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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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Thursday, August 09, 2007

Making a Quick Right Turn Onto Crap Blvd.

One of the most disturbing factor of congestive heart failure is that it tends to creep up slowly on you, and then one day you wake up with severe edema, an inability to breathe without coughing up a lung, and the distinct displeasure of being out of breath when you walk more than 5 feet in any direction. This happens in the heat much more easily than it does at other times of the year. It also happens when humidity is involved.

So guess what my feet look like right now? Oh, like my ankles have incorporated softballs or grapefruits under the skin. The tops of my feet are so swollen that it's physically painful to walk. For those of you that experienced edema during pregnancy, multiply it times 100 and you'll get an idea of what this feels like. My skin is stretched so tight on my feet that it hurts for them to be even lightly brushed by fabric. Shoes? Out of the question.

Is this not the most pathetic picture of feet you have ever seen. My toes are sausages. There is the cat induced wound, and then the puffy foot tops leading into the ankles with grapefruits inside. I HATE THIS.

In order to relieve my body of the extra water, I take Lasix, which is a strong diuretic, and it tends to have 'unpleasant' side effects. Like, oh, peeing every five freaking minutes for hours on end. It tends to inhibit my ability to go anywhere and do anything because I literally can't be away from a bathroom for more than maybe 10 minutes. Fun!

CHF isn't a fun diagnosis to hear. It is even less fun to live with. Besides the medications I have to take, and the amount of rest I have to do every day in order to function well, and even the diet I have to follow, I get horrid muscle cramps from dehydration at the same time I'm swollen with water. Trying to balance the fluid intake with the fluid outtake is hard, but in the heat, it's almost impossible. I'm only allowed to drink 32 ounces of liquid per day. Any more overloads my heart and sends me into such bad heart failure that I end up in the hospital's cardiac ward. I will do just about anything to stay out of that ward. It smells of death.

Because my hypertrophic cardiomyopathy has led my heart into CHF, there is very little that can be done besides a heart transplant. I've been on the transplant list for a few years, but I'm way way down the list because I'm still functioning at a reasonable level for someone with my heart disease. But with each passing year, my heart grows weaker and the inability to pump adequate amounts of blood to my body becomes more advances.

A heart transplant scares me. I mean, it really really scares me. Besides the fact that a transplant curtails much about your life that was possible pre-transplant, it is a huge surgery that is not easily survived. Sometimes at night, when the house is all quiet, I start thinking about what it would be like to get someone else's heart implanted in my body. I don't really know how to articulate how frightening this is to me. It's a heart. You have to have a working heart to be alive. I'm so afraid of this option that I can barely even write about it. How will I care for my children post surgery? Who will care for me? What kind of life can I have? How much more medication will I have to take in order to prevent rejection? The whole topic is mind-boggling. But it's also reality for me.

The more stress I experience, the more my heart wants to shut down. I honestly cannot handle stress like I used to. If things get out of control, my body actually reacts physically. It's been stressful here the past few weeks. Lots of little stuff that is compiled into one huge blog of freakout stress. We have another full month before school starts. I'm about to jump out of my skin.

My kind of heart disease is the leading cause of Sudden Death from exercise or exertion. All of those sports players you read about that drop dead on the court or the field. Cardiomyopathy. It's not a benign problem. It's serious and it's scary. Most of them time, I just live with it and do the best I can under some very restrictive conditions. But sometimes, just a small subset of the time, I want to scream about how scary this is and how it's going to kill me, and how I just want, for one freaking day, to have a normal heart and a normal life.

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12 Comments:

Blogger Dayngr said...

My mom was born with a heart condition and I lived my whole life hearing about edema and diuretics; watching her bleed like a stuck pig because of the blodd thinners and deal with all the other dreaded things that go along with heart illness. I wanted so much to help but there was nothing I could do to make things better.

I was lucky. My mother lived to be 74, she passed away just a few months ago. As much as I knew she was ill and as blessed as I was to have her as long as I did it still felt very unexpected.

As a daughter (and now a mom) I'd say worry about the things you can actually do something about, love on those kids every chance you get, put everything in writing in case God forbid happens and never let me wonder if they were loved. Write the story of your life because when you're gone, even if it is 100 years from now, you're kids will continue to have questions they wish they had the answer to about your life.

Wishing you chicken soup for your soul and health for your heart!

xxoo

9/8/07 3:33 PM  
Blogger Robin said...

I'm sorry that you have to deal with this. The pain, the fear. All of it.

I'm 7 hours ahead of you and usually right here on my computer during those dark nighttime hours. You don't have to be scared alone. I'm here, and I'll listen.

9/8/07 4:01 PM  
Anonymous Miz S said...

Do you have family around?

9/8/07 5:19 PM  
Anonymous LVGurl said...

Wow. Just, wow. You are incredibly strong to get through each day.

Thank you for sharing your thoughts and feelings, I'm sure it can't be easy.

9/8/07 5:27 PM  
Blogger Major Bedhead said...

Ah, Margalit, that just sucks. I'm sorry. I wish there were better words that would help alleviate some of your fear, but they're only platitudes and I've sworn off those.

I agree with dayngr - keep writing. The way you write about your kids is great. You write with intense love but you don't sugar coat it.

9/8/07 7:03 PM  
Blogger Blog Antagonist said...

My mother has CHF brought on by COPD which was improperly diagnosed (for a freakin YEAR) and resulted in even more damage to her heart. She takes the same medication, and it really is a nightmare for her. Her feet look like that sometimes too, but as far as I know, her fluid intake is not restricted. The heat is very hard for her to handle, regardless.

I really feel for you. I don't think my Mom could survive a transplant, and at this point, she would not qualify to be put on the donor list as her chances of surviving the surgery are not good.

10/8/07 12:09 AM  
Blogger madamspud169 said...

And there was me sitting at my p.c feeling sorry for myself with my various health issues (diabetes, psoriasis, mobility issues & arthritis) & then I read your post. I feel totally ashamed now of my little sulk, I needed that reminder that people have it worse than me & that I am in fact lucky.

I'm not going to blab on about "how sorry I am you have this", number one, it's obvious people who like you wouldn't want you to suffer like this & sympathy doesn't help anyway.
I'm going to tell you to stay strong & as upbeat as you can because you deserve a life & we should all make the most of our lives it is a gift not to be wasted.

10/8/07 6:03 AM  
Blogger Sarah said...

Hey there!

I know exactly where you are - I was there last year. At one point, I put on on 17 freakin' pounds of water in my belly. I was in the hospital at the time - the nurses teased me about being 5 months pregnant.

I won't get into my whole story as it's long and intense, but suffice to say that I was TERRIFIED, I mean REALLY TERRIFIED of a transplant. I felt the same as you - it would change everything. I mean, I was 34 years old, working at a great job, only been married for 2 months and not ready to deal with this.

Needless to say, a transplant DOES change everything. But it is the BEST thing I ever did. I feel amazing. It takes a good 3-4 months to get back to speed, but during this time you are not immobile. You are just slower - but, believe it or not, faster than you are now.

I love my new heart. Love it, love it, LOVE it.

My fingers are crossed for you, girl. Your writing is fabu. Stay strong.

Sarah

10/8/07 11:44 AM  
Blogger Suldog said...

Geez, I wish there was something I could do to help. My Dad had that and it was a bitch at times. The edema is such a pain! I'll say a prayer for you.

10/8/07 1:21 PM  
Blogger Mom2Many said...

I was like madamspud sitting here feeling sorry for myself about my health and then I read your post.

I want you to know that I will be lighting a candle for you and sending lots of good thoughts your way.

Keep strong!!

10/8/07 6:06 PM  
Blogger margalit said...

Thank you everyone for your kind thoughts. Today has been a tough day physically, in fact the whole week has been a straight downhill slide. At this point I'm so congested that I can only be upright, which means that if I can't get rid of the interior flooding, I'm off to the hospital for a fun-filled weekend hooked up to IVs and being awoken every 10 minutes. Nothin' says lovin' like a night in cardiac care.

Meanwhile, the Boy is driving everyone around him nuts, which adds to my stress, which adds to my edema, which adds to my congestion.... he is literally killing me.

10/8/07 6:47 PM  
Blogger Belinda said...

Hospital now, please.

10/8/07 9:15 PM  

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