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	<title>Restaurant Fuel &#187; Cardiomyopathy</title>
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	<description>Politics and Popular Culture and Cardiomyopathy</description>
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		<title>Enter the Beagle</title>
		<link>http://www.restaurantfuel.com/2009/05/28/enter-the-beagle/</link>
		<comments>http://www.restaurantfuel.com/2009/05/28/enter-the-beagle/#comments</comments>
		<pubDate>Thu, 28 May 2009 20:13:56 +0000</pubDate>
		<dc:creator>jeff</dc:creator>
				<category><![CDATA[Cardiomyopathy]]></category>
		<category><![CDATA[Heart Problems]]></category>
		<category><![CDATA[Life]]></category>

		<guid isPermaLink="false">http://www.restaurantfuel.com/?p=564</guid>
		<description><![CDATA[So, it&#8217;s been a long time since I&#8217;ve blogged. Things have actually been pretty good overall, which tends to make me less inclined to write. I&#8217;m more of a &#8220;foul weather&#8221; blogger than a generalist. I&#8217;m also really, really distracted by my other projects. In general, I feel great. I went to see a psychiatrist [...]]]></description>
			<content:encoded><![CDATA[<p>So, it&#8217;s been a long time since I&#8217;ve blogged.  Things have actually been pretty good overall, which tends to make me less inclined to write.  I&#8217;m more of a &#8220;foul weather&#8221; blogger than a generalist.  I&#8217;m also really, really distracted by my other projects.</p>
<p>In general, I feel great.  I went to see a psychiatrist who prescribed some medication that has helped me overcome my anxiety and depression.  I had a horrific anxiety attack last month that was a wake up call for me.  Apparently, my experience of being diagnosed with congestive heart failure and cardiomyopathy may have given me PTSD.  It sounds crazy, but it&#8217;s true.</p>
<p>My defibrillator was installed in March, and after my last bike stress test, I am now convinced that it may never go off.  You see, I pushed myself to my physical limits, and my heart rate never entered arrhythmia or the heart rate danger zone.  If that doesn&#8217;t do it, my every day life won&#8217;t either.  I&#8217;m getting used to having an iPod-sized bulge under the skin of my chest, and the pain has faded.  I can even sleep on the same side as the implant now, which is crazy.</p>
<p>The bike test brought forth good news &#8212; last time, my score was 14, which is the threshold for transplant.  This time, my score was 20.7 &#8212; not perfect, obviously, but above the threshold.  Hearing that number was the happiest day of my life.</p>
<p>Through the process of grappling with my disorder, I&#8217;ve been doing what I&#8217;ve called &#8220;closing the loop.&#8221;  That&#8217;s reaching out to old friends, righting past wrongs and indiscretions, generally dealing head on with issues that made me feel guilty or filled me with remorse for years.  As a result, I feel like I&#8217;ve been granted a true second chance at life &#8212; I feel more at peace with myself than I&#8217;ve felt in years, and I generally believe I&#8217;m a better person for having gone through my experience.  I even went to the doctor who misdiagnosed me and forgave him for that mistake &#8212; he needed to know what he did, but that I didn&#8217;t hold it against him.  These things happen.  There will be no law suit, or anything like that, though I suspect I will soon be finding another primary care physician.</p>
<p>The last loop to close is Archie, the splendid Boston Terrier that died last year.  I&#8217;ve felt horrible for not having been able to make his death less painful, for not having gotten him to the vet in time.  And I have felt a hole in my life without him &#8212; a need for the companionship of a good and trusted dog.  I have had a dog for the past 20 years of my life &#8212; my year without one has been fraught with grief.</p>
<p>So last night was the first night that I slept with a dog burrowed under the covers next to me, or woke to having my face licked.  Yesterday, Tina and I adopted a 9 month old Beagle named Charlie.  He became a member of our family almost instantly &#8212; it was like he had always been with us.  I will always miss Archie, but I love having a young, generally well-mannered beagle &#8212; hounds are such fine dogs, and there&#8217;s no finer sub-breed than that of the beagle, that hunted game in Great Britain in 200 AD and is one of the oldest breeds in history.</p>
<p>Charlie is young, but he&#8217;s a delightful friend.  Full of energy, loving, intelligent.  He enjoys exploring the neighborhood as we go on walks, and for the first time in a long time, my life feels complete.</p>
<p>I don&#8217;t know what will happen to me in the coming days, weeks, months, or years.  But I am content that I have made peace with my demons, that I have a wonderful family and now a new companion animal, and that I have lived the best life I can live.  Oh yeah, and my Halo 3 skills are back up.  Could anyone ask for more?  </p>
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		<title>Take Courage That You&#8217;re Not Alone</title>
		<link>http://www.restaurantfuel.com/2009/02/10/take-courage-that-youre-not-alone/</link>
		<comments>http://www.restaurantfuel.com/2009/02/10/take-courage-that-youre-not-alone/#comments</comments>
		<pubDate>Tue, 10 Feb 2009 19:23:13 +0000</pubDate>
		<dc:creator>jeff</dc:creator>
				<category><![CDATA[Cardiomyopathy]]></category>
		<category><![CDATA[Heart Problems]]></category>
		<category><![CDATA[Life]]></category>

		<guid isPermaLink="false">http://www.restaurantfuel.com/?p=546</guid>
		<description><![CDATA[The hardest thing I&#8217;m going through right now is this constant state of uncertainty. I&#8217;ve been sick with a cold for about five or six days now. The problem is that cold symptoms are very very similar to heart failure symptoms. I&#8217;ve called the Heart Clinc twice now about it, and they assure me that [...]]]></description>
			<content:encoded><![CDATA[<p>The hardest thing I&#8217;m going through right now is this constant state of uncertainty.  I&#8217;ve been sick with a cold for about five or six days now.  The problem is that cold symptoms are very very similar to heart failure symptoms.  I&#8217;ve called the Heart Clinc twice now about it, and they assure me that if my family is sick (they are), then it&#8217;s probably all that&#8217;s wrong with me, too.  I&#8217;m not gaining weight &#8212; I&#8217;m not swelling in my hands or feet.  But I&#8217;m still unsure.  Maybe this is heart failure again, maybe my heart is giving out despite the medicine?</p>
<p>Being chronically ill is like being placed in a state of constant limbo and panic.  Every bout of sickness takes on greater weight.  And with no contact with doctors for weeks on end, it&#8217;s hard to know where you stand, what your future may be.  You can only hypothesize and worry, and I am a terrible worrier.  In the end you guess that you don&#8217;t have a future.</p>
<p>I don&#8217;t know what I would do without Tina&#8217;s constant support and optimism.  She makes me feel that I&#8217;m not alone, even though some pretty bad things have descended on me, and she can skillfully talk me off a cliff when panic sets in.  Without her, I would have already lost this.</p>
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		<item>
		<title>On Well-Meaning Assholes</title>
		<link>http://www.restaurantfuel.com/2009/01/27/on-well-meaning-assholes/</link>
		<comments>http://www.restaurantfuel.com/2009/01/27/on-well-meaning-assholes/#comments</comments>
		<pubDate>Wed, 28 Jan 2009 00:28:10 +0000</pubDate>
		<dc:creator>jeff</dc:creator>
				<category><![CDATA[Cardiomyopathy]]></category>
		<category><![CDATA[Heart Problems]]></category>
		<category><![CDATA[Life]]></category>

		<guid isPermaLink="false">http://www.restaurantfuel.com/?p=543</guid>
		<description><![CDATA[I&#8217;m sick of people giving me advice.  Yesterday, someone at work, after lecturing me naively about my low-sodium eating options as if I haven&#8217;t done 30 days of research already, advised me on getting my affairs in order.  In getting a will. Now this person recently lost someone close to them, so they were thinking [...]]]></description>
			<content:encoded><![CDATA[<p>I&#8217;m sick of people giving me advice.  Yesterday, someone at work, after lecturing me naively about my low-sodium eating options as if I haven&#8217;t done 30 days of research already, advised me on getting my affairs in order.  In getting a <em>will</em>.</p>
<p>Now this person recently lost someone close to them, so they were thinking practically &#8212; what I needed to do to make things right for the people I leave behind.  And getting a will is on my list of things to do &#8212; but Christ, was it really any of their business to talk to me about it?  It&#8217;s one thing to be the survivor after a family member dies &#8212; God knows, I know what that means after losing my father &#8212; but it&#8217;s one thing to presumptuously counsel a person who actually might be <em>dying</em>.</p>
<p>Seriously, work colleagues should not be doing this.</p>
<p>Now here&#8217;s the thing, I <em>don&#8217;t know</em> if I&#8217;m dying.  All I know is that I have a weak heart and that I&#8217;m currently in fairly stable condition.  I had a right-side heart catherization a week ago, and the cardiologist told me it looked better than before.  Not normal, obviously &#8212; but better.  My gas levels and pressures were <em>fine</em>.  No one knows my risk level yet.  I may need an assist device, or I may not.  I may need a heart transplant, or I may not.  I may only need medication, or I may need more than that.  The point is, no one knows.  But this person treated me as if death was a forgone conclusion.  </p>
<p>Now, death is a foregone conclusion for every human being on earth.  But that doesn&#8217;t mean it&#8217;s happening tomorrow, this year, next year, ten years from now, etc.  Anyone can die at any time &#8212; shit happens.  Shit has happened to <em>me</em>.  I watched my father die of cancer for half a year, and I&#8217;ve recently quite suddenly lost a family member.  But I&#8217;m not dead <em>yet</em>.  And I&#8217;d prefer if people would stop treating me as if I&#8217;m going to die in the immediate future.  Because no one knows &#8212; I don&#8217;t know, my doctors don&#8217;t know.  I don&#8217;t even feel <em>that bad</em>.  </p>
<p>I have accepted that I may die, <em>and</em> I&#8217;ve also accepted that I may live.  I&#8217;ve come to terms with that &#8212; I&#8217;m not in denial.  But I believe very strongly that to get through this I have to fight death with everything I have.  And that means avoiding conversations with well-meaning douche bags who have no idea what it means to have been told things like &#8220;you may need a heart transplant&#8221; or &#8220;you may die.&#8221;  Until someone has said those words to you, keep your fucking advice to yourself.  I have enough advice from my top flight health care providers, thank you very much.  Nothing spoils morale more than someone treating you like you&#8217;re going to fail in the struggle you are now committed to.  </p>
<p>Even if this does eventually kill me, no one will be able to tell me that I just gave up or rolled over.  I am <em>stubborn</em> and <em>driven</em>.  As a boy, my father taught me how to suck it up and keep going despite pain and doubt.  I clawed my way out of a possible future of dead-end service industry jobs to work in the white collar professional world of Washington, D.C.  </p>
<p>I have modest goals &#8212; live to see my girls graduate from high school.  Get my master&#8217;s degree in communication.  Live as long as my dad &#8212; if I can make it to 50, then I will have succeeded.  That&#8217;s less than 20 years.  I can <em>do this</em>.  </p>
<p>And if it means replacing my heart and a lifetime of immune-suppressing drugs then so be it.  I will do <em>whatever</em> it takes.</p>
<p>And anyone who wants to tell me otherwise, or focus on the worst possibilities over the best possibilities can go fuck themselves.</p>
<p>As John Darnielle once said, &#8220;I&#8217;m going to make it through this year if it kills me.&#8221; </p>
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