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Best way to take Esbriet
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Charlene,
Thank you for the “welcome”. I have been reading Pulmonary Fibrosis News for some time now. I am surprised I never registered. I have been Esbriet for about a year now. I feel I have been stable, but I go in next month for my annual testing, so I’ll thankfully have some data to hopefully back that claim up. during my last visit with my pulmonary doctor, who is quire “blunt”, we were in a discussion of the benefits of Esbriet. I had mentioned I was aware of many people who felt for a “10 percent” benefit, it wasn’t worth the side effects. She then told me something that said “everything” for me. She stated all her IPF patients are on Esbriet. several patients now going on 3 years of taking Esbriet. She said everyone of them has been stable and remains stable. She added, and you know from your studies that statistically, half of them should be dead. So that is a pretty good testimonial for me.
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Hi Tom,
You’re most welcome, and I am so glad you chose to join the forums after following Pulmonary Fibrosis News. Your input will definitely be of value to the many folks who frequent the forums, I have no doubt 🙂
Goodluck with your upcoming appointment and pulmonary testing. Depending on how you feel after it, I’d love to hear how it goes, including a comparison to where you were last year at this time and now, having been on Esbriet for about a year. I have so much hope for this drug, although I know the side effects can sometimes be unpleasant for patients. I also have hope for stem cell therapy and the idea that it may be transformative in the treatment of this disease in the future, if they can successfully figure out a way to regenerate lung tissue using stem cells.
I appreciate hearing what your Doctor shared, and I can imagine that was an encouraging testimonial for you for sure! I hope you continue to be and feel stable, and wishing you all the best at your upcoming appointment.
Take care,
Charlene
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Hi Charlene,
I walk only outside. I take a fairly steep climb uphill which takes about 5 minutes past my home, downhill and then back uphill again. Total time is about 45 minutes. I am not out of breath and don’t stop during the walk. I walk in all temperatures, except if it is very hot and humid. At this point I do not struggle, probably because I was diagnosed very early in the disease.
I am also making progress on weight loss. Before starting a modified Fuhrman diet I was 184 (Feb 24). This morning I weighed 179.
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Wow, good for you Alfred! That is amazing not only that you’re able to walk 45 minutes without feeling short of breath, but also that you can walk up and down hills. Do you find heat and humidity bothers you, or you just don’t prefer to walk in it? I apologize if I have already asked you this…
I have never heard of the Fuhrman diet, but I am going to look into it. This is just something you chose to start on your own?
So many people have been talking about the ‘fad’ Ketogenic diet (I think it feels like a fad anyways) as it is a quick way to lose weight, which is ideal but my fear is the sustainability of this diet. Since your body goes into ketosis, if you stray off the specific diet plan, your body falls out of it and then the high-fat intake you are eating that your body uses for energy in ketosis is then not being used for energy and is stored as fat within your body. I like the idea of it, and I do know many people who have had a rapid weight loss on it, although I worry about sustainability and particularly, if this is a healthy diet for people who have health issues. My goal isn’t to lose weight right now necessarily, nor has it been advised for me to do so right now, but I am always looking at ways to eat healthier and maintain a healthy weight. That being said, I don’t think the Ketogenic diet is for me, so I might look at the one you suggested and see if I could implement that into my day.
Thanks for sharing and I hope you are doing well.
Cheers,
Charlene
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I am currently taking the 801 dosage of Esbriet 3 times a day. This is so much better than the 9 pills per day. No additional side effects. I take it 4 to 5 hours a part with meals. Has anyone taking the Esbriet any other way than this? What it has done for me remains unknown. I am stable even though my PFT shows a small decrease at the last reading.
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Hi Patricia,
Welcome to the PF forums and thank you so much for contributing to this thread. We’re all learning a lot from one another about Esbriet and the different ways patients are taking it.
Did you start taking it with the 801 dose tablet? I know some patients were taking a lower dose but more often throughout the day, but I think most were/are taking the upto 9 tablets a day (3 with each meal I believe). I am not on Esbriet, so unfortunately I can’t comment on other ways that it can be taken, however someone might be able to speak to that here on the forum. I am on OFEV but I know there have been a lot of people who have figured out ways to manage their side effects of Esbriet, or better yet: not experience any at all 🙂
How long have you been taking it Patricia? I am always so interested in my PFTs when I go in, so I can compare that whether or not my feeling stable is actually reflected in the numbers of my tests.
I look forward to getting to know you a bit more through the use of the PF forums. Thanks again for your comments.
Sincerely,
Charlene
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I am thankful that you all are here in this support group. I am supposed to begin taking Esbriet soon. I hope that i will be able to tolerate it. Thank you all for the comments. I will take everything you have said into consideration when i begin this medicine. My pulmonologist has gone over the side effects and wants to start me on a therapy.
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Hi Roger,
Welcome to the PF forums, I’m glad you’ve joined us. This is a very wonderful group of people who have lots of personal experiences, tips, tricks and advice to share based on their own journey with this disease. Please feel free to ask as many questions as you’d like – likely one of us have been there! I am so glad to hear that this thread about Esbriet has been helpful for you.
Please let us know how you make out when you start this new drug, and I will keep my fingers crossed that you do not experience any unpleasant side effects with it.
Take good care,
Charlene
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Hi again, Charlotte,
Thank you for your kind words. It is hard losing all your siblings. I was a late in life baby and my eldest brother was 24 and was married with a baby when I was born. The youngest was 16. I was unexpected, to say the least. 😉 When I was young my brothers were more like uncles but when I got older we became closer. I really miss them.
My heart attacks were 15 years and six years ago. Mine are somewhat atypical, I don’t get crushing pain. I get an odd fluttering sensation in my upper chest and extreme fatigue. My youngest brother had a heart attack with no pain at all, he just passed out. After finding out I’d had a heart attack, he went to his doctor and his heart attack was diagnosed and he had a bypass several weeks later.
I will certainly let you know what the doctor says about the celiac disease. That diet is just so hard to follow! It takes such a small amount of gluten to undo all the good following the diet has done. I don’t really feel better on the celiac diet. I am anemic due to celiac but take iron for that. I would be more motivated to be compliant on the diet if it made a difference.
Regarding the Vitamin D, my doctor advised me to take Vitamin D supplements. She thought it was a good idea, living in Western Washington state with so much rain. And now that I take Esbriet and must use SPF 50 sunscreen and avoid the sun as much as possible, I am sure it is even more important now.
I am so sorry to hear about your accident and subsequent pain. Have you had x-rays done? Did your doctor prescribe physical therapy?
I absolutely love your article about dogs! It is so very true, mine give my life purpose. I live alone and they are the reason I get out of bed every day. And they do try so hard to make us feel better when we are down. They make me laugh every single day. My life would be empty without them.
I had a good day today and hope you did, too. I enjoy your remarks and am glad I have found this forum.
Janis 🙂-
Hi Janis,
Thanks so much for responding, and being so willing to share more of your story with me and the other folks on the forums. I also have older brothers, who are quite a bit older than me … 7 and 10 years, and while we used to fight like cats and dogs when we were kids, we’ve grown quite close now. I’m still struggling a bit to help them understand how their “baby sister” has been diagnosed with a life-threatening illness. I’m working on it, and trying not to push the issue … maybe they understand, but just don’t express that understanding? Not sure, but I really value my relationship with them so I can only imagine how much you miss them. <3
Wow, thank you for sharing re: your heart attack and symptoms. The potential of having a cardiac event for me is high due to my pulmonary pressures, and I am always scared that they could go unnoticed as you mentioned your brother did. Did you know in the moment that you were having a heart attack? Symptoms like fluttering and fatigue are things I didn’t associate with heart attacks, how did you know this was one for you? I’m so glad you sought out medical attention sooner than later and were treated. I’m very thankful for this!
With regards to the celiac diet, I agree, it is one I think that is hard to follow. My Mom has this disease and went gluten free not that long ago, and she is always trying to convince me to try it but I don’t think it would be sustainable for me, so I don’t want to set myself up to fail. Any thoughts on the Ketogenic diet? Even though weight loss is not a goal for me right now, I always am looking for ways to eat better and I know people who have dropped a lot of weight suddenly on the keto diet, but I fear it is just a “fad diet” and I also can’t imagine it is healthy for you. This is another one that I think would be hard to sustain, since when you break ketosis, your body stores all the extra fat you’re taking in, as opposed to using it for energy like it should be. There is a diet that another member of this forum shared, that is also helpful for coronary heart diseases (CAD) so I might try that!
Thanks for your kind words about the accident and pain. Unfortunately, I am Canadian and we were seen in a US hospital that night which has racked up an extensive medical bill for myself and two friends in the accident with me. We are currently in personal injury litigation with a lawyer, and are pursuing a lawsuit agains the driver of the cab. It was really scary! Thankfully, I didn’t have any bone injuries to my legs which were kind of crushed in the back seat, but had pretty extensive muscle and soft tissue damage, including blood clots embedded in the muscles of my legs. I am still doing physical therapy for it, which is helpful but becomes difficult with my IPF symptoms. I’m hoping my pain subsides soon, although I’m unsure anymore which is IPF pain, accident pain or just general aches and pains…. ho hum!
I’m so glad you read my article! Yes, dogs are wonderful companions and I never knew how much I could love a “fur baby” until I got one 🙂
I have had a nice day as well thanks, just glad the weekend is coming up so I can spend some time resting and rejuvenating. I am also so glad you found these forums, and that we have connected. Thanks again for your wonderful comments.
Warmly,
Charlene
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Hi Charlene,
To answer your recent questions, I like to walk in all weather conditions except when it is raining or oppressively hot. On very hot days I may wait until evening when it cools down. Since starting Esbriet I will need to be more careful to cover up and use sunscreen.
As far as the Fuhrman diet, my cardiologist recommended that I read his book – The End of Heart Disease. Fuhrman makes a very sound case for eating a healthy diet to reverse the effects of the standard American diet (SAD). It makes a lot of sense even if you follow it less than 100%.
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Hi Shaw. I also was very nervous about starting the Esbriet since my Dr. had told me it would give some people stomach issues, and having to be careful to coverup with sun tan lotion on uncovered skin out in the sun. However, I was also bound and determined that I was going to take this medication as it was the only one recommended for my IPF. I was told that I had an advanced case so a transplant was not a possibility. SO, I needed the Esbriet. I went on the routine of building up tolerance and I have been very well with it. Yes, at times there was a bit of nausea at first, but I just took a rolaids or tums and it took care of it. I found that I needed to get quite a bit of food down before I took the first pill (I take 3 at each meal) so that it didn’t stick part way down and seem to stop all the rest of the food from going down. I also did try to take the pill with the moist food and not with water/juice or tea. That stopped the pills from sticking. I have actually had to take all 3 pills with a buttered bun or toast very close together when I was dumb enough to forget to take them. Boy that is stupid, but I have learned. I have been on it since June 1, 2017 and have had no real problems. I find I feel somewhat better and that I haven’t become worse so I feel it is doing it’s job. Good luck to you and best wishes. Joyce
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Hi Joyce,
Thank you so much for sharing all your tips and tricks about managing Esbriet! I know other forum members, including those who join us in the future will find your post helpful 🙂
I am glad to hear that you feel the medication is doing it’s job and that you feel somewhat better. I will pray this continues for you! Looking forward to connecting again.
Have a great day.
Charlene
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Hi Joyce,
I will be starting week 2 of Esbriet on Sunday. So far I have not experienced any problems. Thank you for posting your experience. For this I am encouraged about a smooth transition to 3 tablets/day.
Have you had liver function tests since you began taking Esbriet? Best of luck, I hope you continue to feel well.
Al
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Hi Everyone,
Does anyone know or have you experienced significant weight loss or gain on either of the anti-fibrotic medications, OFEV or Esbriet? I am on OFEV and am finding that this is the case for me (loss) and I wondered if anyone else experiences this? I am also very mindful of what I eat not only because I want it to be healthy (lean protein, veggies, whole grains, etc) but because the prednisone that I am on could cause rapid weight gain.
Looking forward to hearing back from you.
Cheers,
Charlene
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Update:
I have been taking Esbriet for 4 weeks now and no problems. My second months prescription arrived a few days back and I was surprised that it was (90) 801 mg pills. I checked with the Esbriet nurse, my pharmacy and my doctor and no one knew who made the decision for me to change to the larger brown pills. To my surprise, since I was tolerating (9) 267 mg pills a day for over a week, they all encouraged me to make the change. It’s now been over a week with the larger pills and my good luck has continued. I have to admit (3) pills a day is much more convenient. I encourage anyone that is still on (9) pills – and not having any problems – consider the change.
Shaw
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Hi Shaw,
Thank you so much for sharing, and I am thrilled to hear that you’re still doing well with the Esbriet, even with the change in tablet dose. Have you found out who ordered this change yet? I just wonder if this is information other patients might need or want to know, so they know who to ask about a change in their pills? Interesting that your Doctor, nurse or pharmacist didn’t order the change.
I can imagine how much more convenient 3 pills are vs. 9 and I am so glad you’re tolerating it will. I will continue to keep my fingers crossed that your good luck continues 🙂
Cheers,
Charlene.
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Hi Charlene,
One of the Esbriet side effects is loss of appetite which would generally lead to weight loss. I was on prednisone for months during my chemo. At first I lost weight then gained. At the end I was about 190. I went down to 184 a few weeks after. Since I started following the Fuhrman recommendations on Feb 24 I’ve lost 6 lbs. I would like to get down to 170.
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Hi Al,
Thanks so much for sharing your experience and again about the Fuhrman diet. I am going to look that up right now actually – a nice way to spend a Sunday morning 🙂 I like the premise of this diet as you have described, it sounds like it is more about being health-conscious as opposed to the sole goal of losing weight and I like that.
I am on OFEV but the side effect of loss of appetite is expected with this medication, similar to Esbriet. I suppose I have lost my appetite compared to before starting the drug, although I go on binges of wanting certain foods at times and I don’t like that. However generally, I eat less and I’ve really gotten into fresh juicing (I received a juicer for Christmas and love it) so replacing most meals with a fresh juice and small snack such as crackers & cheese, a hard boiled egg, etc. would definitely reduce my calorie intake. I guess after talking it out this makes sense. I’m just trying to give my body everything that it needs to remain as stable as possible for as long as possible.
Thanks again for sharing, and I’m going to go look in up the Fuhrman diet. Any specific website on this that you’ve found helpful? I can look at ordering the book, although I know it will take a couple of days to arrive.
Thanks Al.
Regards,
Charlene
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Hi Charlene,
You will find a wealth of information by a Google search on Dr. Joel Fuhrman.
I don’t know if you are an ebook fan, but for the past several years I have not purchased a hard cover book. Everything is either in iBooks or Kindle Amazon. I love this way of reading because it is so easy to search, bookmark, highlight and add personal notes. As all information on my phone and iPad is backed up to the cloud there is no worry about losing anything. Worst case if your device goes down, is lost or stolen – all information is easily restored to your device or a new device.
As were are running out of storage space it reduces clutter and makes it very easy to find a book you want to refer to at a later time.
Kind regards,
Al
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Hi Al,
Oh wonderful, I’ll do this – thanks for the advice! I did find some interesting information on the Fuhrman diet already, although I will happily read more so I’ll see what else I can find.
That is a good idea, I’ll take a look at getting the ebook version of the book you recommended. I used to enjoy loading books onto my iPad, but haven’t done it in awhile so I’ll do this, so as you say it is easy to pick up where you left off, bookmark sections, etc. Great idea, thanks for sharing!
Hope you are well. 🙂
Cheers,
Charlene
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Ramping up Esbriet is important. Three times per day. First week is 1 per dose, Second week is 2 per dose, then Third week 3 per dose. If you start at full dose (3 per dose) then you run the risk of side effects like diarrhea and I would strongly suggest NOT wearing a tight fitting belt whose buckle requires a Herculean effort to release.
I have been on Esbriet for 3 months and latest Pulmonary function tests show a stabilization of ILD progression. Hopefully this will buy time for getting a transplant green light. 4 years ago I had lung cancer and need to pass 5 years to be considered.
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Hi Jim,
Thank you so much for contributing your comments to this thread. I know others who read about the slow increase or gradual progression of Esbriet in future will find your comments helpful! Hopefully their physicians will reiterate the importance of gradually building up a tolerance to Esbriet through a weekly progression as you have outlined above.
I am thrilled to hear of your PFT results, and the stabilization of your disease progression. This is excellent news! Is this the first time you’ve seen a stabilization in your lung function since your diagnosis? I always find this so encouraging and know that others do as well who are hoping to see a stabilization in their function after starting an anti-fibrotic medication. I will keep my fingers crossed for you that this continues until you reach 5 years! If you get a moment, please check out Kim Frederickson’s columns about her initial transplant testing. She is a wonderful writer and is chronically her journey of seeking out a lung transplant. She was just approved to start the testing, despite not quite being at 5 years post breast cancer. We’re pretty excited for her!
Best wishes to you as always 🙂
Cheers,
Charlene
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Thanks to everyone for the good advice. I’m now on day 12 of esbriet and tolerating it well, thanks to the pointers I’ve picked up here. 2 pills with meals right now but I was given the 801s to start next week. Taking 3 at a time wasn’t real appealing. Fingers crossed I’ll tolerate those ok also.
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Let us know Mike, I’ll be sending good thoughts and prayers that the 801s go alright when you start them next week.
This has been one of my favourite threads on the forums (among many) as it is patient’s sharing their experience to patients who are new to Esbriet, and everyone has been so kind in generous in the tips and tricks they discovered. It is such a unique and special community I think! 🙂
Goodluck Mike. If you feel upto it, please let us know how it is going…
Warmly,
Charlene.
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Scott,
In response to your March 14th post. It appears we are both at about the same stage in IPF and very close in age. I am encouraged by the length of time many of the people on the forum are living with the diagnosis as opposed by the 2-3 year life span that is found on the internet. It’s such a shame to read about young people who have been diagnosed and what they will go through.
In my case I don’t feel sick and would not know I have the condition apart from a fluke diagnosis as well. Many of the progressive diseases move more slowly in older individuals. I had lunch today with a good friend who lives about a mile from me. He joined this forum a while back, was diagnosed with IPF about 6 years ago. He gets around as best as he can, wheeling an oxygen tank. Being that this is such a rare disease it is quite remarkable that the two of us have it. His was most likely brought on my smoking and work he did at ground zero after the 911 attack. Fortunately for him his treatment is almost entirely covered by the fund set up for 1st responders. We both live in North Jersey about 12 miles directly west of the Empire State Building.
Were do you live? Any idea what may have been a possible cause for your condition. For me it is a complete mystery. No one in my US family or in my Australian family has this.
I wish you many years of productive life. If you would like to converse via email I would certainly be open to.
Kind regards,
Al
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Hi Al,
Great to hear from you as always – thanks for contributing to this thread 🙂
I agree with you, I find it very inspiring to hear people’s stories on this forum and how long they have been living with this disease. It is a good reminder for me that the 2-5 year prognosis/survival expectancy is just a number and that it can be surpassed by people. That terrified me when I was first diagnosis, and now I am not as scared because there are lots of people on here living well with IPF.
I hope you and Scott are able to connect Al and sending best wishes to you both!
Warmly,
Charlene.
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Have not felt this good in more than a year. I’m 2 days from completing a 2-week regime of descending Prednisone for the hives condition that started about 3 weeks ago.
The only difference to the medications/supplements that I’m taking is the increased amount of vitamin D3. Together with a bone health supplement, a mult-vitamin and most recently liquid vitamin D3. Daily total is 5,500 IU. My last blood test showed 29 ng/mL.
Ideal target is 50 ng/mL. On my last Cardiologist visit (4-12-18) he added 3,000 IU vitamin D3 in a liquid form to my supplements. I can’t say this as an absolute, but I feel that the increase in daily D3 is making the difference. A level of 5,000 IU should bring my blood level up to about 50 ng/mL.
I came back back from a vigorous walk up and down hills for a total of about 40 minutes. I experienced no shortness of breath whatsoever and didn’t feel fatigued at the conclusion. Earlier today I did some light yard work.
Does anyone else have similar experience with Vitamin D3?
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Hi Al,
Thanks for sharing, and I sincerely hope that you continue to feel so well. It is always encouraging to hear of others doing so well, so I appreciate your posts very much 🙂
I have been waiting for my prescription vitamin D supplement to make a difference to how I am feeling overall. I’m not sure if the vitamin D that I am on is the same as D3, is there a difference do you know? I was given a vitamin D supplement in February, to take for 3 months and it is 50,000 IU. I take it once per week and can’t say that I am noticing a huge difference, although I hope it starts to happen soon as everyone says I’ll feel better taking a vitamin D supplement. Do you take a supplement on the regular, and then just recently it was increased?
Sounds like you had a great day, and that your disease still isn’t impacting your physical abilities too much! I will pray this continues for you for a long time…. keep inspiring us. Thanks for sharing Al!
Warmly,
Charlene.
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I have been taking Esbriet for 2 years and had problems in the beginning with heartburns. I am taking 9 tablets a day and found that if I eat some protein before taking my tablets and some protein afterwards, I am doing fine. I eat a piece of cheese with a cracker before and after and for me that works. This may not work for everybody, but may be worth a try.
Regards – Rune
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Hi Rune,
It is so nice to hear from you!
Thank you for sharing this tip with us, you’re totally right – it is worth a try for someone who may be struggling to take Esbriet, every piece of advice helps. 🙂
Warm regards,
Charlene.
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I took Esbriet for about 18 months. I always took it after a full meal. At first I had a little stomach discomfort that didn’t last very long. Eventually I only occasionally had a little heartburn that a little milk would immediately take away. The SUN was not my friend. Any skin not covered or protected with SPF 50 would burn and break out in a rash in a short time.
So while I was fortunate that I tolerated Esbriet well it wasn’t effective for me. Of course, I had just received via Fedex a refill from my speciality pharmacy when my doctor’s unsaid not to take it anymore. No sense enduring the side effects when I’m not benefiting. I hadn’t even opened the shipping package but the pharmacy won’t let me return it. It’s policy.
Bottom line I have an unopened bottle of very expensive Esbriet (30 day supply, 270 capsules) that will go to waste. If anyone wants them, let me know.
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Hi Christine,
Thank you so much for contributing to this thread and sharing your experience of taking Esbriet. I know this particular topic has been very helpful to others, so I am sure everyone is appreciative of you taking the time to share your experience.
I am not on Esbriet but instead take OFEV and have been told to watch out for sun exposure as well. I am a bit anxious about being at my cottage this weekend and on the beach, which is where I so desperately want to be to soothe my soul. I will be sure to apply lots of sunscreen though, and I do hope you didn’t learn about the burn and rashes that come from sun exposure on Esbriet the hard way.
Did the doctor say why it wasn’t helping you? Was the progression of you disease still occurring rapidly? Im curious because it didn’t sound like you had a lot of side effects, and the drug won’t stop the disease progression but even slowly it a little is something I would consider a benefit. If you’re comfortable sharing please do so.
You are so very kind to offer your Esbriet to someone who might need it. If you’re okay with this, I may make a post about it on the main page so others can see it, even if they don’t open this thread? Someone may connect with you about this, and hopefully something can be sorted out.
Thanks again Christine and I look forward to continuing to get to know you through the forums even more. Wishing you well!
Regards,
Charlene.
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I’m fine with you posting that I have a new, unopened bottle of Esbriet (270 capsules) if anyone currently taking this would like it. I’m not trying to sell it, but I would love to give it anyone who could use it. I don’t know what people are paying for this but it is very expensive.
I just happen to be one of those for who does not help. I’ve been on oxygen just over 1 1/2 years and have gone from using 2 Liters when I walked, etc. to my current 8 liters at rest and 15 liters to walk, shower, etc. I still go out and maintain as much activity as possible, I just have to bring lots more O2 with me. It sucks but it’s better than giving up more quality of life than necessary.
If you don’t have one, be sure to get a good sun hat. I bought a Scala Women’s Cotton big brim hat with upf 50+ protection online and I love it. It comes in many colors. Hope you enjoy the beach. I am so looking forward to being in the sun!
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Hi Christine,
Thank you so much for getting back to me, and again, this is such a kind offer you’ve made to others regarding the Esbriet. I agree, it is a very expensive medication! If no one takes you up on the offer in our forum community, I’d love to ask a woman who is seen at my transplant clinic for IPF. I believe she is on Esbriet and I know finances are tough for her right now. I don’t know what her insurance pays for though as Canadian healthcare but if I could ask her, I’m sure she’d appreciate it.
Thanks for sharing your oxygen requirements… although I’m sorry it has changed so much in 1.5 years (from 2L to 8-15L). Kudos to you for remaining active and doing things as much as you can! I certainly can attest how it is not easy to lug oxygen around while doing errands. Just yesterday I was complaining about how tiring it is lifting either my tanks or my POC in and out of the car. Do you still drive while using your oxygen?
Thanks for the tip – I do need to get a new sunhat so I’ll look into the one you mentioned. It is supposed to feel like 45 degrees celsius here tomorrow so I don’t think I’ll be outside much, as much as I want to be! Stay cool but hope you do get a chance to enjoy the beach Christine.
Take care,
Charlene.
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If you have someone who can use the Esbriet I will be to mail it to them.
Yes, I still drive. I always have a full rack of D tanks (12) in the car. I have 3 of the carry bags for the tanks. I now have to bring 2 tanks into he grocery store if I’m doing a full shopping. I just hang them on the shopping cart. Fortunately I’m a pretty strong person.
It is actually very nice weather here (Connecticut) today. It’s 80F and not too humid. It’s forecast to get hotter and more humid the next couple of days. I’m going to sit outside for awhile.
Always happy to hear from you,
Christine
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Good Morning Christine,
Thank you so much, that is incredibly generous of you. I will ask her, she is part of our lung transplant support group and I know due to circumstance that finances are tough for her right now. I’m sure she would be very grateful. Our next group meeting is the week after next (July 10th) so I’ll be in touch after that! 🙂
Kudos to you for working out such a system with your oxygen that allows you to still do daily activities. I know it isn’t easy, but it just shows what we can still do despite our illness. Thank you for the inspiration. Do you have any of the backpack carry bags for the size D tanks? I cannot find one to purchase anywhere, not online or anywhere in store. My oxygen supplier says they get the occasional few, but don’t hold or reserve them for patients so it is a first come, first served basis and they go so fast. I feel like this would make my life so much easier but I have no idea where to find one, so just curious if you use them and find them helpful? If so, I’ll continue my searching.
Glad your weather has been nice and hope you got to enjoy sitting outside for a bit today. It is topping 45 degrees celsius here, so very hot with the humidity. Take care and enjoy your weekend Christine!
Kindest regards,
Charlene.
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Good morning Charlene.
I don’t have any backpacks for carrying the oxygen tanks. I don’t think it would be practical for me anyhow since I frequently need to have 2 tanks with me. Also it would be easier getting in the car with just the shoulder strap. I slip it off my shoulder and stand it on the floor next to my left leg while driving. You can find the backpacks online. More are available for the smaller C cylinders but they are also available for D cylinders. Hope you find one that works for you.
Regards,
Christine
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Hi Christine,
I hope you’ve had a wonderful weekend!
Thanks for letting me know re: the backpacks and how you best carry your tanks. I suppose if you carry two with you then you’re right, a backpack wouldn’t be super practical. I usually sit my oxygen tank on the passenger seat when I’m driving or set it on the floor as you mentioned. I’ll have to take another look at online options for oxygen cylinder backpacks. I had looked a few months back to no avail, but maybe I didn’t do a thorough job and should try again. I really think having one would be a good idea for me, and would be helpful specifically for my D-sized cylinder. Thanks again for sharing and hope you’re doing well.
Kind regards,
Charlene. -
I searched “Walmart oxygen D cylinder backpack” and the a result was a backpack from Roscoe Medical for US $29.95
There are other sites out there with backpacks. Hope this helps you find one.
Sincerely,
Christine
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Thank you Christine! Is this a US Walmart? I tried searching in Canada awhile back but never found one that I wanted. However, I did a search again and there is one I can order through Walmart which looks awesome although it is expensive. I can order it right to the Walmart store though so I will consider that! Thanks again for sharing 🙂
Hope you’re having a great day!
Charlene.
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Online Walmart. I don’t know where it’s shipped from, but any result I get would be in u.s. dollars. I assume when you search Wal-Mart online your responses would be in Canadian dollars. I was I just trying to find one for you.
Nice day here, but hot and fairly humid.
Regards,
Christine
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Thanks Christine, I’ll definitely try that search again and appreciate the time you took in sharing the information with me 🙂
Hope you’re enjoying your day!
Charlene.
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Hi, I’ve been on Esbriet since February. The first dose I noticed I was nauseated. But since then it has been much milder and by the end of the day, I am very fatigued. I don’t know whether it is just the IPF or the IPF and Esbriet. Plus of course, I’m in heart failure as well!
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Hi Bruce,
Thanks for joining the forums and contributing your experience(s) to this thread. I’ve really learnt a lot and benefited from hearing from others experiences of living with IPF.
So sorry to hear that you were nauseated when first starting Esbriet, this seems to be quite a common side effect. Glad to hear it has subsided a bit, although I can relate about how tiring and fatigued this disease can make you, especially at the end of a longer day. I am on OFEV, as opposed to Esbriet so I do suspect that much of your fatigue is coming from the IPF itself, as it can make us so tired. I hope you’re able to manage this unpleasant symptom alright.
So sorry to hear of the heart failure as well, is this due to your heart overworking to compensate? I know this can be “common” with iPF, but certainly not any less scary.
Hang in there, I am thinking of you!
Charlene.
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