-
Elle replied to the topic Life span in the forum Diagnosis Information and General Questions 4 months, 1 week ago
Well, I will tell you that I was diagnosed bc I saw it on my chest scan results that, I had requested. And the doctor there said, I am sorry you have Interstitual Pulmonary Fibrosis. But, my doctor who is also a Pulmonologist never told me for two years , I kept going crazy thinking why am I coughing so much? That’s major medical negligence. So, I…[Read more]
-
Elle replied to the topic Prednisone in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 4 weeks ago
Omg for Prednisone, Benzonate and Methylprednisolone all gave me arash, nausea, dizziness. I still haven’t gotten the Esbriet. But my dilemma has been my Insurance which is palin out being inhumane. I need to take Promathazine -Dm 4 times a day which is only every g hours, this new doctor agreed that I need oxygen, But again the Insurance is not…[Read more]
-
Elle replied to the topic Prednisone in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
Honestly, I had the worst reaction to Prednisone, Benzonate 100 which is “Tessalon,” by the way, and Methylprednisone. None of these crappy neds did anything for me. I was vomiting, experienced Nausea, I had rashes, couldn’t sleep, and had rashes. I don’t know, I am so tired of the medical negligence which, I am receiving. I am tired of the…[Read more]
-
Elle posted a new activity comment 7 months, 2 weeks ago
Hi Dave you are so sweet, I barely get out of bed. I had a gut feeling that , I was going to get worse nd that is what is happening to me right now.
-
Elle and
Christine McCann are now friends 7 months, 2 weeks ago
-
Elle posted a new activity comment 7 months, 2 weeks ago
Well, I am still stuck here in this awful New Jersey, I used to live in Miami. But, I was thinking about moving to Saint Petersburg. But, I would love it if we would keep in touch.
-
Elle started the topic I do art in the forum Hobbies & Projects 7 months, 2 weeks ago
I make miniature houses, I sketch, I paint. It really calms my nerves.
-
Tonya Worley and
Elle are now friends 1 year ago
-
Elle replied to the topic IPF patient symptoms in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
Wow I am happy that you guys can cough up the mucus. When I only had scarring on my left lung, yes I was able to cough up mucus. But it’s been like a year now that I have a very strong dry hacking cough that feels like I have two souls inside of me. And it hurts really bad because, I will cough for hours and hours. I also have now developed sort…[Read more]
-
Elle replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
Rod , I couldn’t of said it better….Thank you.
-
Elle replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
Hi Char thanks for writing back to me. Well from my end I know quite a few people especially when they are , I guess I don’t at the end of the line. I realize this is a terminal illness, and I truly hate how Doctors just don’t be more open on what to expect. I actually have seen many people mention here that they taCough Syrup like Promethazine…[Read more]
-
Elle replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
Hi Char ,
Thanks for repkying to me yes it’s not just the gerd, it’s the consistent high blood pressure, I am constantly getting dizzy which is due to lack of oxygen to my brain so, I am always falling. As, I have mentioned, I hurt my right knee badly. But , I am curious if anyone else has a pulmonologist that refuses to give cough syrup but…[Read more]
-
Elle replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
I feel the same way. But, if I may I would like to make a comment because I am curious to know if anyone else has similar symptoms to mine. I have developed severe Gerd, so now even if i want to eat, nothing goes down. I vomit almost every single day. I feel unbearable and excruciating pain in my lungs / chest, because I keep cough for hours and…[Read more]
-
Elle replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
I was so traumatized, because my doctor who is also a Pulmonologist never told me that, I had Pulmonary Fibrosis. so something told me to ask for the results of my Ct can and when I opened the letter , I saw on my results that, I had :”pulmonary Fibrosis.” Now it has spread to my right Lung. So I am one of the unlucky one in which my PF is getting…[Read more]
-
Elle replied to the topic Salty phlegm issue in the forum Using Our Forums 1 year, 6 months ago
Hello, nice to meet you. I am new also. I use the nebulizer and the inhaler and none of it works. My cough is so dry and I sound like there are 2 persons coughing inside my body. But I have something to say . Back in 2019, I was diagnosed by my M.D and pulmonologist that, I had pulmonary disease. But he was rather on the arrogant side, Then I say…[Read more]
-
Elle replied to the topic Gluten-free diet and organic fruits and veggies in the forum Healthy Recipe Sharing 1 year, 6 months ago
Hello how are you well I have been a vegetarian for the last five years and I can’t tell you how much lighter my stomach feels and how my energy is a lot better. But when I was diagnosed with Pulmonary Fibrosis I have lost my energy, and I have no appetite. Yes, I know organic food is very expensive. But really don’t spend that much on my…[Read more]
-
Elle changed their profile picture 1 year, 10 months ago
-
Elle changed their profile picture 1 year, 10 months ago
-
Elle posted a new activity comment 1 year, 11 months ago
Hi Charlene, so thank you for reaching out to me. Obviously, I am terrified because I have had Pulmonary Fibrosis since June 28, 2019. and now it’s 3 years later and I feel so much worse. Yes, I am currently seeking a third pulmonologist , I did find one that although is so far away from where, I am he is willing to do a Virtual consultation, the…[Read more]
-
Not sure where you are in New Jersey but if Philadelphia Pa is a reasonable distance, Dr. Gerard Criner at Temple Lung Center is a highly rated Pulmonologist and maybe a good option for another opinion. I personally have gone to him and he is an excellent doctor.
-
Hi Dave you are so sweet, I barely get out of bed. I had a gut feeling that , I was going to get worse nd that is what is happening to me right now.
-
Hi Elle, sorry to intrude on your chat with Dave, but just wanted to make you aware that you posted this as a status update in case you had meant to send it to him as a private message. On the other hand, it sounds like you are going through a bit of a rough patch, so if you could use some support from the group, I encourage you to start a topic…[Read more]
-
-
-
-
Elle posted a new activity comment 1 year, 11 months ago
No thank you Charlene for allowing me to join. I have to say I am extremely traumatized with my diagnosis, because my doctor knew since 06/28. 2019, and never told me anything. So, being that, I am asthmatic I just thought well actually, I didn’t know what to think because cough has gotten so much worse. I was upset t this so-called doctor because…[Read more]
-
Hi @ellebleu,
I’m so sorry to hear this – what an awful experience it seems like you’ve had. The cough is completely debilitating at times, isn’t it? Feel free to browse through the forums for remedies that have helped other IPF patients with the cough…it’s been discussed a few times. Fever and pain unfortunately also seem common too. I hate to…[Read more]
-
Hi Charlene, so thank you for reaching out to me. Obviously, I am terrified because I have had Pulmonary Fibrosis since June 28, 2019. and now it’s 3 years later and I feel so much worse. Yes, I am currently seeking a third pulmonologist , I did find one that although is so far away from where, I am he is willing to do a Virtual consultation, the…[Read more]
-
Not sure where you are in New Jersey but if Philadelphia Pa is a reasonable distance, Dr. Gerard Criner at Temple Lung Center is a highly rated Pulmonologist and maybe a good option for another opinion. I personally have gone to him and he is an excellent doctor.
-
Hi Dave you are so sweet, I barely get out of bed. I had a gut feeling that , I was going to get worse nd that is what is happening to me right now.
-
Hi Elle, sorry to intrude on your chat with Dave, but just wanted to make you aware that you posted this as a status update in case you had meant to send it to him as a private message. On the other hand, it sounds like you are going through a bit of a rough patch, so if you could use some support from the group, I encourage you to start a topic…[Read more]
-
-
-
-
-
- Load More
Hi Elle, sorry to intrude on your chat with Dave, but just wanted to make you aware that you posted this as a status update in case you had meant to send it to him as a private message. On the other hand, it sounds like you are going through a bit of a rough patch, so if you could use some support from the group, I encourage you to start a topic…[Read more]