Doug
Forum Replies Created
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Rebecca, I have Medicare as my primary insurance and Tricare as a secondary provider; Tricare is a benefit for being retired military. I don’t know if the Tricare is involved in payment or not. My cost for 30 Esbriet is $24.00 a month. I was wrong about Esbriet being generic, but it is in the process of becoming available as a generic.
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Medicare pays for Esbriet, at least in my case. Also, I just read it is now out in generic form.
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When it was time for me to be placed on O2 my Pulmonologist’s office gave me a list of providers. I would think your Pulmonologist’s office would have the names.
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Marj, I don’t know what advice I can give you living in the UK—I was first placed on O2 after my pulmonologist had me do an O2 check while I slept. He found, which is very common in people with IPF at some stage, that while asleep my O2 went well below 88%. When you sleep breathing becomes quite shallow at time. That is why they prescribe a continuous O2 machine, as shallow breathing will not always be picked up by a pulse machine. As a result I was furnished a home O2 continuous machine I used while sleeping. My O2 provider also furnished me with a portable Simply Go Mini which I didn’t use at first, but after awhile used it when I was active outside the house.
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As far as I know we humans are the only creature that can make the present worse by focusing on what may happen in the future or what happened in the past. While it certainly is easier said than done, I focus on today and the very near future and make it the best I can. I don’t know how much longer I have as I am on high levels of O2 and very limited to any kind of physical activity, but I try to make the best of each day . I do hope for advancements in treatment for the future. In any case I have confidence by docs will minimize my suffering when the end comes. Aphorisms help me. “When the going gets tough the tough get going.” “If I get knocked done I’ll get back up.”
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Responding to Phi–Your didn’t mention whether or not if your on O2 and if so how mucht. There is no way to tell how long you will live with this disease at your point with PF. Obviously the worse your symptoms the shorter you life expectancy. Make the best of today! My history consists of an x-ray in 5/13 showing “parenchymal scaring.” As symptoms and testing progressed a pulmonologist gave a diagnosis of fibrosis of the lung in 2/17. A lung biopsy in 6/19/17 showed IPF of the UIP type. I was started on Oxygen in 8/18 after a sleep O2 level check. At first I rarely used O2 other than sleep. Then the level would be based on my level of activity-I’ve always been an active person in good health. Unfortunately I have progressed through portable Oxygen concentrators to E tanks as I need 8-10 lpm for any kind of activity; I often need to stop and take several breaths before pressing on. I still use the large concentrator at home that goes to the 10lpm continuous level. I don’t use it at the 10 level unless I’m doing something physical and even then I tire rapidly and need a little rest. In the last 6 month I have taken my last airplane flight and played my last round of golf. DON’t put things you want to do off! Meds wise I started on Ofev in 7/17 and switched to Esbriet a few months later due to side effects. I still have some side effects with Esbriet but have continued on the full dose to this date.
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A couple of things to know. 1. The air pressure in an airplane is set and 8,000 feet so you may need O2 on the plane but not in your home area. 2. The airlines require at least 1.5 times the flight time in battery life for any flight. You would also need to consider the time rushing around the airport before and after the flight as you may need oxygen then. On my last two flights I was wheelchaired to the plane and to the baggage section as the walking was just too much.
I can no longer fly as I’m now on tanks; I recommend you fly and vacation as much as you can as you never know how long you can use a concentrator as you can’t fly with tanks. The advantage of the Simply Go, is that it can be plugged in and used continuously so it would work for sleeping. If you google batteries you will find numerous source for the Simply Go batteries. They sure aren’t cheap, but that’s the way it is. Your provider may rent batteries and I’d look into that possibility. Some airlines have 110v, but on the airline I flew on didn’t produce enough power to run/charge my portable concentrator.
Check on the airlines web site as they may have forms to fill out to use your machine.
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88% and below. You should take a six minute walk test and do a sleep test to get the best info. I first was put on a large concentrator as a sleep test showed I dropped into the low 80s while asleep. (While asleep you should be on continuous flow and not pulse) I didn’t need to use the portable concentrator unless I was involved in strenuous activity. I’m surprised you MD didn’t order a Pulmonary Function Test and a six minute walk test.
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The pulse machines do require a certain level of inhaling and exhaling to work. I don’t think that is much of an issue for most people while awake. Continuous flow is recommended while sleeping, if necessary, as when asleep breathing may become to shallow for pulse machines to work. Continuous machines run down batteries much quicker and that is why portables tend to be pulse only. I’m on tanks now as portable concentrators are no longer sufficient for me. The regulator I use on my tanks only has continuous flow. I’m not sure, but I don’t think any pulse machine goes above 9lpm.
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I have been happy with the Respironics machines furnished by my Medicare approved O2 provider. I started with the Simply Go Mini and the Everflo continuous concentrator for night. As my disease has progressed I am now on E tanks and the M10600 Continuous flow that goes up to 10lpm continuous. I guess my next step is the big large tanks; I sure hope is not for a long time. I would hope you don’t have to buy, but if you do look at the available lpm available as they can vary. Most our 5 or 6 lpm while a few go even higher. I wouldn’t consider tanks unless flying and long car trips are no longer and option.
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I took my last and final airplane flight last December; it was just too difficult and frustrating a process to continue anymore. It was a 5 hour flight form Honolulu to our home area in Sacramento. We have a couple of time shares and during our retirement years have flown numerous times going to timeshares and cruise ports. Once I needed O2 my provider issued me a Simply Go Mini (SGM), which I mainly used in a backpack which I loved, and a large continuous flow home use machine. When we flew I used my SGM and a rented Simply Go (SG) which I needed at night; the mini does not have continuous flow but the SG does. As is common this damnable IPF progressed to the point that the limit of 5lpm pulse of the SGM was no longer sufficient for most of my activities. My Medicare assigned O2 provider would have put me on O2 tanks if I informed them the SGM was no longer sufficient. After a lot of contemplation and research I purchased a Caire Eclipse 5 that goes up to a 9lpm pulse and 3lmp continuous. It hurt financially but was worth it, though I have had some issues with the 5. As a result I would take both machines when I would fly. To fly any distance at all required I by two extra SGM extended life batteries and one Eclipse 5 extra battery. Costs were close to $1,000. I would use the SGM while on the plane as 5lpm would keep my O2 in the 90s as I wasn’t active. I would place the Eclipse 5 in the overhead bin. The main problem was getting to the airport, checking in a waiting at the gate before getting on the plane. It was worse was we arrived where we were going as the distance from the gate to baggage was considerable. Getting to the rental car was much fun either. This last flight I was wheel chaired from check in to the gate and once there, wheel chaired to baggage. This last flight was direct but still quite difficult though I’m glad we did it. (When we had flights where there was a change of planes it was quite difficult.) Not too long after the December flight I switched to tanks. Some other time I’ll share my experience and recommendations about taking long car trips.
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You have a real tough decision. I was diagnosed with IPF and later after a biopsy in June 2017 the UIP type. I started on Ofev. The grastro side effects were too bothersome to continue so I switched to Esbriet. I have side effects but I have decided they are worth it considering the medication may be helpful. The problem is you have no way of telling if the medication is helping as you don’t know what the progression would be without the medication. I only used O2 rarely at first when I started in 2018. I am now on it constantly and am limited to what I can do, but I still walk with some breathing issues using 8 lpm continuous using a 3000 psi tank. I have no way of knowing what my condition would be if I had not started the medication.
My recommendation is to start the Ofev and see what are the side effects, if any. You may be lucky and not have any. If you do then you have the same decision to make that I did; to tolerate, change to Esbriet, or not take meds.
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I assume you live in the USA. I would think you are eligible for some kind of insurance with all of your lung issues. Call your county health services and see what advice they could give you. Good luck.
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I’m not sure whether your taking Esbriet or Ofev, but it really doesn’t matter as both encourage with food. I started on Ofev but switched because of side effects. I still have them but they are more tolerable. In my case I just eat something before I take a pill. I take one with breakfast and one with dinner. On Esbriet you need a third so I will have a light lunch when I take my pill. I’ve have enough side effects so I’ve never tried taking either med without eating something.
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Based on my experience IPF isn’t diagnosed by Xray. The xray may give reason to suspect it but a more advanced CT is the next step. I would definitely see a pulmonologist. In my case after a CT I had a lung biopsy though I don’t know if I’ would have it again. A legitimate diagnosis of IPF is not reason to start O2; having O2 levels below 89 is the reason to start O2. I was first started on O2 after my sleep was monitored and there were periods of time my O2 level went below 88. As a result I was given (rent paid for by medicare) a large plug in only, continuous flow concentrator. Continuous flow is necessary during sleep as at times during sleep breathing is too shallow for pulse to work. It seems to me that no matter what your lung issue is, the six minute walk test is the best way to determine if you need O2 and how much.
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Thank you. I had no intention of violating policy; that is why I asked.
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Things have changed since by Dec 11 post. A pulse of 5 is no longer sufficient for any kind of sustained activity. The rental company I have would have solved this problem by given me a tank which would keep me from flying. As a result I cringed and spent the money to buy a different portable, but not backpackable machine; the Claire Eclipse 5. It comes with a pull cart. I’ve only had it a little over a month and my only complaint is battery life which is a common problem with all portables. The 5 has plug-in capabilities and a continuous ratings of 1.5 and 2; it is a 24/7 machine. It has pulse ratings of up to 9, 192ml. I extend the battery life to some extent by varying my pulse settings depending on what my level of exertion is.
Originally I was given the large home Respironics continuous flow machine for use at home and the Simply Go Mini as a portable. I was very happy with the mini as I used it in a back pack. A problem with my provider was when I flew anywhere I would have to rent at $100 a week a Simply Go that had continuous flow 24/7 capabilities and was a plug-in. I no longer have to rent a continuous flow machine but I’m sure I won’t live long enough to pay for the 5.
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I switched from Ofec to Esbriet well over a year ago because of the side effects. I’m sure I have some side effects from Esbriet but it’s hard to tell as I have been on IPF meds for a couple of years. The gastro symptoms did improve. If you look at the research on these two drugs you will find that compared to the control group they both slowed progression of the IPF in some/many of the participants. The problem as an individual is that you don’t know if the meds are working as you don’t know what the progression would be without them. I think I would take my chances and stop taking the meds if reducing dosage with doctor’s supervision didn’t reduce significant side effects. FYI I don’t use O2 unless I’m doing something physical for more than a minute or two.
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Hi, I have a Simply Go Mini and have been quite pleased and have a larger home machine, Everflo IP21 that is continuous O2 and I use at night for sleep and around the house when I am active at any degree(Has a 50ft tube.) I have Tricare for Life (Medicare +Tricare) and they rent equipment and you deal with a O2 provider. I like my mini, a pulse provider. However, it cannot provide continuous O2 that the regular Simply Go can. That means that you have to have a separate machine for sleep. The mini is about six pounds and I carry it in a backpack bought form the company and use it when walking. The regular simply go is a little heavy for most to carry it and a cart is provider. I will probably need to change to that some day. I found out who you get as a provider is important as it is not possible to change after you choose one. I have a local provider and I would recommend a national one if you travel. With my local provider I have to rent a simply go for $100 before I go out of town as the mini is not made to run overnight for long periods of time and cannot be continuous. A national provider can arrange an appropriate continuous machine at your rendezvous.
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Anne, I first saw a pulmonologist in December 2013. I was diagnosed with IPF in February 2015 and later after a biopsy in June 2017, the UIP type. In August 2018 I started on O2. I don’t think it’s possible to tell when the disease first started. I’m on O2 24/7 and 10lpm is needed if I do anything other that be still.