[Richard L Shelby]

In addition to the complaints about the company, notice this statement on the Meubon web site:

“The oxygen concentration is 93%±3% at 1L, 60%±5% at 2L, 45%±5% at 3L, 35%±5% at 4L, 30%±5% at 5L and 28%±5% at 6L.”

At the 6 lpm setting the unit delivers from 23% to 32% oxygen. Normal room air is 21% which means that the Meubon unit does almost no concentrating at the 6 lpm setting. This is extremely poor performance. (A home concentrator such as the Philips Respironics EverFlo delivers 93% (+/- 3%) at 5 lpm.

Richard

 

 

[Richard L Shelby]

Hello, Jill.

The short answer to your question is “yes”. From the Social Security web site (https://www.ssa.gov/disabilityresearch/wi/medicare.htm):

“Everyone eligible for Social Security Disability Insurance (SSDI) benefits is also eligible for Medicare after a 24-month qualifying period. The first 24 months of disability benefit entitlement is the waiting period for Medicare coverage.”

Richard

 

[Richard L Shelby]

None of the available inhalers do anything specifically for PF disease. However, there are other reasons to use them even if one does not also have asthma or COPD.

First, PF patients often have inflammation in the lungs and inhaled steroids can reduce the inflammation. Reducing the inflammation will help the lungs to work better and so ease breathing; PF + inflammation is worse than PF alone. (This is also why PF patients are often given prednisone — it does nothing for the fibrosis per se but deals with other issues and thereby make the PF patient more comfortable.)

Second, even without asthma inhaled albuterol (in a nebulizer or an ’emergency inhaler’) will relax the airways allowing for easier passage of air into the lungs. A person with allergies often has a reaction in the airway which is similar to asthma, and a PF patient with allergies will generally find albuterol to be helpful by easing the breathing. People without allergies (or another similar airway constriction) will often notice easier breathing but not always.

[Richard L Shelby]

I take many pills each day. Like many others I use a pill organizer. Mine has four compartments for each day of the week. On Sunday I fill the organizer with the week’s medications.

As an added safeguard, and to help with PRN medications, I use an app, Medisafe. There are other apps available which accomplish the same things but I like Medisafe. The app notifies me when it’s time for a medication through a pop-up. It also keeps a history of my meds and checks for interactions among my medications — a useful feature.

Between the organizer and the app it’s difficult to miss a dose. Hope this helps.

[Richard L Shelby]

@tom-nicholas Your assumption is correct and all of us interested in EGCG need to pay attention to the product labels as the percentage of EGCG varies quite a bit over the range of available green tea products.

[Richard L Shelby]

There are many items (both prescription and OTC) available to combat cough but a physician warned me that although any of them might help, none of them work for everyone, and most won’t work for given individual. So, he said, try one and then another until you learn what works best for you. Your physician can give guidance on what to try based on his/her knowledge of your disease and specific situation, so begin by asking your physician. In the meantime, here’s what helps me.

Sipping water or club soda keeps the cough down fairly well. This is a tactic I use at home or when dining out or in a social situation with others. It does have the downside of more frequent bathroom trips.

Something which works very well for me is chewing gum. Cinnamon flavor is my favorite as it keeps saliva flowing and the flavor seems to last longer. Since continuous chewing looks unattractive and can be disruptive to others, I chew a few times and then “park” the gum in my cheek until I feel my throat start to dry. In situations where chewing the gum may be awkward, for example at church, I explain to people why I’m doing so. (I was not able to attend a full church service due to disruptive coughing until I started chewing gum. My fellow parishioners are now quite accepting of my “habit” and I think that most of them no longer notice it.)

Water and chewing gum work for the intermittent cough. However, I used to also have coughing “fits”. They would hit during the day or night, awakening me as many as three times in a night. These would come on despite my sipping club soda or chewing gum tactics. I would continue coughing for two minutes or so and get short of breath. On the recommendation of a friend who is a physician (but not my physician) I tried NAC (N-Acetyl Cysteine or Acetylcysteine). It is available without a prescription in the US. I stated taking 600 mg each evening and the coughing fits stopped almost immediately. After taking it for about a year, I stopped to give my body some “time off” and the nighttime coughing fits started back after a few days. I restarted the NAC and the fits stopped again.

That’s my experience but what works for me may not work for you, and vice versa. Talk to you physician and try a remedy. If it doesn’t work, try another one.

Richard

 

[Richard L Shelby]

Think of O2 levels this way: A healthy person has an O2 saturation of 97-99. Less than 95 is considered low. If the O2 saturation is too low then the person will be prescribed supplemental oxygen. The goal of treatment with supplemental O2 is to keep the patient’s O2 level in the normal range, i.e. 95 or above. People using supplemental O2 should use a pulse oximeter and adjust the supplemental O2 to stay in the normal range.

Your body requires different amounts of oxygen depending upon your activity so patients will need a higher supplemental O2 flow rate when walking or climbing stairs than when sitting. Coughing will usually cause the O2 saturation to decrease because coughing prevents normal breathing. Usually the O2 level will improve soon after the coughing stops.

Low O2 saturation causes damage to the body. The brain is especially susceptible to damage from lack of oxygen. There is no “magic number” below which damage occurs — too low is bad even if it doesn’t result in immediate, noticeable damage. It isn’t the case that O2 below 95, or 90, or 88 will definitely cause damage, however, damage is more likely to result as the level decreases or when a low level persists over time. But given that normal is considered to be above 95, why not adjust supplemental O2 to keep the patient’s O2 at 95? Until the patient’s lungs got bad, the patient lived at that level, and healthy people still do.

Here’s an article on O2 saturation; it’s aimed at COPD patients but the information applies to IPF and PF patients also: https://www.verywellhealth.com/oxygen-saturation-914796

Richard

 

[Richard L Shelby]

There is a lot of confusion on this topic. One can read details elsewhere on the Internet, but the short answer is this: Too much supplemental oxygen can be hazardous for a patient with COPD. Many people read or hear this and think that it applies to all lung disease, however it does not. There is no problem of “excess” oxygen for IPF patients. Problems of gas exchange and CO2 buildup can occur in COPD patients but not in IPF patients. Someone with IPF does not need to be concerned with getting too much oxygen.

Before you had IPF, your body worked to keep O2 saturation at 95-100%. Now that you have IPF, use your supplemental O2 to try to maintain that level. Don’t worry about your O2 saturation getting too high — in fact, in this case there isn’t such a thing as “too high”. 100% is the maximum and it is quite acceptable for a healthy person or an IPF patient to have 100% saturation although 95% is generally sufficient.

Too low O2 saturation is a problem: It not only makes you feel bad, it damages your body. When the O2 saturation gets too low then there is not enough oxygen to meet the needs of the cells and over time this will cause organ damage.

[Richard L Shelby]

Hi, Jim,

You should consider switching to something else if you’re using the inhaler that often. There was a time when I used the Ventolin inhaler extensively and my pulmonologist prescribed albuterol in a nebulizer. I used it twice a day and it worked better than the Ventolin. The albuterol is in solution and so the nebulizer delivers water mist as well as the medication and that aids in getting the mucus out. It was also cheaper as my copay for a month’s supply of albuterol for the nebulizer was less that $2.

Another alternative is to switch to a long-acting beta agonist (LABA). Albuterol is fast acting — that’s why it’s in the ’emergency inhaler’ — whereas a LABA is slower acting. However, a LABA is also long lasting. I used Brovana (a LABA) for a time and it helped a lot. While using it I almost never had to use the Ventolin inhaler. Trelegy is another often prescribed LABA.

Talk to your physician about these alternatives as you may (or may not) get better results. They certainly helped me but then we’re all different.

Hope this helps,

Richard

 

[Richard L Shelby]

Hi, Liz,

A steroid inhaler (or oral steroid) will not improve pulmonary fibrosis per se but it may (not necessarily will) make a patient feel better and breath easier. It’s as my former pulmonologist (whom I loved dearly) would say. She would enter a prescription, look at me, and say, “This won’t cure you; as you know there is nothing I can offer as a cure. But this might help your breathing and make you feel better. If it does, great. If not, then we can try something else.” I have used several steriodal medications and some helped.

Many PF patients have inflammation in the lungs and a steroid can improve breathing in those folks. There are several commonly used inhaled steroids including budesonide/Symbicort, beclomethasone, ciclesonide, flunisolide, fluticasone, and triamcinolone. Inhaled corticosteroids are often used in a nebulizer but some are available as an inhaled dry powder. They are commonly used for asthma and COPD patients as well as PF patients. Quoting the American Academy of Allergy, Asthma, and Immunology, “These asthma medications reduce many forms of airway inflammation, which helps normalize how much mucus you produce, airway hypersensitivity, swelling and tightening of your bronchial tubes.”

Hope this helps.

Richard

 

[Richard L Shelby]

Please ignore my response as I discovered the quote was not from the correct web site. I tried to edit or delete my message but the system would not accept the edit. Sorry for wasting space and time.