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	<title>Cystic Fibrosis News Today Forums | w-hoh | Activity</title>
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				<title>w-hoh replied to the discussion New Port-a-catheter and Using the Percussion Vest in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/new-port-a-catheter-and-using-the-percussion-vest/#post-19502</link>
				<pubDate>Thu, 15 Feb 2024 21:51:16 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/new-port-a-catheter-and-using-the-percussion-vest/#post-19502"><span class="bb-reply-lable">Reply to</span> New Port-a-catheter and Using the Percussion Vest</a></p> <div class="bb-content-inr-wrap"><p>I would seriously ask this question of my CF Clinic. I&#8217;m sure they&#8217;ve run into this before.&lt;div&gt;</p>
<p></p>
<p> There&#8217;s always the option of doing it old school, i.e. manual chest percussion therapy. I know that it&#8217;s difficult to find someone to do it for you. And you may not have a treatment table. And it may not be as efficient. But it may be better&hellip;</p>
<p><span class="activity-read-more" id="activity-read-more-7602"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/new-port-a-catheter-and-using-the-percussion-vest/#post-19502" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Late CF Diagnosis in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/late-cf-diagnosis/#post-18716</link>
				<pubDate>Thu, 29 Sep 2022 19:19:27 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/late-cf-diagnosis/#post-18716"><span class="bb-reply-lable">Reply to</span> Late CF Diagnosis</a></p> <div class="bb-content-inr-wrap"><p>My son was diagnosed via newborn screening in 2008. I&#8217;m a physician but I had to admit I didn&#8217;t know much about cystic fibrosis because it was outside of my field of practice as a Public Health Physician</p>
<p>As I read about traits of cystic fibrosis; things like changes on chest x-ray, pancreatitis, infertility in males, Etc&#8230; I began to think of&hellip;<span class="activity-read-more" id="activity-read-more-6605"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/late-cf-diagnosis/#post-18716" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Late CF Diagnosis in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/late-cf-diagnosis/#post-18715</link>
				<pubDate>Thu, 29 Sep 2022 19:19:27 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/late-cf-diagnosis/#post-18715"><span class="bb-reply-lable">Reply to</span> Late CF Diagnosis</a></p> <div class="bb-content-inr-wrap"><p>My son was diagnosed via newborn screening in 2008. I&#8217;m a physician but I had to admit I didn&#8217;t know much about cystic fibrosis because it was outside of my field of practice as a Public Health Physician</p>
<p>As I read about traits of cystic fibrosis; things like changes on chest x-ray, pancreatitis, infertility in males, Etc&#8230; I began to think of&hellip;<span class="activity-read-more" id="activity-read-more-6604"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/late-cf-diagnosis/#post-18715" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Caregiver Role Reversal in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/caregiver-role-reversal/#post-18271</link>
				<pubDate>Tue, 26 Apr 2022 19:45:59 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/caregiver-role-reversal/#post-18271"><span class="bb-reply-lable">Reply to</span> Caregiver Role Reversal</a></p> <div class="bb-content-inr-wrap"><p>As the parent of a child with cystic fibrosis and autism, you are right. It can be exhausting being a caregiver. But it&#8217;s a very rewarding experience also.</p>
<p>My wife is basically a saint, caring for my child throughout COVID-19 and caring for me after my spinal cord injury in the military.</p>
<p>Now you  understand that caring for a loved one&hellip;<span class="activity-read-more" id="activity-read-more-6189"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/caregiver-role-reversal/#post-18271" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Trikafta and conjunctivitis in the forum CFTR Modulators</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-and-conjunctivitis/#post-18265</link>
				<pubDate>Sun, 24 Apr 2022 02:48:01 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-and-conjunctivitis/#post-18265"><span class="bb-reply-lable">Reply to</span> Trikafta and conjunctivitis</a></p> <div class="bb-content-inr-wrap"><p>I&#8217;m a physician board-certified and residency trained in occupational and environmental medicine.</p>
<p>&nbsp;</p>
<p>What I say is based upon best available medical evidence.</p>
<p>What other people say is&#8230;</p>
<p>less authoritative.</p>
<p>And not all allergies are seasonal. Including pet dander and allergies to things such as dust (aka dust mite feces)  and mold.</p>
<p>End&hellip;<span class="activity-read-more" id="activity-read-more-6181"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-and-conjunctivitis/#post-18265" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Trikafta and conjunctivitis in the forum CFTR Modulators</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-and-conjunctivitis/#post-18251</link>
				<pubDate>Fri, 22 Apr 2022 05:42:50 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-and-conjunctivitis/#post-18251"><span class="bb-reply-lable">Reply to</span> Trikafta and conjunctivitis</a></p> <div class="bb-content-inr-wrap"><p>Hello,<br />
I&#8217;m a retired physician who specialized in occupational and environmental medicine. I have a 14 year old with cystic fibrosis. And I have a lot of personal and professional experience with issues like this.</p>
<p>it could be that you have allergic conjunctivitis due to an allergen in your environment. The fact that your eyes respond to&hellip;<span class="activity-read-more" id="activity-read-more-6169"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-and-conjunctivitis/#post-18251" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh posted an update: @timb 
A similar thing happened with my brother-in-law. [&#133;]</title>
				<link>https://cysticfibrosisnewstoday.com/forums/activity/p/6168/</link>
				<pubDate>Fri, 22 Apr 2022 05:24:32 -0500</pubDate>

									<content:encoded><![CDATA[<p>@timb<br />
A similar thing happened with my brother-in-law. He was 45 years old and the thinking was that people are either diagnosed by age 10 or they don&#8217;t have c f. I had to really push his doctor to test him. </p>
<p>Double Delta f508</p>
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				<title>w-hoh replied to the discussion A short horror story in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/a-short-horror-story/#post-17771</link>
				<pubDate>Fri, 10 Dec 2021 15:32:50 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/a-short-horror-story/#post-17771"><span class="bb-reply-lable">Reply to</span> A short horror story</a></p> <div class="bb-content-inr-wrap"><p>My son has cystic fibrosis so I&#8217;ve spent time on the phone with private insurance companies as well as Medicaid. I&#8217;m a disabled veteran and rely upon Medicare and the VA system.</p>
<p>What you experienced was the end of the year rush that insurance companies have to deal with, when people are trying to &#8220;get their medical care in&#8221; before&hellip;<span class="activity-read-more" id="activity-read-more-5705"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/a-short-horror-story/#post-17771" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Warning: Ranting About Docs and Accommodations and Telehealth in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/warning-ranting-about-docs-and-accommodations-and-telehealth/#post-17463</link>
				<pubDate>Fri, 17 Sep 2021 17:25:48 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/warning-ranting-about-docs-and-accommodations-and-telehealth/#post-17463"><span class="bb-reply-lable">Reply to</span> Warning: Ranting About Docs and Accommodations and Telehealth</a></p> <div class="bb-content-inr-wrap"><p>CFF.org lists the care center data for various cf are centers. They list the  Guidelines for care (for pediatric patients) as<br />
&#8220;percentage of children less than 18 years of age who have had at least four clinic visits, two lung function tests, and a sputum or throat culture. &#8221;</p>
<p>In order to accomplish this in a high enough percentage of&hellip;<span class="activity-read-more" id="activity-read-more-5419"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/warning-ranting-about-docs-and-accommodations-and-telehealth/#post-17463" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Monday Shoutout: The Capable Disabled in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/monday-shoutout-the-capable-disabled/#post-17452</link>
				<pubDate>Tue, 14 Sep 2021 19:32:09 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/monday-shoutout-the-capable-disabled/#post-17452"><span class="bb-reply-lable">Reply to</span> Monday Shoutout: The Capable Disabled</a></p> <div class="bb-content-inr-wrap"><p>This capable disabled individual is a physician who became disabled due to a spinal cord injury in the US Army Medical Corps during the global war on terror (GWOT)&#8230; specifically Iraq military engagement.</p>
<p>When I had recovered enough; my wife and I decided to have children. Our first child was diagnosed with cystic fibrosis early in life.&hellip;<span class="activity-read-more" id="activity-read-more-5405"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/monday-shoutout-the-capable-disabled/#post-17452" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion COVID-19 check in in the forum COVID-19 and CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/covid-19-check-in/#post-17309</link>
				<pubDate>Tue, 10 Aug 2021 19:25:01 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/covid-19-check-in/#post-17309"><span class="bb-reply-lable">Reply to</span> COVID-19 check in</a></p> <div class="bb-content-inr-wrap"><p>My son is 12 years old with cystic fibrosis and I&#8217;m a retired public health position.</p>
<p>Here in Charleston WV, people are basically being knuckleheads. They&#8217;re not getting vaccinated insufficient numbers. the estimate that only approximately 10% wearing masks at the local stores.</p>
<p>Positive side, we can buy and 95 masks at the local Home Depot&hellip;<span class="activity-read-more" id="activity-read-more-5249"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/covid-19-check-in/#post-17309" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Social workers and CF in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/social-workers-and-cf/#post-16405</link>
				<pubDate>Thu, 18 Mar 2021 16:17:41 -0500</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/social-workers-and-cf/#post-16405"><span class="bb-reply-lable">Reply to</span> Social workers and CF</a></p> <div class="bb-content-inr-wrap"><p>I&#8217;m so happy you wrote this post!</p>
<p> I&#8217;m almost embarrassed to admit, that as a physician, I didn&#8217;t see the point of having a social worker on our team at the CF clinic at University of Pittsburgh… UNTIL I needed her.</p>
<p> There are so many programs out there to help children/adults with chronic healthcare needs but you rematch need an  experienced&hellip;<span class="activity-read-more" id="activity-read-more-4493"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/social-workers-and-cf/#post-16405" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion We Are Failing At Accessibility in The OR in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/we-are-failing-at-accessibility-in-the-or/#post-16366</link>
				<pubDate>Wed, 10 Mar 2021 20:56:54 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/we-are-failing-at-accessibility-in-the-or/#post-16366"><span class="bb-reply-lable">Reply to</span> We Are Failing At Accessibility in The OR</a></p> <div class="bb-content-inr-wrap"><p>My apologies. I rely primarily upon voice recognition to &#8220;type&#8221; and made a blunder. </p>
<p> Did not mean to say &#8220;not many deaf INDIVIDUALS have proper training in medical terminology”.  </p>
<p>Should&#8217;ve read&#8230; not many deaf INTERPRETERS have proper training in medical terminology, not deaf individuals&#8221;. (I know that you do by this point in your life.)</p>
<p>&hellip;<span class="activity-read-more" id="activity-read-more-4445"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/we-are-failing-at-accessibility-in-the-or/#post-16366" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion We Are Failing At Accessibility in The OR in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/we-are-failing-at-accessibility-in-the-or/#post-16356</link>
				<pubDate>Wed, 10 Mar 2021 08:48:23 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/we-are-failing-at-accessibility-in-the-or/#post-16356"><span class="bb-reply-lable">Reply to</span> We Are Failing At Accessibility in The OR</a></p> <div class="bb-content-inr-wrap"><p>I&#8217;m a physician and have done &#8220;spinal taps&#8221; in a fluoroscopy suite, similar to an OR, on a large number of occasions. they are usually done in a procedure room, or if there is a real need, in the OR. </p>
<p> I was also injured while serving in the U.S. Army Medical Corps, suffering a spinal cord injury. I&#8217;ve had lumbar punctures done on myself on&hellip;<span class="activity-read-more" id="activity-read-more-4433"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/we-are-failing-at-accessibility-in-the-or/#post-16356" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Gender In The Doctor&#039;s Office... in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/gender-in-the-doctors-office/#post-16336</link>
				<pubDate>Thu, 04 Mar 2021 21:02:00 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/gender-in-the-doctors-office/#post-16336"><span class="bb-reply-lable">Reply to</span> Gender In The Doctor's Office...</a></p> <div class="bb-content-inr-wrap"><p>I&#8217;m a male physician who has a 12-year-old with cystic fibrosis.</p>
<p> Keep in mind that males who go into pediatric pulmonology are not forced to do so. They recognize that cystic fibrosis will be a large part of their practice and knowing that CF  is much more common in females for an unknown reason. </p>
<p>In other words, they&#8217;re choosing a&hellip;<span class="activity-read-more" id="activity-read-more-4416"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/gender-in-the-doctors-office/#post-16336" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion Gender In The Doctor&#039;s Office... in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/gender-in-the-doctors-office/#post-16325</link>
				<pubDate>Tue, 02 Mar 2021 21:43:32 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/gender-in-the-doctors-office/#post-16325"><span class="bb-reply-lable">Reply to</span> Gender In The Doctor's Office...</a></p> <div class="bb-content-inr-wrap"><p>Sounds a lot like obsessive-compulsive disorder. OCD can be a serious condition and is a very common anxiety disorder in chronically ill. </p>
<p> Talk to someone you trust about it and get a referral for an evaluation.</p>
<p>I can tell you from my own experience, you can totally change your life. I used to stay up all night worried about presentations&hellip;<span class="activity-read-more" id="activity-read-more-4401"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/gender-in-the-doctors-office/#post-16325" rel="nofollow"> Read more</a></span></p>
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				<title>w-hoh replied to the discussion CF and alcohol consumption in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-and-alcohol-consumption/#post-16072</link>
				<pubDate>Tue, 05 Jan 2021 23:23:10 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-and-alcohol-consumption/#post-16072"><span class="bb-reply-lable">Reply to</span> CF and alcohol consumption</a></p> <div class="bb-content-inr-wrap"><p>Salt intake, not old intake.</p>
<p>Forgive the typo, I must rely upon voice recognition due to a service-connected disability. Thank you.</p>
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				<title>w-hoh replied to the discussion CF and alcohol consumption in the forum Adults​ ​With​ ​CF</title>
				<link>https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-and-alcohol-consumption/#post-16071</link>
				<pubDate>Tue, 05 Jan 2021 23:22:12 -0600</pubDate>

									<content:encoded><![CDATA[<p class = "activity-discussion-title-wrap"><a href="https://cysticfibrosisnewstoday.com/forums/forums/topic/cf-and-alcohol-consumption/#post-16071"><span class="bb-reply-lable">Reply to</span> CF and alcohol consumption</a></p> <div class="bb-content-inr-wrap"><p>Paul is wrong about&#8217;s old intake. People with CF do need to take extra salt in addition to what they get in a normal American diet  It&#8217;s a well-established fact. but don&#8217;t trust me, some random guy on the Internet… Listen to your dietitian in your CF clinic.</p>
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				<title>w-hoh became a registered member</title>
				<link>https://cysticfibrosisnewstoday.com/forums/activity/p/4048/</link>
				<pubDate>Sun, 13 Dec 2020 15:49:25 -0600</pubDate>

				
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