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Starting Esbriet
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Interesting Robert. Although I would be surprised if my insurance company would be willing to cough up that amount of money every month and that additional cost would drain my grant money very quickly. But a moot point as I developed an allergy to the Esbriet.
I lost a good amount of weight on the Esbriet. and am still losing with OfEV
Please let us know how things progress when they put you on both meds.
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I am super curious about this too Paula, and hoping Robert (Bob) does well on the combination of both anti-fibrotic medications. He so kindly sent me the link to the Pulmonary Fibrosis News article highlighting how this can benefit patients with PF. Here is the link if you’re interested: https://pulmonaryfibrosisnews.com/2018/08/07/ofev-esbriet-combo-appears-safe-ipf-patients-clinical-trial/
Hope you’re doing well 🙂
Charlene.
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Good Morning Ray
First i hope that you have a great visit with your daughter and son. I used to live in Plymouth, MA (home of the dumb rock) but we just bought a house an hour north which puts us dead center of my son and daughter. Each live 20 minutes away from me in opposite directions.Living in Plymouth was very expensive. We lived on a dirt road (actually lived on a very large pond, although given it was 135 acres I think it should have been called a lake) so at least once a year when it snowed we could expect to be trapped on our road. With my health issues the last thing we wanted was to have an emergency and be unable to get out. Additionally it was harder for the kids to come down quickly. Which I am sure your all to well aware of those issues.
Charlene lives in Canada.
The monitor I just got you wear on your wrist and it informs you all day long what your levels are. Like you I have one of those things similar to what they use at the doctors but this thing, if I can figure it out will tell me no matter where I am what is going on. Given my numbers have been lousy lately I may not want to know my numbers. This thing cost me $50. Which was not too bad especially if it does what it is suppose to. It was suppose to take a week to get here but came in 2 days. The box had prime written on it. I am not a member of prime and they better have not charged me prime rates.
Well time to grab something to eat so I can take my meds.
Enjoy your visit with your son/daughter.
Paula
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Good day Paula,
Thank you for telling me your physical location in the US. Rereading one of your posts, you did mention something about how hot the weather seemed to be here in the US. I guess I just spaced it.
I know Charlene lives in Canada. She mentioned to me that she lives in Quebec near a Great Lake and about 8 hours from NYC.
That new location where you live must put you close to Salem? About 10 years ago when one of my daughters was staying and working in Philadelphia, we went to visit her there for about a week. She took us on a tour of several states on the NE coast. When we were in NY she promised me, she would take me to where I could get a good Maine Lobster dinner. Before going to Philadelphia, we had been reading our genealogy and had found out we were a distant relative of the founder of Salem, Roger Conant. Our daughter said we would go there too as it was close to Boston where we were booked on a guided tour. While in Salem, we got to see the Roger Conant statue and get a picture of us standing by it. We also took a small tour of Salem and attended a session telling us about the Witch Trial. We didn’t end up going to Maine, but our daughter said there were a lot of good restaurants in Boston that that had Maine Lobster on the menu and we ended up going to one. She bought me a great big Lobster dinner. I had a hard time eating all of it, but I made it. That was in the good days when I could eat well and hold lots of food. Now just a couple of Shrimp fill me up.
l know it seems to cost a lot of money to live in a lot of the East Coast locations. When my daughter was living in a house she bought in CA and lived in it for eight years, she went to work for the Military on the East Coast. She ended up purchasing a house in NJ, so she could commute to work there. The rent she was paying to live anywhere close to her work had been costing her a fortune, so she felt it was cheaper to buy one. She now lives in and works in CO where she just purchase another house there. So now, she owns a house in CA, NJ and CO. She hasn’t had any problem renting out the unused homes she owns though.
It sounds like the wrist monitor you got is neat. Let me know the kind and how well it works for you. Maybe I will purchase one for me if you say it does what it says it will. I do have Amazon Prime and have purchased a lot of things from them. Especially around Christmas time. My kids do the same thing. They order them and have them shipped direct to us. It really saves on postage which costs about as much as what they are sending sometimes. We sometimes find out what we are getting before Christmas because Amazon may ship it in its original box without a re-box, but we know what it was for anyway.
I better close now and try to help my wife get the house ready for our kids visit later today. If I ask my wife what I can do to help, she always says “nothing”, but I know she can use some help.
Until later.
Ray King
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Afternoon Ray
I have never been to Salem. Would love to go one day. Its close to 2 hours north of where I am. Before we move we were less than 10 minutes from the bridge to go over to Cape Cod. Now I am a stones throw from Rhode Island.
Yes housing is very expensive here. But I think a lot of it balances out. I remember how cheap the houses were in Alabama but then the pay scale was much less than up north. And they had a ton of taxes. State, local. and in some areas country tax.
I am trying to get the O2 thing to work properly. I have been in contact with the company and hope we can get this straighten out as I think its a cool thing. Right now though the O2 levels are way off. Keeps telling me at various times of the day that my saturation number is 99. I have not been that high in over 1 and a half years. I am usually in the 80s to low 90s
You children should be there now, so I will sign off. You have a great visit. Talk to you later
Paula
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Hi Charlene,
We did have a nice weekend, thank you. We were just getting things straightened up for a couple of our kids visit starting later today. They will be staying for a week.
I’m sorry the weather was so stormy while you were at the Craft show and you didn’t have all the participation that you could have had if the weather had been better. But, I am very happy to hear that your entrance in the craft show came out so well and you even got some Christmas orders. I’m sure the money you made will really come in handy for you. Did you have and give out any business cards or brochures?
I’m also sorry you couldn’t be able to take advantage of the swimming etc. while at the cabin. I do remember seeing something in the news about E. coli in some waters causing a problem for swimmers. I don’t remember where it was happening though. Florida was closing some of its beaches because of Algae in the water causing health problems. That wasn’t where you are for sure but there seems to be a lot of problems in the various areas causing people not to be able to use the popular beaches. California had a lot of dead fish cluttering some of their beaches keeping people away. Maybe next year it will be better.
Yes, the warm Summer recreation time is closing. I noticed that our local Aquatic swimming pool closed Sunday. The participation had really gone down since school started.
You mentioned you were looking forward to a vacation in Nova Scotia through the cooler weather. I’m not looking forward to Winter coming either. It is about time for me to be looking for someone that I can hire to clear the snow off our driveway and walks. We had someone contracted last year but I’m not sure he will be doing it again this year. He was fast and good. I have a snow blower but neither of us has the health to do the work. It still requires a lot of shoveling in some areas and since I couldn’t do it my wife tried a couple of years ago and injured her back.
We still haven’t had much of any thing we could call a good rain except one day last week. It was a lightning storm and didn’t last very long to wet up much or clear the smoke from the fires. The lightning just started some new ones and the winds spread the burning fires. It is forcast to cool down more this week, but no rain expected.
I just received a call that the house roofer was coming to start re-roofing our house Thursday. Guess we will be getting a lot of noise for a few days then.
I guess I’d better close now and get ready for my son and daughter’s visit this week. They called about an hour ago and said they were about two hours away.
Take care and enjoy your days.
Ray King
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Hi Paula and Ray,
It is so nice to see the conversations taking place between you both, and the experiences you share that are similar. I know I always benefit from connecting with others who have shared experiences, so it is nice to see this taking place on the forums 🙂
You are both correct – I am in Canada, but closer to the Quebec boarder in Ontario!
How is your week going with your kids visiting Ray? That is nice for you and your wife and I hope you’re enjoying their company. Glad you had a nice weekend as well and thanks for all of your kind words regarding the craftshow. Your idea of business cards and/or brochures is a good one, and I should consider it especially as Christmas gets closer. I didn’t do any in advance of the craftshow this time, as everyone at my cottage park knows me but in future shows that I do where participants don’t know me, this is a good promotional idea. Thanks!
I saw the fish issue on the California beaches, that was really scary as I wonder what pollution(s) could have caused such an issue with so many fish. Yes, our beaches being a great lake are subjected to run-off from the farmer’s lands and when it rains significantly, it can often pollute the water. We’ve had so much rain here lately that the run-off is pretty intense, causing high levels of E.Coli in the water. With a chronic health issue, I never take the chance of swimming in potentially contaminated waters. Thankfully the warnings don’t usually last too long (a couple of days) so I’m hopeful it will be lifted by this coming weekend.
Are the kids already back to school where you are? They return next week for us.
Yes, I am so excited to vacation in Nova Scotia in two weeks! It is still warm, but the air is cooler and I’m looking forward to that. 20 degrees with no humidity is much more pleasant than the 38 degree humidity Ontario is having right now. It will be a nice break, and I love to be by the ocean too! I’m also not looking forward to winter weather though, I really don’t like the freezing cold and we’ve had terribly cold winters the last few years. Securing someone for snow removal is something I have to do as well and should get on that soon, as I don’t like waiting until last minute to organize these things.
Hopefully we send some of the rain here to you guys, it sounds like you need it there and we’ve had about enough now. I hope the roofing goes well this week also!
Enjoy your time with your children, and hope you’re having an nice week.
Cheers,
Charlene.
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Hi Charlene,
I just got a little extra time while my kids are visiting to catch up on some of the questions that you posted to me. My wife took them shopping which she loves to do, and she knows that I hate shopping and can’t walk and stand that long. So, I stayed home.
Thank you for the information on where to find the information on taking two different drugs for the IPF. In a way it is exciting and in another, kind of a worry. I’m having problems enough trying to get my insurance to cover just one of them.
Now that I mention on getting Esbriet coverage from my insurance company, yesterday,
I received a phone call from Genentech (Esbriet) wanting to know if I wanted a refill of the free sample of Esbriet. I was kind of puzzled as I still had not received any notification from my insurance company that they would cover some of the RX cost. I explained that to them and that since I only started on them last Saturday, I wouldn’t need any more for a while. They said they would be calling me every 2 to 3 weeks to see if I needed the refill. I told them that if I did receive the insurance company OK that they would probably be filling my doctor’s RX submission, so I could keep getting them. They said, it didn’t matter, if I was running out, they would send me 30-days more of it. I asked them how much that would cost, and they said it would be free and if my insurance never did end up covering it, they would continue to send it to me free if. I asked what their name was again, and they said, “Genentech Access To Care Foundation’. So, I guess I will quit worrying about whether my insurance will provide it for me after they sent me the denial and I have been awaiting their decision on my coverage denial appeal. If I could get it free through the Genentech ATC Foundation, why should I want to pay the $35/Month it would cost me through insurance? Genentech said they wanted to help rather than let me die by not getting Esbriet. What a surprise to finish my many weeks of worry. I’ll let my Pulmonologist know about the results when I have my appointment in September.
Paula and I did get a little personal information from each other about our IPF problems, monitoring aids, and geographical locations from each other. After reading about how much some of you IPF forum participants are having at the different stages of this disease, it kind of makes me realize that so far, I should quit complaining as I don’t really have the real bad problems yet to complain about.
Yes, the local lower schools started this week and they started at the local University the previous week. It seems they start school earlier and earlier each few years. I guess it won’t be too long that kids start attending school all Summer too. I think the Summer break was started way back when the kids use to have to help on the farms. That period has long passed as we seem to be getting less farms and farmers and farmers are using more and better equipment. A lot of our farm lands are changing to housing sub-division areas.
Good luck at finding someone to take care of your snow removal chores this Winter when you are enjoying the ocean beaches in Nova Scotia. Do you stay there the entire Winter? What do you do for a place to stay in while there?
I wish you could send us some of the rain you are getting, as you suggested. I see on the news now though, you are back up with the hot temperatures again. We are starting to get lucky and our temperatures have dropped to the low 80s and the nights in the upper 30s and low 40s. That gives us some relief.
Well, tomorrow the roof replacement starts so it will be noisy here for a few days. They are removing the old roofing and rain gutter and replacing it.
I guess I’ll close for now.
Keep me posted on how things are going for you.
Cheers,
Ray King-
Hi Ray,
Great to hear from you, thanks for writing back! I hope I didn’t take too much of your time away from your kids, and that you had a wonderful visit? Please excuse the brevity of this message, it is pretty late here and I have an early morning but I wanted to get back to you as soon as I could 🙂
Did they have a nice shopping trip? Sounds like your wife and I would get along, I love to shop although I am not able to do it as easily now as I once was thanks to my IPF diagnosis.
I agree re: the hope that the combination of the two anti-fibrotic medications can bring, but I think we’re a long way off of having insurance providers approve them. As you mentioned, I know you’ve been having a tough time with getting them just to cover one drug! I also would worry about the combined side effects of the two drugs, since both of them just on their own can have very unpleasant side effects once you start them. Are you experiencing any side effects since you’ve started taking the Esbriet?
I would be puzzled with the re-fill call as well, especially since you haven’t yet heard from the insurance company. That said, I am glad they said they would continue calling you and offering a refill because maybe you could accept the refills and store them for awhile, giving you a bit of a “buffer” while the insurance company is clearly taking their time in giving you an answer. Might this be an option for when they call you back? That is wonderful news about that company, I’d take it as a sign and just go with it and then whatever your insurance company comes back with might just be a bonus, if it is a positive response. They sound wonderful, and I’m really glad they connected with you Ray! Do you have a pulmonology appointment coming up in September that might tell you whether or not the Esbriet is helping, even a little bit?
The kids here start back to school this week, and are likely celebrating the end of summer through this long weekend here in Canada. It is always a bitter sweet one for me as I see my family (ie. cousins) so often in the summer due to having the cottage but once we close it down in anticipation of winter, the amount of time we see each other is significantly reduced. Likely after this weekend, I won’t see a lot of my cousins until our annual family Christmas which we always have at the end of November. That’ll be here before we know it too, so I am headed to bed very shortly to get up early and go to the cottage so I can maximize the time I have with them this weekend.
Sadly, a lot of our farm land here is also being taken over by sub-divisions and buildings. It seems like the city I live it is just expanding its geographical area like crazy!
Oh, I am just going to Nova Scotia for a week… although I wish I could go longer! I will be back long in advance of the snow here in Ontario, but it will soon be time to start arranging that for sure. When I go out east the week after this one coming up, I am actually staying with friends who live there so I am really excited to see them and be oceanside for a few days.
Hope the weather holds out for you this weekend, and that you can enjoy a few days of cooler temperatures! You’re right, our temps are hot, hot, hot again this weekend but it is likely the last of the high heat and humidity waves. Fingers crossed anyways 🙂
Hoping the roofing goes well Ray and as always, thanks for writing. I hope everything is going well with you and that your visit with your kids was wonderful.
Cheers for now,
Charlene.
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Thanks for the link Charlene. Though given my allergy to the Esbriet I know I will not be able to benefit from taking both. Ahhhh another day in paradise. lol
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Oh right Paula, haha how silly of me! That gave me a chuckle that I didn’t seem to remember that experience for you, although I should have… I am going to blame it on being chronically under-oxygenated, as opposed to simply forgetful!
Cheers,
Charlene.
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Hi Charlene,
Thank you for your post to me. I am glad to hear that you are probably now relaxing a little at your beach house.
I’m a little late responding since I have been busy entertaining the couple of our kids that came home for a visit for a few days. They will be leaving for their homes Monday sometime.
No, I am not experiencing any real bad effects since I started the Esbriet. But I had only started taking the 1 tablet per day last Saturday and Saturday I went to 2 tablets 3-times per day, so I haven’t really had a lot of it yet. I keep watching for some symptoms of bad effects, but I think I manufacture them in how I feel sometime and wonder it the Esbriet caused how I was feeling. The feeling doesn’t remain the next day, so I guess it didn’t cause what I was experiencing at the time.
I guess you were probably correct in suggesting I should have just had Esbriet go ahead and send me more of the pills when they offered so I could keep them on reserve. My wife had suggested that to me after I hung up on the phone too. I guess I was just not thinking and was suffering from the shock of them telling me I could be getting them free if necessary. They did say they would call back in two or three weeks again to check. I’ll know what to tell them then.
Yes, I do have an appointment with the pulmonologist on September 19. He will be evaluating how I am doing on the Esbriet.
I’m sorry you won’t be able to see your cousins as much as you would like to but now school has started. School starting does seem to cause a great lull in keeping up close relations with our relatives. Summer seems to be the time when all the good family reunions take place.
Thank you for telling me more of the details of your planned weeks Nova Scotia get away. It sounds fun and maybe you will be able to take it easy for a while. Are you going to fly there? It’s nice that you have some friends there to stay with for a while. I would imagine that cabins and other lodging there would cost a fortune?
The weather here has cooled down some. Even though it’s a few degrees cooler it seems that you can feel the Fall in the air and it’s kind of chilly in the early morning.
The roofers started removing the shingles from our house early Friday Morning. Late that evening they had finished preparation for shingles on about two thirds of the house and left for the Labor Day Holiday. They will be back Monday. There was sure a lot of noise from their ponding Friday. You could hardly carry on a conversation with anyone.
They left a trash trailer in our driveway blocking our garage doors and a large tool trailer parked in front of our house. Luckily, we had moved one of cars out of the garage and parked it at on the side street of our house, so we can go places.I better close for now. It is early Sunday morning and the kids are still asleep. We have been taking them out to eat a lot, so we don’t have to cook a lot and can just do things to entertain them without all the prep and cleanup problems. Also, one of our daughters that lives in our city has been having them over to her house for BBQs, drinking and visiting. Her children are older, some married, so they all get together and play games, eat, drink and enjoy the evening and night. My wife and I don’t usually go because I must change my bandages and attach my food bag that hangs on an IV stand at 7pm and it would be impossible to load me into the car to go there. I couldn’t eat or drink anything anyway. I feel kind of bad that my wife doesn’t go but she has taken over as my nurse and feels she must do all that work and stay home with me. She always keeps track of my medications that she grinds and injects them in my feeding tube three times per day and makes sure my prescriptions are all refilled. I don’t know what I would do without her. Just die, I guess?
I always love hearing from you. You are so informative and interesting to communicate with. I get a lot of information on what you post on your life and others you comment on with IPF problems. I just don’t know where you find the time to keep up with everything.
Enjoy what is left of your weekend
Until next time.
Ray King-
Hi Ray,
Thanks so much for your reply and I hope you’ve had a wonderful weekend. It sounds like your kids were leaving today, hope they got off safely and you all enjoyed your visit together 🙂
Glad no side effects yet from the Esbriet, that’s good news! I’ll keep my fingers crossed that as you increase the dose that the side effects remain at bay. Some people experience some really difficult side effects and others don’t experience any. There have been a few folks on our forums who mentioned they started on Esbriet without any issues.
Good idea when the call back to say yes to receiving them for free and kind of “storing” them up as needed, just in case someday the option of having them given to you changes. Just watch the shelf life on them of course. My Mom is a pharmacist so she always reminds me of the shelf life of medications…. guess it wears off on me. Goodluck on your September 19th appointment. I have one right after you on the 20th!
The weekend at my cottage with my cousins was lovely. It is so nice to spend time with them, and we even got an updated cousins photo that I’ll probably blow up to scrapbook. It has our grandma in it (my only living grandparent left) as well so I’ll frame it and give it to her at Christmas time I think. It turned out to be a really good photo.
I am flying to Nova Scotia yes, and I’ll be in bed this time next week as I have to get up at 4 am to catch my flight. That’s okay though, it’ll mean less traffic to the airport and less people when I get there as my flight is so early 🙂 I have my appointment to get my oxygen concentrator all checked for a safe flight tomorrow, so I’ll be happy when that is done.
Sounds like your wife is a wonderful woman Ray, and loves you very much. Just keep doing what you’re doing which is your best and none of us can ask for any more than that, right? Glad you had such a nice visit with your kids, hopefully lots of wonderful memories to hang on too. I will close now too a the last night of summer break comes to a close, I have lots of exciting things to look forward to this week…. especially vacation starting on Friday. I can’t wait, I might run out of the office …. pun intended (I can’t run anymore!) 😉
Thank you so much for your kind words, I really appreciate them! It is so nice to know that you find our communication beneficial, as I really enjoy “chatting” with you as well. Sometimes the time eludes me, that is for sure and I’m spending more time on the forums right now than before, but that is alright. It is very therapeutic for me too!
Take care and until next time,
Charlene 🙂
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Hi Charlene,
Very nice to hear from you again.
Yes, I am very thankful so far that I haven’t had a bad side effects from the Esbriet and now increasing the dose. Of course, I haven’t been taking it very long yet. It is possible that I haven’t had the stomach problems of nausea, pains, etc. since it never enters my stomach. I guess since I seem to be the only one that Esbriet knows about that must take it directly to my intestines that I should charge them something for being a Ginny pig trying to do it that way. Just a funny thought. I shouldn’t complain since they don’t charge me for it yet.
It must be great to have a mother that is a pharmacist. If you have any questions about any of the drugs you are taking you can get fast results on a solution of what to do about it. We had a lot of problems with Clopidogrel, a generic for Plavix that I am taking. For almost a year I was taking it with no problems crushing it and running it through a syringe into my feeding tube. Then after a refill it seemed to stick to the sides of the plunger and feeding tube like glue and made it almost impossible to wash and reuse the syringe again. It did the same thing to a little valve I have on the feeding tube and we had to eventually throw away the valve. We contacted Walgreens about it and they said the company had changed the supplier because the company making it before had stopped making it. They tried getting other brands of it for us to try a few to see if that solved the problem and they suggested we go to another pharmacy that could mix it for us. We did but it cost us quite a lot to have it that done. Finally, Walgreens was able to get one that would work better. It still stuck to the syringe a little but with a little extra cleaning it seems to work OK. Walgreens said they would make a note on my refill record to make sure we got the one that was working for us.
Genentech, Esbriet rep, did schedule a meeting with us again on the 11th of September, so I will have a chance to ask any questions about it before the appointment I have with the Pulmonologist on the 19th. I wasn’t sure I wanted to keep the Genentech rep again since I don’t feel I got anything new from him on our first visit, but I guess I still should give him a chance again. I wish he could be able to schedule his meeting visits in a different location than the local public library. We go to a table there, but I guess he must talk low, so he won’t disturb anyone, and I have poor time hearing and must have him repeat a lot. I even have my hearing aid turned up as far as I dare. He said they won’t let him go to people’s houses, it must be a public location. I wonder if a bar or restaurant would work? Ha Ha. Be sure you keep me posted on what you find out on your Pulmonologists Sept 20 appointment.
Sounds like you had a good time over the weekend with you cousins. Our kids always take a lot of pictures of everything we do when they come for a visit. It seems like a lot of them are taken in front of places they had gone to while they lived here as kids and every time we would all gather at a restaurant they would get the waitress to take a picture of us. Sometimes even other restaurant guests would take them when they noticed we were trying to get a picture and would offer for them for us. They are good memories. My one daughter use to do a lot of scrapbooking and make them real fancy. She still files some of them with different decorations and captions that remind her of what was going on.
I surely hope you enjoy your trip to Nova Scotia this next week. Sounds like you will have some good rest and fun? It must be kind of a hassle having to fly anyplace with an oxygen concentrator. I guess it is at least a way to get to fly with oxygen and they won’t allow oxygen bottles. My daughter who lives in Colorado invited us to go to her place this Christmas. She said she would pay for our tickets, but I think we will decline. With all the feeding tube stuff I’d have to take, it wouldn’t be worth all the trouble. She wants to show off her new house she had built. We didn’t want to make the trip by car in the winter. I think we will wait until next Spring or Summer to do it. It might be a 2-day drive with an overnight stay on the way, but it is a lot easer than trying to fly there.
Our kids had a real nice visit and didn’t leave until about 5PM Monday, yesterday. It was very noisy at the house with all the roofing gonging on. They have been working 10 hours per day on the roof. They start at 6AM and don’t leave until 5pm and seem only to take about ½ hour off for lunch. They have a crew of 5 working. They even worked Monday which was Labor Day and most business don’t’ work that day.
As I have said many, many times I love to communicate with you and I do love to hear about how you are getting along. You really have a lot of interests and seem to handle them very well with everything going on in your life. I am really worried about how to put enough IPF related information in my postings to make it an IPF topic rather than a correspondence letter, but I would hate to stop and not hear from you.
I’ll close now and let you have a little rest.
Take care,
Ray -
Hi Ray,
Great to hear from you, and hope your week is off to a good start! It is unbelievably hot here again today, so I am a bit grumpy due to the excessive heat. I tried to run a few errands today and felt like I was in a sauna….
I’m really glad to hear you haven’t experienced the unpleasant stomach side effects of the Esbriet yet, that is good news. I had a chuckle about charging them to be a ginny pig, that made me laugh but at the same time, you totally should be their spokesperson for a different method of consuming this anti-fibrotic medication. No one else can contribute the experiences you can in terms of how you take it. Hang onto that little piece of information to use for negotiating the free Esbriet if they ever try to start charging you.
It is great having a Mom as a Pharmacist but sometimes it gets a little overwhelming because she always asks what side effects I’m having, or highlights what I could experience even if it is something not on the label (because she knows other patients’ experiences). It can be a bit much, but for the most part I am glad to have her to ask questions to. That must have been frustrating with the drug that was sticking for you. I am glad Walgreens made a note on your file, and hopefully you get the best one for you, the easiest to consume as well.
Your meeting with the Genentech rep is the day I fly out to Nova Scotia! Glad you have a meeting with the pulmonologist on the 19th and can ask/clarify in advance about the Esbriet questions you have. Have they said anymore about how long you will continue to get the free pills? I still think that is great news, you must have some positive karma owed to you 🙂 That is bizzare that you have to meet in a public place. I think a pub or bar would be much more fun, agreed.
I would definitely get along well with your daughter who scrapbooks and likes to take pictures, documenting different times with family and friends. This is something that is really important to me, always has been, and now is even more important. Not that I ever want to think like this, but it will be a nice keepsake for me to leave behind should that time ever come early. I love taking lots of pictures, and it is the perfect time to take photos at our cottage right now because there were 4 generations there this weekend. My grandma bought the cottage and then it expanded from there, but she had a massive stroke in 2015 and is now wheelchair bound and unable to move one side of her body. As a result, it is very tough to have her come up to the cottage where most of our summer family memories took place. She was able to come up this weekend with a respite service provider and we took so many photos, along with her kids (my parents generation), the grandkids (my cousins and I) and some of their kids, which is the 4th generation. There are about 8 great grand kids ranging between 10 days old – 10 years old. It is pretty special!
Thanks so much for your kind words about Nova Scotia – I fly out on September 11th, so just one more week. I truly can’t wait to go, I really need some time away. I am spending time with friends, and one of them is an RN so I feel really safe with her in terms of what I’d need health wise if something happened. She has made all sorts of preparations in advance of my visit, which I’m really grateful for. I also have a tendency to want to do everything while I am on vacation, but I know she will help me find a balance of rest and adventure. I’m so thankful to know all of them, and fear that I might get a little emotional when I see them again at the airport…. they are friends I miss so much! In terms of flying with medical needs, including oxygen, I actually find most airlines to be exceptionally accommodating! I would try calling one or two and asking about their policy on travelling with medical equipment. I went all the way down to Australia with my POC and two tanks, and was assisted the entire way by the flight crew… you might be surprised how willing the airlines are to help you, that is, if you wanted to go see your daughter’s new home in Colorado of course.
Wow, sounds like they are working hard on the roof but probably not fast enough for your liking? I tend to get headaches easily now, likely due to my concussion, so I think I would struggle with noise that long. Hopefully they are almost done 🙂
Don’t be worried about our communications, we can always move them to a direct message if you’d prefer? I like chatting with you too and seeing what you’re upto, our lives are so much more than just IPF-related information so not too worry. Hope you’ve had a great day and chat soon!
Until next time,
Charlene. -
Hi Charlene,
Wow! You answered back on my post fast.So far, my week is starting off well. The roofers told me they had finished shingling the roof Tuesday at about 5:15pm except the new rain gutters installation. They said that a different company would come and do that in a few days. At least no more pounding for a while. It looks like they did a good job so far. The only problem they left us with is they had to move the DISH TV antenna while they put the singles on in that area and although they said they tried to put it back exactly in the same place when they finished, we are not getting a TV signal. When I use to have my own dish type antenna years ago, I know you can only be off a fraction of an inch with directing it to pick up the satellite signal. I installed it myself then, but it was a great big 8 ft dish and this one is a small 2-1/2 or 3-foot antenna. That was way back in 1973 when I installed my own antenna and it was big and heavy. I did it from a kit I had ordered, and I had the TV test equipment because I was doing part time TV repair work then. It is no big deal to align to the satellite, so it shouldn’t take DISH very long when they come out. Meanwhile it seems kind of empty not to have TV to watch. I guess I’ll live, at least that is what my wife keeps telling me.
I’m sorry it is so hot and muggy for you guys on the East Coast. Our weather has really cooled down and in the 40s at night and in the low 80s in the day. We do need some rain though as it is very dry. Maybe your weather will cool down some soon and you won’t be as grumpy as you say you are. I doubt you were very grumpy. You seem like you have a very pleasant mild temper and easy going from your posts.
I thought I wasn’t getting a bad result from the Esbriet, but I think I am having a little problem from dizziness just after I take it and it lasts for about 15 minutes. Maybe it’s just because I have ground up the pills and it hits my system all at once. It said it wasn’t crushable. As I said earlier, you are lucky you have a Pharmacist mother that can help you diagnose any symptoms you might have and tell you how serious they may be. I must try to call my doctor or one of the Genentech nurses. I’ve heard their nurses aren’t much help.
No, Genentech didn’t say how long they would be giving the Esbriet free. When they called I told them I had taken my time at starting the free sample they sent me because I wasn’t sure if my insurance would supply them and I didn’t want to start them if they weren’t. All they said was if the insurance didn’t supply them they would continue to send them to me. I ask how much they would charge me for them and they said it would be free because they wanted to make sure I was taking the pills that would help me. That is not the exact phrase they used but that was what they implied.
I’m sorry your Grandmother had that massive stroke and must be wheelchair bound. At least you got a good visit with her and your relatives there. My mother was one of 16 children, so we always had a lot of real good memorable family reunions as time went on. My mother had massive stroke that paralyzed her whole left side and was bed ridden for over a year before she died from it. Her husband set by the bed they had at home with her 24/7 all that time to turn her over so she wouldn’t get bed sores and give her medications and food all that time. She died on the way while she was being driven from Idaho to Los Angeles, California to another home that they owed there. Strokes can sure cause a lot of problems.
Well, it won’t be much longer when you head for a good rest in Nova Scotia. I noted on the weather forecast last night that a hurricane was headed for the East Coast area next week and although it wasn’t predicted to make landfall, that the water was going to be rough all along the coast. It showed it being just a little South of Nova Scotia on the 12th. I hope it doesn’t spoil you’re getting to go to the beach there. Maybe it will move away fast.
I’ll try to cut down on my constant posts to you, so you can enjoy your life a little. I really don’t like to take so much of your free time by my constant posts to you. I’m kind of selfish I guess.
The local DISH TV dealer did come by at about 3:30 PM yesterday and in about 10 minutes had or TV service back, so I guess I will be able to live a little. Rough to be so dependent on TV.
Will close for now and get this off to you. I know you are going to be busy on your trip preparation so don’t worry about trying to get a reply to my questions real fast. I really do enjoy corresponding with you.
Until later,
Ray
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Hi Ray,
Thanks for your reply – great to hear from you!
My response this time wasn’t so prompt as I am preparing to go away on my trip, and instead of resting / taking it easy this weekend and packing; I took off to my cottage with two girl friends. It was a lot of fun but made for a tiring day today, that’s for sure. Oh well, I’ll rest tomorrow before my early flight on Tuesday morning. How was your weekend?
Glad the roofing is done and hope you got a reprieve from the noise for a bit, but that is a bummer about the TV. Hopefully they have come back now and repositioned it for you. I remember at my parents place how easy it is to move the dish just a small amount, which would then disrupt the TV signal. I actually don’t have TV at my own house, I just use my laptop to watch Netflix or shows online. I rarely do that though, so it is nice not to have the added expense of cable, for me anyways 🙂
The temperature cooled off extreme here this weekend – we actually had multiple blankets on and all the windows closed at the cottage. Can you believe that, based on how hot it was and needing the air conditioner a mere 4 days ago? The nighttime temperature last night was 8 degrees, and today the high was only 17! It is supposed to heat up again this week though, and on the East Coast where I am headed too so that will be nice because Nova Scotia doesn’t get the humidity like we do since it is so close to the ocean. I am so excited for some relaxation time, away from screens and just surrounded by people I love and who love me. It should be good, and I’ll be excited to share some details with you when I return.
Did you get much help from the Esbriet nurses when you called? So sorry about the symptoms you are experiencing; dizziness and nausea are the worst and I hope it subsides for you soon! I am still amazed at the response of the Genentech rep, although in a good way. I hope you continue to get it free for a long time, and then when your insurance comes through, hopefully you can rely on that for even longer. That is, if the drug proves beneficial for you I suppose. I’ll keep my fingers crossed for you!
Thanks for your kind words about my grandmother, or “grammie” as we call her. Strokes are awful, and so sorry you have experienced this in your family as well. We did have a nice time with her at the reunion, and although her body is significantly impacted by the stroke, I am just thankful that her mind is still as sharp as it always was. I’ll never forget some of the words she shared with me this weekend, and it’ll be a memory I cherish long after she’s gone.
I’ve also been keeping an eye on the tropical storm headed for the east coast, although it does seem to still be a bit south of Nova Scotia at the moment. The weather (knock on wood it stays this way) is supposed to be beautiful while I am there, so I can’t wait. Thanks for all your kind words – it is so nice to go on vacation and know there will be people here to share my favourite parts with upon my return. I’ve scheduled some content for when I am away, as I likely won’t be online much but I’ll be back much more rested and relaxed next week I would imagine!
Please don’t think of yourself as selfish, I really enjoy communicating with you too and chatting. It is really nice to have so many wonderful people on these forums, isn’t it?
Oh I’m glad the TV provider got everything solved for you. Are you a movie fan Ray? If so, what are some of your favourites? 🙂
Chat with you soon and have a wonderful week. I look forward to continuing to correspond upon my return.
Until then,
Charlene.
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Hi Charlene,
Just a quick note with no reply needed.
In my last note, I said that I was now taking 2 Esbriet 3-times per day and that I was getting a little dizzy after taking it. Well the next day, I had even more dizziness and It also turned into vomiting 2-3 times per night and day. I called my pulmonologist and they advised me to go back to 1 pill per day and gave me an RX for Phenergan to stop the sickness. Since then, I am still a little dizzy after taking the one Esbriet pill cycle, but the vomiting quit. I am still having a little nausea all day but not too bad.
Also, my insurance company sent me a letter stating they have now approved my denial appeal and would now cover Esbriet for me from 07/02/08 to 02/25/19. I guess after that time I will have to resubmit a new prior approval cycle for another refill.
Have a good trip to Novia Scotia and I hope you really enjoy your time there.
Ray
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Hi Ray!
Sorry, I definitely replied to your longer post before I saw this one so you may have answered some of my questions already – apologies for that!
So so sorry to hear of your experience with the Esbriet, those side effects sound awful and how absolutely disheartening for you. I hope the reduction of the drug back to one tablet has let those symptoms subside a bit? Has the RX helped as well? Glad you seem to be a bit better, at least from when you wrote this originally. Keep up your fluids, I can imagine the vomitting may have dehydrated you a little bit as well. Hopefully the dizziness subsides altogether for you. Sounds like a tough few days!
Glad your insurance provider came back with positive news at least that is a bit of good news, huh?
Thanks for your kind words about my trip. I leave in just over 24 hours and I couldn’t be more excited!
Feel better!
Charlene.
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Great news about your insurance coverage. Weird that its only for 6 months but its a start. Sorry about the nausea hope that gets better.
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Hi Paula,
I know your reply was to Ray, but just checking in on how you’re feeling with the OFEV? Have been thinking of you! 🙂
Charlene.
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Hi Paula,
Thank you for your post.
Yes, it was very odd that the insurance coverage was for only 6 months since the medication isn’t to cure IPF but to help extend a person’s life. Maybe they are hoping I will die within the 6 months? I kind of wonder if they even know the purpose of the drug.
I thought that the post you made about the blue finger dying incident was very funny.
I find my skin is very dry. I think is due to the medications we are taking. My wife has been telling me that I should use some skin location on my legs and feet because my socks have lots of white flakes in them and when she does the cloths washing, the flakes get on everything else and the clothes dryer doesn’t seem to filter them out.
It looks like you may be going to get some rough weather there this week from the hurricanes and winds. I am glad we live in a location where we don’t have hurricanes and only small tornadoes that the weather people classify as dusters. The few we have don’t seem to do much damage. Just tree limbs falling and a few power outages.
I’ll close for now. I have been wondering how you were getting along, but I see you are now in your new house. That should take off some stress? Do you really like it?
Good luck with life. Keep in touch.
Ray
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Hi Ray
Yeah the blue finger thing was funny.I think some of these insurance companies are clueless about many things.
My legs and feet are very dry, where as my arms look like you would see on a 90 year old person. almost looks like the pattern you would see on a snake.
From what we are hearing now the storm is not going to really affect us. But then again we are having a cook out next Sat and we will probably get down pours.
Yes we are in the new house, dealing with contractors etc. I will be so glad once stuff is finally done. The new floors are going in Wed. In some ways the stress has decreased but in other ways not so much. Too many things going on, adding the increase in SOB and my low O2 numbers. My numbers rebound really quickly but no idea how long that will continue to happen.
What I do know is something is not exactly right. Something is off. The low grade temp finally went away. Dealt with that for 2 weeks. I never know from one week to the next which food I will discover that i no longer want. I walked in on my husband heating up pizza earlier, I thought i was going to be ill. Strange. But I have doing some preparations if you will.
I told my husband if I should have to go to the local hospital because of my breathing and knowing that they will not really be able to deal with it, they would normally send me to the big hospital in Providence RI which is less than 26 minutes away. I told him to have them send me to Mass General which is in Boston. Gave him the name of the doctor that I have seen up there, and actually expect my doctor here to have me go back and see him to keep him on top of the changes going one. I also gave him a list of the medications that I am allergic to.
My cough has changed. Used to be very junky. Not so much now. More of a dry annoying cough and many times does not feel like I have the air to cough out. If that makes any sense. And then I have episodes where I will be talking and all of the sudden I get this congested sound in my voice like its crapping out. Kind of hard to explain. I find myself trying to cough up the congestion that seems to be there but there is nothing there.
But enough about me. How was the visit with your children? I bet it was really nice to be able see them.
We have to run and watch the dumb patriots probably win another game.
Paula
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I have written about this earlier, but it bears repeating:
I was diagnosed with IPF after a lung biopsy in November 2015. We caught it early, and my doctor at that time felt that, within the one to ten year range, I would probably fall into the later end of this.
I started Esbriet using the 3 capsules 3 times a day in 2016. I changed to the 801 pill format this January, so that is 1 pill 3 times a day. So, same dose in a different wrapper.
The capsules break up in the stomach, while the pills pass through, as you might expect. I find that the bulk of the nausea effects are due to the medicine being absorbed in the stomach. Going to the pill format dialed side-effects down from 100 to about 5.
I know I am lucky. We caught my IPF early, testing shows that Esbriet works for me. But, I also lost 40 pounds due to the nausea, and basically had given up. I applied for early retirement with Social Security, because I was certain I was dying, soon.
I started the new formulation in January. I have rescinded my retirement (yeah, you can do that; pay the government back and it’s like you never retired…). I still have Zofram (the kind that dissolves) for bad days, but those are much fewer and farther between.
As for why I made the change – I didn’t, nor did my pulmonologist. The Kaiser Specialty Pharmacy just sent the new formula when we re-did my prescription in January.
PLEASE! If you are still taking the capsule form of Esbriet, please talk to your doctor TODAY about switching to the brown 801 tablets.
I am not “well”, but I am not on death’s door, either. I am actually begging you – get the pills! Do! They have changed my life!-
Hi Donald,
I am glad you repeated this actually, and shared your experience with us again as I’d forgotten about this and I’d like to share it with other patients I come across who are struggling with Esbriet side effects. So, I certainly appreciate you taking the time to re-write this out, and I am confident that others will as well!
Has your doctor since prescribed the tablets to patients now, do you know (vs. the capsules?) I’m so curious to hear a physician’s take on this as well, as it makes sense to me and it sounds like a life-changing experience for you in terms of side effect management.
Thanks again for sharing, and I hope you continue to do as well as possible for a long time Donald!
Warm regards,
Charlene.
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Thank you for sharing your experience with Esbriet. Not sure why the change worked so well for you but am very happy for you.
I was fortunate with the Esbriet in that I did not have many of the side affects. I have lost weight but they wanted me to loose weight anyways (I told them to stop putting me on pregnisone and then I could lose the weight) The esbriet seemed to be doing a great job then at about the 4 month mark of being on the medication I developed an allergy to it.
I am now on OFEV a lot of stuff is going on so its hard to determine how well its working.
But I hope those on Esbriet might be able to have the same results that you have seen since going to the different dosage.
Awesome that you have been able to go back to work.
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Hi Paula,
I know your reply was to Donald, but I’m glad you chimed in as I am corresponding with someone (not on the forums) who developed a severe allergy to Esbriet just this past week as well. She has been on it for about 3 months, and I said I’d connect with you to ask how long you’d been on it before developing the allergy. I appreciate your sharing this with Donald, so I can get the information back to her. I feel so bad for her too, it sounds like the effects of the allergic reaction were very similar to yours.
Hang in there, and I’m curious to hear how OFEV is going for you although I haven’t made it through my emails or replies yet, so I think you’ve provided me an update since writing this. 🙂
Cheers,
Charlene.
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UPDATE:
On Saturday 9/8/18 I started taking 1 tablet of Esbriet 3 times per day crushed and inserted in my intestines via a J-Tube per my Pulmonologists directions. All seemed to go well for the week other than a little dizziness for about an hour after taking each dose and some nausea later in the day. My Zofran seemed to handle the nausea well. On Saturday 9/15/18 I increased the Esbriet to 2 crushed tablets 3 times per day. I still got the nausea and dizziness problems.
Then, at about 12:30AM Monday morning 9/12/18, I woke up with some bad stomach acid burning and I took a Tums and some water which helped me get back to sleep eventually. At about 4:AM, I woke up with extreme stomach acid burning. Again, I tried more Tums and a Gas-X and even a honey laced cough drop to try to ease the burning. About ½ hour later, I was sick and threw up a lot of real red blood. The throwing up blood continued about every ½ hour until I got up at 6AM. I went to the Hospital ER and they started giving me intervenors anti-nausea and other medicine to stop the throwing up of blood. This lasted until late afternoon and they admitted me for observation for the night.
Tuesday, they kept up the IV medicines and observation. Late Tuesday, they decided that they were going to hold me overnight and run an esophagoscopy to see where the blood had come from.On Wednesday Morning they were able to do the esophagoscopy and said It appears that the stomach acid had burned a “ring circle ulcer” at the connection of the esophagus and the stomach but had now healed over so they didn’t have to cauterize it. They wanted to keep me overnight again to slowly start my normal 12-hour night food feeding I get through my intestines.
Thursday morning, they said the gradual reintroduction of my feeding tube feed was back up to speed, so they would release me at about 10AM. At about 11AM they came in and told me they had my discharge papers ready and I could start getting dressed to go home. When I opened my hospital gown and looked under the bandage holding my feeding tube in place, I noticed that sometime during the night, evidently the night nurse had pulled my feeding tube about 6 -7inches out my belly. He had been giving me my nighttime medications and reconnecting it to the tube line to my feeding bag and evidently pulled on it. I was unable to push it back in as it had dried out and wouldn’t slide back in. I contacted the nurse who called in a gastroenterologist to look at it. He too was unable to get it to slide back in and requested x-rays to see if it had pulled out of my intestine hole. The general x-rays showed the tube was almost out of the intestine. The doctor said they would have to try to put me under an x-ray scope and run a wire through the tube to try to guide a new J-Tube back into the intestine but if the old tube channel had closed too much, they would have to surgically open my belly again and redo the tube emplacement. They did the wire and tube relocation without putting me under any anesthesia, so it wouldn’t take a long recovery time to come out of the procedure. It hurt a bit and I kind of watched them do it on their big video screen.
After the procedure, I was able to get dressed and finish the check out at about 5: PM. I don’t like the new tube, but it is held in by a small inflatable bulb under the belly mussel layer and a ring on top of the belly that holds it in from accidently pulling out easily.
I have not been taking anymore Esbriet since I went in the hospital. I did see a dietitian while in the hospital. She said I was way underweight, and I have not been getting all the nourishment I need and should almost double the amount of food I get through the tube. That might mean I will have to be on the feeding tube 24hours per day rather than just 12hours at night. I take it at the fastest feed rate I can tolerate at night and that takes about 12hrs to run the 4 cans of food I have been taking. I am supposed to see my Family Doctor this Tuesday and the Pulmonologist on Wednesday for instructions on the food supply and restarting Esbriet.
Well, that’s my story on starting to take Esbriet and I’m sticking to it. Sorry to make this such a long post.
Ray King
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Hi Ray,
Great to hear from you as always, although I wish your experience with Esbriet wasn’t so unpleasant by the sounds of things! Throwing up blood is terrifying, and I’m so sorry this happened for you. Although I’m sorry you had to go to the ER, I’m also really glad you did so that they could get the symptoms under control for you. How have you been feeling since being discharged from the hospital? I can’t believe you had such crummy luck there, including the removal of your tube. I’m glad it is back in place, and hopefully there aren’t any further issues with that; we don’t need a ton of other issues on top of all the ones IPF/PF causes…
How did the appointments go with the pulmonologist about restarting Esbriet? Curious to hear as I know it is important for the management of IPF/PF but I sure would hope they have an idea for preventing the stomach acid/bleeding issues from ever happened again for you.
Hope you’re starting to feel better now!
Take care,
Charlene.
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Oh Ray I am so sorry your going through all of this. I really hope that things start to get a little better for you. A lot better would be awesome but not sure how possible that is.
Did they think the Esbriet was the cause of the ulcer doing what it did?
Good luck at your next doctors appointment.
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Hi Paula,
Thanks for the good wishes.
The hospital doctor said he didn’t see anything in Esbriet that would have caused the bleeding, but I didn’t think much of his opinions on anything. He is what they call a “Roving Doctor” and goes to different hospitals around the US and fills in for a couple of months when he is needed. Idaho doesn’t have enough doctors to fill their needs. When he would talk to me at the hospital all he would do is brag about his life and never did get to what might make me more comfortable. He seemed to not know anything about IPF or the drugs for it. After I told him I was taking Esbriet, he said he didn’t know what that was and never had heard of it. It wasn’t until he came back later that day that he said that it didn’t appear to him that there was anything in it that would have caused it. I don’t think he had looked at the side effects of Esbriet on the Internet. One of the side effects is Gastroesophageal reflux disease (GERD). That is caused from acid reflux. Although it wasn’t right in the Esophagus, the acid had caused the ring ulcer right where the esophagus connects to the stomach. The Gastroenterologist said the ulcer ring was in a circle around that joint opening. Since I don’t have a Hiatal valve between the stomach and esophagus anymore, the stomach acid leeks out of the stomach and burns when it hits the esophagus. I take loads of medicines to help cut down on that stomach acid but sometimes it still occurs. I’m going to talk to the Pulmonologist about what he wants me to do about taking the Esbriet again. He will probably want me to start with one three times per day again. We’ll see next Thursday what he says.
Thanks again for your concern and sympathy. You have enough problems of your own to think about though.
Ray
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Hi Ray,
I think you’re onto something about not really taking the doctors words at face value for two reasons:
1) the doctor doesn’t really sound invested in your needs if he was just bragging about himself. Also, if he goes around to different hospitals filling in, I’m not entirely convinced he would know much about our unique needs as PF/IPF patients. Like you mentioned, he said he wasn’t even familiar with Esbriet.
2) What else would have caused the stomach ulcer and throwing up blood? If you’ve never had it before, and then after an increased dose of a difficult medication 1 week after starting it caused you to throw up blood, I’d probably guess that this was indeed the source. Of course I’m not a doctor, but that is my guess ..
Thinking of you and hoping your appointments go well this week!
Charlene.
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Hi Ray
While I have my own issues I am dealing with, we are all connected by many connecting fibers. I had/have GERD before I was even diagnosed with IPF. I was more concerned that the Esbriet could have caused the bleeding.
While I am not making excuses for the doctor, sadly many doctors do not have a clue about what IPF is much less the limited number of medications one can take to try an slow down the process. Sad but not uncommon.
I see my pulmonologist this Tues. I have been keeping a record of what my O2 levels are during various activities. Today I took a short walk. Came back home checked my numbers and I came in at a lovely 75. 3 minutes later I was up to 89. Should be interesting to see what he does.
At any rate. As I am sure you have noticed the group here, even though we are all dealing with our issues, we are there for each other. If nothing else, we understand what others are going through for the vast majority of issues. And many times it helps knowing others are dealing with some of the same stuff. If that makes any sense.
Please let me know how you make out at the doctors.
Paula
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Hi Paula,
I love the image you painted about us all being connected by the fibers of this disease. A beautiful image, thank you and I couldn’t agree more 🙂
I am going to keep an eye open for symptoms of GERD as I’ve never had this (I don’t think, I wouldn’t know what the symptoms are) but I know so many patients living with IPF/PF experience this. Maybe it is only a matter of time until I do as well? Not sure..
You’re right about the doctors as well, it is sad how many people don’t know about IPF and the limited treatment options available to us. I’ve had a doctor’s face go pale and stiff when I mentioned I had IPF and they realize it is a fatal lung disease for someone my age. It can be pretty frustrating!
How did your appointment go with your pulmonologist, and sharing your O2 readings with him/her? Hopefully all went well and that you are still feeling alright.
Take care and thanks as always for writing!
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Hi Charlene,
Saw the doctor Tuesday. He asked how I was feeling and I told him not too good. I gave him the O2 list. He talked about the pulmonary function and I mentioned how the nurse was so concerned about one of the numbers that she did the test twice and said she was going to call you that day. I told him that I appreciated she broke protocal by what she found during the test.
He told me the number she was referring to was my diffusion rate. The last time it was done was at 40 not great but not alarming either. This time it was 32. He said he could hear a lot of crackling in my lungs. I told him about the low grade temp I ran for over 2 weeks and the massive nose bleeds I was getting while selling our old house. I also said that I felt that the stress made my lung situation worse. He said I need to not let the stress get to me. lol easier said than done, which he knows.
So he said it was time to put me on oxygen. He also said he was going to put me on prednisone for like 10 days to help with the coughing and he put me on an antibiotic in case I have a infection brewing.
So then I went to take my walking test. With the nurse by my side, connected to the monitor my O2 level dropped to 84 (in the office when I first got in the exam room it would not go above 87 which was unusual for me as my number would usually rebound to 92-93 within a minute or two) and my heart rate jumped to 179. I told her I was getting light headed.
They then had me use the O2 during the walk at 2 liters. Well my heart rate dropped to the low 90s but my O2 level did not get above 87. So then they tried me on 3 liters. Heart rate was around 88 and my O2 level was 93. My doctor then came up to me and said 3 liters it is.
They just brought the equipment yesterday. When the guy got here I cried. Besides the concentrator (gosh I can’t spell for crap today) they gave me a portable that comes with its own wheeled thing to push it around. Thankfully today, when the nurse came and tested me I qualified for the portable concentrator. She gave me 2 small takes that have the pulse thing on it until the concentrator one gets here. I just have to fill it with a thing she gave me. At least its smaller than that other thing. I asked about the smaller light weight ones and she said they no longer get those as they break very easily.
So that is my story. I did go out today and it was not as bad as I thought it would be. I checked my O2 level last night and I came in at 94. Today when she tested me I actually hit 98. The numbness in my toes is down greatly. And I was not coughing as much when I woke up, but that could be due to the new meds.
Glad you liked my description of all of us here being connected by fibers of this disease. As I said before, family and friends try to understand, and on some issues they do but for the most part they don’t get it. Like when they can’t understand why your really in no rush to start using O2 all the time.
I hope Ray starts getting some relief soon.
GERD bites. major heartburn.
Hope all is going well up your way. Temps are cooling down here. I suspect the temps are doing the same up there.
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Hi Paula,
Great to hear from you, and thanks for such a thorough update following your doctor’s appointment. Glad you were able to let them know about everything going on for you, and although it is an adjustment needing oxygen (I remember that feeling well, my friend), I am hopeful it will help you feel better! How is the management of the oxygen going at home for you? Are you on it 24/7, just for exertion or sleep? It is a lot to get used to, and I hope your oxygen provider is readily available for your questions and/or is compassionate to how hard it is starting supplemental oxygen.
Not letting the stress of a fatal lung disease, plus other things in our life get to us is definitely easier said than done. Like you, I also know stress plays a role in our physical health and my Rhuematologist actually explained just how much this is true. I had no idea that stress could activate pain receptors in our nerve endings causing widespread pain. When he told me this, I thought it was a bit bogus but then his treatment of my nerve pain worked beautifully and it has subsided. One of the instructions for me to keep it away was to avoid stressful situations, or let go of mental stress….so I am trying, but as you said way easier said than done!
Sorry the walk test didn’t go so well, and am glad to hear that the doctor put you on a broad spectrum antibiotic in case of an infection. Hopefully the prednisone is only short-term, I know you dislike that drug!
Which portable oxygen concentrator did they/are they going to provide you with? Glad going out wasn’t too bad, and happy to hear your sats remained in the 90s. Overall, this should help you feel a bit better but I know it isn’t easy adjusting to oxygen. Write anytime, this adjustment was really hard for me too!
Hang in there Paula, thinking of you! I also hope Ray starts to feel better soon too!
Hugs,
Charlene.
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Hi Charlene,
I’m finally just getting around to commenting on your last post to me. Yes, I really think that roving doctor I had while in the hospital was a nut and didn’t really know or care what was going on. When I was discharged from the hospital, I ordered a prescription from Walgreens that the hospital doctor had requested me to order and take for 30 days. It was for a special Pantoprazole (Protonix) in packet power form. After about 4 days, I called Walgreens to see if the RX was filled yet. They said it was a special order and they didn’t normally stock it and would special order it. They said they did have it in a tablet form, but they would have to contact the doctor to see if I could crush the pill and use that. A couple of days later, they called me and said the hospital doctor stated that it had to be in the packet, power form. Walgreens said that maybe another pharmacy in town might have the packets. We went to a couple of other pharmacies and they all said it wasn’t a stock item and would have to order it. Since we get most of our RXs at Walgreens, we told Walgreens to order it. Many days later, we checked with Walgreens again and they said it was in, but our co-pay would be $427 so we should tell that to the Hospital doctor to see what he would say for us to do. Well, we tried calling him and were told he was out of town and it would be a week or more before they could contact him. Since it was almost time for my Pulmonologists appointment, I decided to wait to ask him what to do.
I did finally get to see the Pulmonologist on Wednesday. He did say he would have his nurse try to see if maybe we could get something else that was equal to the Pantoprazole (Protonix) powder packet.
He said he still wants me to restart taking the Esbriet after about a 30-day waiting period for the ulcer to completely heal. He said that on my next appointment, about the end of October, he would be starting me out on Esbriet 1 time a day for a while. If all goes well, then go to 2 tablets 1 time per day and then 3 one time per day. Then I start the cycle of 2 tablets 1 time per day etc., etc. Then after a long time have me worked up to the 3, 3 times a day. If I never can work up to 3, 3 times per day, he thinks that maybe I can still get some benefit from whatever I can work up to. So, it sounds like it might be late next Spring before I have worked up to the normal 9 tablets of Esbriet. He didn’t mention ever taking me off Esbriet and going to OFEV. He didn’t run any PIF tests this time. He said that they would be running those tests on me 2 times per year at this point.
Thursday, I had an appointment with my regular family doctor to fill him on what has been happening to me since my last visit. I told him about the special packet for Pantoprazole (Protonix) that the hospital doctor wanted me to take and he said he didn’t know why the hospital doctor wanted me to take that when I was already on omeprazole which was a Generic for it and it had been working for me ok before. I think it was just another goof for the hospital doctor. I don’t think he had even viewed what medications I had been taking because that was on the drug list we had given to the hospital when I was admitted to the surgery floor. I didn’t like that doctor at all. I did tell my family doctor that I had read the side effects of taking Esbriet and that it can cause GERD which might have caused the ulcer since I had been getting serious burning at night from the acid reflux before it started bleeding. He said he was unsure why Esbriet might have caused my ulcer as I am taking it through my intestines and it that bypasses my stomach. I don’t understand how the body responds to medications so, I don’t know. It was just quite a coincidence that I didn’t have that much pain from occasional acid reflux until I started taking the Esbriet.
The Hospitals Dietitian had written a report that I needed to increase my tube feeding to almost double than what I was previously taking because I was underweight and had a low protein indication. My family doctor said that my weight wasn’t that far off from what I had been weighing and that I had seemed to be gaining a little weight since I started seeing him after the first surgery in 2011. He said my system wouldn’t be able to handle the higher feeding rate the dietitian said I should be receiving through the tube, so that was out. He said I could probably supplement to get more protein if I would try to drink a high protein shake maybe once per day if I could handle it. He recommended a good tasting vanilla or strawberry shake from COSTCO for me to buy and try. He had me come back in a couple of weeks to see how I am doing then.
That ends what I have been doing since my last post to you. I hope you enjoyed your Nova Scotia vacation and got a little rest and recuperation and it brightened up your life a little? It did seem like you intimated you were under quite a bit of stress. I was happy to hear the hurricane didn’t seem to get that far north.
Hope to hear from you again if you get time although I know you are busy with everything.
Ray
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