I’ve never been told anything about an optimizer. I have IPF, emphysema and PAH. I use 15lpm with exertion which now means just about everything other than sitting. Even with pursed-lip breathing my SATs drop quickly into the 70s. My doctor’s office is looking into something called Life2000. Looks like a poc but has different levels of… Read more

I’m also using two concentrators for activity. I need 15lpm. However, my doctor wants me to use the lowest possible amount of oxygen when I am at rest. That, for me, is about 3-4lpm. The POC isn’t enough so I have to use a tank, which still runs out fairly quickly. I really don’t want to have both concentrators right beside me because of both… Read more

For those who are on Medicare, once you hit the “catastrophic” stage, they pay all the cost. You will have no copay for the rest of the year. Finally, a good thing about being old! 😉

You might try having your wife drink peppermint tea. Sounds crazy and too simple but it works for me. The pain and tightness just melt away, no gas or burping involved. Best of luck.

I have seen many people post about the amount of oxygen they are on and most people seem to be using from 2 to 6lpm. Is there anyone else using 15lpm during exertion? That’s what I’m on and now I’m finding that it’s not really enough. I’m sob so much, even though my sats rebound fairly quickly. My doctor’s office asked if I was also… Read more

Hi, Nate. Unfortunately it seems as if getting a diagnosis for almost anything these days takes a loooong time! Not to say your doctor is wrong, but is it possible the test reading was in error? Could the test have been faulty? I’m all for getting a second opinion. Crackles are nothing to be ignored and listening through your shirt is a…

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I’m a 73-yo female and was diagnosed in January 2018. Like everyone else here I started off needing oxygen only when active. That progressed over time to where I am now using 15lpm when I am active and down to 2lpm at rest. I also use a CPAP at night with 3lpm oxygen. You have to get used to the idea of pulling/carrying along your…

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I’m wondering if anyone is still wearing a mask when going out these days.  I have been vaccinated for COVID and had my boosters.   Some people still wear masks working at the library but not many others do.  Am I being overly careful?

Here in  southwest VA the pollen counts have been especially high this spring.  Trees and grass pollens are fierce!  Even using Zyrtec and Flonase regularly, I still have days that the drippy nose just won’t give up!  These meds are cumulative in effect so it’s important to continue using them regularly if they are what your doc prescribes.  I… Read more

Pamela, I can’t speak to your scleroderma, but humidity does a number on most everyone who has breathing issues.  I stay inside to avoid it!  An exacerbation is any situation that causes you to have trouble with your O2 levels.  I had pneumonia in September that sent me to the hospital and it took a while afterwards to get back to “normal.” … Read more

Inhaled Esbriet?  Really?!  I hadn’t heard of that.  I am using the inhaled version of TyvasoDPI for PAH, which is much less hassle than the nebulizer form.  Lots less waste, too.  Guess I need to do some research on the Esbriet.  Thanks for bringing this up.

I can understand not wanting to repeat too often tests that expose a person to radiation unnecessarily.  Still, I would think that the doctor should discuss the plan with the patient.  I have felt as if perhaps it’s just a matter of knowing this will not get any better, so why bother?!  Not the best feeling and I have struggled with it.  I… Read more

This is a little more at the other end of the spectrum since my question involves needing a much higher rate of oxygen.  I currently need 15lpm when I exert myself.  I have had people tell me that is “a LOT of oxygen.”  I suppose that it is, but it is what it takes to let me get around.  At rest I can manage on 2lpm continuous flow, but when I… Read more

Judy, the funny thing about having IPF is that  there are lots of times I wish for people to want to be with me or be in touch and then, just as often, I want them all to go away. I don’t think that is awful!  I think it is just our way of dealing with the adjustments we have to make.  Tired is a large part of this for me as well.  I saw my… Read more

Joy, I understand your husband’s preference for the DPI.  It is far less complicated and time-consuming than the nebulizer.  I have to  admit that I still feel resentful at having to always be aware of the  time and taking medicines.  Horrible attitude to have, but I  do.

SOB is also linked to accumulated CO2 in your body.  This is usually the case where COPD or emphysema is involved. That may not cause your O2 levels to look particularly low.  If you need your pulse-ox to tell you that you are SOB, be thankful.  I have progressed to the stage that much activity causes my O2 to drop into the 70s or even the 60s… Read more

I have been on Tyvaso DPI for five months now.   Before that I was using the nebulizer form.  I also find that the first thing in the morning, both of these forms cause a good deal of coughing and fatigue.  My O2 drops due to all the coughing, so sitting down is the best thing for me to do.  I have found that excessive coughing often responds to… Read more

Sunscreen with high SPF is important when startin Esbriet.  It was suggested that I use SPF of 50 or higher.  One day early on I hadn’t put any on and was talking to a neighbor in the sun for about 10-15 minutes and I could feel my skin begin to tingle.  I was careful after that but found that about six months later it wasn’t a problem for… Read more

Hey, Charlene.  I’m dealing with the same issue as you, becoming SOB with exertion.  Levels are falling into the 60’s and 70’s.  I rebound quickly, but it is terrifying!  I’m glad to get this topic in discussion and appreciate Margaret’s sharing her information.  Looks as if I will be starting on some of those exercises myself.  I hope you… Read more

Charlene, I suspect the doctor would be more likely to offer other patients Ted’s information than the other way around.  That way they could make the contact without any problem with confidentiality.  Or maybe Ted could ask the doctor if he could print up a handout that the doctor would leave in the waiting room for patients to pick up if they… Read more

I was also diagnosed in early 2018.  Other than progression of SOB, things weren’t too bad.  Then I ended up in the hospital on September 3rd, staying for five days.  They seem to think it was mild/early phneumonia that I had.  I had been afraid it was COVID.  The doctor asked me if I have seen my films, which I have.  He suggested I talk to my… Read more

Martha, I’m so sorry you are dealing with all of this at the same time and are so scared.  It is a scary diagnosis that I also have.  There are medications that can help to slow the progression of any scarring in the lungs and there are programs to help pay for them.  I hope you are seeing a pulmonologist that you like and trust.  Please go to… Read more

Sadly, I have been told by my pulmonlogist that the only way you can really decrease your need for supplemental O2 through PT is if you are pretty out of shape to start with.  Otherwise, there is no “curing” the need for O2.  I have recently been through a course of monitored PT and even though my stamina is better than it was and I can work for… Read more

Natalie, there is so much solid information here.  Pete is exactly right about the difference in pulse and continuous flow O2.  Of course we should follow our doctor’s orders, but they also need to be in-the-know about these things, too.  Outdoor humidity as well as temps affect breathing, without a doubt.  I am also not “consistent” in my… Read more

Even though I realize IPF is considered a disability, I guess I don’t think of myself as disabled most of the time.  Being almost 72, I have been retired long enough not to always feel the need to maintain the pace I used to.  Growing up, my two brothers were developmentally delayed, so “disabled” was a word I heard often, but they were just… Read more

I hear that, Thomas!  I was diagnosed 3 1/2 years ago and also take a couple of other meds that are supposed to be linked to weight loss.  I know this is not an ideal way to lose weight, but it was a bright spot.  🙂  One day.

Jerry, I’m wondering if taking your restless legs meds at night might be more effective.  Perhaps their greatest efficacy has worn off by bedtime.  Just a thought.

Ladies, I also have leg, foot, hand as well as rib cramps.  I have found that drinking 6 ounces of tonic water will help.  I also take potassium in addition to the magnesium, which also seems to help.  Staying hydrated is very important.  The most helpful item I have found is a little pill called Restful Legs.  I get it at Walmart.  You… Read more

You are very welcome, Pamela.  I certainly have my share of panic when I am short of breath and have to remind myself of these things.  I hope they will help you.

The most help I get for dyspnea is through pursed lip breathing and visualization.  You need to breath from your belly, not the upper lungs as we do when gasping for breath.  Breathe in slowly through your nose as your belly expands and out through pursed lips.  It is best to do this when sitting with a very upright posture.  As you calm down… Read more

I was just offered the generic form of Esbriet with my most recent refill.  I do qualify for assistance, but I will happily take the generic form for two reasons.  Number 1, I have always found generics work just fine for me.  Number 2, even though the cost is not a huge difference yet, any extra dollars this makes available for others to… Read more

Everyone needs time to take in this diagnosis, even your children.  I am in the camp that says tell them ASAP.   I’m also old enough to remember Sargeant Friday’s “Just the facts, ma’am.”  As was pointed out, they can (and very likely will!) seek out details on their own.  Each one has the opportunity to do that at their own speed and comfort… Read more

Unpredictable, sneaky, cruel and relentless.

I feel very fortunate that I am still able to do my own vacuuming.  My daughter and son-in-law bought me a Dyson cordless.  When you are dragging around tubing, you really don’t need to also have to deal with a cord!  I only have a room-size rug in the living room, which helps.  I use a grabber tool for many things.  I also have an extending… Read more

Wishing you all the best with the transplant surgery, Russel!  Be strong!  Be fearless!  God bless you and speed your recovery.  You will be in many prayers.

It has been my experience that the high-flow is linked to darker green tubing.  Anyone else fine this to be the case?

Sounds simple enough.  Thanks for the idea.  I will be trying it as I also have a problem with this.

Earl, thanks for the reply.  I will look into the idea of a bluetooth app for that.  Who would have thought of it?  Well, not me, evidently!

Hey, Christie.  Before my condition curtailed my mobility so much, I used to help my neighbor walk her two dogs.  It was a lot of fun and I think your suggestion of volunteering to walk someone else’s dog or help out at a shelter would be great.  Between the companionship and the fresh air and exercise, you can’t help but boost your mood and health!

Richard, I love your explanation for the use of inhalers!  It certainly is more helpful than anything my docs have ever told me.  Always nice to get educated!  🙂

Linda, I wonder if your throat is irritated enough that you are getting tiny amounts of blood in your sputum.  That might make it somewhat salty.  Everyone’s body chemistry is unique, which might account for why it is so bad you get sores from it.  If you are using any sort of inhaler, that might also account for the sores on your tongue.  Be… Read more

Like Wendy, I am an animal lover.  My kids and grands have dogs who are a delight to watch romp and play.  A good vacuuming after they visit is a must, but well worth it to me.  I have a sweet cat who is my buddy.  He is very gentle and seems to pick up on my moods and is extra cuddly on days when that is what I need.  He is an indoor-outdoor… Read more

I have a small container that I carry in my pocket.  Just count out my nine pills in the morning (the bottle is beside the coffee maker) and I am all set.  Never have to worry that I am not at home.

Ben, I was happy to see someone else cite the odds and the post-transplant lifestyle as reasons to question whether or not to go this route.  My daughters are adamant they would do “anything” for me.  But I’m a widow and feel that whereas a spouse might be there for me, it is somewhat different to ask the assistance of other family members.  My… Read more

I have always found it fascinating to see both nurses and doctors smoking in the designated areas around hospitals.  Or patients with their IV stands alongside.  Not that this is any solution for your problem, Char, but I always have the urge as I wheel my oxygen tank past such people to say, “Keep that up and you too can have one of these!”

As… Read more

Thomas, I am also not excited at the prospect of suffocating at the end of my days.  I will tell you that my husband was hospitalized in his final days for other reasons and was medicated to alleviate “oxygen hunger.”  I would expect that if one is hospitalized or in hospice care at the end stage that this would be available.  Or, as I tell my… Read more

Linda, after reading your post about the silent GERD, it makes me wonder if some of us who are taking anti-fibrotic meds might be in the same boat.  It would certainly be less expensive to treat things this way.  Sounds like something worth exploring with my pulmonologist.

I also use Zyrtec and Flonased (generic forms for both) for the drippy nose.  (They are both OTC meds, Char.)  The thing with Flonase is that you need to take it every day as it works best on a cumulative basis.  Once I got that part figured out, it works much better.  I still have some dripping, but it is much more manageable.  The Flonase is… Read more

What about a strip of the two-sided velcro that sticks to itself?  That could be fastened around the “handle” of the concentrator or strap of the POC and then around the canula,

I’m on Esbriet and don’t know if this qualifies me for a third shot.  Will ask my doctor.  For those of you who get a sore arm, I was told to massage the area when it starts to ache.  I did this when I got my first two shots and it made the soreness go away very quickly.  Stay safe, everyone!