-
Recent diagnosis; so many questions
In mid-May I had an X-ray and a CT scan that confirmed I have an interstitial lung disease. I’m working with a good team of doctors (from Brown/Lifespan in Rhode Island) who are trying to determine the cause and the treatment. The first pulmonologist and a rheumatologist suspected an autoimmune issue, specifically Antisythetase Syndrome/Raynaud’s. I do have some symptoms to support that diagnosis, particularly “mechanic’s hands.” Yesterday I saw a second pulmonologist who is part of this group and who specializes in interstitial lung disease. He’s not convinced it’s autoimmune related; he’s leaning toward IPF. His concern is that treating the disease by suppressing the immune system could make things worse if that’s not the cause. He’d rather see me go on Ofev or Esbriet, which he says has been shown to work on autoimmune ILDs as well as on IPF. He’s going to confer with the first two doctors and they’ll get back to me next week with their recommendation. If they go the IPF route, he’s recommending Esbriet for some reason, but says the efficacy of that and Ofev are the same, and it’s my choice. Do people generally tolerate Esbriet better?
My other confusion is with supplementary oxygen, which he feels I’m ready for. The nurse practitioner says I can use one of two oxygen suppliers who serve the area (Rhode Island), but that once I choose one Medicare won’t let me change suppliers for five years. One supplier, she says, has excellent customer service, but they don’t sell portable oxygen concentrators (POC). The other is a big national service with poor customer service, but they do offer POCs and Medicare will pay for one after six months. For the first six months I’ll get a stationary tank for home use and small oxygen tanks I can use when I’m out.
I do think I’m going to want a POC at some point for travel. Maybe I’ll just end up paying for it myself. Has anyone gotten theirs through Medicare? Is it a hassle? Any recommendations for POCs? The nurse practitioner said I should get one that goes up to at least 4L.
I’ll be starting pulmonary rehab soon and joining a support group held in the building where I see my doctors.
The doctor I saw yesterday, who was previously with the lung program at Mass. General in Boston, thinks I’d be a good candidate for a lung transplant despite my age — 71 — and he’s going to get the pre-evaluation process started immediately (at Mass General). I had thought the underlying disease would ultimately damage the transplanted lung, but he says that’s not always true. That’s good news.
I’d appreciate hearing your comments to any of this. It was a lot of information for me to digest.
-
18 Replies
-
Welcome to the Forum. I have IPF. Some thoughts:
1. I use Inogen POC’s covered by Medicare; so far (3 years) no problem;
2.I have been on Esbriet for 3+ years; some side effects mostly loss of appetite occasional headache and a feeling of malaise but all have been manageable; I feel the reward outweighs the risks (side effects);
3. I am in the lung transplant program at MGH (Dr. Astor). I “passed” all the testing and the approval came in December, 2017 but I was too “stable” to list. I have had 6 month evaluations since, the last being 5/7/19. I am 72 and although age is becoming a factor, MGH’s position is no one is aged out, rather is based on the individual’s overall health. They will see me again in November. We’ll see.
Trust this helps. Hang in there and good luck in Boston.
-
Thanks for the information, Robert. And good luck to you, too.
Is the Inogen FAA approved so you can take it on a plane?
-
Hi Cynthia,
So many great questions, glad folks are chiming in to help you get some answers. Just quickly: I believe the Inogen POC is FAA approved to board air crafts, yes. I can’t be entirely sure but I am about 90% sure I remember that being on the list when I was looking to see if my POC was approved, which it is and its the Respironics SimplyGo machine. I’ve flown all over with it 🙂
Charlene.
-
Charlene, I’ve been looking at the Simply Go unit you have because it has both continuous and pulse. When you travel, is that what you use for sleeping? When you’re flying for six or more hours do you have to bring lots of extra batteries. Is that unit sufficient for all your oxygen needs when you travel?
-
Hi Cynthia,
Thanks for your reply, and I hope you’re having a nice weekend! It is the first real weekend of summer-like-weather here, so I am eager to get out and enjoy it 🙂
I do really like my SimplyGo unit, the only complaint I have about it is its weight. It feels heavy for me, but I supposed we’ll not ever be able to get away from that fully and usually I am pulling it around on the trolley anyways. I’ve not had any issues flying with it, I’ve been to NYC, California, DC and Vancouver with it. I will be bringing it to Hawaii in September as well. I don’t always need to use it on the plane, but I monitor my sats regularly and have it with me in the event I do need it. The airlines have been good, as I always bring the FAA-approved certificate with it so there is no argument. I do use it for sleeping while I am away and haven’t yet had to use the oxygen supplier my doctor connects me with in advance of traveling for extra support, but I suspect I might have to this time (for Hawaii). There is the option to bring your 02 script with you from your doctor, and connect with oxygen providers in your area of selected travel, then arrange for POC or tank rentals. I may do this for nighttime while in Hawaii, I’m not sure yet. The airline requires me to bring 2x the length of the flight worth of batteries, so that will be interesting to coordinator for Hawaii but I know I can manage it. Does this help a bit? Let me know if you have any more questions! I refuse to give up travelling until I absolutely have to, so I’ve learned to work around these issues pretty well.
Cheers,
Charlene. -
Hi Charlene. Thanks so much for that information. I worried about the weight of the Simply Go model you have but the smaller unit doesn’t have continuous flow for sleeping, and until I get much worse I’d like to rely on my POC for that when I’m traveling. But that’s good to know about bringing my prescription with me and renting tanks if I’m staying somewhere for a week or more. I can’t remember where in Canada you live; how long will your flight to Hawaii be? How many batteries will you have to bring? I hope you have a fabulous time there. We’ve had a cold wet spring here in Rhode Island, but we’ve got the perfect weekend right now. Clear air and temps in the low 70s. I even did a little weeding this morning — wearing a face mask.
-
Hi Cynthia,
I hope you’re having a nice weekend. No worries re: sharing the information, hopefully it helps a bit 🙂 The weight is indeed the only thing I can complain about with the SimplyGo model, but the trolley does make that easier. I like the continuous flow setting, and it also has a “sleep mode” – did you see that? It delivers continuous 02 and then if my breath sounds become absent or an abnormal breathing pattern is detected, the machine will alarm until the alarm is manually turned off or the breathing returns to normal. It can be a bit of a pain when it goes off because I’ve knocked the cannulas off, but I’d rather that then it not let me know or wake others.
My flight to Hawaii will be 13 hours total but I have a lay over in Vancouver. I will be bringing lots of extra batteries, and the airline I fly with is very good with my bringing my POC. I am actually a member of their elite club (have the credit card) so they are familiar with my flying needs, I consider myself quite lucky this way.
Glad you wore a face mask gardening, I have learnt the importance of this from Mark. He mentions that patients can’t be in/around dirt post-transplant, and while that isn’t me yet, I still refrain from being around dirt without a mask due to mold spores. We had a beautiful weekend here too, glad you were able to enjoy it 🙂
Feel free to connect with any further questions.
Regards,
Charlene.
-
-
-
I too used Imogene. They are Medicare approved. They provided an in-home concentrator that went to 10 liters and a POC that went to 6 liters. What I really appreciated was the size of the in-home concentrator. It was small enough to fit in an over-head sized luggage so I did not have to worry about getting a unit at my destination. The POC had a 6 hour and a 10 hour battery which was enough for any length flight.
The service was through FedX as we did not have a store here in Tucson. I never had a problem that they did not have a solution for.
I found them hard to locate for rental as they seem to want to sell the units rather than rent them. If you look throughly at their web site there is a phone number for rental service. I couldn’t afford to buy one And did not see any advantage to owning it, so rental worked best for me.
I highly recommend them for easy use and service. Wow, I sound like a commercial.
Jan
-
Just went online and found a number for Imogene rentals. 1-855-213-4372. I would send a link to the web site but that is beyond my tech abilities. At first getting to understand the O2 process is confusing but it clears up eventually. At least that has been my experience.
Jan-
Thanks, Jan.
-
-
Yes, good to go for air travel. Your MD should write a prescription for the POC. The tendency of all insurance companies is to say no but the MD’s office are well versed in the ins and outs of insurance protocols including Medicare.
-
Cynthia –
Hi! Not sure what kind of Medicare plan you have but as far as the prescription part (I have Part D for prescription coverage) sometimes both IPF meds are not priced the same. My current coverage Part D prices both of the drugs at over $10,000 retail and I have to pay 25% of the cost right now. I understand from my insurance broker that different insurance companies place different retail costs on the same drugs. Another Part D prescription plan has the retain cost at slightly over $5,000 for OFEV and over $10,000 Esbreit. So you might want to check with your insurance to see if it is less expensive to get one of the drugs over the other. My doctor let me choose which drug I preferred. He has patients on both IPF drugs. I am not currently on either drug because we are trying to find some help from the manufacturer or a private foundation to lower my co-pay and out of pocket costs. I have Medicare A, Medicare B, Supplemental Coverage and Part D prescription coverage. Not sure how this works if you have a Medicare Advantage Program where all the insurance is bundled into one package. Hope this is helpful to you and to others on PF news.
Marianne
-
Wow, that’s a lot of money. I have a good insurance plan for my prescriptions (and my secondary insurance) — it’s the Federal Blue Cross/Blue Shield. I’m hoping they’ll cover most of it, but you never know. Thanks.
-
-
@cynthia-comery-ferguson
Hi Cynthia,
I was diagnosed Oct 2016 with ILD, May 2018 IPF was confirmed. I use the VA system and turned down the 2 common meds because of side effects and I know everyone will have a different experience. Instead I researched supplements, herbs, and K-laser treatments. There are several forums here that will help you become familiar with alternative and additional actions you can take to enhance the meds usefulness.
When I went through pulmonary PT, it helped me learn a couple of useful breathing techniques and after it was over, I started some mild to moderate gym workouts that surprisingly helped my O2 stay good for a day or two. My O2 has stayed steady since implementing the diet, exercise, hydration, supplement, herb, and K-laser routines, so much so the doctor took back the portable O2 because most of my 6-minute walk tests are good. I left the USA May 21 and have been without O2 at night in the Philippines but will get a concentrator soon as they can help clear exhaled nitric oxide (eNO) from the lungs as it is a potential stressor as eNO. There are some studies indicating inhaling NO may help with PAH but I am not convinced of that yet. So not enough is known for either points of view so far.
You are certainly in the right place as you will find many engaged members willing to help you on your new journey. Welcome to the battle ground against this insidious disease…
Stay well – Steve
-
Thanks, Steve. I’ve been reading what you’ve said about supplements, herbs and laser therapies on other threads. It’s something I do want to investigate. When the doctors first suspected an autoimmune issue I put myself on the Autoimmune Protocol Diet and felt better almost immediately. I can tell that my doctors think it’s probably all in my head, but I’ve stuck with it pretty religiously, eating very few grains (no wheat), very little dairy and no sugar. I don’t have the dizziness I was suffering before or the tightness in my chest. The only alternative medicine I’m taking now is tumeric and pepper, which is supposed to be an anti-inflammatory. I’m really looking forward to the pulmonary rehab because I think getting some exercise will make me feel better as well. I didn’t do very well on my 6-minute walk, so I’ve been waiting to get some oxygen before doing much of anything.
-
-
@cynthia-comery-ferguson
Hi Cynthia,
Most doctors have maybe 1 credit hour regards nutrition and most of that comes from the upside down food pyramid. So they are little help when it comes to diet but there are some that are aware. I worked in cardiology in the US Navy (enlisted), have two doctors in the family and several nurses and I don’t listen to them much.
You are on the right track as we need to take matters into our own hands. There are some promising clinical trials but who knows when they will be released. Keep researching – new insights and white papers pop up all the time. When I see something new to me I try to check it out on WedMD and Dr. Mercola, also watch a couple doctors on YouTube but typically don’t listen much to personal YTers talking how good their results are with any particular product. Sometimes they were asked to give a good referral and are compensated.
There are some supplements I have had great success using but I know there are many contributing factors to individual results. However, serrapeptase is one I do recommend (among others). Interesting side effect from using it to stop lung mucus – and it did- was many capillary varicose veins in my feet are gone. Serra did that…
Steve
-
Hi Cynthia – Sounds like we just went through the process at the same time. My son is the one diagnosed. He is 13 but has had a similar experience to yours. I cannot help you with Medicare as he has private insurance and we are currently applying for disability insurance through MassHealth. Are you able to use a pulse activated POC? My son needs the continuous flow, so we have a carry-on suitcase size POC. It only goes up to 3L, so we have an oximizer to boost his oxygen should he need it. Most of the time he is sitting in a wheelchair with the POC, so it’s not an issue. He has a tank as a backup. I would go with the DME company that can provide the equipment you need. We had to switch companies because our first company couldn’t provide a POC. My son needed that in order to return to school.
-
@rayna-meryl
Hi Rayna,
13 is very young for this insidious disease. I hope you can spend a little time looking over some of the forums here as there are many dedicated patients, doctors, admin, and others contributing what they have discovered and use to help combat the effects of IPF.
Steve
Log in to reply.