Name: margalit
Location: Massachusetts, United States Professional writer, educational advocate, opinionated ultra liberal mother of 18 year old twins, living life in the slow lane due to hypertrophic cardiomyopathy, congestive heart failure, and diabetes.

email: margalitc at yahoo dot com

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Wednesday, February 04, 2009

Congestive heart failure taking its toll on me

My visit to one of my three cardiologists today did not go well. I wasn't expecting it to. In fact, I twittered right before I left that I was pretty sure she was going to put me in the hospital. I've felt just terrible for days now, out of breath, coughing constantly, barely able to get around. I've been stuck in the house, a combination of terrible weather and snow piled sky high in our yard, and my being unable to traverse the walkways to the driveway, etc. It's been too much for me. I can barely get up the stairs these days. I'm sick, I know I'm declining, and I know that there's a long way to go before I end up at the top of the transplant list.

My doctor was concerned. Since we have both determined that for me, an ablation isn't the right procedure due to my particular heart anomaly, there are literally no further options other than getting sick enough to be on an artificial pump while I wait for a new heart. A new heart that may or may not ever come.

She increased my Lasix greatly for the next week, and then I go back to see her. If I feel worse, I need to go to the ER. If I feel like I'm getting better, then she's going to call off the dogs at next weeks visit. In the meantime, I'll be sitting on the toilet at least 3-4 hours of the day, twice a day. And isn't that gonna be fun filled!

I hate feeling so poorly. My O2 was fairly low at 89, which means I'm not getting enough oxygen to my brain. I feel like I've got aphasia because I forget so many words these days. I am not on oxygen at home, which is my choice. But maybe I should be. I think it's like the wheel chair. You know you need one, but it's one more identifying step to the world that you're sick. That's hard. I hate losing my independance. I want to be able to do the things I need to do to run a household, but that's becoming harder and harder. I've just lost the will to fight during this horrid winter.

So I'm scared and worried about my kids and how this affects them. They know I've been sick, but they pretend that it isn't interfering with their lives. In other words, they don't buck up to help around the house or to help me without growling. They're teenagers. Self-absorbed is their middle name. They don't like to talk about our situation. And there is no support group for kids of parents with heart disease. The Wellness Community focusses on cancer in our city, and unfortunately they were involved in the Madoff madness and closed down this week. Although the kids both have therapists, they absolutely do not want to discuss how they feel about my illness with them. Plus, they have the extra added worry of developing this heart condition themselves. It's genetic. It often shows up in the 20's or 30's. Can you imagine what it does to them to know that they have a ticking time bomb instead of just a ticking heart? It makes me so sad.

The point is, I'm not whining. I got the raw end of the deal. I get it. But it is so hard sometimes. This is one of those times. I've got so much to do, so much to live for, but I've had to accept that much of my "bucket list" isn't going to happen. I don't think I'm ever going to snorkel on the Great Barrier Reef or visit India. Right now, I'm just thankful to know I can get to the CVS and pick up my myriad prescriptions. Which is a very good thing.

This month is Go Red for Women month, supporting women with heart disease. Heart disease is the number one killer of women, more deaths due to heart disease. than all cancers combined. Learn the warning signs. Never assume that it cannot happen to you. Learn your risk factors. Donate to heart research. And wear a lot of red this month!

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Blogger Nina said...

Was worried when you didn't have a post up the AM. Pleeeeze listen to your body and do whatever it needs.
You have a good medical team behind you and the kids will cope. Wish I was closer.

4/2/09 4:22 PM  
Blogger Nate said...

All my thoughts/prayers/good vibes are with you today, Margalit.

4/2/09 5:19 PM  
Blogger WitchScribe said...

Here's sending you tons of uplifting and healing vibes. In a world where were forget to be thankful, I read stories like yours and are reminded how truly precious our lives are.

Bless you & and your family.


4/2/09 5:43 PM  
Blogger Daisy said...

You didn't sound whiny to me. Here's wishing you rest and support - even from those darn teens of yours.

4/2/09 7:26 PM  
Blogger Blog Antagonist said...

Oh hon. I'm so sorry. My mom has COPD with congestive heart failure. I know every day is a struggle. And her doctors have told her the same thing...she has to basically be at death's door before she qualifies for a transplant. She is on oxygen, which helps with her quality of life, but she feels like a dog on a leash.

All my best to you. I hope that they can do something to make you feel better.

4/2/09 8:58 PM  
Blogger bethany actually said...

You write with such passion and conviction, I can't help but think you have lived your life much the same way. Not much to regret, I'd bet.

My prayers and thoughts are with you and your kids!

4/2/09 10:50 PM  
Blogger Fairly Odd Mother said...

I hope things improve for you soon! Take care of yourself---sending best wishes your way.

4/2/09 10:57 PM  
Blogger Robin said...

Holding you close in my heart.

5/2/09 2:06 AM  
Blogger Rhea said...

That sucks. Just know we are all pulling for you!!

5/2/09 9:59 AM  

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