Category Archives: Heart Healthy Living

Is this year over yet?

Posted on December 9, 2013 | 3 comments

Well, this has been a hell of a seven days. Last Thursday I had to go to the oral surgeon and have three teeth pulled. It wasn’t nearly as bad as I thought it would be. The surgeon and his team were awesome, from start to finish. If you are in Orlando and need oral surgery I highly recommend Dr. Scott Farber. They did everything in their power to put hubby and I at ease and when I went in I actually had no anxiety about it. Of course now that the work is done, this shit hurts. No pain pills because of the heart stuff, so I am in a lot of pain. So now I am bruised and suffereing.

12-9-13-karen Then yesterday I went to get my hair cut. I decided that I needed to hve it short for the surgery and recovery since I am going to have trouble maintaining it. Those of you who know me, know how long it took to get my hair long and the troubles I had keeping up with it. I am not going to be able to do that for a while, so I went short. Now, this may sound silly, but other than some breakdowns here and there, I have been okay about the surgery. So I am sitting in the chair yesterday and the little gal pulls myhair up in the rubberband and starts to snip. I teared up, got short of breath, and thought I might slip into a full blown anxiety attack. It was the first time I realized just how much I am giving up to get this LVAD and what it is going to mean. It scared the hell out of me. I managed to simmer down, but it was weird.

So then yesterday I had to tell my friend that I could not go see Andrea Boccelli with her. She got wonderful seats and was taking me to cheer me up. I can’t tell you how much I was looking forward to it. I was going to see Boccelli for free. Well, because of the teeth and germs, infections, blah blah blah I am not able to go. I won’t get to see them (Tami, her sweet boy Austin, and Michael who just came home from Japan as a newly promoted Corporal.) This was a once in a lifetime opportunity and this damn heart has taken it away from me. It infuriates me, and makes me too sad.

But, such is life and I will man up and get over it. But it sucks and now I am crying again, so I will close. Not looking for any sympathy here, just needed to vent.

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Posted in Blatherings, Heart Healthy Living

It Still Sucks

Posted on November 21, 2013 | 1 comment

As you may have guessed from the subject, this might not be a sunshine and puppies post, unless of course…oh never mind. This has been a hell of a week and it isn’t even over yet. Couple of anxiety attacks and today I ruined our day with a full-blown whimpering, sobbing tantrum about how unfair life is. Yeah, I know suck it up.

I have spent the last week on the phone trying to get things squared around with prescriptions, doctor appointments, did I mention anxiety attacks? Then there is the crap with the insurance…one ends on 12/31/13 but I already have another in place. We had to jump through a bunch of hoops to try and get today’s appointment covered by something. Why can’t things ever be easy? And let me just say…half a million dollars. Yeah, you read that right. That is what it will cost me to get my two surgeries and that is before my prescriptions that will run about $5000 per month (that is post transplant). The LVAD meds should only be about $2000 a month. Oh, and did I mention insurance only pays 80%. Where the hell are we gonna get the rest of that money? I feel more tears coming on…but I shall refrain for now. I freaking need fried chicken.

So I sit here with my heart monitor on and the leads with little adhesive pads burning holes in my flesh. In 24 hours I will hurt like the devil because there are no alternatives. Allergic to adhesive…really? sigh I also went and had my biopsy sutures removed. Hurt worse getting them out than getting them in. I did see a new doc today and I liked her a lot. Very upbeat and my short time with her has been the bright spot in my week. Tomorrow we trek back downtown at rush hour to drop off the monitor.

Sad-Broken-Heart-Photos1 Oh, and they took me to transplant committee today. REJECTED. I knew it would happen, they warned me, and I thought I was prepared, but it still sucks to be told you are so sick that you need a new heart to stay alive and then being told they won’t give you the new heart because you are too sick. I know we have a back up plan and they will revisit the committee after we try plan b to get us ready for the original plan, but damn, it still stung to hear it.

I can’t seem to get out of the “what did I do to deserve this” pity lane. NO ONE deserves this, but right now this is all about me and my self-pity. And now my personal favorite asshat comment for the day. “It’s my new heart, not someone else’s old heart.” Dick Cheney

Really? What an insensitive prick. Fine it is your new heart, but how do you think the family of your donor or any donor feels about that? You can think as stupid as you want, but for the love of all things deep fried, don’t talk!! Just don’t talk, Dick.

1 Comment

Posted in Blatherings, Heart Healthy Living, Just for Fun

Small obstacle, my arse!

Posted on November 12, 2013 | 7 comments

Well, I am home from my first week in hell. To say I am exhausted would be a gross understatement. I underwent so many tests I cannot even remember them all. I do know there was lots of poking involved and that just sucks. We have run into a small obstacle.

whaaat What they were able to find out is that I am considebrably sicker than they thought I was. After everything, we have determined I have a longer journey than expected.

I go to committee on Thursday. This means all the people who saw, and talked to, and poked me, will get together with the folks who decide whether or not I can go on the list. Chances are I will be rejected. I know, right. After everything I have been through. How can they do this to me?

Click image to view larger.

At first I was horrified, but they explained that my pressures are too high and right now they could not put a heart in because my body would just ruin it again. I had no idea I was that sick. Too sick. So I will wait to find out if and when they will put in the LVAD. Once I get that, we will work to get my pressures down and then when they are down, I will go before the committee again to get approved.

It may be as soon as before the end of the year that the device goes in, but they assure me I will feel better once I have it. I met a couple folks who have the LVADs and I am not as freaked out as I was in the beginning. I am determined not to waste a heart.

It was weird, yesterday they doctor was talking to me about my condition and everything, and he touched on me being a writer and a publisher and he suggested I consider writing a book about my journey. He says that so many others could benefit from my experiences, the highs and lows, and everything.

Any thoughts on my doing this? I am by no means the only one going through this, but he says, not everyone can write it. I’d really like to know what you guys think. Ya’ll are my support system, even if we have never met. I rely on your positive notes and so forth, because I am sure as hell having a hard finding them on my own.