[Terry Moriarty]

I live in California, so shouldn’t have to worry about weather-related outages.  However, my concentrator has broken twice and power cables deteriorated in the neighborhood and electricity went out.

In the last case, my son came over and we put tanks strategically around the house. I’m on 8lpm moving around and 3 sitting.  I use an oxymizer cannula,  which double to triple the time I get from a tank.  I have purchased a number of battery-operated lamps that are easier to use than flashlights.  I have battery backups for my devices that last about 24 hours per charge.  The devices are good sources of light too. But even then, when it got dark, I went to a hotel. That’s easy to do when the outage is localized and you can get out of the area.

I’m considering putting in a battery backup system that runs off car batteries. To keep the circuit for the concentrator, that includes the refridgerator, runs about 15 hours. If I lived in an area like yours, I would have put this system a while ago.

For the broken concentrators, Lincare came out immediately. Once was on Christmas Eve night and the other was last Sunday night.  I only have praise for the two Lincare servicemen.

So that’s my ideas. Oxymizer cannulas, back-up battery for the house and long lasting batteries for devices. Also, for 2 incidents, I was asleep when the electricity went out.  That was scary.  Now, I keep an E tank near my bed. I can turn on the battery light and get the tank turned on quickly.  And I sit still so I use less oxygen.

[Terry Moriarty]

Charlene, one more thought.

When I was working in DC, there was a service that provided low cost rides for people with disabilities. Some were shared rides, which I didn’t mind when going home, but I almost always had a taxi in the morning. Is something like that available where you live? It really made commuting bearable for me.

[Terry Moriarty]

Most of what I’ve learned about being under-oxygenated is from another discussion group on IPF.  That’s where I learned about using different LPMs for rest vs. activity. I’ve learned nothing from my various doctors about this.

I now know, through experimenting, that I need 8lpms when moving around and only 2-3lpms at rest and when sleeping.  In the house, I’ve attached a regulator to the tubing that I use to control the flow. I have to remember to raise the flow when I’m going to be moving around.

The good news is I can use my POC when driving and don’t have to worry about running out of oxygen. I can set the POC to pulse rate 6 which is about equivalent to 3.5 lpms. I only need the tanks when moving around, like getting in and out of the car. I still have to use an electric wheel chair when out of the car to carry the tank because my balance is a bit off and I can’t pull the oxygen round on the cart. So, I’m not completely back to being independent, but working on it.

[Terry Moriarty]

Geez, Charlene,

I’m so sorry to hear that you are dealing with these issues at such a young age.

I’m experiencing most of them, but I chalked it up to the aging process. They really didn’t hit me until after I retired. Except the fatigue, which has been around since I was diagnosed in 2007. Commuting with oxygen is very exhausting.  Thank goodness for telecommuting! I only had to go into the office about once a week. Now, since my disorder has been progressing, I’m tired all the time. If I go out, I know I’ll need an immediate nap on returning home and probably sleep most of the next day.

But, I really thought the memory issues were senior moments. I used to pride myself on not needing to do lists. Now I can’t remember what I was planning to do a few minutes ago.  I used to have a photographic memory. Not anymore.  I need to have the instructions next to me all the time when I’m doing tasks that require ordered steps.

Once again, your column has me sighing with relief. These aren’t symptoms of another incurable disease. Just side effects of the one I already have.

Please keep sharing.

[Terry Moriarty]

Hi there. Saying welcome to this board just doesn’t seem right. I wish there was no reason for this board to exist. That said Welcome.

I don’t have IPF. I do have PF caused by Hypersensitivity Pneumonitis or HP. Diagnosed in 2007. HP is cause by an allergic reaction to some allergan. Possibly the dust from your wood and metal work. Mine is probably from mold.  Others are from birds or even down bedding. There are now a lot of known causes. I read one article that said one study showed something like 20% of IPF patients in the study, really had HP.

The good news is that there is a blood test that can detect around 40 allergans. I was only sensitive to mold.. If you can get away from that source and you don’t have major scarring yet, the progression can stop. In my case, I got away from the allergan, but the scarring was too far progressed. For HP, they are looking for ‘ground glass opacity (not sure that’s the right spelling)’ and ‘honeycombing’ in the CT scans. I don’t know if that’s true for all PF situations or only HP.

The reason I think it’s important to check out HP is that the treatment drugs are different. Imuran and Cellcept. in addition to or instead of prednisone.

So, if I were you, I would do some research on HP, since you do have a possible allergan. Most HP cases are of unknown cause, like IPF, but should be considered.

Good luck.

[Terry Moriarty]

I wear one, but I changed the bracelet to one of my own. I got the idea from Lauren’s Hope website. BPeople only notice the bracelet, not the medical alert. couldn’t figure out how to insert a pucture.

 

[Terry Moriarty]

Hi Paula,

My understanding, in the US atleast, is that the insurance companies require a 6 minute walk to qualify for oxygen. Your oxygen level has to drop below 88. Then they do it again at 2 liters per minute to see if you drop below 88. If you don’t, they keep upping the lpm until you stay above 88. That’s your prescription.

I don’t think your PFT results factor in, but I could be wrong.

The 2 times I landed in the hospital, my blood oxygen was observed by the doctors at 73. Sent straight to the hospital. First in 2007, second time was in 2011, which is when I went on oxygen 24/7. The prednisone is what brought my oxygen level up both times.

Do you have any idea when your doctor is getting back? If your oxygen level is that low, maybe you should go to the emergency room. Just a thought.

[Terry Moriarty]

Another interesting topic. Coinsidentally, I was just planning to make my next appointment. Things have changed since I’ve gone from a POC and walker to oxygen tank and a wheelchair.  I can’t easily attach a tank to the walker. I just can’t figure out how to maneuver the chair in the cramped space and leave enough room for the dentist and techs to do their thing.

But, I’ve never been laid completely flat in the chair for a routine checkup.  And I don’t remember ever having any tools/appliances set on me, except the heavy protection thing during xrays.

I think I’m going to have to get use to pulling around the oxygen on the cart until I can walk and not fall over.  Balance ins’t my strong suit right now.

 

[Terry Moriarty]

I was going to use the term “new age” to describe the salt shop, but mystic is probably more PC.  She also had beautiful jewelry and crystals.

No humidity in Arizona, Southern California and maybe western Texas. In fact, in AZ, at outdoor restaurants, they have misters installed to try and combat the dry heat. I’ll take dry heat over humidity any day. My belief (hope?) is that desert conditions are better for the lungs. But I have absolutely no proof of that. My PFT stats were the lowest (in the 30s) for FVC when I was living in the LA area. When I moved to northern CA, they popped back into the 40s. I blame it on the Los Angeles smog. My stats were in the 40s when I was working in DC, so maybe the humid climates are better for lung conditions. That would be an interesting discussion topic.

[Terry Moriarty]

Charlene, I had to laugh when I saw your post about salt inhalers and salt spas. I stumbled on to such a place in 2010 in Mesa, AZ. when I was doing a cross country drive from DC to my home in California. The “salt” place as I think of it was down the street from my favorite fiber store in downtown Mesa. I didn’t know it was a salt place when I wandered in. It just had a wonderful mystical Arizona vibe.

I was coughing badly since driving thru a Texas dust storm and the proprietor suggested salt inhalation. Willing to try anything, I bought an inhaler and three lamps. The lamps I got because they were so pretty. Two are carved elephants, which I collect.

I can’t say that the inhaler helped me much. The lamps have little tea lights that are supposed to release the salt therapy. They burned out real fast.

When I moved 2.5 years ago, they all got packed up. Guess what? I unpacked them last week, having totally forgotten about them. Was just going to set the lamps up when I took a break and saw your post. What a coincidence! I’ll probably have to get new lights for them. I’m not expecting much help from them, but they are really pretty lit up. Who knows, maybe they will be beneficial this time.

[Terry Moriarty]

I resisted getting a CPAP since my first sleep study showed very few instances apnea (not sure that’s what it’s called, instances of not breathing). Several years later my pulmonologist insisted that I have the study again. Pretty much the same results, but I was sleeping so poorly, I decided to get the CPAP.

I’ve been using it for 2 years now and my sleep improved for a while. I was waking up about every hour. With the CPAP, I got 3-4 hours sleep at a time. Now I’m at about 2-3 hours sleep session.

But the unexpected result was how well I breathe when using the CPAP.some times, even though I’m awake, I just lay there and breath.

The actual test isn’t fun. They put electronic connectors all over, including your head. You’re supposed to go to sleep, but I couldn’t. They said I never went into REM sleep. The second study was more successful. Once diagnosed, you have to go through the study again to fit you for a mask.

my brother did a home sleep study. Not sure how that worked.

you should seriously consider having the sleep test.

[Terry Moriarty]

Hi Charlene,

You always pose thought-provoking topics.

I was diagnosed with Hypersensitivity Pneumonitis in 2007 when I was on a contract in Australia. It was misdiagnosed as bronchitis for several months until a lung biopsy was done. Being in the hospital in a foreign country with no family around can be kind of scary.  HP is different from other categories of ILD, in that it’s supposed to go away when you remove yourself from the allergens. But, for me, the fibrosis damage was done by the time of detection. My FVC was in the 40% range and has remain there for 11 years.

So my condition has spanned several life stages from the peak of my career into retirement.  I went on oxygen 24/7 in 2012 and retired in 2015. Until I went on oxygen, no one knew anything was wrong. But I was more tired, so I missed more days at work than before.

When I went on oxygen, I had to face up to it. My client was great. They could have let me go, but they renewed my contract every year until I retired.  Initially, I was using tanks and commuting on the subway at rush hour. Not fun.  I felt freedom when I got my POC.  I was working in DC where they had a transportation service for handicapped people. By qualifying, I didn’t have to take the subway anymore.  My client let me telecommute, so that was an incredible relief.

With that background, here’s my thoughts on your question. The worse part was being misdiagnosed and barely able to breathe for 3 months. That really freaked out the people on my project. Australia’s medical system didn’t know how to deal with people who aren’t part of their social medical system. My boss finally got me to a pulmonologist who put me in the hospital immediately. But when I got out of the hospital, without oxygen, I could pretty much hide it and continue on as if nothing had happened.

In 20012, I had a reoccurrence and had to go on oxygen.  Once that happened, I had to discuss my condition with my client. My project team members were great, but I think they were embarrassed having me walk around with a hose hanging out my nose. I participated in more meetings via telecommunications. By the time I retired, though, almost all meetings were that way for everyone, so no big deal anymore.

The toughest stage has been retirement. I can no longer travel. I expected to go to the 3 states I haven’t been to. I have 3 timeshares that I can’t use and can’t sell. I thought I’d be that grandma who took care of the kids. No way that’s happening. Now my sons are taking me to see assisted living places. NO WAY!!! I’m not ready for that. I have to take a wheelchair to go anywhere. I need a driver. I’ve lost my independence.

Yet, I live alone and take care of myself. Since I can’t go out on my own, I use Safeway.com, Instacart and Doordash to get food delivered.  Cooking is hard because I can’t stand up for very long. I had a woman come in to fix a lot of meals I like and froze them for a month’s worth of food. So you can find ways to cope.

But this has only happened in 2018.  I’ve had 11 really good years, coping with this condition on my terms.  But, I think my condition isn’t as bad as some others because I have HP, which is suppose to go away. It just didn’t for me.

looking forward to hearing others’ stories.

[Terry Moriarty]

My understanding is that today the stages are determined primarily by the Forced Volume Capacity (FVC) results from the spirometry test done during pulmonary function test.  But these stages have nothing to do with being in “end stage”.  I’ve been in “severe” since I was diagnosed in 2007 via a lung biopsy. I have copies of the results of most of my PFTs over the years and been around 48% except when I was living in Southern California and it dropped to 35%.  I guess the air in LA is really bad ?.

I found this article very interesting on this topic.

http://pulmonaryfibrosismd.com/stages-of-idiopathic-pulmonary-fibrosis/

I was diagnosed in 2007, went on oxygen 24/7 in 2012 at 2 lpm, just went up to 6 lpm this January. For me IPF has been an annoyance. I worked bi-coastal, flying back and forth with my POC until I retired in 2014. I have declined some now. I’m on 6 lpm now, which meant I had to go back on tanks when I leave the house. And use a wheelchair. It’s been an adjustment.

The bottom line is each person’s progression seems to be unique. I know that I’ve really beaten the odds living with this for so long.  But there are things I wanted to do that I waited for retirement. Now I can’t do those things.

If you have dreams, don’t let this disorder get in your way. Do it now while you still can. Have no regrets.

[Terry Moriarty]

I don’t have any pets. I’d love to have one, but I don’t think, in my current state, I can take care of one.

I think my hoses are 50′, but I’m not sure. The cannula is 7′.

I can’t remember how I got the hoses. Every time I got a concentrator delivered to my hotel room ( I traveled a lot), they always left a long hose. Call your oxygen provider. However, mine would probably say no.

[Terry Moriarty]

Hi Jay,

I don’t know what it does, but when I went into the hospital my blood oxygen level was 73. When I left 3 weeks later, I was at 90+ with no supplemental oxygen. I was on 50 mg of prednisone. I could barely take a breath when I went in. I was breathing fine when I left the hospital. so, it made me able to breathe.

[Terry Moriarty]

Thanks, Dr. Hall (Andy),

I was just thinking about your comment about the differences between HP and IPF that may impact the success of laser therapy.  I’ve read articles about a significant portion of people being diagnosed with IPF who really had HP.  My pulmonologist says he’s only had one, but has sent several over to UCSF for reevaluation. I know that the drug treatment is different too. So I can see why you want to keep your study focused on IPF.

But, I’m still going to give it a try. Won’t be able to do additional CT scans, after the one I’m having next week, or PFTs because I just had the annual ones done. But I can do my own 6 minute walk and track my blood oxygen levels to see if there are any improvements.

Fingers crossed.

[Terry Moriarty]

Just a thought. I have HP too and I read somewhere that one of the differences between IPF and HP is the location of the ground glass opacity. I know that mine is in the lower lobes. Might that impact how the treatment is performed? My appointment is in 2 weeks and I’ll ask Dr. McGuinness about that. His office said that he has experience treating lung disorders, so I’m hopeful.  What do you think, Dr. Hall.

[Terry Moriarty]

Have an appointment for 2/25.  The person who answered the phone knew exactly what I was talking about, so that’s a good sign. Dr. Hall, is this a specific set of treatments? or more of an on-going commitment? They are kind of expensive.  Thanks

[Terry Moriarty]

Thanks so much for the referral.

[Terry Moriarty]

Thanks for the quick response, Dr. Hall.  I’ll start looking for someone near Sacramento.  Will be watching this space to see how others are doing.

[Terry Moriarty]

Dr. Hall,

Is your research study strictly for people with IPF?  I have Chronic Hypersensitivity Pneumonitis. So I have fibrosis.  I’m on 6 lpm oxygen 24/7.  On my last PFT, FVC was 39% and DLCO of 19%. I have no other symptoms except the need for oxygen.  Am I a potential candidate for your study?

Thanks

[Terry Moriarty]

Hi Christine,

You Go Girl!!!!!

In 2012 my doctor said I had about 2 years if I didn’t get a lung transplant.  I didn’t qualify for a transplant primarily because I’m obese and didn’t qualify for weight loss surgery because I have an esophagus problem.  That problem also contributed to the lung issues.  They said that if it wasn’t fixed, the PF would probably return in the new lungs.  What’s the chance of getting two incurable disorders <g>?

Guess what??!?!  I’m still here.  Two of my grandkids were born after I was told I was heading towards terminal. I continued a successful career that not many other women had at my age.  I went on an Alaska cruise, with oxygen.  I’ve driven myself up to Seattle to see my son and other grandaughter.  So I did a lot for a terminally ill person.

But now it has all caught up with me (see my other response to Charlene).  But knowing how much worse others have it, I’m trying not to complain. Much.

[Terry Moriarty]

Hi Charlene,

To your questions:

“Did you ever find out the cause of HP for you? Curious to hear more about this, as I wasn’t familiar with this type of ILD but sad to learn it is what progressed into the fibrosis for you.”

When I was diagnosed, there wasn’t much information about HP.  I’m really surprised at how much is now known about it.  Originally it was Farmers Lung, Bird Lovers Lung and Spa Lung.  The re-occurring theme is moisture or allergens.  My VATS showed an unknown organic agent.  Now there are probably 40-50 known triggers.  I remember watching an episode of Who Wants to Be a Millionaire where the question was about a clarinet player who got it from the reed that he didn’t change or clean.  Who would expect to see the words Hypersensitivity Pneumonitis on Millionaire?  According to the news, a teenage girl got it from vaping.  Now there are blood tests that attempt to determine the trigger.  I was negative for all of them.  But, I think it good that it can be diagnosed sometimes without a lung biopsy.

We are pretty sure that the HVAC system at my office played some role.  Turns out that about 20 other people started having respiratory problems after I came back to the US.  When my team switched places with another team, that new team started getting sick. Now HP is considered to be an occupational disease.

There is a facebook group for people with HP.  They are putting together a website now specifically to get information about HP out there.

“It is remarkable, though I am glad, that your FVC has remained at 40% over so many years. Does it fluctuate when you’re ill at all, or during extreme temperature fluctuations?”

Amazingly, I have not been sick with a cold of flu since being diagnosed.  Considering that I had chronic bronchitis as a kid, that I haven’t been sick is pretty incredible. My FVC did drop into the 30s when I was living in LA.  Went back up to the 40s when I moved to Northern California.  Guess the air quality is really bad in LA.

“Would any close friends travel with you to your timeshare(s) or are you unable to fly?”

I used to fly between LA and DC all the time, with my POC.  But now that I’m on oxygen tanks again, I can’t fly.  It would be too tiring anyway.  I went to lunch and then did some shopping last Monday.  I’ve pretty much been sleeping since then.  I used to be able to get around on my own with the my POC, but now I’ve exceeded its maximum pulse rate.  Before, I would take the POC out of the backpack I carried it in on my walker, put the POC in my car, take off the oxygen, walk to the back of my car to put the walker in (without any oxygen on), put my walker into the car, walk back to the front of my car and put the oxygen back on. Then reverse the process once I got to wherever I was headed.   Can’t be off the oxygen for that long now and can’t walk around using the walker.  Now I’m using a wheelchair if I have to go anywhere.  That means I have to use a driver.  At $50 a trip, I can’t afford going out too much anymore.

But, as I said before, I always knew this day would come.  I’m pretty happy reading books, watching TV and pursuing my fiber arts (spinning yarn, knitting or crocheting, needlepoint).  There are so many people who have it worse than I do.

[Terry Moriarty]

As I understand it, the CPAP forces air into your lungs.  Depending on how many apnea episodes you have a night, the CPAP is set to a higher “pressure”.  Mine is pretty low, at 6.  At night, I attach my oxygen to the CPAP machine.  I don’t bother lowering the lpms, but I undersand that some people do.

I find with the CPAP on and laying down, I can take deeper breaths. I can feel my diaphragm expanding and contracting, which doesn’t happen with my normal, shallower breaths. If I get SOB when I doing my normal activities, I find it very hard to do pursed lip breathing to aid in recovery.  It’s more like taking big gulps of breath.  So, the breaths I take when wearing my CPAP are deeper and more refreshing. That’s the best way I can describe it.  Hope it makes some sense.