out of me. He has started to prepare me for his inevitable decline.
I claw and fight at it like a crazed cougar. I won't have it. I refuse to allow it. Victor is a miracle man and he has a few last minute miracles in his back pocket. Right? Then I dissolve into tears, hearing his voice in my head, "I'm not afraid to die, but I hate to leave you alone."
Last night, I woke up about 2 am and listened to him breathe. Tight, short little breaths that gradually get softer and softer, then grow louder again, a cycle that repeats again and again. he tells me he is out of breath during the day. It won't be long before he will need oxygen. And soon after that, he'll be staying home instead of going to his office, too winded to walk the path from the parking lot to his office at the hospital.
I snuggled up to him, feeling his warmth and he stirred, too. "Do you want me to cuddle to your back?" he asked, sleepily. No, I said. I want to smell you. "To smell me?" he repeated. Yeah, I want to breath deep and take in all the Victor essence I can possibly hold. I want to capture you in a bottle so that when you're gone I will still be able to feel your touch, your warmth, your Victor-smell.
It's like trying to nail a cloud to the ground, beautiful and tantalizingly elusive.
So how do I hold onto a memory that is so fresh today, yet that will vanish when he's gone? I wish I knew. Nails aren't working worth a damn.
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