Category Archives: Blatherings

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.

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Posted in Blatherings, Heart Healthy Living

Tagged heart failure, heart transplant, Jacksonville, LVAD, Mayo Clinic

Tracing Your European Roots

Posted on October 30, 2013 | Leave a comment

Tracing Your European Roots
By W. Daniel Quillen

I just finished reading this book and I can’t tell you how much it is going to help me. I have just begun researching my German ancestors and I was quite afraid of how I was going to figure it all out. W. Daniel Quillen’s book gave me exactly what I needed to get the ball rolling.I have read several of his other books on genealogy and as was the case with them, I found a wealth of solid usable information with enough humor and interesting facts about his family to keep me from getting bored.

One thing I have discovered about Mr. Quillen’s books is that once you’ve read one, you find all kinds of reasons to read the others. I have almost the entire set now and I refer back to them frequently when I need a refresher or a tip. ANother great thing about this series of books is that Quillen uses his actual experiences and results to make points and clarify sticky issues.

Tracing your Eurpoean Roots is an excellent guide for stepping out of the comfort zone (once again) and searching out those relatives from far off places.

Genealogy expert W. Daniel Quillen offers valuable tools and resources for anyone tracing their European ancestors.

The United States is largely a nation populated by people of European roots, and many do-it-yourself genealogists find themselves in need of scouring European records to find their ancestors. New to this edition is a section on tracing your Scottish ancestors. This volume of Quillen’s Essentials of Genealogy shows readers how to do their own research to uncover their European ancestry. This book will cover the following topics: · Where to find European records · How to access European records · How to use the Internet to help you in your search · Pitfalls and issues in obtaining European records · Research tips for England, Ireland, Germany, France, Italy, Spain, Poland, and other European nations.