Hi Kathy Medina, Laura, and Charlene,

I have noticed that Charlene hasn’t been posting as much as she had been so I figured she had to slack off for some reason. I know she is always under a lot of stress though and has to get away from it a little.

I experienced the dizziness that you all have mentioned. I had thought that it was due to… Read more

Hi Charlene,

Thanks for letting me know that I can post Internet links ok in plain text. I will know what the message meant that I got when I posted to you on the forum, I will know not to worry next time.

I will check out Mark’s column “Gonna Live my Life” as soon as I can. I’m working on my taxes this weekend so I’ll probably be… Read more

Hi, again @Charlene-marshall,

I am very happy Mark will be helping you answer questions on the forum. I’m sure he will be able to take on some of the lung replacement problems along with other things. You have really been having a huge increase in responses so I know a lot of people are grateful to have you respond to them and you are still… Read more

Hi @charlene-marshall,

I sent a reply to your above post to our personal 3-friends communications source address as my reply here had an Internet link that had unrecognized characters in it and it was not accepted. Eventually, I’ll learn how to copy an Internet link here.
Ray

Hi @Charlene-Marshall,

I know you are very busy. WOW! Triple the forum activity you are having to upkeep up with now. I thought they were going to give you someone else to help with that? I guess that is your job though. I’ll try to keep my posts simple and be more patient so you can get a little rest.

Thanks for the Hawaii trip departure… Read more

Hi Charlene.

I guess I too missed your post about having booked your flight to Hawaii. Good for you.

It is nice to eat some of the fresh fruit while in Hawaii. The plant ripened Pineapple and tree-ripened bananas are wonderful. They have maximum sugar content.

While we were in Hawaii, I thought it would be nice to have a couple… Read more

Hi Charlene,

Thank you for your update.

Today, the sun is shining bright so thank you for sending it to us. Looking at the local weather forecast, I think we are going to be missing a lot of the snow that was coming from the West Coast this whole next week. In the Snake River Valley of Idaho, we will only be getting some rain. Looking… Read more

Hi Bill,

Thank you for the response about the “Vibrating Vest.”

I see you live in the cold snowy area of the US as I do. I live in Idaho. Does the cold weather affect your lung congestion?

The price of the InCourage is quite high. I imagine you had to get your doctor to prescribe it? I too have Medicare and my secondary insurance is Federal… Read more

Hi Bill Mattila,

The HFCWO Vibrating Vest sounds very interesting. Thanks to Charlene for alerting me about your post. I may look into it.

Do you wear it day and night? Which model do you have? My chest is really getting sore from the constant coughing. Does your health insurance cover some of the cost? Do you live in the US and… Read more

Hi Charlene,

I have been reading the comments about the cough and phlegm problems. For the last 6-8 weeks, I have developed a phlegm cough that seems to buildup in my lungs. It seems quite prevalent at night but also in the daytime. I can hear it rattle in my lungs at times and after some coughing, I can cough it up. I do get a runny… Read more

Hi Charlene,

I just have one comment about posting to the forum and using MS Word. I know your techs have said that you cannot use Word to write your messages and then copy and post the Word message to the forum because it will be in the wrong format but I have found that it is the way you paste the copied message.

After you have written… Read more

Hi Megan,

I read your recap of your father’s bout with the IPF word by word. It was wonderful that you were able to help him so much in his last years. I will remember your story of how his symptoms progressed. As you said, I’m sure everyone progresses at a different rate but some of the symptoms you shared might help me and others be aware… Read more

Hi Dorothy Hixson,

Yes, Esophacool does contain deglycyrrhizinated licorice extract “DGL”. In an I earlier poet I had stated that Esophacool had a licorice taste and I hadn’t seen anything in the ingredients that said it contained any licorice. I was very wrong. When I told my daughter about what I was using, she informed me what DGL… Read more

Hi Teri,

I see your dad has some of the problems that I have. My esophagus is very sluggish in pushing my food to my stomach too. In my case, it wouldn’t make any difference if it got to my stomach or not because I have Gastroparesis resulting from a botched fundoplication surgery. My stomach only works at a 20% efficiency now.

There might… Read more

Hi Rene,

I took what you said about the gender names with tongue-in-cheek so no worry. It was kind of funny.

I had never written to a Ren’e, Rene, Renee, Renae, Renny, Renne, or Rennie before. I guess the name spelling comes from what part of the world people are born and named in. Some are Dutch, French or Irish, or another origin and the… Read more

Rene Hakkenberg

Sorry, Rene about my gender mistake in my post. I am not the best speller, especially with names so I didn’t realize the difference. I generally check the posted picture of the person I am replying to. If there is no picture of the person writing the post, they just post a blank silhouette picture of a person with no… Read more

Hi Pat,

So glad to hear that the stomach and esophagus inflammation has cleared up. I hope the Zantac right after supper will help with the reflux. I try to not eat anything very late in the afternoon and make sure I don’t recline for at least 4 hours after I have eaten anything. I think they recommend 2 hours but my stomach doesn’t pass… Read more

Hi Charles Whittington,

Thanks for the info about the LINX procedure.

I have read on and investigated it. It sounds good but I am not a candidate for it. I have posted why I couldn’t use it in the above post to Rene. If you are interested, you can see my explanation to her there.

It is possible that you GERD caused the IPF. My acid… Read more

Hi Rene,

I had a good experience with a Fundoplication in 1973 that lasted clear until 2011 before I had the bad one. I’m sure there are a lot of people that had good experiences too but those are the people that don’t complain or write about them. I have no idea what the statistics are both ways. If your doctor suggests you have one, it… Read more

Hi Rene,

About why the Fundoplication did not work. Stand by for a long story.

The first one I had back in 1973 worked well. I was getting a lot of acid problems prior to it and taking a lot of antacids to try to take care of it prior to the operation. Spicy foods raised a big problem and I had to refrain from any of them. After the… Read more

Hi Pat,

Sorry I didn’t comment on your Jan 3 post right away. When I got around to reading the forum items, it was late and I had a project I had to get done right away.

I know what you have been going through with the acid reflux problems as you have probably read some of my posts from earlier above. It seems like I have been on the Nexium,… Read more

Thanks, Brian, for your comment on wedge pillows and traveling.

Yes, it is always good to ask the motels/hotels for extra pillows if they don’t already have them in the rooms. Trying to sleep tilted to the left side is what my Gastroenterologist advised me too. The hard part is I must have a minimum rise of 30-degrees upper body elevation… Read more

Hi Rene,

Yes, moving to a warmer climate would be too late for me now if it could help and would be useless at my age. If you have been there for 42 years and it didn’t help, my 83-years (84 in Feb) wouldn’t help if I did it for 42 years more. Just thinking positive again! I’d probably have a hard time breathing well by then anyway.… Read more

Hi Josie,

I am happy you are trying out the wedge pillow. I hope it works well for you. I have had one for 6-years but just use it when I travel someplace. It worked fairly well but I just kept sliding down on it to where it kept me awake a lot at night just repositioning myself up on it. While elevated on it, it would work until the… Read more

Hi Rene,

WOW! Your post just killed what I thought might be a cure-all and might stop people from getting IPF. Most of the people I have been reading about on the forum seem to live in Canada and the cold northern US hemisphere. I was all ready to move south to a warmer climate. Then I see you live in Bonaire, Dutch Caribbean and have… Read more

Hi Josie,

There are a lot of articles on the Internet that will give you information on GERD and IPF. You can go to this link and it will give you a lot of information on it.

https://www.google.com/search?q=does+acid+reflux+cause+ipf&oq=does+acid+reflux+cause+ipf&aqs=chrome..69i57j0l3.15966j1j9&sourceid=chrome&ie=UTF-8

Here are a couple of… Read more

Hi Charlene.

I have sent you a message by another source on any personal information.

I think I am comfortable about my not being able to take any Esbriet or OPEV. I’m not sure how much they would have actually increased my lifespan. The side effects I was experiencing were not worth trying it later.

I have been feeling well since I… Read more

Hi Brian Sowter,

It sounds like you have been experiencing the same problems and use some of the remedies that I have been trying.

I too had a partial Vagotomy performed on my first hiatal hernia/fundal plication surgery back I 1973. The Vagotomy used to automatically be done on the earlier hiatal hernia surgeries to prevent the buildup… Read more

Hi Forrest,

Very happy that it worked out well for you. My pulmonologist had tried to do that same procedure the NP suggested for you. But after I had been off from it for 30+ days, and restarted, it didn’t work. After restarting with only 1 pill per day, nausea started again the 3rd day as I said in my above post. Then my Pulmonologist… Read more

Hi Jea,

I read your post on the wedge pillow. I have had one that appears exactly like the basic one that you referred to for several years. I only now use one when I travel.

The things that I didn’t like about it is: I find it uncomfortable for my head. The foam makes it kind of hard and I have to use another softer pillow for my head. … Read more

Hi Charlene,

I’ll reply now to your post you made on this forum since it will make it easier for you to see what I am responding to. Later, I’ll use the email setup we 3 have started. If I have any new Esbriet info, I will still post it here.

My weekend went well, thank you and I’m happy yours went well also

Thank you for the worry over my… Read more

Hi Paula,

I guess it is Ok to use this forum for a little personal information too but I have been worried that people who were looking for just the Starting Esbriet subject might object. My posts have been so long and mostly on a personal way to talk to my two friends. I did send you my two email addresses via email a short while ago. The… Read more

Good Morning Paula,

It appears you were up and at it early this morning. I hope it was because you had a good night’s sleep and not because you couldn’t sleep and just had to get up?

Thanks for your concern about my wife. This morning she said other than having problems moving her legs, she thinks she is getting slowly better. Again, early… Read more

Hi Charlene,

Thank you for taking the time to reply to my post.

I have been feeling very sorry for Paula with all the problems she has been having. I guess she is really having bad results with the OPEV reactions. I wonder how many people have been able to use either the OPEV or the Esbriet long enough without problems to have said it… Read more

Hi Charlene,

Belated Happy 31st Birthday. I’m sorry this wish is late. I didn’t know when it was. I hope the celebration with you and your dog watching Christmas movies, the spa visit, and order-in dinner was relaxing for you. You really needed some good things going for you.

Really happy to hear from you as I know you really needed the… Read more

I tried to delete the above accidental post. Please disregard it. It didn’t work!

Ray

Thank you, Charlene,

Your above post answers a lot of my questions about the problems I have been having when I have tried to reply to your post to me on the topic “Starting Esbriet”. I also tried to send you a Private Post that I guess died because of the new rules. I will try to make sure I don’t post messages longer than the 300 words… Read more

Hi Charlene

Thanks so much for your reply!

Very happy to hear your headaches are better today. I hope the chair arrangements request to the HR manager to adjust your chair helps. Is that the HR manager at work or on the forum?

Happy the snow has started to clear your area now even though you got a good dump.
I kind of figured out… Read more

Hi Charlene,

Thank you for your quick response even though you are rushed and still fighting that head pain. I hope you can find a solution that will help soon.

Thank you for inquiring about how the Esbriet procedure is going for me. So far I haven’t had any real bad symptoms except the little dizzy spell right after I take it. I’m just… Read more

Hi Charlene

I have been noticing the cold temperatures and other winter type weather in your area. We have had low temperatures too and I seem to always get cold. I too try to keep the house heat thermometer turned up a bit, but my wife always says its too hot. I try to keep peace and compromise and turn the heat down some. She tells me… Read more

Hi Paula,

Sorry to read about all the problems you have had about getting the pills you need, etc.
I see where you are still waiting for your acceptance for a lung transplant. When do you see your doctor next to find out if you can qualify? Waiting for results that might help seem to just intensify the stress you still have. I hope you… Read more

Hi Charlene,

No, we haven’t been getting any snow. Just some cold and freezing nights. We haven’t had hardly any rain in the Southern Idaho area. It all seems to be going north of us. We have had a real dry spell. The whole west has not had hardly any moisture and now the forest fires have really started up bad in California and Southern… Read more

Good Afternoon Charlene,

Thank you for your quick responses especially when you don’t feel well. I hope things ease for you soon. I’m glad you decided to just set things aside and go back to bed to get some needed rest. I do hope it helps although, with all the problems you have and have had, you might not be able to sleep long enough to… Read more

Morning Paula,

Thank you for the fast response. It sounds like you and Charlene start your day early in the mornings. I too seemed to start my days early, but I have no real reason to do so. All my life I just have always been an early riser. I woke up at 4:05 AM this morning but thought I had no reason to get up and tried to go back to… Read more

Hi Paula and Charlene,

WOW! I am way behind catching up on all the IPF news and posting replies. SORRY!

I hope you don’t mind my combining a response to you both in one post and not making it more of a personal response to each one?

Thank you both for inquiring about how I was getting along after the IVC filter removal.

It was a long… Read more

Hi Paula

Thanks for the quick reply.

Yes, this Esbriet saga is quite exasperating. I am thinking that I should just tell my Pomologist to forget about it. He did ask me if I still wanted to go through with the whole process when he kind of felt that I might not be able to get to the full strength. It’s going to be a long time to find out… Read more

Hi gain Charlene and Paula,

I’m just catching up on how my IPF and Esbriet challenge is going. I finally got my bleeding ulcer cleared up and got a visit with my pulmonologist. He has decided to try to get me back on Esbriet again but on a modified dose. I am to take just 1 pill daily for 2 weeks and then 2 pills daily for 1 time per day… Read more

Hi,

I have been reading this forums posts and I would like to share some information that might help anyone with the acid reflux problems. I have had the Acid Reflux problem interment for over 50 years. I have had 3 Hiatal Hernia operations locally and even one other at Mayo Clinic to try to help with the acid reflux problem.

In early… Read more