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	<title>
	Comments on: Winter Song	</title>
	<atom:link href="https://livingwithscleroderma.com/winter-song/feed/" rel="self" type="application/rss+xml" />
	<link>https://livingwithscleroderma.com/winter-song/</link>
	<description>Reflections on the Messy Complexity of Chronicity</description>
	<lastBuildDate>Mon, 24 Dec 2018 19:21:21 +0000</lastBuildDate>
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		<title>
		By: Evelyn Herwitz		</title>
		<link>https://livingwithscleroderma.com/winter-song/#comment-73902</link>

		<dc:creator><![CDATA[Evelyn Herwitz]]></dc:creator>
		<pubDate>Mon, 24 Dec 2018 19:21:21 +0000</pubDate>
		<guid isPermaLink="false">http://www.livingwithscleroderma.com/?p=5717#comment-73902</guid>

					<description><![CDATA[In reply to &lt;a href=&quot;https://livingwithscleroderma.com/winter-song/#comment-73897&quot;&gt;charlotte&lt;/a&gt;.

That&#039;s wonderful that you are fully insured! Such a big advantage. I&#039;m glad you&#039;ve found resources nearby. I do not recall that my lung scarring posed any issue. I&#039;m not on any immunosuppressive drugs for that condition. You&#039;re in a chamber with 100 percent oxygen. which is an advantage even with damaged lungs. That&#039;s a question to ask the specialists. They may also have other recommendations for treatments.

I do hope you&#039;re able to save your fingers! I was recovering from major hand surgery and partial amputation of five fingers, and it made a huge difference. Best of luck!!]]></description>
			<content:encoded><![CDATA[<p>In reply to <a href="https://livingwithscleroderma.com/winter-song/#comment-73897">charlotte</a>.</p>
<p>That&#8217;s wonderful that you are fully insured! Such a big advantage. I&#8217;m glad you&#8217;ve found resources nearby. I do not recall that my lung scarring posed any issue. I&#8217;m not on any immunosuppressive drugs for that condition. You&#8217;re in a chamber with 100 percent oxygen. which is an advantage even with damaged lungs. That&#8217;s a question to ask the specialists. They may also have other recommendations for treatments.</p>
<p>I do hope you&#8217;re able to save your fingers! I was recovering from major hand surgery and partial amputation of five fingers, and it made a huge difference. Best of luck!!</p>
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		<title>
		By: charlotte		</title>
		<link>https://livingwithscleroderma.com/winter-song/#comment-73897</link>

		<dc:creator><![CDATA[charlotte]]></dc:creator>
		<pubDate>Mon, 24 Dec 2018 17:38:13 +0000</pubDate>
		<guid isPermaLink="false">http://www.livingwithscleroderma.com/?p=5717#comment-73897</guid>

					<description><![CDATA[In reply to &lt;a href=&quot;https://livingwithscleroderma.com/winter-song/#comment-73889&quot;&gt;Evelyn Herwitz&lt;/a&gt;.

Thanks Evelyn!  I live in Europe so my insurance covers HBOT (everything actually).  I have already found  the HBOT center &#038; wound care center nearby.
The only thing is,  no doctors know if my lung fibrosis are an absolute contraindication or not.  This is what I need to find out by searching on internet.  I know in the US, you are more familiar with it.  I have also read some people did HBOT even with lung fibrosis.  I really want to do it if it is safe to save my finger from amputation.
So your doctor was never concerned by your lung scarring or checked your lung before you did HBOT?  Do you take some immunosuppressive drugs for your lung scarring?
Really appreciate your help.]]></description>
			<content:encoded><![CDATA[<p>In reply to <a href="https://livingwithscleroderma.com/winter-song/#comment-73889">Evelyn Herwitz</a>.</p>
<p>Thanks Evelyn!  I live in Europe so my insurance covers HBOT (everything actually).  I have already found  the HBOT center &amp; wound care center nearby.<br />
The only thing is,  no doctors know if my lung fibrosis are an absolute contraindication or not.  This is what I need to find out by searching on internet.  I know in the US, you are more familiar with it.  I have also read some people did HBOT even with lung fibrosis.  I really want to do it if it is safe to save my finger from amputation.<br />
So your doctor was never concerned by your lung scarring or checked your lung before you did HBOT?  Do you take some immunosuppressive drugs for your lung scarring?<br />
Really appreciate your help.</p>
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		<item>
		<title>
		By: Evelyn Herwitz		</title>
		<link>https://livingwithscleroderma.com/winter-song/#comment-73889</link>

		<dc:creator><![CDATA[Evelyn Herwitz]]></dc:creator>
		<pubDate>Mon, 24 Dec 2018 13:20:01 +0000</pubDate>
		<guid isPermaLink="false">http://www.livingwithscleroderma.com/?p=5717#comment-73889</guid>

					<description><![CDATA[In reply to &lt;a href=&quot;https://livingwithscleroderma.com/winter-song/#comment-73879&quot;&gt;charlotte&lt;/a&gt;.

Dear Charlotte,

I&#039;m so sorry to hear about your fingertip necrosis. The best way to find HBOT in your region is to search online for Hyperbaric Medical Centers near you. These are often associated with Wound Care Centers. I cannot speak to your question regarding lung fibrosis. While I have some lung scarring, it is not extensive.

It sounds like you may need a wound care specialist to assess your medical situation, treatment options, risks and eligibility for HBOT. You&#039;ll need to find out if your insurance will cover HBOT for your condition (wound care specialists can help you find out), and you&#039;ll also need to find out whether whatever wound care specialists and therapy are available within your region are within your insurance plan&#039;s network. If you get turned down by your insurance, you need physicians in your corner who will go to bat for you in an appeal.

The one other issue to understand is that HBOT is a huge daily commitment. So wherever you go, if you&#039;re able to get approved for the therapy, you&#039;ll either need daily transportation or a place to stay nearby for several weeks.

I hope this is helpful and that you get the urgent medical attention that you need. Take care.
Evelyn]]></description>
			<content:encoded><![CDATA[<p>In reply to <a href="https://livingwithscleroderma.com/winter-song/#comment-73879">charlotte</a>.</p>
<p>Dear Charlotte,</p>
<p>I&#8217;m so sorry to hear about your fingertip necrosis. The best way to find HBOT in your region is to search online for Hyperbaric Medical Centers near you. These are often associated with Wound Care Centers. I cannot speak to your question regarding lung fibrosis. While I have some lung scarring, it is not extensive.</p>
<p>It sounds like you may need a wound care specialist to assess your medical situation, treatment options, risks and eligibility for HBOT. You&#8217;ll need to find out if your insurance will cover HBOT for your condition (wound care specialists can help you find out), and you&#8217;ll also need to find out whether whatever wound care specialists and therapy are available within your region are within your insurance plan&#8217;s network. If you get turned down by your insurance, you need physicians in your corner who will go to bat for you in an appeal.</p>
<p>The one other issue to understand is that HBOT is a huge daily commitment. So wherever you go, if you&#8217;re able to get approved for the therapy, you&#8217;ll either need daily transportation or a place to stay nearby for several weeks.</p>
<p>I hope this is helpful and that you get the urgent medical attention that you need. Take care.<br />
Evelyn</p>
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		<item>
		<title>
		By: Evelyn Herwitz		</title>
		<link>https://livingwithscleroderma.com/winter-song/#comment-73888</link>

		<dc:creator><![CDATA[Evelyn Herwitz]]></dc:creator>
		<pubDate>Mon, 24 Dec 2018 13:08:33 +0000</pubDate>
		<guid isPermaLink="false">http://www.livingwithscleroderma.com/?p=5717#comment-73888</guid>

					<description><![CDATA[In reply to &lt;a href=&quot;https://livingwithscleroderma.com/winter-song/#comment-73738&quot;&gt;Patricia Bizzell&lt;/a&gt;.

:)]]></description>
			<content:encoded><![CDATA[<p>In reply to <a href="https://livingwithscleroderma.com/winter-song/#comment-73738">Patricia Bizzell</a>.</p>
<p>🙂</p>
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			</item>
		<item>
		<title>
		By: charlotte		</title>
		<link>https://livingwithscleroderma.com/winter-song/#comment-73879</link>

		<dc:creator><![CDATA[charlotte]]></dc:creator>
		<pubDate>Mon, 24 Dec 2018 07:59:47 +0000</pubDate>
		<guid isPermaLink="false">http://www.livingwithscleroderma.com/?p=5717#comment-73879</guid>

					<description><![CDATA[Hi Evelyn,

I am considering Hyperbaric oxygen therapy to heal my fingertips necrosis.  But because I live in a small town, doctors are not familiar with HBOT.  I have lung fibrosis and would like to know if it is a contraindication for HBOT.  
Do you have lung fibrosis because you successfully did HBOT for your fingers and did you hear doctors saying lung involvement (i.e. lung fibrosis) may be contraindicated for HBOT? 
It is quite urgent as I am trying to find as much as info possible about this.  Also if you have an idea where I can search, it would be very helpful too.
Thank you..]]></description>
			<content:encoded><![CDATA[<p>Hi Evelyn,</p>
<p>I am considering Hyperbaric oxygen therapy to heal my fingertips necrosis.  But because I live in a small town, doctors are not familiar with HBOT.  I have lung fibrosis and would like to know if it is a contraindication for HBOT.<br />
Do you have lung fibrosis because you successfully did HBOT for your fingers and did you hear doctors saying lung involvement (i.e. lung fibrosis) may be contraindicated for HBOT?<br />
It is quite urgent as I am trying to find as much as info possible about this.  Also if you have an idea where I can search, it would be very helpful too.<br />
Thank you..</p>
]]></content:encoded>
		
			</item>
		<item>
		<title>
		By: Patricia Bizzell		</title>
		<link>https://livingwithscleroderma.com/winter-song/#comment-73738</link>

		<dc:creator><![CDATA[Patricia Bizzell]]></dc:creator>
		<pubDate>Wed, 19 Dec 2018 15:15:57 +0000</pubDate>
		<guid isPermaLink="false">http://www.livingwithscleroderma.com/?p=5717#comment-73738</guid>

					<description><![CDATA[Such a &quot;good news&quot; post! Thank you!]]></description>
			<content:encoded><![CDATA[<p>Such a &#8220;good news&#8221; post! Thank you!</p>
]]></content:encoded>
		
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