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Starting Esbriet
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Hi Dianne,
I am sorry to hear about Esbriet causing the acid reflux, sun exposure, and possible liver problems. I had met with the Genentech representative Thursday to receive information about taking Esbriet and he did say all those problems have been associated from taking it. I surely don’t need anything that will expand my present problems with acid reflux. Due to botched GERID surgery, I now have a frozen stomach and no Hiatal mussel. I was left with just a straight shot from my mouth to my stomach, so stomach acid can flow freely from my stomach to my esophagus. At night it has previously been a real problem, so I don’t need another source that produces the acid flow. I have been sleeping with my upper body elevated in a hospital type bed for almost 7 years since a botched GERID surgery. I don’t need a liver problem so let’s hope when I take it, that won’t happen. Friday, I just received my first 30-day Esbriet supply but can’t start taking it until Genentech figures out how I can insert it without it going through my stomach.
I also wondered if Esbriet will really slow the progression of IPF and asked the Genentech representative. He said they had run tests with 2 control groups. One took the drug and the other didn’t for a period of time. I guess these tests were run prior to when the drug was approved in 2014 and they started distributing it. At the end of the tests, the participants ran through the breathing, X-rays and other tests you take when you go to the pulmonologists, and a comparison was made on the IPF destruction process. I, like you, am not sure if it really will work and will be worth all the side effects that it can cause. I guess each person will just have to hope for the best because there doesn’t seem to be any other alternative.
Good luck with your liver tests and if you find that it was unsatisfactory, please be sure to post the result. I’m sure everyone taking Esbriet will be interested it the results.
Take care of yourself.
Ray King-
Thanks for such a thorough reply to Dianne, Ray! I am sure your information was helpful, and even though I am on OFEV, I found it very interesting to hear the information from the Esbriet representative. I appreciate the time you took to share it with us 🙂
Charlene.
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Hi Diane
I have been on Esbriet for 8 weeks now and have learned several things. I always make sure I take my pills one at a time throughout the meal and to make sure there is protein in each meal. Apparently that slows the absorption of the Esbriet making it easier on the stomach. I have had several liver tests and they have all been normal except one. On one my AST level was high and my pulmonologist thought maybe I should cut back if it continued. What I found out is AST is not only in the liver but also in muscles in the body so any injury could make that number higher. I had twisted my foot and as it recovered the AST levels went back to normal. I, too, panic about the sun but I now have the new habit of applying SPF 50 sunscreen in the morning and afternoon if I have to be outside.
I do have a question for the group. We are experiencing high pollen alerts and I am wondering if this affects breathing. I am trying to remain indoors most of the time just in case. Anyone have any issues with this?
Claudia
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Hi Claudia,
Thanks for writing, and for such a thoughtful response to Dianne’s post about her experience with Esbriet. I’m sure she will appreciate it, as will others on this drug. I am on OFEV, but I do find it beneficial to know of others’ experience with Esbriet so I do appreciate your post.
As for the pollen questions, yes, I would imagine this would impact breathing. I know others have commented on this during their high-pollen season as well! I don’t notice it much where I live, as we don’t have a lot of pollen but I am triggered by other environmental factors that definitely impact my breathing. I hope you’re able to get some relief, and that staying indoors (as much of a pain in the butt as that is) is helping with your breathing. Hopefully others can chime in and share their experience a bit more with you re: pollen and how it impacts breathing….
Take care, and thanks again for writing!
Charlene. -
How often are liver tests done? My bloodwork has been a mess for awhile going to a Hematologist.
After weeks dealing with my Compound Pharmacy finally got a ship date for delivery Tuesday. They even came up with a co-pay savings program to help me. At first they were very ugly and unhelpful last week. I thought after being transferred so many many times this was hopeless. Not getting any kind of assistance since Genenetech being shut down. Feeling hopeless then it got better today somehow. How it gets better.
I had a Colectomy last year so already have GI problems. Hope it doesn’t get too bad.
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Hi everyone. I first started taking Esbriet Dec 2017. Really I had no issues with it. Diane, I have had stomach issues for years so they just had me up my dosage of propantazol (sp?). Breathing was much easier and I was not coughing nearly as much. And best yet, the fat fairy was leaving me alone and I was losing weight. Then it happened……
I developed an allergy to the Esbriet. They took me off the meds for 14 days and then had me restart to see if I was in fact allergic. Less than a day after starting the hives and itching came back 10 fold.
I am now on OFEV. This is my second month. It has been a rough month as I was in the process of selling and buying a house. We just moved a week ago, and my breathing is horrible as are my O2 levels. I am beyond tired. I think I pushed myself way too hard. So I am hoping now that things are starting to calm down everything will get better. Fingers crossed.
I finished my pulmonary rehab last week and will be going for my next pulmonary function test at the end of the month. Should be interesting.
I think the Esbriet at least for me was better but I certainly do not miss having to take 9 pills a day.
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Hi Paula,
It is so great to hear from you! I’ve often wondered how you’ve been since starting the OFEV and forgot you were moving, so I am so sorry to read how much you’ve pushed yourself with the move and now your 02 levels are suffering. Do you find rest helps with the 02 levels and your breathing at all?
I’ll keep my fingers crossed that things started to settle down for you now as well, and that the OFEV begins to work for you. Do you have any intolerable side effects from it? I am on OFEV as well and *knock on wood* my side effects for the whole duration I’ve been on it have been pretty good. Hopefully with some quieter days, it’ll start to work and your breathing will improve.
Let us know how your PFT goes….sending good wishes for that appointment!
Warm regards,
Charlene.
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Hi Charlene, I guess the only side affect would be the loose stools. But that could be enhanced because of the stress.
Right now in regards to the SOB even little amounts of exertion seems to make it worse. Not always but way more than before. The other day I was outside, sitting down in the shade pulling out weeds. Drinking water. I went back in about 45 minutes later and checked my O2 level and it was 79. After sitting down for a few minutes it went back up to the high 80’s to low 90’s. I really think that I have pushed my system so much that its taking a toll on my numbers. As I stated earlier should be interesting when I do the pulmonary function.
I am very tired, again I do not know if that is a byproduct of all of the stress I have gone through the past few weeks, I know while we were dealing with some issues selling our house, I was getting massive nose bleeds and the night we had to attend a town meeting to straighten something out, I actually got physically sick. Those have gone away since the issue was resolved. But I am tired now, my body aches everywhere and I think its a matter of stress and trying to do too much. If that make sense.
Life goes on. I hope all is going well for you on your end. I think of you often even though I have not been here too much as of late. But I do think of you and the others here that I have gotten to know and hope all is doing well.
Paula
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Hi Paula,
So glad to hear back from you, and I am hoping that things have started to settle down a little bit for you!
Yes absolutely, added stress and nerves could contribute to that side effects, although it could also be the OFEV. I can’t believe how much stress can actually impact us physiologically though! I learnt about this at a conference recently where I took a ‘leap’ out of my comfort zone and did some exploring with mindfulness and the mind-body connection. Long story short I guess, stress could definitely be a source of loose stools unfortunately. I hope this subsides for you soon, did you say you’re on month 3 with OFEV now?
Yes, do let us know the results of the PFT once you do that, Oh I am so hopeful for you that it isn’t a progression in the disease and that it might just be a result of your move and pushing yourself physically. Not that I want you to experience any increased SOB of course, but hopefully if this is new for you, it will subside with some rest and R&R. Are you getting settled into the new place ok? I hope you’ve had some help too, I couldn’t imagine moving with the current condition of my lungs.
Have you sought out medical advice re: the nose bleed? Sometimes medications can make our blood ‘thinner’ and nose bleeds can happen more frequently as a result of that. I know I’ve had them more often too, and when I do they take forever to stop. Probably not worrisome if it has only happened once but something to keep in mind if it happens again. So sorry you’re going through this, that is so unpleasant…
I am doing pretty well thanks, trying to enjoy summer as much as I can before the warm months are over. That said, I love fall and the cooler weather will be welcomed as opposed to the humidity. Thanks for your kind words – I often think of you as well!
Take good care, and keep in touch.
Charlene.
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Hi Charlene,
Always nice to receive your posts. I get to where I kind of look forward to them.
Sorry I have taken so long to get back to answering your post to me. I read it late last night and this morning, my computer wouldn’t start up, so I thought I would just use my iPad. Bad choice. It wouldn’t work either, so I have spent some long hours getting both to work. Also, my wife had a few projects that needed done with house problems that needed my assistance, so I am finally getting a start on replying.
I am happy you went to your cottage again this weekend. I was afraid, from a previous post that you probably were just going to stay home and rest this weekend there and that that is what you were doing. I’m sure it is peaceful at the cottage, so you can get away from things. This electronics media thing does keep one busy if you follow it closely.
No, the Esbriet Genentech rep didn’t say when I would be finding out when I would be hearing from the drug denial appeal. I suppose they will take as long as they can to approve it.
I did get the 30-day trial Esbriet pack on Friday like they promised I would. The Genentech rep told me not to take it until my doctor or his nurse called me and told me to start taking it. The rep was going to have to present my having to take it directly into my intestines and not swallowing it with food to the main company for a solution. I assume that since the pills contain slow-to-release granules that the granules must dissolve slowly and that is why the pill cannot be crushed and ground into a powder like we have to do with all the other medicines I take. The rep said that Esbriet use to come in ground up form in a capsule, but they quit doing that a while back. You can only now get it in a solid pill from. In either case, it still must be taken with food. Since Esbriet is known to cause nausea in lots of people when it dissolves, taking it with food would aid in slowing down its shock to the system a little. Haven knows what it might do if it is condensed to a powder and taken without anything to slow it down. I have read that nausea usually is produced when food and other items are in the intestines rather than in the stomach. I’m not sure where I read that, but if its true, it isn’t good for me.
The weather is still real hot today and is predicted to be 90+ the rest of this coming week.
Yesterday, the reunion lunch in the park turned out not to hot to put up with. It was held in a park in a town my wife and her family grew up in which is about 15 miles away and is in a small valley surrounded by mountains. It was about 85 dreg F there but there was a cool mountain breeze blowing and it felt kind of good. There were close to 50+ people that attended. About ½ of them flew here from Houston, TX. They said it was hot here. They have had temps about like ours, but they have a real high humidity compared to the 10-20 % we have here.
The schooling and training I had while working with the FAA didn’t require student loans. It was done at the FAA Academy in Oklahoma City, OK. That training center is for all Air Traffic Controllers and Navigation Equipment Technicians from all over the world. The FAA also sent me to many factories that make the navigation equipment for them for training on repairs. The one good thing was that the FAA paid for all the expenses for the training. As I said earlier, I do hope you won’t have to work real long extended hours. This disease really costs a lot to put up with and the extra stress at work isn’t good for you. I guess bills still come in and must be paid though.
Well it’s getting kind of late in the afternoon and I still have some other work I must do on this darn computer. I just got it to a working stage, but I still am getting some errors I’m going to have to investigate, so I will close for now.
Hope all is going well, and you will enjoy what is left of your weekend.
Ray King
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Hi Ray,
Thanks for your thoughtful reply and kind words, as always, it is great to hear from you! I hope you were able to have an enjoyable weekend 🙂
No worries at all re: any delay in replying. I am also just nicely getting home from my cottage and catching up on some forum posts that I’d missed due to being away. It is a beautiful day here so it was nice to have a quiet, relaxing morning on the water before coming home. I know the frustrations of an iPad well — I own one but I never use it because I don’t find it user friendly. Glad you were able to help your wife with some projects too.
So frustrating to hear that even a timeline of when you can expect notification about the Esbriet was not given for you. I just cannot believe the hoops you’re having to jump through with this process!
I hope they’re able to come up with a solution for you to be able to take the Esbriet with food as yes it is really known to cause nausea in patients, especially in the beginning. Surely they’ve had other patients who need to consume the drug in a different way than most, I’m surprised they haven’t thought of a solution for this yet. Let us know when you hear back from the rep and what he finds out after presenting your needs. The slow release component does make sense, but surely a drug company the size of Genetech would be able to come up with a solution for alternative ways to consume the medication. I am really curious to hear what they say …
Wow, those are some hot temperatures for sure! Glad it was tolerable with a breeze though, and that your humidity isn’t too high. It is humidity that “makes or breaks” it for me, either enabling me to deal with the heat or not as I can’t stand the sticky, high humid days and neither can my lungs. Sounds like it was a good day overall for you, and I am glad you could attend with your wife.
Thanks again for writing and giving me an update on things going on with you. I think I’ll curl in for a nap now, it is mid-afternoon on a Monday and I’m off today, plus tired from the cottage so a short nap is in order I think. This is one of my simple joys now when I can have them: afternoon naps!
Take care and chat soon,
Charlene.
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Hi Charlene
I am on my 2nd month of the OFEV. They actually sent me some medication the first month to help with loose stools so I think that is a some what common side affect.
I will see my doctor next month. The nose bleeds have gotten much better. So I think a huge part of it was due to the stress.
Glad that your enjoying your summer AND that you stepped out of your comfort zone. Scary I know but was it worth it for you? I hope so. I think, the worst part of this or any life altering condition is that it makes doing the things we love so much very hard. Personally I love going to the beach and basking in the sun. I do not think I could handle that any more.
We have gotten a lot of unpacking done. Phew.Talk to you later. Time to make a cup of tea
Paula
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Hi Paula,
Nice to hear from you, and thanks for taking the time to reply.
Glad to hear you received medication to help with that unpleasant side effect. If it doesn’t subside, is it a medication they can provide you with again, to see if it helps eliminate it? Hopefully it starts to go away for you soon. I’m also really glad to hear the nosebleeds have subsided, they can be very unpleasant as well. I think the dry heat and humidity are partially causing mine, but they’re pretty infrequent now which is much better. Goodluck with the doctors appointment next month — I hope it goes well for you!
Thanks for your kind words about my experience with stepping out of my comfort zone. It is likely a small thing for others, but like you said: when living with a life-threatening illness, it makes it a bigger deal, I think. Before I was diagnosed with IPF, I always moved far too fast to ever consider mindfulness. Part of me actually does still think it is a little bogus, however, this mindfulness course pulled together the physiological impact that mindfulness and meditation can have on the body. I love physiology and biology, so I actually found this fascinating. There is a reason people say, “stick with your gut feeling, or go with your gut” because a healthy gut balance actually contributes to our brain health. It was really interesting, so to answer your question, yes, it was definitely worth it for me 🙂
Glad you’ve been able to get some unpacking done, and hoping you enjoyed the rest of your night with a warm cup of tea. I also have one beside my bed right now as I write this.
Take good care of yourself!
Charlene.
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Hi, I am Carol and I was diagnosed with IPF in 2016. I had a lung biopsy to confirm the diagnoses. I was on Ofev for almost 1 year but I lost 60 lbs and looked like death warmed over. I have been off of it for about a year and have added some pounds back. I’m not sure I want to start Esbriet. We’ve moved from NYS to GA and I find myself explaining that I don’t have COPD. Yikes!
Getting back to pulmonary rehab finally. I’d like to hear about the transition from Ofev to Esbriet.
Many thanks, Carol
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Hi Carol,
Thank you so much for writing and sharing a bit about yourself. Welcome to our forums!
Sorry to hear you had such trouble with weight loss on OFEV. Was this gradual, or did the weight come off rather quickly? Was it from unpleasant side effects like GI issues and loss of appetite? Sorry for all the questions, just trying to seek out information as I am on OFEV and haven’t experienced any of these yet, although my appetite has definitely been reduced pretty significantly.
I haven’t had any experience with Esbriet, but lots of people on our forums have and have been helping in documenting their experiences with this drug. I know two people who went from Esbriet to OFEV, but unfortunately not the other way around. Are you nervous about starting it due to the side effects?
Goodluck with pulmonary rehab, this is something that has helped me tremendously so I hope it is a good thing for you as well 🙂
I look forward to getting to know you a bit more through the forums!
Cheers,
Charlene. -
Hey Ray
just wanted to let you know I received the 771mg pills and they are in solid form. However it’s possible they also come in capsule (can opened and in powder form) but I don’t know.
Mt best and hope you’re doing well!
Michael
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Hey Michael,
Thanks so much for taking the time to follow up with this and “close the loop”. Much appreciated!
I hope this message finds you doing well and that you enjoy the upcoming weekend ahead.Warm regards,
Charlene.
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Michael,
Thank you very much for the 771mg pill information. I assumed they would be in solid form as I had a meeting a week ago with the Genentech Esbriet representative and he informed me that the capsule form with granules in them was discontinued awhile back and it only now comes in solid pill form. I have a 30-day supply of the pills but can’t use them yet until Genentech figures out how I can use it dissolved in water and injected directly into my intestines via a syringe. They say they will give the information to my pulmonologist and he will let me know if and how I can even take it.
Time will tell.
So far, I am doing well and I hope you are too.
Thank you for your concern.
Ray King-
Hey Ray,
I know your reply was to Michael, but was just thinking of you. Still no update from the doctor yet about how you can consume the Esbriet, huh? I wonder how long it will take for them to come up with a solution for you, or to determine whether or not you can take them. Did you ever get an opportunity to inquire if OFEV comes in capsules that can be given via your tube? I am on OFEV and have no idea but can see what I can find out for you if it comes down to your not being able to take Esbriet. I will keep my fingers crossed though that this is not the case!
Glad you’re doing well and I hope you enjoy the upcoming weekend.
Kind regards,
Charlene.
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Hi Charlene,
Thank you for your continued interest in my problems with Esbriet. No, I still have not heard anything positive from the Esbriet manufacturer. It has been just over a little over a week ago that I presented the problem to the Esbriet Clinical Coordinator during our information session. I just received a conformation e-mail scheduling another meeting with him on Tuesday, 9/11/2018. I guess these sessions will be monthly. I didn’t learn anything new about Esbriet on the last session that I hadn’t read on their Web site. If I haven’t received anything from them by early next week, I think I will call the information telephone number that they gave me if I have any questions.
I still haven’t heard anything from my insurance company either about them acting on our denial appeal for them not accepting covering anything to help pay for the drug. I plan on calling them next week also.
I have not done any inquiry about the from that OFEV is in per capsules containing powder or solid pills. Reading about them on their site, the instructions for taking it are about the same as for Esbriet e.g., taken with food. So I would guess they are time release pills that are not to be crushed also. I won’t do much looking into that until I get some word about the Esbriet. That is what my pulmonologist wanted me to take over the OFEV as he said I would be able to start on lower doses with the Esbriet vs the OFEV and I think he said it had less side effects. I appreciate your offer to investigate the forms and conditions for taking OFEV if I can’t take the Esbriet. You are so busy with everything that life is forcing on you, I don’t see where you find all the time to do these things too.
I hope you have a good weekend too. Our weekends seem to be just another day since we are retired and don’t have the stress of gong to work on week days and need to get away for some relaxation on the weekends. It seems to be just more convenient to sit at home and stay cool.
Will close for now. Thanks again for keeping up on all my problems.
Ray King-
Hi Ray,
Thanks for your reply, and for getting back in touch with me. As always, it is great to hear from you!
I’d hoped you would have an update for us in terms of the Esbriet issues. So sorry to hear you haven’t had more leeway yet in this regards. I wonder if the reps goal is to bring more information with him at your meeting in September? That would be good to know in advance! It is nice that they have these meetings monthly though, especially once you start the drug so you can compile questions to ask the rep when they visit, if they aren’t urgent requiring a call beforehand of course.
Goodluck with the calls to follow up with the insurance and the drug company. It is exhausting staying on top of these things as a patient, isn’t it?
You’re probably right re: the method of consumption for OFEV matching Esbriet. Not worth overloading yourself with information at this point until you hear back from the Esbriet team, I agree! I am on OFEV and just to note: I actually haven’t experienced too many unpleasant side effects thankfully. No problem re: sharing the information, just as something to think about. Lots of things going on here, but these forums and the people on them are important to me so I am glad I can be of some help / benefit to others.
I hope you have a nice weekend too! I am actually looking forward to spending the afternoons indoors (it is humid here again this weekend) and working on some outstanding projects. It will feel good to get those done, and then tonight at 10:50PM I have an MRI as part of my neuro follow up from the accident. Here’s hoping that goes well!
Thanks again for writing, and take care!
Charlene.
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Hi Charlene,
Sorry I am late in responding to your last post to me. This morning I noticed I had a broken lawn sprinkler and had to dig it up and replace it. I have such a hard time doing anything anymore that it seemed to take forever. I must stop and rest every so often. It was a lot cheaper than having a lawn service do it though. It would cost $50 plus parts just to have them come out. I had some new sprinkler units that I purchased back in the years when I use to be able to maintain it myself’ but it was a lot easier then. This IPF and age is not being very nice to me on any projects.
As for getting more info from the rep on our next visit with him, I don’t think we will as before we left the last meeting, he showed us what he was going to cover on his I-Pad and it was just items and graphs I have seen on their site. I guess his meetings will gain us something later, I hope.
Thanks for the “Goodluck” wish on the follow up with the insurance and drug company. I think I’ll need it as I am dubious about even hearing anything. They aren’t very fast with any reactions. I’ll keep the you and the forum provided with any info I find out.
This topic on Esbriet and OFEV do seem to be very busy and very helpful and informative. Your action has really helped.
Sorry it is so humid there that you aren’t looking forward to going someplace and enjoying this weekend. We were supposed to get some rain maybe today and tomorrow but so far nothing seems to have worked out. The clouds have all moved out and now they say it will just be hot and dry tomorrow. We haven’t had anything but a trace of rain here this month. It is so dry that they are afraid that if any storm clouds come in, we might get some lightning with it and just cause more fires. We have had so many fires around the state. We need something to put out the fires clear the air.
I do hope your MRI comes out well today. Please keep me posted on the results. You are lucky they do things like that on a weekend there. Most places here in the US everything is closed on a Sat or Sun. Enjoy the rest of your weekend anyway.
I really enjoy hearing from you and reading your replies and other posts.
Take care,
Ray King-
Good Morning Ray,
No problem at all, thanks for getting back to me. I enjoy hearing from you as well!
Hope you got your sprinkler issue all sorted out. I can certainly relate to the length of time that it takes to do anything physical now, and I’ve actually had to hire someone to do my lawn & yard maintenance for me as this is no longer something I can do, especially in the heat of summer. I’ve turned a lot of my frustration from not being able to do my outdoor projects, to more indoor tasks and have recently begun home decor crafting again. I used to do this a lot, and then got out of it for awhile when life just became too busy but it’s been a gift being able to get back into it again. It’s also even provided me some financial relief because people are buying some projects that I’ve made (see picture of a new sign I’ve made this weekend). Anyway, sorry I digress…
Thanks for keeping us (forum and I) updated on any progress you make with the Esbriet rep and the insurance company. Gosh I wish this whole process wasn’t taking so long for you!
The weekend actually turned out to be ok temperature-wise, but it has still been a quiet weekend for me which I enjoy. It rained on Friday night to the point where I had to pull my car over because I couldn’t see anything. It was really scary but it cooled things off a bit, which has been nice. Right now I am enjoying my coffee with my windows open and a fan going as opposed to the AC. It’s nice to get some fresh air into the house!
I was actually wondering if you’re anywhere near the fires in BC and/or if you’ve had any state fires around you? My heart aches for my friends in BC. I actually have a friend who had a lung transplant not too long ago and has had to relocate until the fires in that province clear because there is just so much smoke in the air. Her pictures show orange skies, it’s very scary! Are you impacted by the smoke at all from the fires in or surrounding your state?
The MRI went just fine. They were a bit behind, but I was in and out of the scanner which was good and they actually gave me props to use to help me avoid laying completely flat which makes me cough like crazy. All is well, and I have a follow up with the neurologist about it next Friday. Thank you for asking 🙂
Enjoy your Sunday!
Cheers,
Charlene.
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Hi Charlene,
Good Morning to you too Charlene although I guess it is starting the afternoon where you are. It’s only a after 10AM here and I just ate what I could eat for a late breakfast. Since I can’t handle eating much food, I just ate a hard-boiled egg and one link of sausage. I don’t drink anything with it, so I won’t fill up on just liquid. I had my cup of coffee at about 5:30AM when I got up. I just drink one of them a day too and it goes through the stomach fast enough, so I can eat my cup of food between 10AM or a lot of times later in the day. I still love to try eating a little different food just to satisfy my crave for their taste. I miss not eating things. I really love eating all food types. I have never had a problem gaining weight and I still weigh about the same as I did when I was 17. I guess the night feeding tube keeps my weight stable and gives me the nutrients I need.
The lawn sprinkler problem is now settled and working like it should today. I hope it stays that way as it really did me in for the rest of the day yesterday fixing it.
It is interesting to hear about you doing home décor crafting. I saw the picture you designed and posted. That looks crafty. No pun intended. Do you do other types of designs and crafts? Do you sell a lot of those type items or just on an occasional request.?
One of my daughters is handy at crafting things to decorate the house. She has made a lot of things we have hanging on the walls in our house. Her husband has a commercial shop where he makes doors, cabinets and other types of house items so she has access to any woods, stains or other items needed to make plaques, frames, etc. she might need. She also likes to sew things. She made curtains and bed spreads for our bedroom and once had a commercial business making hot tub covers. She also loves to paint things. We really take advantage of her. I guess I’ll quit bragging. She didn’t get her talent from me.
Sorry to hear about your bout with the heavy rain storm causing you to have to pull your car over. That can be dangerous when it comes up all the sudden. I kind of wish we could get some rain. I must run our lawn sprinklers every day to keep the lawn from drying out.
No, I am not close to the fires in BC. I live in the South Eastern part of Idaho. California, Oregon, Washington, Arizona, Utah, Wyoming and Nevada and Idaho have many fires going on and we seem to get the smoke funneled into our part of the state. We have and had a lot of fires around us locally that were caused by dry lightning storms and people camping. We get a lot of warnings on the news about the smoke causing respiratory problems and how to protect ourselves from it.
Happy to hear that your MRI went well. Lying down causes me reflux and regurgitation problems when they X-ray me, so they usually prop me up as high as they can, but I can still go through the machine. I have heard where they are getting a new scanner that gives more a person more room. I hope they have it by the time I get my next CT scan.
I hope you can enjoy the rest of your Sunday and have a good week coming? Thanks again for your responses as I really love to hear from you.
Until next time.
Ray King-
Hi Ray,
Great to hear from you, thanks for connecting back!
So you must be a few hours behind me then, are you on CST? Glad you had a good breakfast, and eating as much or little as you can is important. We want to feel comfortable too! I often go through phases where I don’t want to eat solid foods at all, and instead I turn to protein shakes. Do you ever do this? I find it helps when I need to eat but don’t want to. We may have talked about this already and I don’t remember, apologies if we have! Glad you can still have your coffee though, this is another one of my simple comforts that I enjoy each morning 🙂
Thanks for the kind words about my crafting projects! Having this has really been a saviour for me through my diagnosis. It allows me something to focus on when I need some time alone or the quiet of my own home, and it really brings me a lot of joy to try out different ideas. I’m actually participating in a craft show this weekend and bringing my homemade cards and signs to sell. I don’t always make stuff with the intention of selling it, and do take orders from people, and the extra cash is always helpful because living with IPF is expensive, especially with trying to pay down school debt. So the answer to your question is yes, sometimes I sell my products and make custom orders for people and other times I just do it for fun. I also make homemade cards, and I’ve included a picture of one of my favourites below. It really resonates with me… likely you too?
Sounds awesome that your daughter has a talent for home decor and projects as well. Sounds like she is very talented! Did that come from your wife then (since you said it didn’t come from you)? Lol…
So glad you aren’t close to the active fires, although its no good that you’re getting the smoke funneled in from the fires in states around you. Do you find it bothers your breathing at all? Do you have a good mask to protect your lungs when you’re outside? My friend safely relocated out of BC to protect her new lungs from the fires. It’s pretty scary stuff what is happening to our world – there seems to be fires and floods everywhere, which are complete opposite to one another!
I hope you have a good week as well, anything coming up for you this week? I don’t have any respiratory appointments, just a neurology follow up at the hospital on Friday. Here’s hoping that goes well. The symptoms of my concussion have really died down so I’m thinking that is on the mend, and am very grateful. Otherwise, it is back to work tomorrow and waiting for the weekend where I can go to my cottage and participate in the craftshow 🙂
Talk to you soon…. let me know if you like the card I’ve attached below. Its one of my favourites!
Cheers,
Charlene.
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Hi Charlene,
No, we are not in CST time zone, we are in the Mountain Daylight Savings Time Zone. Since it is summer time, we are advanced 1 hour earlier for convenience of the farmers, so we are on the same time as CST. That puts us just 2 hours earlier than the EST zone now. I believe you said you live someplace in Quebec, I guess not too far from NY.
Sorry to hear you can’t or don’t eat any solid food, just protein shakes. No, I have not been drinking protein shakes. Since I can eat about a cup of solid food per day, I do like to eat some solid foods I crave Just for the taste of it, and I take no liquid with it. As I am on a feeding tube for 12 hours at night, the special liquid we put in the feeding bag is a high in protein and vitamins and supplies my nutritional needs. I do have to have my real early daily cup of coffee to wake up. The liquid doesn’t stay in my stomach long enough to cause any irritation like a food would.
The smoke doesn’t overpower me a lot since I don’t go anyplace outside very much. The smoke that makes it into the house is annoying and causes my eyes to burn a little and gives me a runny nose and other type of allergy symptoms, but I just put up with it. It is so hazy outside from the smoke that it is sometimes hard to see the mountains around us. It is like a heavy fog. We don’t use a mask. Not many people around here do. It’s mostly people that are right in the fire areas that use them. They just recommend people to stay indoors more.
It is too bad you friend had to leave the BC area because of the smoke. Did she live close to the Pacific? A lot of the NW of the US and different places in Canada have been having bad fires. I hope the weather gets better and they can get the fires under control and out.
I am glad to hear your accident concussion symptoms are abating some. Did you have a lot of headaches from it?
Its nice you are going back to the cottage this weekend and presenting items for a craft show. Is your cottage in or close to a town where a lot of people can view your products? I do hope you can sell some and get some orders for later sales to help with your finances.
That was a real cute design on the card you had attached. The “Just Breathe” title on it really hits home for people with IPF. The bird flight and chair fit into the relaxed appearance. No, my daughters’ talent didn’t come from me, it had to be my wife. She spends a lot of time each different holiday putting things around the house that pertains to the holiday. She also spends a lot of time framing different things and hanging pictures and other decorations around the house too. We don’t have many walls in the house that don’t have something covering them. She even decorated the basement bedrooms with different things that pertain to the name she gave them. One is called the Aloha room and has a lot of Hawaiian decorations and pictures in it. Another is called the Heritage room. She has a lot of old fixtures and furniture in it. I won’t go into detail for the other rooms.
Wow! I’ve really been rattling on for a long time, so I’ll quit and give you some relief.
Always love to hear from you.
Take care.
Ray King-
Hi Ray,
Great to hear from you, and thanks for the explanation re: standard time zones. That makes sense then, we’re also on ‘daylight savings’ time now, although the days are starting to get shorter as summer is coming to a close. That always makes me sad, when it gets dark early in the evenings, although I am ready for the high heat and humidity of summer to end, I have to admit. Yes, I am about an 8 hour drive from NYC and only a couple of hours from NY state 🙂
I can eat solid foods and enjoy them from time to time, however, I admit, as of recently I am more interest in liquid stuff like shakes and protein drinks. I do need to get back to eating solid foods per my dietitian, as I am not necessarily getting my calories and nutritional needs met by consuming just liquids. Glad you’re still able to enjoy your early morning cup of coffee – this is one of my favourite parts of my day!
I can’t imagine what it is like to live in the areas impacted by forest fire smoke right now. That would really bother me I think! Glad it isn’t too bothersome for you, and hope you can easily find relief from the smoke that gets into your home. Yes, I am sad for my friend who had to relocate while the fires are still burning, although it is so important that she takes care of her new lungs. She was more inland BC and unfortunately much of the forest area(s) around her was on fire. She’s come back to southwestern Ontario to stay with family until it subsides a bit, although some of Ontario is also burning I’ve heard. It is very rainy here today, and we’re supposed to have about 50mm of rain (warnings are even out) so I do hope this helps get some of the fires under control.
The concussion symptoms were pretty bad from April – June, even though the accident was in December. I had frequent headaches, dizziness, foggy vision and was excessively tired, although that could be caused by anything I suppose. Thankfully they have subsided quite a bit, and it’ll be interesting to see what the MRI shows on Friday.
My cottage is directly west of a very busy beach town in the summer, and is directly on a great lake. It’s amazing! They’ve done a good job advertising the craftshow, so I hope lots of people show up for it. Regardless, it should be fun as I enjoy making these items for people or even to hang around my own house. I’m also glad you liked the ‘just breathe’ card – I admit it is one of my favourites I’ve made so far! It does really resonate with people who have IPF, doesn’t it? 🙂
Your daughters talent sounds absolutely awesome – so glad she does this, what a neat way to personalize your home!Thanks as always for sharing, and I hope you have a great day today!
Take care,
Charlene.
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Hi Charlene,
Sorry I’ve taken so long to respond to your Aug 21 post, but I wanted to wait to see if I would get some news from Esbriet or the doctor about me being able to take it, or if my insurance company had approved our denial reconsideration request for its coverage.
I hadn’t heard anything from anyone so I finally I got tired of waiting and wanted to get some information, so I could start taking the free 30-day supply I got from Genentech.
At a meeting 3 weeks ago, I had with the Genentech rep. I told him of the Esbriet instructions telling me not to take it by crushing it or taking it without food and that have a frozen stomach and take things via a feeding tube into my intestines. He told me not to start taking the drug until he had contacted the company and he would contact my doctor to tell me when and how to start. I decided to contact Genentech myself via phone and talked to their medical staff. After being transferred from nurse to nurse and then to the chief nurse without any solution, they transferred me to their pharmacy staff. There, the same thing happened. I went from 2 different pharmacist to the best one that they said would know. He said he didn’t know and said I would have to contact my Pulmonologist for instructions. I tried to contact my doctor and naturally it went to his nurse’s phone mail and said to leave a message and she would get back to me. Their office hours expired without a callback.I had to wait another day to try to contact the doctor, so I decided to contact my medical insurance provider to see if I was even going to be able to get their coverage since they had sent me an insurance coverage denial 2 months ago. They had said my doctor could appeal the denial. The doctor had sent an appeal reconsideration letter 2 times but each time they said they hadn’t received it, so Russell came 3 week ago and showed them how to make the appeal and that he would make sure they got to it. When I called my insurance company complaint resolution department, they said the appeal was still waiting for a personal letter from me stating why I felt I needed the Esbriet. They said it could be sent via FAX if I wanted to and that it could take up to 30-days before they would come to a decision after receiving the required personal letter. They couldn’t tell me if they had received and accepted the doctor’s drug denial appeal. They said all they had on their computer was that it was awaiting appeal. Well, I didn’t know what to put in the letter other than I wanted to live longer and that it was about one of only a couple of drugs developed to do this. I didn’t put it exactly in those terms but that is what I expanded on. I Faxed it Thursday, so I may find out in a month or so.
Late Thursday, I did finally get to talk to my Pulmonologist’s nurse to tell her of the denial progress and what I had found out from Genentech. She put me on hold and talked to the doctor about it. She said the doctor told me to just go ahead and crush it and take it through the intestine feeding tube and to start taking it Friday, today. He said the reason that they probably hadn’t wanted it crushed and must be taken with food is that it can cause severe stomach irritation nausea and pain. I told the nurse that I hated to start taking it without knowing if I would be able to get it from my insurance company when I had used up my 30-day free sample. She said not to worry, that if my insurance won’t cover it, there were other programs that would provide it to me. She said a few of the programs were like a grant and I could get it free through them. So, today I took my first Esbriet tablet on the schedule they sent me to start on. Next, I will be able to work up to being able to take the 9 per day they want you to work up to. I guess then, I can switch to the stronger one-a-day dose that Michael Lamkin referred to. We will see how it goes.
I hope you enjoy your weekend at your beach house this weekend and the craft show turns out great for you and you get some good orders for your crafts. Yes, the “Just breath”’ card could really resonate with people who have IPF. That was the first thing that caught my eye and thoughts when I saw it. Nice job! Great talent!
From the mileages you gave me about your location, I see you are at a location real close to a great lake and real close to excellent beaches. I really envy you being so close to the water and those beaches. Looking at picture of some of those beaches on the Internet, it looks like people are swimming and having a good time. If I go someplace to get away it would have to be a motel, pitch a tent, rent an RV or cabin. We sold our camping trailer and boat quite some time ago. It was just too much work and expense keeping them up and I know I couldn’t handle the setup work it takes, especially now. No stamina. We have a lot of close lakes with cabins on them, but we never did purchase a cabin on them. They also sell a lot of time-shares for them, but I don’t want a long contract at my age.
We did finally get some rain on Wednesday. It didn’t clear out much of the smoke and the weather bureau said it would just filter back in again after the storm leaves. The storm did contain a lot of lightning, so I guess it probably just started more fires and the wind spread those that were burning. They did comment that we were getting a lot of the smoke funneled in from the British Columbia fires as well as all our surrounding ones. We are about 100 miles further from the BC border than you are from NYC.
Well, again, enjoy your beach house weekend and I hope everything turns out well for you at the craft show. Keep me posted. I look forward to your reading your replays and life status challenges.
For now,
Ray King-
Hi Ray,
Happy Sunday — I hope you’re having a nice weekend!
No worries at all re: taking time to respond to my post. I was a bit swamped last week with work, personal stuff and medical appointments, so I actually wasn’t online a lot either. This week coming up is super busy for me as well but the week after (Sept 4th week) will give me some breathing room…. no pun intended!I remember the uncertainty that came from your meeting with the Esbriet rep unfortunately and I am so sorry to hear your calling around for answers did not end the way you’d hoped (ie. with answers). How incredibly frustrating for you! I would think it would be someone with Esbriet or Genentech that would know the answer to how you can safely consume the drug they produce first, so sorry you went through a number of folks who actually didn’t know the answer.
In addition to this, it is unbelievable the hoops you’re needing to jump through with the insurance companies. I find it so bizzare that they need a letter from a patient stating why they want to taking one of the only drugs that slows down the progression of this illness. I think wanting to live longer is the only answer we can give them, and should warrant an immediate approval in my mind. I know it isn’t that simple, but I sure wish it was! Everyone deserves an opportunity to live longer, since we did nothing to cause this disease. These two calls would be enough to aggravate and exhaust me for days. I hope you did something for yourself to lift your spirits back up after these two calls…. I am frustrated for you!
How has the start of taking them been for you? I know it has only been a couple days but hopefully the side effects haven’t been too unpleasant and that you’re able to consume them alright.
Thanks for the well wishes re: the craftshow. It went well and I made over $100 which is nice since finances can be tough, especially when I am unwell and need extended time off of work. The weather was absolutely terrible for it though, thankfully it was indoors. It rained for hours on end yesterday, and just came down in buckets! I may have made more if the weather wasn’t a deterrent but thats okay, it was still fun and nice to show people that I can do these things for future. Some people asked if they could custom order some pieces as Christmas gifts so I am excited about that!
Yes I’m very lucky, my cottage is on one of the most beautiful great lakes and it is blue water and clear skies for as long as you can see on a nice day. It is wonderful, very sandy (only a few rocks) and lots of space for both water craft and people to swim. I haven’t been in the lake the last few weeks though, as we’ve had a lot of rain and there are warnings out for high levels of e.coli making it unsafe for swimming. Due to IPF and a compromised-immune system, I never take the chance when there are warnings out but I know others do. Hopefully it will be lifted before the Canadian long weekend next weekend… hard to believe it is already the last “official” weekend of summer. I’m ready for an upcoming vacation to Nova Scotia though and cooler weather, that is for sure 🙂
How has the heat and humidity been there? Is the air quality any better from the fires?
Hopefully it is a bit better for you even since you wrote last. Wishing you a nice rest of the weekend, and I look forward to hearing how the Esbriet has gone for you. Goodluck!Warmest regards,
Charlene.
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@Ray King. Hi Ray, I have been reading your stories about trying to get on the Esbriet. While I was fortunate that my insurance company, surprisingly, approved the meds. I was able to get a grant through health well to help with the cost the insurance company did not pay. The grant ends in Nov, and I have to wait until the beginning on next year to reapply do to a financial thing.
I digress, while taking Esbriet, it was doing its job with minimal side affect. Even the fat fairy was leaving me alone. My appetite changed dramatically. Things that I loved to eat is no longer the case. Then 3.5 months in I developed an allergy to it. They now have me on OFEV. I am not very hungry and I am still losing weight. One doctor says I need to lose weight in order, when the time comes, to be considered for a transplant. My other pulmonologist said to not to loose too much.
Now while I was on Esbriet, before we knew that I was definitely having an allergic reaction I tired calling Esbriets nurses line. Like you, I was transferred from one line to another and in a word, I thought their help line sucked. ‘
I hope that you are able to get some answers and hopefully get on the meds. Good luck, I am hoping for the best for you.
Paula -
Hi Paula,
Thank you for your comments on Esbriet about my post.
I will investigate the “Health Well Foundation” to apply for a grant that you referenced in your post to me. That may help me very much and that it is possible to get it even though your medical insurance approved the meds. Is your insurance company paying anything even though you got the Heath Well grant?
I am very sorry to learn that even though Esbriet may have helped you for a short time that you digressed and had to change to OFEV.
The weight loss side effect on top of the others doesn’t sound very exciting either. I know I can’t afford to have that as I am at the low weight size for my build. I am on a feeding tube for 12 hours at night to keep me stable and probably must be on it all day too to maintain everything. The feeding tube gets its food supply from a bag mounted on an IV stand, so I don’t have any moving range while in the feeding process without carrying the stand around with me. I must lie all night long on my back in a head elevated bed.
You may be lucky and get the lung transplant. If you do, I hope that takes care of your problem. I am over the minimum 70-year age to be able to have a lung transplant, so it is not available for me. At my age I probably wouldn’t live through it anyway.
I agree with you wholly about the poor medical help you get from calling Esbriet. I don’t know why they even give the Esbriet help number to us.
I wish you very much luck with your process on coping with this disease. Reading your posts and some others, I guess I am not too far into the problems that come from IPF yet and I am not looking forward to them.
Best of luck to you and I will be watching for your posts and replies to see how you are getting along.
Ray King
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Good Morning Ray
My insurance pays like 95% of the cost and the remainder is picked up by the grant money. The only month the amount paid by the insurance company were it was not at 95% was the first month of the year. That month the grant money paid I think $2500.00. Then I was in the catastrophic category with the drug plan. Hence the 95% payment by the insurance company.
As for the weight. Boston told me I needed to lose weight to be consider, my doctor here told me not to lose too much. Go figure. I needed to lose weight. So far in less than 9 months I have lost 20 pounds.
I know a bulk of that weight loss is because of the meds. So many things I used to love I simply have no desire to eat. Bacon was the first thing to go. I am lucky if I can get a slice in now. Last night, pizza came off the list. Had a small slice on Thursday and it was all I could do to eat it. Just does not appeal to me any more. Every once in awhile I get a case of the hungry horrors but not often.
Sorry that your on a feeding tube that must be horrible.
My issues with the IPF have gotten worse I think in part to the stress I recently went through trying to sell one house while buying another. If my doctor knew what was going on he would have clobbered me. It is my hope that once things really settle down (still trying to set up the new house) that the issues with SOB, low O2 levels and just feeling like ick will go away. If not, it may be an indicator that the process of IPF has decided to pick up speed. Not too positive about how my pulmonary function test will go on Wed. I just hope that they do not decide that I have come to a point where I need to go on oxygen. If I do, hopefully it will only be at night time.
Before I forget going back to the funding for the meds. As indicated I was lucky and my insurance company has been very good about approving the meds. Something evidently they have to do every year but that is handled by my doctor (I have never heard of the crap your insurance company is making you go through on the appeal process. That is crazy) But I assume (yes we all know what happens when one assumes. haha) that there are other avenues that your doctor can go to get you on the medication.
I look forward to hearing how you are doing.
Paula -
Good Morning to you Paula,
It was nice to hear from you. It sounds like your insurance company paid a lot of your Esbriet cost. All I know about my insurance plan payment is that they will cover it all but $35 per month which is the maximum amount they pay for Specialty Drugs. I guess that is because it isn’t covered by the insurance companies regular use a drug company or drug store. It can’t be processed at a drug store. I will look at the Health Well Foundation later today and see what I must do to qualify and fill out the forms. My doctor did say there were some other coverage for it and I think they did mention the Health Well Foundation.
I guess what Boston told you that you had to lose weight before the surgery is normal. They must cut through a lot of tissue to get to the lungs and I guess they want as much regular flesh to sew together as they can to aid in the healing of the wound. It sounds like you are proceeding with the weight loss if you reduced by 20 lbs. How much do they want you to lose?
I’m sorry you aren’t enjoying your food preferences, bacon and pizza etc. I love both too, but I can only eat a couple of bites of pizza when we get it and just a couple of pieces of bacon or link sausage without getting full. Pizza has always been one of the foods I have loved and crave for. We don’t purchase pizza much anymore because my wife can’t eat all that is left before it goes bad. She likes pizza well too and occasionally purchases just a large slice of cooked pizza and gives me a bite or two. Mainly, since I can only eat a very small amount of food once a day, she purchases frozen TV dinners and eats one of them for her meals. I can only handle a cup of food per day. That also fouls up things for going out to eat. Eating out is the main thing that people do for entertainment and social gatherings and we usually must turn down their request for dinner as I just must sit at the table or on the sidelines and can’t participate. Our kids like to take us out for our birthdays and/or other gatherings when they come to visit. Bummer! They are very tolerant about suggesting we order something in to eat. I really crave going out and eating a good steak or something, but I know I would only be able to eat a bite or so of it and then get a take-home for the rest of my meal. A lot of times, I order a different accompanying side dish that my wife didn’t order and give it to her. The meals always seem to come with a salad too and if I eat any of it, I won’t be able to eat any of the main course. Bummer again! Oh well, I guess that is the way life goes sometime. We must just put up with it, don’t we?
Yes, the feeding tube is very clumsy to have to use. It is the result of a botched Hiatal Hernia surgery. The surgeon cut the main nerve to my stomach during the surgery and that ended up leaving me with the frozen stomach which can only now work 20 percent of its capability to pass anything that goes through it. I tried to sue the surgeon, but I was told by an attorney that that can happen maybe 10 percent of the time and is not suable. So, if your doctor ever suggests that type of surgery, take heed.
I have read that stress can worsen the IPF effects so as you said, the stress of purchasing a new house and moving into it may have caused a lot of your problems. I hope the change goes well for you. I am glad that you are not on oxygen yet. I am not there yet either. I was on oxygen for a month after a tube relocation surgery about a year ago and it wasn’t pleasant being on the oxygen.
I am thankful that we own our house and have lived in it for 48 years. We have contemplated on moving to a smaller house that is more handicapped accessible, but we love our home and my wife has it fixed up the way she wants it. After 48 years of collecting things, I don’t know what we would do with them. The oversized 2 car garage and basement is full of junk we don’t need or use anymore. Getting rid of them is our ever on going objective. I don’t have the energy to help and she can only do so much.
I’ve taken up enough of your time, so I’ll close now. I will keep reviewing your posts or requests and reply as soon as I can.
Ray King
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Afternoon Ray.
Wow your cost once approved will only be $35 a month!!!! Oh I would love that. Right now the foundation pays what the insurance company does not, but for a few months I am going to be on the hook. Assuming I do not develop any problems with this medication. Hope not. As there is nothing else I can take.
My meds are processed by CVS speciality. Could have gone though another company but where I want to sign for my medication, I opted for CVS as I can have it shipped to their store and pick it up there. The first month I was on Esbriet I opted to have UPS deliver it, First I had multiple delays because of weather. Then the day it was suppose to arrive around 2 PM, it did not show up until almost 7. I hate having to wait around for a delivery so it was then that I said to just ship it to the store and they can call me when it comes in. The first month it went to the store they misplaced it. Can you believe that? I laughed at them and said “Did you lose my drugs?” 20 minutes later and a lot of people they found it. They apologized for the mess up, I said not a big problem as if they could not have found it, they not me would be on the hook to replace it.
Ah the weight. I would like to lose around 15 more. We shall see.
So sorry about the amount of food you can eat. In some ways I am the same way. The one good thing, at least for now, is I can still have a drink at night. They had me on a med before Esbriet where I was not suppose to drink. I scolded my doctor and he said I could have a glass of wine once in a while, but there were no limitations on either the Esbriet or OFEV. Probably is not great for me, but given all of the stuff I can no longer do or enjoy, until told otherwise, I am going to enjoy my drink.
I can only imagine the stuff you and your wife have collected in all of those years. I know we collected a lot of stuff in the 22 years I was at the house we just sold.
Did I read one of your earlier postings that you live out in the western part of the country? Has the weather impacted how much you can go outside?
I went for a short walk today before it got to hot. And did a little yard work. I hate not doing anything but it seems when I do, I get so tired. I assume you run into the same thing.
Well I have to get ready to do some stuff around here before my energy level drops again.
Have a great day. Talk to you later
Paula -
Good Afternoon Paula,
I guess I shouldn’t’ complain about the $35 it will cost me if my insurance company does finally decide in my favor and allow me to get it. My health insurance company is Federal Retired Employees Blue Cross and Blue Shield and they also use CVS Pharmacy for my mail purchases of prescribed drugs, but it must be a 90-day supply when I order. They cost $10 for a Generic 90-day mail order supply. Otherwise, I can get the drugs at any local drug store for the prescribed time for a real reduced co-pay. I’m not sure how CVS Specialty Drug Co will deliver my supply if I can get it.
I’m sorry you had a hard time with UPS on your delivery. I get angry with them when they deliver a package because they generally just leave it on the front porch. When I got our free sample from Esbriet, it came UPS, but we had to sign for it, so they rang the doorbell.
It seems it is always hard to lose weight but easy to gain. I wish you luck in trying to lose an additional 15 lbs.
Today, I had seen a recipe in the news paper for a shrimp/artichoke heart quiche that I felt that I just had to try to make today. I got it done but I had to stop, sit down and rest 3 or 4 times during the preparation and then cleaning up my cooking mess. I was really fatigued out of it when I finished and as usual a little nauseated, so I won’t try to taste it until tomorrow. It really stresses me out that I can no longer cook meals. I was kind of a gourmet cook prior to having the frozen stomach problem and with this added IPF fatigue, I can’t do it anymore. We have been married 60 years now and ever since we got married I had always prepared our Thanksgiving meal, but I haven’t been able to do it for the last 7 years. My wife hates to cook so she was happy I had taken over.
I wish I could have a good drink occasionally too but with all the meds I am taking for my heart and stomach, etc. it is Taboo.
Yes, we live in the Western part of the US. We live in Idaho. We do have a lot of fires around the state and from the surrounding states plus Canada. They produce smoke that the wind has dumped into our valley area. We are now in an extreme raspatory hazard alert warning now and warned to stay inside as much as possible. Since I don’t go outside much, most of the time it doesn’t cause me any problems other that eye, nose and some throat irritations. I can’t do much yard work anymore, so we pay to have our lawn and yard work done. We have a lawn sprinkler installed and, in the winter, we hire people to shovel the snow off our driveway and walks. We live on a large corner lot, so we have a lot of walk to clear. Also, we have a large two car cement driveway that must be cleared. I did have a lawn mower but sold it because I couldn’t handle it. We have a snow blower and my wife had taken over shoveling the drive and walks for a while until she injured her back and had to give it up. We are just getting too old for that kind of work.
I’ll close now and get some of my pending projects done. Keep me informed.
Ray King
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Good Morning Ray
I forgot to address your stomach issues. Really sorry about what that surgeon did to you. But I am really surprised that the lawyer did not pursue a lawsuit.
I understand about the stomach getting upset easily. Sometimes for me, just thinking about something is enough to get my stomach going. You will have to tell me how your Quiche ended up. Not a fan of artichokes but love quiche. At least I used to.
To be honest I never thought about asking if if could get the EFOV meds in a 3 month supply. I am not sure it has even been approached to me. Once you get the meds approved you will have to go through a specialty pharmacy to order them. Definitely not something that is stocked at the regular pharmacy.
I just ordered something that caught my eye that will track all sorts of things, heart rate, blood pressure but in my humble opinion more important oxygen saturation. Reading the description it mentioned that at night time if your level drops the wrist unit that looks like a fitbit thing, will vibrate to wake you up. Nudging you to take deeper breaths or change your position, which would be a problem for you with the feeding tube. (shifting positions). I will have to let you and others here know how it works out as those pesky O2 levels are kind of important to us.
Idaho? Nice. I have a friend that lives in Montana. He is a fishing guide. And several friends who live in Wisconsin. I have always heard that Idaho is a beautiful state. With all of the fires out there, I am always worried about the people out there as well as the wildlife. We are actually getting smoke clouds (that is what the weather person said) from the fires out there.
I used to love mowing the lawn I just do not think I could handle it anymore. Just being in the shade weeding does a number on my breathing.
Wow 60 years of being married. That is simply awesome.
Like you, I really enjoy cooking Thanksgiving dinner. Probably nothing I enjoy more. Nothing like the smell of a roasting turkey. Fortunately I do not have to do clean up duty. Works for me. I make it, they clean it.
Speaking of cleaning, I need to put away my breakfast dishes.
I hope you have a wonderful day.
Paula
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My pulmonologist recently switched my IPF medication from OFEV, which I took for a year and a half, to Esbriet. This was in response to a recent study that indicated taking a combination of the two was more effective at slowing the deterioration of the lungs than either alone. I am in my third month of Esbriet and have not yet been directed by my pulmonologist to start taking it in combination with OFEV. In contrast with OFEV, I have experienced no diarrhea, normal appetite, recovery of some weight loss, and no stomach problems. The major side effect is high sensitivity to UV rays, which hit me in the second month. I did not apply sun screen as recommended and my arms became red and itchy. I have been treating them with skin moisturizing cream and cortisone cream. I have not had a lung function test since beginning Esbriet so I do not know whether by itself it is more or less effective than OFEV. A major difference in the two is that OFEV is taken twice a day, Esbriet is three times. This is annoying because it requires remembering to bring the midday pill when away from home during the day. I am hoping that current research and trials of other treatments for IPF will be approved before my condition worsens substantially. I am monitoring this and other websites and have not seen any announcements so far.
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Hi Robert,
Thanks so much for sharing your experience with us re: switching your anti-fibrotic medications. I know someone recently on the forums was hoping for more information this, so I am sure your reply will appeal to them. So glad you haven’t experienced any unpleasant side effects of Esbriet, unfortunately that happens often so I am really glad to hear it isn’t something you’re having to deal with. Are you on the full/highest dose of Esbriet?
I haven’t yet heard of using OFEV and Esbriet in combination but I’d love to hear more about this. Any chance you could post the study making reference to the benefit of this? I’m sure lots of us would like to read it if you have a moment to do so 🙂
Yes, I’ve heard lots of people struggle with UV rays and sunburns/skin irritations when dealing with Esbriet. It is a common side effect as well. Let us know how your next PFT goes if you remember to, I’d be so curious to know if the Esbriet is more effective for you (or seemingly so) than the OFEV or when your doctor suggests taking them together. This is fascinating to me as I haven’t heard of this before.
Thanks again for sharing, I know many people will find your post informative.
Kindest regards,
Charlene.
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Good early Afternoon to you Paula,
About the stomach issues. I really did try hard to sue the surgeon and went to a lot of expense on my part to get copies of all my medical records I had from local medical services and even Mayo Clinic in Arizona that I went to two times that tried to correct the botched surgery. Before the surgery I did sign a small print, disclaimer statement stating that there is a 10% possibility that things could go wrong. The lawyers said I was just one of those 10%. They said they would fight it, but my chances of winning were nil, and I would end up paying for the whole trial. They all wanted a large contingency deposit if they tried to fight it but assured me that they didn’t feel I would win.
The quiche recipe was quite simple and turned out well. When it was done yesterday early afternoon, I could not eat any of it and my wife had already eaten her meal earlier, so she didn’t eat any. We both tried it this morning with some Salsa. It was good, but I wish I would have used more shrimp and possibly not cooked the shrimp prior to putting it in the mix before cooking. After the quiche cooking time, 45-50 minutes, the shrimp was way overcooked and hard. The chopped-up artichoke hearts were well disintegrated and not distinguishable. It was just kind of an egg biscuit cake with some pieces shrimp in it. I much prefer a recipe I have fixed called a Seafood Casserole much better. It has eggs, Gruyere cheese, crab, shrimp, and scallops in it. I sometime put 8oz Spinach in it too, if I have it on hand. You can include mushrooms and other items if you want to.
I don’t think my health insurance company, if they accept me, would provide the Esbriet to me in a 3 months supply. I think it would fall under the 30-day restriction a lot of medications fall under. I can only get Hydrocodone for 30 days, so I just purchase it at the CVS pharmacy, Walgreens, when I run out. I can purchase a 30-day supply of it for a little over $3 co-pay there where it would cost me $10 to go thru my insurance mail order process and must I wait 7 days to receive it.
That monitor device you were telling me about does sound like a useful item. I think I know what you are referring to. They have several types of them listed on Amazon.com. I had purchased one just called OxyWatch at Walgreens that shows me my %SpO2 and heart rate that I use to check my levels on occasion. It is the kind they use when you go on Doctors’ visits. My oxygen level seems to be pretty good while I I am just sitting, which I do most of the time. I have no idea where it goes when I am moving or working. I guess I should check that too. The kind, I think you are talking about are a lot more expensive but show and record more info. My son and daughter have one that they use when they exercise. One of my son’s uses an automatic Cpap machine mask at night to insure he keeps breathing. If he quits breathing, it kicks in and forces him to breath. His wife had complained that he was snoring and was quitting breathing and she worried about it, so he went to the Dr and he ran some night sleeping tests and put him on it. It was a Sleep Apnea condition. He has since started exercising, running and lost a lot of weight which seems to help him a little.
Yes, Idaho is quite beautiful in most locations. It does have some sagebrush covered flat areas, mountains, forests and farmlands. Idaho produces 90% of the nations potatoes. Our city is about 4,500 ft elevation, surrounded by mountains, so we get all kinds of weather. We are only a couple of hundred miles from the Montana border. I guess you are located someplace in Canada? You hadn’t mentioned, and I don’t remember seeing you stating your location in your posts.
Yes, the fires are taking a toll on the wildlife. It has also consumed a lot of the forest lands too. There is a consensus that they are helping in some way though because there is so much deadfall and dead trees standing so that it is making it impossible for them to get to the fires and maybe the fires will clear out some of it. Where there has been fires here in Idaho, they have cleaned the areas and replanted the trees. Some of the areas where this has been done have regrown sections that are better accessible for logging, camping and other uses.
Yes, 60 years of married life has covered a lot of life. It seems like now, just a couple of months or years living together without marriage is the way of life. This is my second marriage. We had one child. I was drafted into the Army during the Korean War and we dissolved it shortly after I got out. Three years later, I remarried someone else. We have 5 grown children. From the results of the two marriages, I am a great, great, grandfather. Time does fly.
I use to enjoy cooking the Thanksgiving dinner because I could fix the stuffings of my choice. I always liked making both the oyster and sausage stuffing because I love both. I think I like eating the stuffing better than the turkey. It’s sometimes hard to roast a turkey without over cooking it which makes it dry. Over the years, I usually tried different methods to prevent it. I prefer cooking the turkey with the stuffing it. I usually don’t have very many utensils to have to wash after cooking because I like to keep them cleaned up as I am standing around waiting for something to get done. Now that I can’t stand for very long, that contributes to my not wanting to cook anymore. My wife and guests would usually take care of the table before and after we ate so they would take care of that part. My wife always wants special Holliday decorations and dishes for the occasions.
I better close now and get some stuff done. My daughter called last night and said she and my son will be coming for a visit Monday and are staying for a week. My daughter has a 15-year-old son that has Autism and Down Syndrome and must tend him every day and wants to get away for a while. Her husband will take the week off to tend him while she is away. Their son doesn’t travel well so she or her husband must stay and take care of him while the other goes someplace. He also doesn’t hardly walk and doesn’t talk. They have had a real trial over the years with him. Their other three children are all grown and away, so they can’t help at this time. My son’s wife has a business doing care work for the elderly, so she can’t come either. So, since our son and daughter live a few miles away from each other they decided on traveling the 250 miles together and come home for the visit. It will be nice to see them again.
I promise I will close now for sure and get this posted.
Take good care of yourself.
Ray King
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