Christie Patient
Forum Replies Created
-
So very sorry for your loss Tracy. Thank you for sharing the news. You’re welcome to talk about Sandy here any time and we can help you remember her. Hugs,
Christie -
ATTENTION ALL:
Zoom meetings are LIVE. They are held at the scheduled time and date posted. They are not ongoing and you cannot access the content via the link to zoom now that it is over.
Wesley @wranger was thoughtful enough to record the meeting for those who could not attend. Please send him a private message by going to his profile if you would like to receive the recording to watch. He can email it to you.
PLEASE DO NOT POST YOUR PRIVATE EMAIL ADDRESS IN THIS THREAD. It will be removed. This is a required guideline of the forums to protect your privacy.
There will be future meetings. Please keep an eye out for NEW threads with new information and links for upcoming meetings.
If you would like to continue the discussion of the subject matter of the meeting, please start a new thread or search in the forum for related posts.
@tootallron @junebeauty610 @mima1123 @jeffc49 @newcastle @jeannine-franco @gbadalone @artlamb @smithda13 @southwind00 @dhptrsn @msteinauer
-
Community! Can you help answer these questions for Garry? I know all our experiences are unique, but insight is helpful. Thanks!
“My question to this group is do you ever get used to taking it, do the symptoms lessen over a certain time. Do you ever stop thinking about it and what it’s doing to your body.”
Hi Garry, I’m sorry you’re sturggling with symptoms. Most people do adjust, which you’ll find if you read around this forum a bit. I’m going to repost your question here for other readers to respond to. Since it was at the bottom of your post, it might have gotten skimmed over and not really read by some. Hopefully you’ll get more responses.
-
My family and several other transplant patients I know use BlueAir purifiers. Not sure if they have one with a carbon filter but you can peruse their website to see https://www.blueair.com/
-
Hi all, if you posted your email address publicly, I have forwarded them to Wesley in a private message. Going forward, please keep personal contact details private to protect yourself from scammers and unwanted contacts. We do our best to moderate, but scammers do get through once in a while.
-
Thank you for organizing and facilitating this Wesley! Probably not an ideal day for our US members (thanksgiving holiday) but I’m glad to see it’s kicking off. 🙂 Keep up the good work.
-
@holly didn’t you have one that was repaired at the time of your fundoplication?
-
Hey everyone, a note from your moderator here. Please be cautious about sharing personal contact information on the web. Our site is a safe place, but it is open to the public and therefore so are any email addresses that you post here on the forum. You are welcome to coordinate a group with each other, but it would be safer if you sent your personal email addresses to @wranger Wesley in a private message so that he can coordinate with you. Click his name to go to his profile and send a message from there. Any posts with email addresses visible will be subject to moderation and removal. Thanks!
Christie -
Yes, great question. There are plenty of folks in here who have had successful transplants.. There are scores more that aren’t in the forums simply because they are out there living healthy lives and not thinking about being in this forum anymore. Which is fair 🙂 But here are a few folks that come to mind in this forum, perhaps some of them can jump in and share their experiences:
@holly
@dennisr13
@samuel-kirton
@davidota
@bagchi
@jackblum
@haroldabrown
@chas2712
@masonryt
@mikemc
@driscco
@milleke
@spegeyeThere are also several columns on our site from post-tx folks–mine documents my mom’s tx, Sam Kirton, Kevin Olson, Emma Schmitz documented her mother’s tx, and Mark Koziol.
-
Private Message
-
Hi Rumana, I am not a doctor but I can’t say I’d advise inhaling honey (i mean, in general), but especially if your mom is diabetic. You do absorb things into your bloodstream from your lungs. Oxygen, obviously, but also larger molecules (nicotine, etc), and particulates like smoke. If sugar could be nebulized and absorbed through the lungs I imagine it could get really dangerous really fast for someone with diabetes. I’d talk about this with her doctor before trying any home remedies in the nebulizer.
-
What a lovely, compassionate, and helpful post Bruce. Thank you for sharing your story and advice here. I know a lot of people are afraid of the end stages of this illness. It’s good to hear from people who have seen it, and you have the unique position of having both seen IPF in family members and experienced it yourself. Your perspective is valuable.
-
Hi Phil, if you are a patient at UCSF, they do have a great monthly support group for ILD patients and one for caregivers as well. We also have a facebook group to supplement that if you’re on social media. 🙂 Sounds like you’re taking good care of your mental health, but if you want to connect with other patients…
-
The flier is a great idea Karen! Or even just a business card that the doc could share with other patients that has Ted’s contact info on it if he’s open to sharing that.
-
The flier is a great idea Karen! Or even just a business card that the doc could share with other patients that has Ted’s contact info on it if he’s open to sharing that.
-
Hi DJ, I understand your statement is an opinion, but I must add some information for clarity for other forum members. Yes, vaccines are “inflammatory” by nature. All of them are. So is getting a cold, taking a hike, or eating something you’re mildly allergic to. Inflammation is a normal part of being a human. Prolonged inflammation can cause problems, yes, but the inflammation caused by vaccines is negligible.
The way vaccines work is by stimulating your immune system with innocuous parts of a contagion–or in the case of the mRNA COVID vaccines, with a harmless part of the coronavirus that causes COVID, called a spike protein. The inflammation caused by vaccines is short-term, often not even noticeable, and is easily treated with anti-inflammatory medications like Tylenol.
Scientists and doctors widely agree that the vaccines are safe for most people, and their recommendation to give them to people with health issues or compromised immune systems is because the potential risks of getting COVID are far greater than the risks of getting the vaccine. Incidences of injury from vaccines are extremely low, whereas incidences of lasting health problems (long covid, PF, chronic hypoxia, etc.), and death are significantly higher in people who have not been vaccinated, especially those with pre-existing conditions like PF
-
Hi @wranger I removed your private contact details from your post. I’ve advised others in the thread to send you a private message through the forums so that your personal contact info isn’t out there for the public to see. You should get email notifications of those messages, but if not, you can access them from your profile.
We try to stay on top of things here but every once in a while a scammer slips through the cracks and wreaks havoc. Just trying to keep you safe as you forge ahead with this wonderful online support group. Thank you for “taking the bull by the horns”
Christie
-
Hi @sweetred22 I removed the private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
-
Hi @bradley88 I removed your private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
-
Hi @jgrubbgrubblegal-com I removed your private contact details from your post. Please send them in a private message to @wranger so that he may coordinate with you safely. Thanks!
-
Great advice Thomas.
This column might be helpful for all of you who are interested in tracking your test results and progression over time. Kevin Olson used multiple tracking methods before his lung transplant. -
Definitely. Your doctors should be able to explain everything in detail. Getting that info my email/portal message will be helpful as you can re-read and learn from it going forward.
-
Great advice @gmanol. I think a lot of people hesitate to start because of all the discussions about side effects. I definitely am on the try it and “deal with it if/when you get there” train myself. I’m glad the meds are working well for you now!
Definitely appreciate the financial advice too. Lots of folks here are looking for ways to help afford OFEV and Esbriet.
-
What great info! Thank you for sharing this @stewart! Your exercise routine and discipline with tracking your data and adjusting your habits to help gain weight and strength are really impressive. keep up the good work 🙂