PH Awareness Month 2018

[Vanessa Vaile]

I plan to do something and have been thinking about what — so far mostly in realm of blogging and social media. Thanks for the ideas and PH Awareness materials on PHA website.

Articles or letters to the editor for local newspapers is a great idea. Posts and handouts for local community health organizations — local clinic or hospital too. I don’t know for sure but now suspect what I thought was just COPD may have been or included PH. Lately I’ve been wondering how many people might have PH without being aware of it or receiving appropriate (if any) treatment. More awareness would help.

So I went a-googling for articles, searching “how to tell Pulmonary Hypertension from COPD.” This seems the best, https://pulmonaryhypertensionnews.com/copd-pulmonary-hypertension/

Most were older articles and more about PH and COPD together differentiating between them. Admittedly risking oversimplification,I compared symptom lists. They share more than a few basic symptoms. Since COPD is frequent factor in contributing to PH, I just looked at PH symptoms not characteristic of COPD: edema, chest pressure or pain and heart rate.

Please add ideas, sources, articles, symptoms, etc — also other contributing conditions or ones with shared symptoms that might muddy the diagnostic waters.

[VK]

So I have other condition(s) to discuss, maybe it’ll help…

Restrictive lung diseases (those that decrease alveolar volume):
* Pulmonary Fibrosis (usually autoimmune)
* Thoracic Insufficiency/TIS (reduced thorax volume due to scoliosis, spinal stunting, and/or ribcage defects – this is what I have)
* Congenital Heart Disease/Defects (not a direct cause of PH but associated with syndromes that cause thoracic insufficiency and also surgeries for it can result in TIS as a side effect)

[Brittany Foster]

VK you and I have very similar defects. I also have restrictive and obstructive lung disease, CHD, scoliosis, rib cage narrowing, and a form of spina bifida that is hereditary in my family. That’s why it has always been so hard to pinpoint what has been contributing to the PH for me. They know it’s hypoxia related but the hypoxia in itself has so many causes that make it difficult to treat ! My poor doctors lol!

[VK]

Hypoxia’s just a lack of oxygen so yeah a lot of things could cause that. For what it’s worth I also have exercise-induced asthma and intermittent bronchitis (both obstructive lung diseases).

I’d worry about yourself before you do your doctors!

[Brittany Foster]

Oh yea for sure! I have been putting myself first lately! Especially since things have just been difficult these past few weeks and I’ve been calling my doctors like a crazy person and sending results of my bipap machine alerting me of more frequest episodes without much response . Extremely irritating!

[Brittany Foster]

These are all awesome idea ! I spread awareness to my friends and family too and I like to go to my PH office and bring them some homemade cookies and treats ! I have an appointment with them the end of October so it will be just in time for awareness month. Going to the Fire departments and talking with the EMTs about PH is also something that could be great to do ! I spread awareness through social media a lot on my accounts like facebook and instagram. Even if it doesn’t reach everyone, at least it will reach a few people. Even talking to the local support group about how they raise awareness and getting some ideas from them and working with them! I love how you both are thinking about this ! So important 🙂

[jen-cueva]

Yes, lots of great ideas. I usually take cookies or baked goods at Christmas for my PH doc office and staff, I do have an appt next month so maybe I’ll take something then, too!

I usually try to do things online as well throughout November for Awareness Month.Even thigh I’ve had it so long, I’m sure my FB friends get sick of it, oh well, one person may learn something and that’s my goal.

[Brittany Foster]

Jen,
That’s nice of you to bring baked goods or treats around Christmas time! I’m sure they really appreciate it! I do a lot of awareness on social media too. I used to wonder if it got repetitive but now I don’t care who thinks that its repetitive or the same thing over and over again. It’s my life and real for me so people can unfollow if it gets too boring hahahahaha!

[Vanessa Vaile]

PH Awareness month reminded me to return to my “PH on social media” project. I found this — PH Awareness Week 2018 in the UK, October 22-28.

And at @PHA_UK,

Join us for our exclusive PH Awareness Week Twitter Chat on NEXT FRIDAY 26th October at 12pm. Use and follow #PHWeekChat to be part of the conversation!

https://twitter.com/PHA_UK/status/1052847258939662336/

I’m finding and saving some good images for PH Awareness (and ongoing consciousness raising). Here’s one, https://pbs.twimg.com/media/DpuT-YNW0AAiT_Q.jpg

Join us for our exclusive PH Awareness Week Twitter Chat on NEXT FRIDAY 26th October at 12pm. Use and follow #PHWeekChat to be part of the conversation! pic.twitter.com/DwBiAv6rZY

— PHA UK (@PHA_UK) October 18, 2018

[Kathleen Sheffer]

This is awesome, Vanessa! Thanks for sharing. Do you plan to “attend” the Twitter Chat?

[Vanessa Vaile]

Yes, Kathleen, I hope to and will set a reminder on my calendar, but if I miss it, Twitter chats are easy to catch later. Just follow the hashtag, perhaps make a “Twitter Moment” out of it to share. The chat tag is likely to spread over more of the week as well. I’ve got a most of the day appointment at Jewish National the Wednesday before. Between that the long drive on both ends, I expect to sleep a lot the next day.

In the meantime, I’ve added more Twitter and Instagram accounts, hashtags, links to my collection that will break into more bundles. I’ll make a permalink for the less organized original and post it on this thread.

[Brittany Foster]

thank for posting that for us Vanessa!
Your contributions to the forums and to advocating for PH awareness is so appreciated ! Looking forward to seeing the twitter chat. I use a lot of awareness hashtags on instagram and will be looking forward to seeing how all the organizations spread awareness. Your idea of saving pictures that can help people understand and that you can post is a good one too. During awareness month I always stress the fact that this is often an invisible illness. I like to do side by side pictures of my “many faces of PH” to show others how different it can look for me day to day.

[Vanessa Vaile]

hahaha… Brittany, I had an exercise tolerance test at Denver PH Center last week and had my daughter take a cell picture of me all hooked up on the bike — face mask and full hook-up. She took some at sleep study too. I call them my Borg collection.

That reminds me to check Pinterest too. fyi that platform has a good selection of sharing tools and display options. Maybe

https://www.pinterest.com/search/pins/?q=%22pulmonary%20hypertension%22

….and look at all the PH Pinboards, https://www.pinterest.com/search/boards/?q=%22pulmonary%20hypertension%22

[Brittany Foster]

Hahahaha!
Vanessa,
I can just imagine what those photos must be like!!! Especially with the mask on during the testing or the breathing monitor lol!!! I must have looked ridiculous during mine! Wish I had some pictures from that. Also, great idea about checking pinterest and pinterest boards that are PH related!

[VK]

…Denver…?! Miracle you did’t go flat on your face. I would have!

[jen-cueva]

Lol Vanessa ,
I’ve had those tests so I definitely know those pics are very detailed and can be funny as I think back .

Thank you for sharing , did you attend the chat mentioned above ?

Brittany , I , too thought as you , but yes , it’s my life , my FB page and I’ll post and do what I want , Hahahaha

[Brittany Foster]

Exactly Jen,
And the more awareness we spread the better it is ! I sometimes wonder if I should post and get hesitant, but you know what? It IS PART OF OUR LIFE . People post the good in their life all the time so why can’t we post our realities? We should !

[Vanessa Vaile]

Jen, the twitter chat is 12n-1pm (GMT ~ better check the Time and Date page) Friday. Oops, that’s 5 am my time, so probably won’t make it live unless I have a bad night. Anyway, I’m already seeing the hashtag but even more for the hashtag #PHWeek18 and #LetsTalkPH.

Hey, there’s even a PH Awareness selfie app ~ check it out, http://www.phaware.global/phaware365/

Another PH Instragam account (I should make a separate list of those too), https://www.instagram.com/phaware/

In closing, another PH awareness image

[Brittany Foster]

Thank you for these links Vanessa,
Great idea to change the profile picture during the month of November. I know for awareness week for CHD they have a profile frame that people can put around their pictures. Last year, I’m pretty sure there was a PH one! I’ll be on the lookout this year too. I also made my cover photo a picture of blue lips for PH Awareness. I know there is a campaign where people wear blue lipstick and take pictures with the hashtag #phaware

[jen-cueva]

Thanks Vanessa,
Yes I agree 5 am is early …
Thanks for sharing those links.

I also wanted to remind all to contact your local Congress,if you go to the PHA site it’s super easy and fast . Pretty much fill in the blanks and you can add more if you like .

[Brittany Foster]

Thank you for the reminder Jen!
That is so important! In Rhode Island they light up the state house different colors representing each month. It would be great if they could light it up the PH colors in November. They light it up pink for October for breast cancer awareness month.

[Vanessa Vaile]

Turns out I missed both #phweekchat and responding to posts here for the past few days. I’ll catch up by hashtag and make a “Twitter Moment” to share — and have for next month.

I was at National Jewish Health PH Center — two intensive days testing, getting poked, scanned and puffing into tubes. The appointment was supposed to be one day for a heart cath to confirm the earlier diagnosis based just on x-ray, oximetry and echocardiogram. Since I did not expect to be away this long. I didn’t bring my laptop and won’t be back in Yuma until late Sunday. I’m at my son’s and using a computer here. Friday I pretty much vegged out, catching only the most pressing email and updates. So here I am today.

So now is PH not only “official” but my pressure numbers high enough to keep me me over for more tests, pretty much the full battery I gather and ending with a late afternoon appointment with Dr George and a supply of vasodilators to get me started. That makes the new “Talking about …” topic especially timely. I met my team too.

Here’s a blog post about 0PH Awareness Month, https://www.teamphenomenalhope.org/call-to-action-november-is-pulmonary-hypertension-awareness-month/

[Brittany Foster]

Hi Vanessa,
I know that all of this is probably so overwhelming for you. I am glad that you are in good hands and that you are meeting with your PH team to get you started on the right therapies that are best for you. You are doing all the right things and I am so glad that you are finding support through online communities and are really learning all you can about this condition. Thanks for spreading awareness and for keeping up upsted on how you are doing. I hope the discomfort post heart cath isnt too bad and that you will be on your way to feeling better soon! Thinking of you and sending you healing thoughts 🙂

[jen-cueva]

@brittany-foster, that would be awaken if they would light yo the state House for PH, if so, definitely share here.

Vanessa,
I’m so sorry, I’m sure it’s overwhelming and exhausting but knowing you’re receiving great care and met your PH team is huge and I’m sure they will work with you and find a med regime that would help you. Definitely rest up, your body needs to and keep us posted once you get home. Glad you are getting answers and help from the forums as well as your PH center. We are all here for you .

[Vanessa Vaile]

Nothing to be sorry about. I’m so relieved to finally get here. 8 months even a year earlier I wouldn’t have given odds on making it to this point at all.

A PH data visualization I found gave going on 3 years and as many docs from diagnosis to getting here.

[Brittany Foster]

Vanessa,
I know the relief that comes along with a diagnosis. I’m glad they were able to give you answers and help figure this all out for you! I think it helps to have an answer so you can logically make sense of how you’re feeling and your symptoms.

[Vanessa Vaile]

Having a number for my team that I can call with questions is a relief too. It also avoids the frustration of trying to communicate with my local primary care doc. My first draft of the last sentence was much ruder.

About PH Awareness month, Facebook has a frame too. I added it to the profile picture on my timeline and will also add it the one on my local community page. I’ve been saving images and started a pinboard on Pinterest too. Other than Twitter, I’m slow off the mark — volunteering digitally for 2018 midterms — but will pick up the pace after Nov 6.

Good resources and images for awareness on PNHA or Pulmonary Hypertension Network Australia, http://www.phna.info/. (@brittany-foster that’s where I found that picture of the masked blonde superhero wearing a cape that so reminded me of you)

[Brittany Foster]

Thank you Vanessa!
I love the link and the image you sent. These are all great idea and a great way to spread awareness. It shows me how supported I am too when people simply “like” and acknowledge what I’m posting or comment on it with uplifting words. People appreciate vulnerability and you never know what others may be battling themselves. Awareness gives a voice to everyone ! It’s so important and I’m glad you are sharing all the ways that you are making others aware this month.

[Vanessa Vaile]

That bundle of awareness and social media resources links has been growing, now approaching unmanageable — time organize into several bundles by categories.

My latest find is a purple PH Lung T-Shirt (in French and English) from the PHA Canada. I want that T-shirt! PH Canada‘s Awareness site, Life in Purple (#lifeinpurple hashtag), is another good source for images and handouts.

[Brittany Foster]

Awesome Vanessa.
Thank you! There is a user I follow on Instagram with the name “justbreathemiami” that features someone on oxygen every Tuesday with the tag #o2tuesday . I sent my picture to them so maybe they will feature me on a Tuesday!

[Vanessa Vaile]

Brittany, thanks. I’m now following Just Breathe Miami on Instagram.

There’s a Just Breathe Miami website too: “Inhale. Exhale. Raising awareness for chronic lung disease. Founded by Dr. Kori Ascher, Miami pulmonologist.” (focus on fund-raising)

Next @phaware @actelion_com and other PH experts are hosting an hour long #PHAwarenessChat on Twitter, which anyone can join by using (or following) the hashtag #PHAwarenessChat The tweet chat will run Thursday November 15th at 8:30 a.m. PT / 11:30 a.m. ET, 16:30 GMT #phaware. You need a Twitter account to comment and join the conversation but don’t need one to follow.

https://twitter.com/phaware/status/1059843289375887361

Might cross-post this to social media thread

Join @phaware @actelion_com and other PH experts for an hour long #PHAwarenessChat on Twitter, which anyone can join by using (or following) the hashtag #PHAwarenessChat The tweet chat will run Thursday November 15th at 8:30 a.m. PT / 11:30 a.m. ET, 16:30 GMT #phaware pic.twitter.com/hCd5zG0kWB

— phaware® (@phaware) November 6, 2018

[Brittany Foster]

Thanks for the link to this Vanessa! I am attending my PH monthly support group this Saturday so I’m hoping to spread some awareness and will let them know about this too and will let them know about the forums!

[jen-cueva]

Great job on awareness!
I am waiting for a Proclamation from my city Mayor,as she already agreed to do it, just waiting to hear when to go meet her and pick it up !

On Facebook, I do a little like change my profile pic and cover photo . I also share a few new and old PH related facts and thoughts .

I also have a Life with PH board on Pinterest, but I haven’t added a ton there . I don’t have an Instagram, trying to keep up already more on what I am on, lol 😂

[Brittany Foster]

Jen you should totally create an instagram for yourself
I find it easier to use than Facebook! You get to see the pictures much faster instead of scrolling through a lot. I do like Facebook though how it allows you to share articles and links. Instagram doesn’t have that share feature. I also changed my profile and cover photo! My theory is , even if I reached one person or taught even one person something about this disease then I’ve done my job.

[jen-cueva]

Not sure if I just missed this link, but anyone interested in Awareness May find tips as well as a toolkit with free printable, etc from PHA.

https://phassociation.org/therightheart/

[Brittany Foster]

Thanks for the link! Free printables are always so helpful! Even to take to doctors or an ER lol! Like “here, its a simple visual of my complex condition” now treat me hahahaha

[jen-cueva]

So true Brittany!

Too funny, definitely neee those to print fir the ERs …and love your humor…

[Brittany Foster]

Thanks Jen,
If I didn’t make jokes and have a sense of humor I’d be crying lol. Thats what I save to torture my therapist with mwahahaha !

[jen-cueva]

Thanks Brittany again for the reminder, Tuesday I made a few PH aware cookies , hearts and circles with frosted buttercream and light purple sprinkles. Yesterday, my PH Doc and her staff enjoyed them and were super excited.

They were yummy, sadly I only saved me one and hubby finished it , then took one tiny Daughter and her Fiance to share, the heart ones were pretty big, lol 😂 💜

[Brittany Foster]

Those cookies sound delicious!!! I always love surprising the doctors offices with some treats! It’s also a good stress relief for me when I do some baking before appointments! You should make a separate batch just for YOU to enjoy!

[jen-cueva]

Lol, thanks Brittany,
If I made an extra bash fit me, I would eat them all in a day, lol 😂

That just reminded me, I did have extra dough left that I froze, will try NOT to think of them lol

[Brittany Foster]

Jen,
If it were me I’d eat the dough raw hahahaha nothing like living on the edge !!!! 😉

[Vanessa Vaile]

Raw dough party! Sounds a treat. Aren’t we already living on the edge?

Speaking of awareness raising, I came across a video of an intriguing exercise ~
having people do a 6MWT holding their noses and breathing through a straw. My usual computer is being contrary today so finding the saved video to share may have to wait a bit.

[Brittany Foster]

Vanessa,
I have heard of the straw challenge as a way to raise awareness for lung disease and PH! Sounds like a great way to spread awareness. It would be amazing if something like that could catch on as strongly as the ALS “ice bucket challenge” . Have you heard of that? It was great for awareness and really went viral. A lot of celebrities would do it and challenge someone else after they completed it. The straw challenge if it caught on and someone challenged someone else afted they were finished with it would be great for awareness.