[Terry Moriarty]

Hi Linda,

It hard having a condition that doesn’t have the ability to chart its progression path.  I don’t think that any two people’s journey is the same. I’m 73 this week.

I’ve been on oxygen for 10 years and high flow oxygen for the last 9 months. I’m on 12 lpm resting and 15 lpm moving around. I do not have IPF, but do have PF from Hypersensitivity Pneumonitis that is similar to IPF.

At home, I use 2 10 lpm home concentrators hooked together. That’s been a challenge because I need two humidifier bottles and they don’t seem to like working together. But I need them to keep my nose from drying out. I use a 50 ft and 25 ft tubing held together by a swivil connector.  That allows me to move around my house with a walker. The swivil connector helps keep the tubing from twisting.

At this point, I’m pretty much housebound, but I’m definitely not bedridden.  Mostly now, when I do go out, it’s for doctor appointments. I probably could go out to restaurants, but can’t go shopping for anything because I get so short of breath so fast. I used to drive on my own, but have stopped that since going on tanks. I’m not confident that it won’t run out unexpectedly. This has been the biggest change in my life style.

The hard part of being on high flow oxygen is the need to use tanks instead of my portable oxygen concentrator (POC) when I do go out because I’ve exceeded its capabilities. I have to determine how long each trip will take to ensure I have  enough tanks to be swapped in as needed. I use a power wheel chair that can carry 1 D tank and my companion brings another tank in a separate D tank cart.

Hope this information is useful to you. You may want to talk to your pulmonologist about hospice support as it is meant for families who need additional support for caregivers like yourself.

[Terry Moriarty]

I gained over 100 lbs when on prednisone. I was already obese. I’ve lost 125 lbs on a medically monitored very low calorie diet (VLCD). My BMI is now under 30. I could probably qualify for a transplant, if I wanted one.  VLCD is a tough commitment, but effective, if you can stick with it.

[Terry Moriarty]

@renehakkenberg

I’ve had all the heart tests. Last month wore a heart monitor. All is fine except for aFib which I’ve had for years.  I’m setting up my appointments for my 6 month checkups now which include a CT scan and PFT.

I don’t live in the beautiful parts of Northern California.  I’m near Sacramento in the agricultural central valley between the beach and the mountains. What’s nice though is I can easily drive to the beach or the snow (when we have some) whenever I want. I’ve only been to 1 Caribbean island, Bermuda. I have to say I prefer Hawaii or Australia’s Great Barrier Reef. But I don’t think where I stayed in Bermuda was really representative of the Caribbean islands.

Yes, let’s stay in touch.

[Terry Moriarty]

Rene, so good to hear from another low DLCO person. I have Hypersensitivity Pneumonitis which is triggered by some allergent. If you can get away from the trigger, then it can go away permanently. So long as there is no fibrosis. From 2007 to 2011, that’s what happened to me. Then something triggered it again and I progressed to PF.

I’ve been on and off meds since 2007. Prednisone until 2010. Nothing until 2011, then back on prednisone. Tapered off to nothing in 2014. Put on Imuran in 2015, not because I had any symptoms but because my new pulmonologist thought I should be on something.  Now I have a different pulmonologist (I moved around a lot) and he changed me to Cellcept last September because I was getting worse for no reason. It’s made no difference as far as I can tell.

What had made a difference was losing nearly 200 lbs. All my PFT results improved except for DLCO.

Something I’ve learned about PFTs because I traveled around so much. I lived bi-coastal for 15 years and noticed my numbers dropped whenever I was in LA. Would always go back up when test was done in DC where I worked. Now I live in northern California after living 2 years continuously in LA. Results went back up and stayed up over the last 6 years. Except DLCO, which dropped to 19% after an exacerbation in 2018 and has stayed there while other results have rebounded. I think the difference in results can be attributed to LA’s smog. You may not see it anymore, but it’s still there.

[Terry Moriarty]

I’ve found this discussion very interesting. I was diagnosed with an ILD (not IPF) in 2007. In 2011, I progressed to PF. My PFT results have always been very low, especially DLCO. My average until 2018 was around 35%. Then it dropped to 19%.  At my last PFT (9/20), I made it 21% (woo! woo!).

DLCO is one test that I haven’t gotten any of my pulmonologists to explain. I know it has to do with oxygen exchange between the wall of the lungs and blood stream, but what does a low result mean?  Everything on the intrrnet is doom and gloom. Like why am I still alive? At the last interpretation, I was told that my body is just adjusting to diminished capacity.

I was told I have severe fibrosis, but really no symptoms except shortness of breathe. During the day, no coughing, some fatigue. Been on oxygen 24/7 since 2011.

So what’s the impact of low DLCO?

[Terry Moriarty]

Now that my city has opened up, I thought I’d check my POC vendor’s COVID-19 guidance. I use an Inogen One G2. Their FAQs page says it does NOT filter out the virus droplets, but didn’t say not to use it. Gives instructions about sanitizing it, but no usage precautions. So I called and the CSR checked their FAQs and agreed that their POCs shouldn’t be used in crowded, public places.

A POC sucks in air, converts it to oxygen and delivers it to your lungs directly. If COVID-19 is in the air around you, it does no good to have a mask on because the oxygen you receive doesn’t come from breathing through your mouth or nose.

I know we wear masks primarily to protect other people if we have the virus and don’t realize it. But an effective mask does provide the wearer some increased protection.

So, if i’m going to be in a situation where I can’t practice social distancing, I’m going to drag out my tanks and wear my mask.

Stay safe.

 

[Terry Moriarty]

I had one funny experience when there around words. Probably have to be from US to really experience. I was at my favorite pub for fish and chips. Something I did atleast weekly. This time, there was a group of 6 guys celebrating at a nearby table. One of them called out to me “Hey, unk., Hey, unk”. I ignored him. “Hey, unk” I heard again. Finally, he came over and carefully enunciated “Hey, yank. You are a yank, aren’t you?” “unk” was “yank”?  My initial reaction was “no, I’m from California”. For me, yank is short for yankee and that’s what Southerners called Northeners. As a Californian, I was niether.  Also, the term in usually meant for a man. I’d never heard a woman called Yank. Then remembered where I was, Australia. Yank means anyone from the US.

I stuttered and said “oh yes. I am a Yank.” We had a great laugh and he asked if I’d take a picture of their group. I’m sure they just thought I was a crazy unk.

[Terry Moriarty]

I lived in Australia for 18 months. I really miss it. I didn’t realize that, like the US, there are different accents across the various regions of Australia. Some, I really couldn’t understand. It was really funny at times as I tried to figure out what someone was telling me because we couldn’t understand each other’s accents. Had the same experience in Ireland, England and some parts of Kentucky and Georgia. And we were all speaking English.

I understand the frustration with weight. I’ve lost nearly 200 lbs., about 100 in the last 18 months. That’s an average of 5 lbs a month. I broke last week and gained 5 lbs in 3 days. It’s taken another week to get back on track and re-losing that 5 lbs. I just crave real food. I’m lucky I hate to cook and find it fairly easy to stick with my daily shakes and puddings.

I try to keep busy with needlepoint, knitting and making DIY face masks during the isolation. Not very good at the masks. I’m too much of a perfectionist to give these to anyone other than my family. They don’t care about the little flaws, but I do.

Continue to stay well.

[Terry Moriarty]

Last year, the people went after the California poppies that grow wild on the side of some of the freeways. They actually shut down some of the freeways trying to take pictures. I’ve lived in California all my life and don’t remeber anything like that before. We humans have such a herd mentality.

I have a small clump of daffodils that come up every year. Some showed up unexpectedly in my front yard this year, after living here for 5 years. I was like “why have you been hiding for so long?” Your property sounds wonderful.

I live in the suburbs but still have some fairly large plots of open land. Every year, a herd of goats show up to do weed control. Their owners move them from one plot to another on a predetermine schedule. There is a website where you can follow their progression through the city. The kids love it.

[Terry Moriarty]

I was too late. They closed Yosemite completely this morning. Most of our other national parks have closed all the facilities but left the roads and trails open. But completely shutdown Yosemite. Oh well. I can also drive to the beach. Being Northern California, there are a lot of more secluded beaches where there won’t be a lot, if any people. Unlike Southern California where the beaches are more part of the suburban sprawl. Easier to get to, so more people.

Thanks for the ideas about how to gas up the car safely.

[Terry Moriarty]

I live in a fairly small North-eastern California county of 385,000. About half of that population resides in the city where I live. The first person to die in the US of COVID-19 was in a hospital here. So the virus is really, real here. However, the county has only 26 cases (up from 19 last week) and the 1 death.

With these numbers, I can understand why some people are wondering if the “stay in place” order is really needed.  We’re not experiencing surging increase in cases, but there are still testing issues. Even if more cases were found, the death rate would be even lower and the order would be even harder to take seriously.

This virus is hitting heavily populated cities where distancing yourself from other people is almost impossible. Without this order, there is nothing preventing an infected person from travelling into my city, wandering through a crowded store and, wham, infecting  maybe 10 more people, who will infect their friends and family, who will infect some of their friends and family and so forth until my city and county reflects the hot zone cities.

I think that the smaller, inland US states that haven’t taken the warnings seriously are now experiencing this phenomenon. Like Wyoming, our smallest state, population-wise. The county where I live is 2/3 the size of Wyoming. My city is 1/3 the size of Wyoming. My city is about 2.5 times larger than the largest city in Wyoming. Today, Wyoming has 30 cases. Last week, they were at 11 cases. Yet, during the same time period, my county’s growth has remained flat. As I expected, most of the Wyoming cases are located in its largest.

I’ve been on self-imposed isolation (actually sons-imposed) for 2 weeks. I went out once to a drive-thru pharmacy, so I don’t think that counts as breaking isolation. Tomorrow, I’m going to a bi-weekly doctor appointment. I’m going to risk going to the grocery store for just a couple of items. The isolation isn’t hard on me because I’m a self-proclaimed hermit and introvert. But, I’m going crazy not because I need to go out, but because someone took control of me and said I can’t go out. In California, it’s ok to walk around the neighborhood. I can drive around. I thought of driving down to Yosemite. What a chance to see it with almost no crowds. But, my son said I couldn’t because I’d have to touch things like the gas pump handle. Still deciding whether it’s worth the risk.  In the meantime, I’m reading/listening to a lot of books, bingeing BritBox mysteries, doing needlepoint, learning how to use my knitting machine and trying to make DIY facemasks to be donated to local hospitals. Other than the last task, pretty much life as usual.

The toughest has been my son cancelling his family’s planned visit from Washington state. He lives about 40 miles from their virus hotspot. It took about 2 weeks of discussions between my two sons and myself from complete denial (like our federal government) to we could go to restaurants where we could distance ourselves from the staff and other patrons to no way. Finally decided when Disneyland and sports events closed down. My sons decided if these corporations were willing to lose this much income, the virus pandemic had to be real. My Washington-based said he couldn’t live with himself if he got the virus while travelling through an airport, passed it on to me and I got it and died. I cried over my little sacrifice. I’ve been cleared to fly using 2lpm oxygen, so when this is over, I’ll go see him.

 

[Terry Moriarty]

This just really became real for me. The first California death was at a hospital in my city. I cancelled my mani/pedi tomorrow, but have my annual CT scan scheduled for Monday (at a different hospital). My RN daughter-in-law says to cancel it. Have a message into my pulmonary doctor for advice. It’s so hard to get appointments here. Finally, my son and family from Washington are coming for a vacation on Saturday. I feel surrounded. Sigh.

And the rumors are flying. A kid in middle school here told his class that his mother had it and had to stay home. Messages were sent to parents because this was in the same city where the deceased patient lived. Turns out the kid thought his false claim would make him popular.

I’m lucky I’m an introvert and don’t mind avoiding people.

[Terry Moriarty]

I’ve been monitoring very closely since I live 60 miles from Travis Airforce Base and UC Davis Medical Center, where they transferred the first community-transmitted patient, is only 20 miles away. But no cases reported here.

I’m more concerned about my son who lives near the outbreaks in Washington. I’m retired and can stay in if I need to, but most people can’t self-quaranteen.

There was another post about a person on oxygen being bullied while out shopping in the UK. I’d never thought that others would think of us as a threat.

[Terry Moriarty]

@jgenesio

I take that nasal spray for a runny nose caused by my lung condition. I have Hypersensitivity Pneumonitis, not IPF. But once I progressed to fibrosis, there’s not much difference in dealing with the symptoms or side effects. At this point, drug treatment for HP is different from IPF. I’ve gone through all the symptoms and side effects of ILDs in the 13 years I’ve been dealing with HP. 2nd opinions are always good. Just make sure your pulmonologist actually knows something about ILDs. There are so many variations, it’s not unknown for misdiagnosises to occur.

[Terry Moriarty]

Forget PC. I think we should print up Tshirts with these slogans. With an added sentence of Donate to the Pulmonary Fibrosis Foundation.

[Terry Moriarty]

Is it possible to post the transcripts of the podcasts? I don’t absorb the details from listening to an article being read. I need to read and possibly reread it several times for the information to “sink in”.  Thanks.

[Terry Moriarty]

Everyone should watch the movie “That Sugar Movie” on Amazon. Watching that will reinforce the desire to eliminate processed sugar.

I’ll share my story. I was diagnosed with Hypersensitivity Pneumonitis in 2007 and went chronic (fibrosis) in 2011 and went on oxygen. Since I lived in California and worked in Washington DC, I got a POC for my frequent cross country flights.  I had been obese most of my adult life, but thanks to prednisone, my weight bloomed to 385.

I had an exacerbation in 1/2018. My oxygen needs went from 4lpm to 8. I had to get a noisy high flow concentrator. I couldn’t use my POC anymore and had to use tanks with highflow cannulas. If I went out, I had to take extra tanks. Since I couldn’t handle them on my own, I ended up using a wheel chair to carry enough tanks. I started using a wheel chair car service. A real downer on my life. The delivery people from Doordash and Instacart were my best friends. Obviously, flying was out of the question.

In 10/18, my PC doc suggested a diet program called very low calorie diet. Around 600 calories per day. I had already lost 85 lbs, but had plateaued. I went on the medically monitored program of shakes, puddings and soups. I’ve lost 100 lbs. and have another 50 lbs to goal.

I had my appointment with my pulmonologist yesterday. Did a 6 minute walk and passed at 2 lpm.<span style=”mso-spacerun: yes;”>  </span>My PFT results are back where they were before the exacerbation (FVC 43%, FEV1 50%, TLC 46%, DLCO 19%). Pretty much where they’ve been since 2011.Doctor says the improvements are due to my weight loss and wanted to know more about the diet clinic saying he had possible referrals. I’m also diabetic and have completely stopped using one type of insulin and almost off the other insulin. All due to weight loss.

Now the downside of this program. It’s really heavy on the artificial sweetners. Their “behavior” counseling program really does nothing to address sugar addiction. Focuses more on calorie management and exercise. So I am concerned that I’ll have problems when food is reintroduced.

But I’ve seen how well my condition has improved since losing weight, I’m highly motivated to conquering processed sugar.

[Terry Moriarty]

There is a small,soft plastic, I guess, ring that goes on the thumb. I’ve read that the thumb is the best place to measure oxygen levels and may explain why there are occasionally difference from finger oxymeters. It has a flexible cord that connects to the fitbit-like device on your wrist. I wear it on my left hand. Don’t notice at all. The big flaw is that you can’t see the read-out in sunlight. I think that’s true for the fitbit too. That’s why I depend on the vibrator to let me know when oxygen level drops.

[Terry Moriarty]

I’ve been wearing the O2 Vibe O2 meter for about 4 months. It does O2 levels, heart rate and steps. Since this is on your wrist, it’s counting hand movements. Pretty much like all fitbits. Haven’t tried carrying in my pocket to see if it gets more accurate.

O2 level accuracy is pretty good. Have compared it with finger meter and they are usually the same. But, it has varied, showing higher than finger meter on high activity. It has a vibrator if the level goes lower than what you set it too. This is sufficient for me. All I’m looking for is a warning if way off, so I can up my oxygen rate.

It has an app so you can upload and see a graph over a max of 10 hours. No way to see trends over days, at least that are meaningful for me.

Band is 9.5 ” with about a 1″ overlap, so might just fit your needs.

Got it from Amazon.

[Terry Moriarty]

Hi Marsha,

I got my Inogen 1 G 2 in 2012.  It was my life saver. I worked bi-coastal and racked up alot of air miles with that POC. Unfortunately, I didn’t understand that lpms and pulse rates weren’t the same thing. My lpm needs increased and I was still using the POC. That contributed to the exacerbation I suffered in early 2018. At that time, my lpms went up to 8 for activity. Had to go on tanks.

Started the diet in October, 2018 and my oxygen needs are back down to around 5 for activity. I did a 6 minute walk using the POC and it passed at 6 pulse rate (barely). I use it when driving and for short walks that aren’t far from the car. I carry tanks for backup. I wear a Vibe O2 to minitor my oxygen levels when out, so I can switch to the tank if it gets to low. Complicated, but atleast I’m independant again.

[Terry Moriarty]

My DLCO has been in the 25 – 35% since I went on oxygen in 2012. In early 2018, it dropped to 19%. I’ve lost 40 lbs. since then, in addition to the 100 lbs already lost since  going off prednisone in 2014. FVC and TLC improved, but DLCO remained low. I know what DLCO measures (oxygen carbon dioxide diffusion), but I haven’t been able to find out what it means. It’s really low, but so what?

With the most recent weight loss, I’ve improved alot since that flareup in early 2018. But not the DLCO. I have Hypersensitivity Pnuemonitis, not IPF.

[Terry Moriarty]

Has anyone using laser therapy seen improvement in their PFT DLCO percentage?

I’ve been waiting on making the decision on laser therapy because I started a medically supervised weightloss program in October. I wanted to see if there were improvements from that before starting something else. I’ve lost 50 lbs. so far and have seen lots of improvements. Lower lpms, walking farther, gone from wheelchair back to walker. FVC, FEV1 and TLC improved. But DLCO remained unchanged at 19%.

Thus my interest in knowing about laser therapy’s impact on DLCO.
Thanks.

[Terry Moriarty]

I’ve done both. From what you’ve described, in-home PT would probably be the better starting point. Getting into the rehab facility was difficult for me too and I used  a walker. I had to stop going because of low blood pressure.  Now, I have to use a power wheelchair when out of the house,  as it carries my oxygen tank. I can lower the oxygen lpms when in the chair, thus getting more time from the tank.

Once he gets to the point he can get into rehab facility, I think he would find it beneficial. I found the equipment to be fairly easy to use and I felt a bit better after each session.

[Terry Moriarty]

DLCO = carbon monoxide diffusing capacity. It is a measure of oxygen/ carbon monoxide exchange through the lung walls. My score of 19% is considered to be extremely low.

LPMs = liters per minutes for oxygen. I’ve been on oxygen for 7 years. My prescription is now 6 lpms, however, at my last 6 minute walk I used my portable oxygen concentrator at 6 pulses per minute or about 3.6 lpms. That’s an excellent improvement.

The diet is a very low calorie ketogenic diet. under 1000 calories/day. must be medically monitored. I was already obese and had gained over 100 lbs when on prednisone from 2011 to 2014. I managed to lose 70 lbs on my own. Took 4 years. Then I plateaued. Started this diet last October and have lost 50 lbs so far. This is working for me and fairly easy to keep up with.

I was showing all the signs of endstage ILD, including difficulty eating. It could take me 2 hours to eat a chicken caesar salad. I was totally out of breathe. When my FVC dropped from 45% to 30% and DLCO from 25% to 19%, I knew I had to do something. All my doctors said lose weight.  My FVC is back up to 40% and I’m walking more. So I’m sticking with this program.