[Jan Riche]

I would definitely take one, my Mom had a foreign object in her body for years, a pacemaker, not quite the same but close. As for biodegradable, my whole body is biodegrade. If they could manufacture them maybe they wouldn’t have more likely to have said yes to my application. Besides, I am an unbearable optimist.
Jan

[Jan Riche]

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

[Jan Riche]

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

[Jan Riche]

Meral ( @meraltemel ), I too had such serious side effects that I decided that my quality of life was more important than slowing down the progression of the disease. I stopped taking it. My doctor changed me to Esbriet. I don’t have any side effects from this medication. It is supposed to do the same thing.

I hope that is a possibility for you. Maybe your Mom should check this with her doctor. Unfortunately my progression may be slower but it is noticeable. I don’t know if the Ofev would have worked better, but I couldn’t live that way.

We did try a lower dose but the side effects did not change.

I hope your Mom finds a solution. Good luck.

Jan

[Jan Riche]

Lorena,
Thank you for your reply. It comforts me to know I will not be gasping for breath at the end. Breatlesssness (Lot of s’s there) is the thing I fear the most. If I can avoid it in any way I will do whatever I need to do. It takes me forever to do some things. I move at a snail’s pace. I used to do 10 minute showers now it’s an hour.

Steve suggested serrapeptase. Where do I get this. Is it prescription or over the counter?

[Jan Riche]

I forgot to add that I conquered the flash briefings. Listened to my first today.

[Jan Riche]

Hi Charlene,
I too hope the medical developments are in time to help you. I have grown fond of you through this forum. I appreciate your honesty and openness. Those are truly wonderful traits.

As for your question about clinical trials, I am hoping to qualify for a clinical trial called Galapagos. I am hoping that the name which reminds me of Galapagos turtles does not indicate the speed of the trials. I have two reasons to participate, one is that I hope it will help me and the other is I view my participation as a way to help other IPF patients. The gathering of information about this disease, I believe, is vital to finding something to slow it down and to finding a cure.

[Jan Riche]

Hi Charlene,
Interesting topic. I had to change from Ofev to Esbriet about a year ago. The diarrhea got so bad it was unendurable. What quality of life I had was totally gone. I couldn’t leave home and couldn’t maintain my hygiene without difficulty. That was the determining factor. That experience left me apprehensive about Esbriet, fearful that the side effects would prohibit me from taking it. So far so good. The only possible side effect I have is a bad taste that makes all my food taste unappealing. I’m not sure if it’s the Esbriet or the advance of my IPF. I also have the irrational idea that Ofev worked better. Since the change my IPF has gained momentum.

On another topic, I don’t understand how those news flashes are supposed to work. I am going to go over your instructions again to see if I can understand them. Wish me luck.

[Jan Riche]

I am not sure if I am on the right track but I believe I am in the end times. I did not get approved for a lung transplant so there is no option for me. My need for oxygen is going up quickly. Just being still requires 8/9 liters, if I need to get up I have to use a separate source of O2 at 6 liters which puts me at 14 liters. Just to sit up in bed my O2 will drop to low 80’s. I spend most of my time in bed or on the sofa. I am on Esbriet, don’t know for sure if it is doing any good, but just in case.

I have no other health issues so I am dying strictly from IPF. Being breathless is the most distressing symptom I have. I spend my days on my iPad and reading. I watch tv in the evenings. Mentally and emotionally I am good. There is a lot of serenity in letting go of things. I seem to get more Buddhist as time goes on.

I have gotten very aware of my close environment, it’s become important that my bedroom french doors are open and that the room and patio are visually pleasing. I don’t have much appetite so if I do want something we do not question if it’s healthy or not.

We are considering hospice care. The only thing holding me back is my pulmonologists upcoming clinical trial which is showing great promise for slowing IPF down. There is a question of being approved if I am under hospice. But I am sincerely wondering if I will even survive until the trial starts.

Not sure if this is what you are looking for, but it is what I am experiencing.
One good thing I am grateful for is
there is no pain to contend with.

I am 77 years old and I think that makes a difference.

This is the only forum that I can be this honest on. Thank you for being here especially Charlene, it must take something to keep this site going.

[Jan Riche]

Hi,
Four years ago I was diagnosed as prediabetic. My doctor suggested a class that is a cooperative effort between the YMCA and the CDC (Center For Disease Control). They put me on a diet that simply had me restricting fat grams. There was an app that helped me count them. I found that my eating very naturally included healthy food, as the only foods that contain very little fat are fruits and vegetables. A side affect of lowering my fat consumption was a loss of cravings. I found that to be a real help in staying on track. I was about thirty pounds overweight and lost the thirty pounds in about four months. My energy level increased and I looked much better.

However shortly after I was diagnosed with IPF. Sorry to say, I took that as permission to abandon my regime. Gained about 15 pounds back and found that my cravings for fat and sugar returned. I was surprised to find out that my cravings were for fat. I had thought I craved sugar but if it is not combined with fat I don’t crave it. Hard candies are safe in my presence but fudge is definitely not.

As my IPF has progressed I find my appetite has declined drastically. I think I am in the terminal stages, turning over in bed puts my sats in the mid eighties when I am on eight liters O2. Of course my pulmonologist says we don’t know that, as the condition can speed up or slow down and come to a plateau. Strangely enough I am pretty content. Whoa, way off topic here. Don’t know where that came from. Gonna send it anyway.

Hope my experience with a fat controlled diet helps.

[Jan Riche]

Hi Army Pete,
Love the Army, was a WAC in the Vietnam era, but did not serve in Vietnam Nam or Japan where a lot of support served. I believe the Army made me grow up. Certainly gave me an education through the GI bill

As to OFEV, I had the same problem but changed to Esbriet and no side effects. No way to know if it’s slowing down the IPF but worth the chance. Lately food tastes off, I don’t know if it is the Esbriet, the pharmacist says maybe. I am not willing to go off it to see. I anyone has taste changes with Esbriet, I would appreciate hearing about them.
Jan R

[Jan Riche]

Charlene,
I am truly sorry to hear that it’s still stressful for you. It must be difficult to see her on a regular basis. My heart goes out to you and I hope additional time will soften the blow.
Jan R

[Jan Riche]

Hi Charlene, I know how it feels to be deeply hurt by someone close. In my 77 years it has happened. Sometimes my relationship has survived and at other times not so much. For me,it would be important to know if the person was just frustrated or meant to hurt me. I don’t know exactly how I would know and I don’t know if I have assessed it right in the past, but I do know that once I forgave them and calmed down I kind of knew if the relationship was going to be the same or not. My best friend of 44 years and I once had a conversation in which we decided that the strength of our relationship would depend on our ability to accept and forgive each other as every one who gets close enough will hurt you some way. Our friendship is strange as he is male and of course I am a woman. Even my husband treats him as if he’s my brother. We have stood by each other through almost every thing. His wife was my matron of honor when I got married. I do believe he would never hurt me intentionally but there have been times when it happened. I think all my close people have hurt my feelings at sometime or another as I have surely hurt theirs but mutual forgiveness has mended them. I sincerely hope that you do gets over this and I appreciate how much it hurts when it’s fresh. I would very much like to hear about how it gets resolved and the outcome. Friends are the spice in my life.
Jan R.

[Jan Riche]

Hi,

This is my second attempt to use this forum. Hope it works. Oxygen suppliers have been one of the most trying thing about my IPF. Luckily I have had really good advocates that worked for my pulmonologists. One from Jewish National in Denver worked to get me set up with Enogen to rent a home concentrator and POC. I started out with overnight and advanced to portable needs fairly fast. I started O2 in 2014 at 3 liters continuous at night then advanced to adding 3 liters pulse for mobility later that year.

Enogen provided me with their next smallest POC (Medicare did not approve the new smaller one at that time). They also provided a home concentrator. I really liked the convenience of both machines. I could carry the POC on a strap easily and the home concentrator fit into overhead sized luggage although I checked it to fly it made it easy to handle.  Since it was medical it shipped for free. The POC came with two batteries, one 6 hour and one 10 hour capacity. Enough to get me anywhere I was flying.

Medicare paid part of the rent and my supplemental insurance covered the rest.  When my O2 demands increased the Enogen equipment was not adequate so I transferred to a local company and changed to bottle O2. I miss the Enogen, it was so convenient. I have been on the bottles for a few months now.

Getting the Enogen equipment was not straightforward. They have two divisions and I do not believe they communicate with each other. One is sales and they will tell you they don’t rent but fail to say the other division does.  If you comb through the web site there is a number to call. I was lucky enough to have a nurse in my pulmonologists office who had a direct contact and she put me in touch with them.

All my service was done through FedEx but it worked fine. Every problem I had was addressed quickly and efficiently. I highly recommend them.

Medicare doesn’t buy them but does pay the charges for rentals.  As I had supplemental insurance I didn’t pay attention to how much they paid.  However, for me I found it much less than buying.  Hope this helps.

Now another subject, I am very interested in the liquid O2 option but cannot find a way to access it. Does anyone know how to do this in the States. I would be grateful for any info.

Jan R

[Jan Riche]

Hi Charlene,

My IPF has accelerated over the past six months, my O2 has gone from 6 liters to 7-9 depending on activity. Even at 9 I have to go slowly with rests to let my sats recover. Showering has become an issue. I’m in a wheelchair because walking drops my O2 sats to low 70’s almost immediately.

To shower I get everything set up, shampoo, soap , bathrobe (I use a bathrobe instead of a towel). Let my sats get up to upper 90’s, transfer from wheelchair to bench , wait for O2 to recover, shower, stand, get robe on, back to wheelchair.  What makes this possible is a handheld shower head, a walk-in shower, and patience.  I forgot, grab bars help me feel safe. We had the shower remodeled about 2 years ago, before I really needed it.  Lately I have made sure that my husband is here.  Until two weeks ago l felt secure enough to shower when he was gone, now,not so much.

So,

1.  Set up

2. Bathrobe

3.  Handheld shower head

4.  Grab-bars

5.  Time and patience

And, ‘Viola!’ (as we say in our t.  house), I am clean.

I always feel better after.

 

[Jan Riche]

Hi Bill,

I was sorry to hear about your struggles, makes my journey sound like a walk in the park. I am 76 (77 next month) and my O2 requirement has just gone to 7-9 liters depending, so I don’t do much that requires moving, which means that I don’t cook any more. I miss that a lot but didn’t have to sell my pots and pans.

Luckily I love reading and play a lot of word games on my iPad. Most of the time I am not thinking about my IPF. Living in Arizona blesses me with a lot of good weather. My bedroom french doors open onto my patio and my husband brings me coffee and breakfast and opens them. The feeling of being outside starts my day well.

But like you, I am not able to participate in my former life. I missed church and my church group for the last two weeks. I may be at the point where I’m going to have to give them up. I believe my IPF is progressing fairly fast now.  I am also wondering if I should give up my Esbriet, does another month living with these deficits make it worthwhile? Just a thought.

I am not afraid of dying, just the process to get there.  I really appreciated Megan’s post.  It was the first description I had read about the process. It gives me hope that it might not be too hard. I read a book about brain studies of deep meditation and it talks about the brain activity slowing down leading to an experience where the meditator feels a growing oneness with the universe. I’ve been hoping it could be like that. Sounds peaceful.

Jan R

[Jan Riche]

Hi Charlene, I’m sorry you had this experience, I know how much I need to forget for awhile that I have this condition. But I also know how difficult I find it to be in the company of a negative attitude, I don’t seem to care so much about the content of the conversation as I do the attitude.  My friends and I can talk about this disease and it’s consequences with humor and laughter, while others seem to dwell on the “woe is me.”  I consider staying away from them as good mental health self care.  I am in my 70’s and can be selfish about my time.  My goal is to enjoy each day and unless there’s a good reason to be around a negative attitude I see no reason why I should.  Boy, does that sound harsh or what?

I sincerely hope you don’t have to deal with that again.

Jan R

[Jan Riche]

Hi Mark,

My esophageal motility disorder is a slow peristalsis, my esophagus is slow but not blocked.  The major thing I notice is how long it takes to eat.  The worst part of eating is that my food never tastes right, I think that is due to my meds. I keep thinking with a reduced intake I should lose weight but my lack of exercise seems to keep the weight on.  However, since I am not over weight, I think that is leftover vanity.

I had to go online to figure out what achalasia is, I hope I’ve got it right.

[Jan Riche]

I was diagnosed with esophageal motility disorder last year and was eliminated as a candidate for lung transplant. My age may have been a contributing factor. I was 76 years old.  Everything else was good, no other physical problems.

I was depressed for 10 days after they told me, but I have decided that everyone dies from something and this is mine. I am grateful that I am good at making a life with books and phone calls from lifetime friends. I find that my priorities have changed during this time, a pretty view from my patio doors, a good book, a visit from a friend, and my helpful husband are enough to make a satisfying life.

The only thing I would like is access to liquid O2.  I need a high level of oxygen and can’t seem to get enough to allow me to be out easily.

I really appreciate this forum. It lets me know I am not alone. This is my first post, but I have been reading it for months.