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Doug replied to the topic Need to start all over in the forum Esbriet (Pirfenidone) 1 year ago
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 gen…[Read more]
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Doug replied to the topic Need to start all over in the forum Esbriet (Pirfenidone) 1 year ago
Medicare pays for Esbriet, at least in my case. Also, I just read it is now out in generic form.
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Doug replied to the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
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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Doug replied to the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
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.
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Doug replied to the topic Wrestling with the End Stage of Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 1 year ago
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…[Read more]
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Doug replied to the topic Wrestling with the End Stage of Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 1 year ago
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 l…[Read more]
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Doug replied to the topic Need better diagnostic info in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
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 scar…[Read more]
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Doug replied to the topic Traveling long distances in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
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 nee…[Read more]
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Doug replied to the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago
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 str…[Read more]
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Doug started the topic BEFORE YOU START ON OXYGEN in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
This is based on my experience as Medicare recipient. When your pulmonologist recommends oxygen, his/her office may or may not recommend a O2 provider. I STRONGLY RECOMMEND that you DON’T make a choice immediately but research what is available. In my case I went with a provider the office used in the past and I regret my choice. You should also r…[Read more]
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Doug replied to the topic Buying an Oxygen concentrator in the forum Diagnosis Information and General Questions 1 year, 1 month ago
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 th…[Read more]
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Doug replied to the topic Buying an Oxygen concentrator in the forum Diagnosis Information and General Questions 1 year, 1 month ago
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 sur…[Read more]
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Doug replied to the topic Traveling with Pulmonary Fibrosis in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
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…[Read more]
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Doug replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year, 2 months ago
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…[Read more]
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Doug started the topic Coping in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
As a clinical psychologist for the last 44 years and one with IPF of the Usual Interstitial Pneumonia type, requiring O2 use all the time, I thought I’d share some of what my experiences and training have taught me about dealing with bad news.
When people hear bad news such as you have IPF, it is common to have negative thoughts such as “This is…[Read more]
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Doug replied to the topic Wrestling with the End Stage of Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 3 months ago
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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Doug replied to the topic Eating food with pill in the forum Healthy Recipe Sharing 1 year, 3 months ago
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 …[Read more]
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Doug replied to the topic Newby in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
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…[Read more]
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Doug replied to the topic For sale in the forum Using Our Forums 1 year, 4 months ago
Thank you. I had no intention of violating policy; that is why I asked.
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Doug started the topic For sale in the forum Using Our Forums 1 year, 4 months ago
Is it appropriate to sell something using this forum.. I have had to switch from my simpli go mini to tanks and have two good batteries that I would like to get rid of.
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