#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

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Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited about today’s #patientchat
Alexa Jett 🦋 @ohhiialexa
Hello friends of #patientchat! I’m Alexa in East Texas. I am a thyroid cancer survivor and AYA (Adolescent/Young Adult) Cancer advocate. Happy Thyroid Cancer Awareness Month, and to anyone else who is celebrating a awareness month! 🦋💜
Patient Chat @patientchat
Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
Greetings, #patientchat - Casey Q aka Mighty Casey here. Regular contributor to @power4patients blog, also mostly-regular participant here. Health/data policy wonk, #epatient, #openscience activist, #bcsm member (dx 2007, ER/PR+ St 2a, NED since 2008)
Patient Chat @patientchat
Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@patientchat @power4patients #patientchat https://t.co/8SQtFW3tJr
Patient Empowerment Network @power4patients
RT @patientchat: You can find info on today’s Empowered #patientchat here: https://t.co/YcLUqrICt2
Diverse Health Hub @DHealthhub
@patientchat Hi everyone, I’m Nykema from DHH. Hope you all had a wonderful week and an even better weekend ahead of you! #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@ohhiialexa #patientchat https://t.co/uP2SVER0OD
Patient Chat @patientchat
You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat
Alexa Jett 🦋 @ohhiialexa
@MightyCasey Hello to my favorite #patientchat comic relief! https://t.co/Zd0yeuO0gU
Patient Chat @patientchat
Today's #patientchat topic is Asking the Right Questions at the Right Time: Navigating Your Path to Empowerment https://t.co/YcLUqrICt2
Vera Rulon FAHIMA @vrulon
#patientchat Hello everyone! Vera R here from NY. Advocate, thought leader, ready to chat!!! @patientchat
Patient Chat @patientchat
I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat
Alan Brewington @abrewi3010
Alan here. I fell off a cliff rock climbing, have #rheumatoidarthritis #afib #chronicpain #degenerativediskdisease, #PTSD and #depression. I work full time still, #ski, and practice #photography. #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Patient Chat @patientchat
T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with them? #patientchat https://t.co/Up4QqGN2iZ
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@LaurenCTesta #patientchat https://t.co/lEJPLHl2hz
Alexa Jett 🦋 @ohhiialexa
T1: I didn’t have any resources outside of my hospital when I was first diagnosed. However, I took advantage of chaplaincy services regularly! The entire staff were very helpful to me. #patientchat
Patient Empowerment Network @power4patients
@abrewi3010 Hey Alan, where is your favorite place to ski? We're expecting our first frost here in CO early next week so snow is right around the corner! I'm interested to see what skiing will be like in the COVID era. #patientchat
Diverse Health Hub @DHealthhub
RT @patientchat: T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with th…
Patient Empowerment Network @power4patients
RT @patientchat: T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with th…
Vera Rulon FAHIMA @vrulon
T1: I did a lot of my own research online. One thing I wish I had done more of was research the meds that I was prescribed before agreeing to take them. Too much trial and error, side effects, struggle, to find the right combo! #patientchat
Vera Rulon FAHIMA @vrulon
@ohhiialexa Unsung heros! #patientchat
Alexa Jett 🦋 @ohhiialexa
@vrulon Absolutely! Chaplains are amazing people. #patientchat
Alan Brewington @abrewi3010
A1 since my rock climbing fall I’ve been playing catch with knowledge and resources. Mostly I ask questions, even so called dumb questions can help identify someone’s character. I found #patientchat & #medx early in my epatient days which made my life easier & funnier
Vera Rulon FAHIMA @vrulon
[REDACTED USER] Really excellent resource! #patientchat
Patient Empowerment Network @power4patients
@patientchat We encourage newly diagnosed #cancer patients to start with us to help orient them to the Path to Empowerment Framework but to also engage with disease-specific advocacy groups, many of whom are our partners #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A1: this is almost can'o'worms/PTSD for me. Breast cancer dx in '07 meant not a lot of peer groups not attached to ACS or breastcancerdotorg forums. That was YMMV, not super helpful at the time. 1/x #patientchat
Viet Le DMSc PA-C FACC FAHA HF-Cert @VietHeartPA
RT @patientchat: T1: What resources did you connect with when you were newly diagnosed? How did you find them and who connected you with th…
Christina Lizaso @btrfly12
RT @vrulon: T1: I did a lot of my own research online. One thing I wish I had done more of was research the meds that I was prescribed bef…
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A1: finding @stales on Twitter (joined April '08 during chemo - 140chars = perfect for chemobrain) was a BIG help. Also I'm a #journo so researching topics is one of my superpowers, along with fact-checking. #patientchat 2/x
Mary Leer @vleer_ny
#patientchat
Patient Chat @patientchat
Topic 2 (T2:) coming up... #patientchat
Patient Empowerment Network @power4patients
[REDACTED USER] @abrewi3010 Yep, it's going to be 98F here in Boulder this weekend then a frost on Tuesday. Colorado weather keeps it interesting #patientchat
Alan Brewington @abrewi3010
@power4patients That’s a hard question. Some of the best ski adventures I’ve had are with my friends at our home resort of @BOGUSBASIN. Snowbird Ut is amazing bc of the tram and snow quality. Mt Hood in August was fun #patientchat
Patient Chat @patientchat
T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https://t.co/52SyA5Z8XO
Inspire @InspireIsHealth
RT @patientchat: T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https:/…
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A1: found some local IRL/f2f friends had had breast cancer, their input was also helpful. Accidental meeting in a grocery store (long story, it's in my book) linked me w/surgeon who was *outstanding*, she recc'd right onc for me, and so it goes. #patientchat 3/x
Inspire @InspireIsHealth
Hello to #patientchat, John Novack from Inspire checking in to listen and learn.
Diverse Health Hub @DHealthhub
RT @patientchat: T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https:/…
Alan Brewington @abrewi3010
[REDACTED USER] @power4patients A couple places got dumped on according to the news. #patientchat
Vera Rulon FAHIMA @vrulon
@teaminspire Hello John!! Welcome! #patientchat
Alexa Jett 🦋 @ohhiialexa
@RarePOV It can be so isolating being a young adult with any type of diagnosis. I understand being the “young person”! #patientchat
Patient Empowerment Network @power4patients
@RarePOV We hear this so often in #cancer education and support. Most of the resources available are geared toward an older audience. That's why we love @StupidCancer and other orgs that support younger patients #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A1: forums were, as I said, YMMV on fleek. Lots of outrage at some of my questions (like: is chemo totally necessary), seemed most folx wanted me to validate their experience by having exact same experience. That's not how this #epatient rolls. 4/4 #patientchat
Christina Lizaso @btrfly12
Waving hello to #patientchat :) If interested in joining the chat - more info here: https://t.co/uaAWAkl3hC
Patient Empowerment Network @power4patients
RT @patientchat: T2: If applicable, were you offered genetic testing? If so, how did it impact your treatment journey? #patientchat https:/…
Alan Brewington @abrewi3010
A2 I’ve never been offered genetic testing as far as I remember. In their defense I don’t think I’ve ever asked for it. #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@power4patients @RarePOV @StupidCancer I second that on Stupid Cancer! YA folx need peer support from *actual* peers. #patientchat
Vera Rulon FAHIMA @vrulon
T2: Interesting question. Wasn't offered. #patientchat
Mary Leer @vleer_ny
@patientchat Ok, I’m Mary in NYC right now and having some difficulty with tech today. But will hopefully be able to participate #patientchat
Patient Chat @patientchat
Topic 3a (T3a:) coming up...#patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A2: ANOTHER HOT BUTTON FOR ME. DX in '07 TX thru '08 = before ACA. My insurance was, in short, crap. I was not offered genomic testing, only one avail at time (IIRC) was OncotypeDX, would have had to self-pay, couldn't afford it. #patientchat
Patient Chat @patientchat
T3a: What are your tips to get the best, most-personalized treatment for your situation? How can you plan for treatment side effects? #patientchat https://t.co/pNiCAziMgQ
Christina Lizaso @btrfly12
Peer groups can be a great place to discover topics and questions you don't know enough to even know to ask about. Finding a peer group that works for you isn't easy and patients often left on own to find. Unfortunately there can be some toxic ones to sort through #patientchat
Patient Empowerment Network @power4patients
[REDACTED USER] This is exactly why it's so important to INSIST on genetic testing to determine best treatment path for you #patientchat
Alexa Jett 🦋 @ohhiialexa
@MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic illnesses! @Srotberg15 and @lilannalaurent do amazing work for this population. #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T3a: What are your tips to get the best, most-personalized treatment for your situation? How can you plan for treatment si…
Christina Lizaso @btrfly12
Peer groups also give you confidence to speak up for yourself and ask those questions. #patientchat
Christina Lizaso @btrfly12
RT @ohhiialexa: @MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic il…
Patient Empowerment Network @power4patients
RT @btrfly12: Peer groups can be a great place to discover topics and questions you don't know enough to even know to ask about. Finding a…
Alexa Jett 🦋 @ohhiialexa
T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any between appointments, take advantage of your patient portal. #patientchat
Christina Lizaso @btrfly12
RT @ohhiialexa: T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any betwee…
Patient Chat @patientchat
@vleer_ny Hi Mary, glad you could join! Feel free to jump in wherever :) #patientchat
Patient Chat @patientchat
Topic 3b (T3b:) coming up...#patientchat
Alan Brewington @abrewi3010
A3a tell your doc both the good and bad of your current quality of life. Provide constant updates to your #QOL. Most docs care & want to help, sharing ur story helps develop the care portion of #healthcare #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A3a: where #peertopeer can really accelerate info-gathering and decision-tree building. Obvi you want input from clinical team, and with that info you can formulate ?s to ask peer group folx. Which in turn builds ?s for clinical team. Virtuous cycle, #epatient style #patientchat
Patient Chat @patientchat
T3b: Were you offered and/or did you consider a clinical trial as a treatment option? #patientchat https://t.co/oH5avBixel
Christina Lizaso @btrfly12
Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you as a person and what is important to you. This helps in getting personalized care. See @abrewi3010 - I've been listening to your #patientchat wisdom :)
Diverse Health Hub @DHealthhub
RT @patientchat: T3a: What are your tips to get the best, most-personalized treatment for your situation? How can you plan for treatment si…
Adam Johnson - DadVocate @RareDiseaseDad
RT @btrfly12: Waving hello to #patientchat :) If interested in joining the chat - more info here: https://t.co/uaAWAkl3hC
Christina Lizaso @btrfly12
RT @MightyCasey: A3a: where #peertopeer can really accelerate info-gathering and decision-tree building. Obvi you want input from clinical…
Alexa Jett 🦋 @ohhiialexa
RT @btrfly12: Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you…
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A3b: was not offered trial(s), also didn't ask, so that may be why. Had I been, I would have done one. I'm all about the #science and #clinicalresearch. #patientchat
Alan Brewington @abrewi3010
A3b I’ve participated in a couple of trials. Another time #rheum was able to get the medicine in trail bc I had no insurance at the time #patientchat
Alan Brewington @abrewi3010
Yessss X 100000
Christina Lizaso @btrfly12
Too often patients are the ones who have to bring up clinical trials. In a lot of cases trials help ensure you are getting the most up-to-date care - even in the control group. #patientchat
Alan Brewington @abrewi3010
Yesss X 100000 #patientchat
Patient Empowerment Network @power4patients
@btrfly12 @abrewi3010 YES 100% #patientchat
Mary MACK @MaryOCMack
T2: It has to be said that genetic testing should guide treatment. Insurance companies denying that which is indicated clinically and confirmed w/genetic testing. #patientchat
Patient Empowerment Network @power4patients
RT @btrfly12: Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you…
Patient Empowerment Network @power4patients
RT @patientchat: T3b: Were you offered and/or did you consider a clinical trial as a treatment option? #patientchat https://t.co/oH5avBixel
Vera Rulon FAHIMA @vrulon
T3a: Tips for personalized treatments - usually talk it through with my doctor, however too often let her talk me into trying somethings that ends but making me feel worse. No more. #patientchat
Christina Lizaso @btrfly12
RT @vrulon: T3a: Tips for personalized treatments - usually talk it through with my doctor, however too often let her talk me into trying s…
Diverse Health Hub @DHealthhub
RT @abrewi3010: A3a tell your doc both the good and bad of your current quality of life. Provide constant updates to your #QOL. Most docs c…
Patient Empowerment Network @power4patients
RT @btrfly12: Too often patients are the ones who have to bring up clinical trials. In a lot of cases trials help ensure you are getting th…
Diverse Health Hub @DHealthhub
RT @ohhiialexa: T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any betwee…
Vera Rulon FAHIMA @vrulon
T3b: Offered a trial once but was declined and never knew why. There needs to be more #transparency and local clinicians need to be more open to referring patients to trials. #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A3b: Will observe that #clinicaltrials are now a hot topic in all #peertopeer #cancer communities I know of. Also, in time of COVID, trials that use remote monitoring are growing in number. Check out @_DiMeSociety + @Medidata (hi @stales 🤣) + many more. #patientchat
Alan Brewington @abrewi3010
A3b clinical trials are hope but in homework format. Definitely recommend participating in one if given an opportunity #patientchat
Christina Lizaso @btrfly12
RT @vrulon: T3b: Offered a trial once but was declined and never knew why. There needs to be more #transparency and local clinicians need t…
Christina Lizaso @btrfly12
#patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A3b: follow on to that, from NCI at NIH: https://t.co/5G0EAixjYf #patientchat
Inspire @InspireIsHealth
RT @MightyCasey: A3b: follow on to that, from NCI at NIH: https://t.co/5G0EAixjYf #patientchat
Diverse Health Hub @DHealthhub
@ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speaking with your provider. This is YOUR care! #patientchat
Patient Chat @patientchat
Topic 4 (T4) coming up... #patientchat
Adam Johnson - DadVocate @RareDiseaseDad
Thanks, Christina, for helping me discover #patientchat! T1: Still in shock, I was given a quick, vague printout after being diagnosed w/ mitochondrial myopathy. Took some digging and lots of perseverance, but I stumbled across @MitoAction. So thankful for this amazing support!
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
RT @btrfly12: #patientchat https://t.co/Pvc50WEOwO
Alexa Jett 🦋 @ohhiialexa
RT @DHealthhub: @ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speakin…
Patient Empowerment Network @power4patients
RT @DHealthhub: @ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speakin…
Christina Lizaso @btrfly12
RT @RareDiseaseDad: Thanks, Christina, for helping me discover #patientchat! T1: Still in shock, I was given a quick, vague printout afte…
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
RT @MaryOCMack: T2: It has to be said that genetic testing should guide treatment. Insurance companies denying that which is indicated cli…
Alexa Jett 🦋 @ohhiialexa
@DHealthhub Exactly!!! #patientchat
Patient Chat @patientchat
T4: What are some of the barriers to access the best treatment for you? What are some ways to overcome access barriers? #patientchat https://t.co/7dMBEea8lN
Christina Lizaso @btrfly12
RT @patientchat: T4: What are some of the barriers to access the best treatment for you? What are some ways to overcome access barriers? #p
Patient Chat @patientchat
@RareDiseaseDad @MitoAction Welcome @RareDiseaseDad! #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A4: Cost. Cost. Cost. Cost. Did I mention cost? Drove too many of my decisions during tx. Still does for too many patients via deductibles/co-pays/co-insurance bushwa. UNIVERSAL COVERAGE, plz. #patientchat
John P Erwin III MD MBA FACC (#BigPoppy ) @HeartOTXHeartMD
RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/YcLUqrICt2
Alan Brewington @abrewi3010
A4 having no insurance was a big barrier. Many docs offered me great payment plans bc I was willing to work with them. Been offered many free meds docs had at office bc they cared about my QOL. #patientchat
Patient Chat @patientchat
@vleer_ny Hi Mary, if you use this link: https://t.co/hKoTzayiIy you can following along with the live chat and be sure to include the hashtag #patientchat in all your responses so everyone can see :)
Vera Rulon FAHIMA @vrulon
T4: Depends on what access you are looking for... #Drugs PBMs are often a barrier to personalized treatments - denying Rx that works for you and having you try multiple different options #clinicaltrials barriers exist in lack of awareness, literacy #patientchat (more to come)
Alexa Jett 🦋 @ohhiialexa
T4: My biggest barrier is my location. I live rurally and have to travel several hours to reach my care team. Plus my internet isn’t the best all the time, so that poses challenges with telehealth and online support. #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A4: In re my cost rant, there are resources locally and nationally via foundations large and small where #cancer patients can apply for assistance w/costs of treatment. Clinical teams often know those, but most of the time you gotta ask. #patientchat
Patient Empowerment Network @power4patients
RT @MightyCasey: A4: Cost. Cost. Cost. Cost. Did I mention cost? Drove too many of my decisions during tx. Still does for too many patient…
Patient Empowerment Network @power4patients
RT @patientchat: T4: What are some of the barriers to access the best treatment for you? What are some ways to overcome access barriers? #p
Alan Brewington @abrewi3010
A4 cost, especially in relation to physical therapy. PT maintenance should be standard treatment for all #arthritis based patients but it costs to much #patientchat
Patient Empowerment Network @power4patients
RT @MightyCasey: A4: In re my cost rant, there are resources locally and nationally via foundations large and small where #cancer patients…
Patient Chat @patientchat
Topic 5 (T5:) coming up... #patientchat
Christina Lizaso @btrfly12
Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to cover my bases. Means too many appointments and too much care coordination. Also barrier of no clear guidelines for mutation w/little research #patientchat
Christina Lizaso @btrfly12
RT @MightyCasey: A4: In re my cost rant, there are resources locally and nationally via foundations large and small where #cancer patients…
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
RT @btrfly12: Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to…
Patient Chat @patientchat
T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #patientchat https://t.co/kJYLVEJ7LN
Alan Brewington @abrewi3010
A4 lack of resources relating to extreme physical trauma, like falling off a cliff. The physical toll trauma plays on the body is not understood well. #patientchat
Christina Lizaso @btrfly12
RT @patientchat: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #pa
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
RT @vrulon: T4: Depends on what access you are looking for... #Drugs PBMs are often a barrier to personalized treatments - denying Rx that…
Diverse Health Hub @DHealthhub
RT @patientchat: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #pa
Barby Ingle Official @BarbyIngle
Even set an alarm, and then I got so into something else that I am late... :( Here now... T1: There was not a lot of resources when I got dx, so I started creating my own. It was hard, it was trial and error... a lot of error, there are a lot more resources now. #patientchat
Mary MACK @MaryOCMack
T4: USA For- Profit mechanisms huge barrier for most people. Also, medical culture, unlevel playing field I resent. #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #pa
Inspire @InspireIsHealth
RT @patientchat: T5: What type of social/mental/physical/nutrition support have you had as a patient? Where can you go to find support? #pa
Patient Empowerment Network @power4patients
RT @btrfly12: Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to…
Alexa Jett 🦋 @ohhiialexa
T5: I find my support in the AYA community! I am active with @DansHouseofHope, @LacunaLoft, @ElephantsTea, and @MDAndersonNews Cancer 180 program. #patientchat
Alan Brewington @abrewi3010
Maybe it’s the chronic part of my life but the number of specialists and their function is a barrier. Hard to keep up and understand what each does. #patientchat
Barby Ingle Official @BarbyIngle
T2: Not in the beginning 1997 or even 2002 ... not until 2016/2017... and I did the first on my own, and then a specialists ordered it w genetic counseling. #patientchat
Alan Brewington @abrewi3010
A5 most of my nutritional knowledge comes from fellow patients. Docs just yell “no more Starbucks” and no Alan “chocolate chip cookies are not life” #patientchat
Adam Johnson - DadVocate @RareDiseaseDad
T2: Insurance denied genetic testing request from my doc who wanted to learn more about my disease(s)/potential causes. I was upset, but asked to be kept in mind for trials. I was able to get in on a sequencing test, which showed VUS. I guess it ended up a win!/win? #patientchat https://t.co/T045MYsU44
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A5: I kinda rolled my own, based on my time as family care manager (for 'rents) along w/journo skills/tools from decades digging around for stories. Developed a neutropenia food plan that worked. Dr. Driveby (long story, again, in book) didn't GAF. #patientchat
Patient Chat @patientchat
Last topic (T6:) coming up... #patientchat
Barby Ingle Official @BarbyIngle
T3a: To get best TX for your situation. Ask questions, set expectations, keep great record keeping, and know there will be setbacks... that is not defeat, keep going. #patientchat
Christina Lizaso @btrfly12
RT @BarbyIngle: T3a: To get best TX for your situation. Ask questions, set expectations, keep great record keeping, and know there will be…
Patient Chat @patientchat
T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we
Barby Ingle Official @BarbyIngle
T3b: Yes, I have been apart of multiple clinical trials. One of the options is something I still use in my life everyday for help. #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
RT @BarbyIngle: T3a: To get best TX for your situation. Ask questions, set expectations, keep great record keeping, and know there will be…
Patient Empowerment Network @power4patients
RT @patientchat: T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we
Nancy's Point @NancysPoint
RT @btrfly12: Though doc's should bring it up... even if they don't, be sure you discuss YOUR GOALS for care. Let ur doctor get to know you…
Christina Lizaso @btrfly12
RT @abrewi3010: A5 most of my nutritional knowledge comes from fellow patients. Docs just yell “no more Starbucks” and no Alan “chocolate c…
Patient Empowerment Network @power4patients
RT @RareDiseaseDad: T2: Insurance denied genetic testing request from my doc who wanted to learn more about my disease(s)/potential causes.…
Christina Lizaso @btrfly12
RT @abrewi3010: Maybe it’s the chronic part of my life but the number of specialists and their function is a barrier. Hard to keep up and u…
Christina Lizaso @btrfly12
RT @ohhiialexa: T5: I find my support in the AYA community! I am active with @DansHouseofHope, @LacunaLoft, @ElephantsTea, and @MDAndersonN
Our Odyssey @_OurOdyssey_
RT @ohhiialexa: @MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic il…
Diverse Health Hub @DHealthhub
[REDACTED USER] Wow, that sounds great! And we all deserve a little ice cream 🍦 #patientchat
@Srotberg15
@ohhiialexa @MightyCasey @power4patients @RarePOV @StupidCancer @_OurOdyssey_ @lilannalaurent Appreciate the shoutout 🙌😊
@Srotberg15
RT @ohhiialexa: @MightyCasey @power4patients @RarePOV @StupidCancer And @_OurOdyssey_ is a amazing for young adults with rare or chronic il…
Diverse Health Hub @DHealthhub
RT @BarbyIngle: T3b: Yes, I have been apart of multiple clinical trials. One of the options is something I still use in my life everyday fo…
Alexa Jett 🦋 @ohhiialexa
T6: Take each day at a time and try not to live too much in the future. Even though it is so difficult. “Worry does not empty tomorrow of its sorrow, it empties today of its strength.” -Corrie Ten Boom #patientchat
BreastCancer Chat WW #BCCWW @bccww
@patientchat T2: Not at time of diagnosis but BRCA testing some years after. As it happens my result was VUS. Grateful I didn’t actually know this at diagnosis as it may well have caused unnecessary anguish but it was worth it at the point it happened. #patientchat
Kits to Heart @kitstoheart
@patientchat Giving back and helping others affected by cancer :) #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A6: My No 1 superpower is finding the funny in ... any and everything. Close second is being able to focus rage into humor =) #patientchat https://t.co/HTtPkb7lxT
Barby Ingle Official @BarbyIngle
T4: Some of my barriers continue 2b step therapy, prior auth delay, not being believed n acute situations because ER pros dont know about rare diseases? I have asked after those situations r over that some of those pros receive add'l training, incase I have 2 go back #patientchat
Inspire @InspireIsHealth
RT @patientchat: T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we
Alexa Jett 🦋 @ohhiialexa
[REDACTED USER] It’s one of my favorites! #patientchat
Alan Brewington @abrewi3010
A6 living my best life has very little to do with my treatment and beyond. They are tools I have. My living my best life comes from the same reasoning as I play in mountains, It’s bc life is there. The rest is just part of the story I create #patientchat
Vera Rulon FAHIMA @vrulon
Sorry folks. Need to drop off. :( #patientchat great chat!!
Kits to Heart @kitstoheart
@patientchat I found @SmithCenterDC and @ulmanfoundation to be fantastic resources! #patientchat
Matthew Katz, MD 🟦 🇺🇸 @subatomicdoc
RT @patientchat: T6: What do you do to live your best life through treatment and beyond? #patientchat https://t.co/KkZAVC15we
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
Hey @ACEPNow - maybe it IS a zebra sometimes =) #patientchat
Patient Chat @patientchat
@vrulon Thanks for joining - have a great weekend Vera! #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Barby Ingle Official @BarbyIngle
T5: I think I have the BEST PCP in the world because he has helped me in all the ways he knows & when I come to him w a 'lets try this', he talks it through w me & we make a plan. Full support w social/mental/physical/nutrition from him since day 1. #patientchat
Mary MACK @MaryOCMack
T6: I try to help other people that have the same rare disease that I do. Advocating for and educating. Nothing like showing people that they can get the gist of an academic paper. #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT…
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
[REDACTED USER] Key to remember "normal" is a dryer setting ... #patientchat
Christina Lizaso @btrfly12
RT @MaryOCMack: T6: I try to help other people that have the same rare disease that I do. Advocating for and educating. Nothing like showi…
Adam Johnson - DadVocate @RareDiseaseDad
@patientchat T5: Took a while but eventually I: -sought help (counselor) -accessed support calls -made an account on The Twitter -began reaching out/getting support via social (thank you all...you may not know it, but I learn from & appreciate you!) -began to own my story #patientchat
Barby Ingle Official @BarbyIngle
T6: I live my best life by never giving up on HOPE. Humanity is equipt with hope. I was born with an abundance of HOPE, and have nurtured hope my whole life. Hope drives me. #CheerleaderofHOPE #patientchat
Patient Empowerment Network @power4patients
@kitstoheart @patientchat Thanks so much for joining us today @kitstoheart! We're so honored by the opportunity to include our Activity Guide in your upcoming kits! #patientchat
Alan Brewington @abrewi3010
CT stealing what @MightyCasey just tweeted, normal is a drier setting. There is no normal life. #patientchat
Elephants and Tea @ElephantsTea
RT @ohhiialexa: T5: I find my support in the AYA community! I am active with @DansHouseofHope, @LacunaLoft, @ElephantsTea, and @MDAndersonN
@christie_mph
I even put #patientchat in my calendar and I'm still late! Hi all, I hope you are well.
Christina Lizaso @btrfly12
RT @RareDiseaseDad: @patientchat T5: Took a while but eventually I: -sought help (counselor) -accessed support calls -made an account on…
Alexa Jett 🦋 @ohhiialexa
CT: Life is a balancing act, we just have more things to balance. And it’s important to make sure we take care of our needs. #patientchat
Adam Johnson - DadVocate @RareDiseaseDad
[REDACTED USER] @btrfly12 So true! I haven’t experienced the toxic variety just yet, and it pains me to hear this. But I did find my own. It was a struggle, but I did it and continue to search! #patientchat
Kits to Heart @kitstoheart
@power4patients @patientchat Managed to drop in just in time :) We look forward to sharing the guides with our recipients! They are truly so well thought-out and useful! #patientchat 💕
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
Christina Lizaso @btrfly12
Have a wonderful weekend all on #patientchat Thanks for all you do to advocate for yourself and others!
Alexa Jett 🦋 @ohhiialexa
RT @btrfly12: Have a wonderful weekend all on #patientchat Thanks for all you do to advocate for yourself and others!
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour
Christina Lizaso @btrfly12
#patientchat
Diverse Health Hub @DHealthhub
RT @ohhiialexa: CT: Life is a balancing act, we just have more things to balance. And it’s important to make sure we take care of our needs…
Patient Chat @patientchat
Schedule Alert: We are back on our normal schedule with chats bi-weekly on Friday’s at 1pm ET | 10am PT #patientchat
Matthew Katz, MD 🟦 🇺🇸 @subatomicdoc
RT @patientchat: #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime.
@christie_mph
RT @DHealthhub: @ohhiialexa Yes! Questions are vital! As a patient you are your best advocate and you shouldn’t feel intimated when speakin…
Adam Johnson - DadVocate @RareDiseaseDad
@RarePOV The insurance fights can be utterly exhausting in and of themselves. Add that to the challenges already being faced, and it’s just brutal sometimes. I love your persistence and perseverance, though! #patientchat
Patient Chat @patientchat
Join us on September 18th for the next Virtual Empowered #patientchat “How to Apply Your Empowerment Skills to Your Health Journey”. Register here: https://t.co/LyrsfN3Zwk https://t.co/BNy8AnYBPJ
Patient Empowerment Network @power4patients
RT @RareDiseaseDad: @patientchat T5: Took a while but eventually I: -sought help (counselor) -accessed support calls -made an account on…
Diverse Health Hub @DHealthhub
RT @patientchat: Join us on September 18th for the next Virtual Empowered #patientchat “How to Apply Your Empowerment Skills to Your Health…
Inspire @InspireIsHealth
RT @patientchat: Join us on September 18th for the next Virtual Empowered #patientchat “How to Apply Your Empowerment Skills to Your Health…
Brandon Hudgins @bhudgruns
RT @btrfly12: Huge barrier for me as a previvor (and likely others w/rare or chronic) is that I need way too many different specialists to…
Adam Johnson - DadVocate @RareDiseaseDad
@BarbyIngle These barriers are all too real, right? I had an out of state test, called to make sure pre-auth was ok, still got $5k bill. Turns out it was a coding error. If we didn’t push back/dig deeper, I would’ve been stuck w/the bill. How many others have been in same boat? #patientchat
Adam Johnson - DadVocate @RareDiseaseDad
RT @ohhiialexa: T3a: Ask questions! Find lists of questions online to ask your doctors, and bring a notepad. And if you think of any betwee…
Barby Ingle Official @BarbyIngle
@RareDiseaseDad Exactly. In the beginning I spent thousands that I didnt owe, figuring that out I tried to get the $ back, just doesnt happen. Now I wait & check bills 2 EOB before paying 2 make sure no mistakes. A little harder w the 'transparency' rules & prepay now in AZ. #patientchat
Deb @debg_deb
Yes! Very true for myself also!
Adam Johnson - DadVocate @RareDiseaseDad
[REDACTED USER] @power4patients So challenging when my docs know what test I need, but a third party intermediary who has never seen or evaluated my symptoms before decides if it’s approved or not. And I say this knowing how privileged I am to have had quality coverage. What about others? Sigh. #patientchat
#patientchat content from Twitter.