VickyBrown

VickyBrown

I I am so lost my husband came home on oxygen they put him on predisone he is so depressed he can’t sleep he sees things he’s keeps pushing me away and now his doctor said his red blood count is very low and only a year ago his white ones were low so now I’m depressed cause he hen I read stories with my husbands symptoms I honk he is dying I have been crying for 4 days and haven’t stoped I’m not ready to lose him and definitely not I the position to lose him please god help us

4 hours ago

Soleena

Soleena asked the question: Coping with shortness of breath

hi all, I was wondering if you all have suggestions for coping with chronic shortness of breath? Even with oxygen therapy at 2L I feel like a fish out of water. I’m exhausted by the end of the day and simple shopping trips have turned into big events.

9 hours ago

chubs

chubsasked the question: Smartdose or Oxymizer ?

I just wanted to ask if what is the difference between a Smartdose Oxygen Conserver and an Oxymizer? seems like bottomline, both are used to conserve Oxygen on tanks and deliver bolus Oxygen upon needed. I'm looking for something to conserve Oxygen to …

9 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Just was told in ER last night I have severe emphysema. I'm scared.

To have severe emphysema your FEV1% would have to be below 50%. Anything above 80% is mild. At 88% if you do have it, it is extremely mild. You have nothing to worry about. Your pulmonologist said he didn’t you had severe emphysema and this test proved …

11 hours ago

Elizabeth Nocentino

Elizabeth Nocentino

I’m doing well today

13 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Just was told in ER last night I have severe emphysema. I'm scared.

There are a lot of numbers on a PFT, to guess at what she was thinking or referring to is just a guess. An increase of 12% is a clue, generally if after a treatment there is a 12% improvement, it indicates asthma rather than other forms of obstruction. …

14 hours ago

Kenny A

Kenny AGod's gift to us is pets
So many people tell me that's so nice that we rescued our Cat and Dog when in actuality they saved me
In years past I mourned over the lost of a pet , I use to think why but the longer I live I know why


Bella on the beach looking at Martha's Vineyard

16 hours ago

Z.Dean

Z.Deananswered the question Just was told in ER last night I have severe emphysema. I'm scared.

Hello! I just wanted to update a little and maybe get some opinions on everything. It has been a slow process. The first couple weeks I basically lived in my own personal hell. My anxiety was through the roof. All day. Everyday. It was awful. I …

16 hours ago

Caroline

CarolineWe can learn so much from animals.  This handsome fellow is saying hello because it is Fluffy Friday and because he an excellent life coach.  


I have learned from him that I need to keep as much of me in tact even though I have chronic disease issues.  He has arthritis in his front legs and hips.  He still plays with his bucket, still goes round and round in a circle when I greet him in the morning even though sometimes he accidentally sits down because his hips give out.  


He still barks and spins and barks and wags his tail when I come back home.  He greets the little boys on the block as they walk to their bus stop and lets me know when someone comes into the drive.


He faces each day with his old routines and antics.  He just sleeps more now than he used to.  This is something that I need to learn to do better.

17 hours ago

edpe77

edpe77

Morning from hell. I
had a 10 am Dr appt, specifically for the cholesterol test. That meant
nothing to eat or drink {think coffee} after midnight. I think that threw
my system into ciaos. At the Dr, O2 dropped below 88% several times.
Although I re-saturate quickly, it's still stressful. I did take ab
Ensure with me. That compounded with the fact that I've been
experiencing weakies lately, meaning O2 is good, but I'm still feeling
bad.

ed

18 hours ago

netmouse

netmouseanswered the question Lung CT Scan Results - High Resolution

The second opinion PFT and gas tests are over. A very sophisticated testing center, better equipment and longer time being tested. For the repeat testing, I was breathing in the asthma medicine in a mist for it seemed a good 10 minutes. (This was not …

19 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Does anyone have more shortness of breath while they are on Incruse?

I have been taking it for a while without any issues but I would definitely call the pulmonologist and let them know what is happening. There are a number of different medications she can try.

19 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Nebulizers: Your experience and Tips

There are other threads on Portable Oxygen Concentrators, POCs. This thread is just on nebulizers and I think adding POCs to this thread will just make it a less helpful place for folks to share nebulizer info.

20 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Does anyone have more shortness of breath while they are on Incruse?

Yikes! Has your mom told her doctor? I’d tell the doctor and ask if there’s a different medication that might be more helpful for her. Perhaps the Incruse does not agree with her for whatever reason. What was she taking before the Incruse and how …

20 hours ago

Pat Verostic 01

Pat Verostic 01

Hi my name is Pat I am new to this site love to hear from anyone with issues about COPD.

20 hours ago

Gwynne

Gwynneasked the question: Does anyone have more shortness of breath while they are on Incruse?

My mom has had 11 flare ups this year after starting Incruse.

20 hours ago

edpe77

edpe77Treat time! also in honor of Fluffy Friday...
ed


Compliments of the dog aging project

Dogs are unique in all kinds of interesting ways. Did you know that it's possible to identify your dog from the nose prints they leave on the inside of your car? Much like a person's fingerprint, each dog's nose print is one-of-a-kind!

21 hours ago

Wendy Book

Wendy Book

Portable concentrator question!! My mom now needs 4 lpm continuous flow, which means her current portable machine won't work for her. Is our only option the tanks? Or is there some portable machine that would be an option?The tanks are single use, correct? So once you use it up you have to change out to another tank?  Thank you in advance, this would be a big change for us and we're having trouble getting a straight answer from pulmonologist and oxygen provider.   

22 hours ago

Marsha Gail

Marsha Gail

Good morning! Here’s a question about portable O2. My doc told me yesterday to stop using the small portable tank as well as my Inogen because they don’t deliver as much O2 as I need when I’m moving around. Now I will have one of those large tanks on a dollie. My question is, how do I use a grocery cart and push the O2? I don’t want to use grocery pickup all the time because it get’s me out of the house. Thanks in advance for all of your excellent suggestions!

22 hours ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Caroline
    Hi Marsha Gail,  You have encountered a truth here which is that most doctors are not well versed on oxygen devices.  I would suggest that you monitor yourself with your oximeter and see of your Inogen and portable tanks keep you saturated.  Another thing to keep your eye on while performing this experiment is you heart rate.


    I have found that even though I am on 2l of oxygen for activity and 3l for sleep that I can do just fine with my Inogen G4 set on 2.  On some days I can sit and work on the computer with 0 oxygen and on others I cannot.21 hours ago
  • CarolineI forgot to mention that this lack of knowledge also fits most pulmonologists.21 hours ago
  • Marsha GailThanks Caroline, Jean053, and Bill Clark for these helpful answers. I won’t list my Inogen on Craig’s List just yet.😀18 hours ago
Kenny A

Kenny AHappy Fluffy Friday


Good day to stay in and do nothing
It's to cold outside
So get next to your bestest friend and sit around

22 hours ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi Mornin everbody
Happy Fluffy Friday here's these Baby's . Waitin for  the Sun ta show up . We just  need some Sunshine ta warm up these ole bones. Hope ya'ens have a Blessed day and enjoy ya'ens weekend.  
Ya Friend 
Lorrie 

1 day ago

LFAOMGA

LFAOMGAHappy Fluffy Friday Everyone!  This determined guy reminded me this morning that nothing that you really want is ever out of reach. Whatever it is, Go For It, You Can Do It !!

1 day ago

lbj123456

lbj123456answered the question Nebulizers: Your experience and Tips

What kind of home oxygen machine is suitable for you? Buying a fixed or home oxygen machine (HOC) is as important as buying a TV or car, but more private. Just like cars, customers need to find the concentrator that best suits their needs, because these …

1 day ago

netmouse

netmouseanswered the question What Can X-rays and Ct scans really tell us?

My x-ray showed normal lungs. I continued being treated for emphysema. My second opinion gave me a CT Scan, high rsolultion, that showed I did not have emphysema (COPD) but something else (also concerning, unfortunately) per my prior posts. What I …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question What Can X-rays and Ct scans really tell us?

X-rays are not good tools to use for COPD diagnosis or for on-going care, unless pneumonia (the infiltration that was spotted) is suspected. X-rays can often give indications that COPD might be a problem, but they are indications only and could be from …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday! 😊
Cheech Rossi is on his way outside to pick up the morning paper. Have a wonderful day, folks! 😀

1 day ago

ksuzn

ksuznasked the question: What Can X-rays and Ct scans really tell us?

Ok, so I phrased this as a question because I really wonder sometimes--my pulmonologist was going over my last CT which showed that the "possible early infiltrates" in my right UPPER lobe from earlier scan (described as possible pneumonia but never …

1 day ago

ksuzn

ksuznanswered the question PFTs secret? Seems to be.

My pft results came automatically in My Chart no problem. Didn't rec my CT scan or MRI right away, though. The ordering doc had to release them--normally awaiting an office visit to discuss. I'm assuming each facility or organization has their own system …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question PFTs secret? Seems to be.

My pulmonologist always prints out a copy for me too but after the fact, the ‘office’ or the record dept of a hospital can’t release them unless you go in person due to HIPAA laws.

1 day ago

MM4

MM4answered the question PFTs secret? Seems to be.

I usually just get a copy printed out when im done. But last time I was there something wasn't working so I didn't get one. My Dr office doesn't use MyChart, but they do have some stuff online. I'm not sure if it's listed online, I never thought to look?

1 day ago

Nanato4girls

Nanato4girls answered the question Smokers - At what age were you diagnosed?

Hi. I am 65 I started smoking at the age of 10. My sister got me started so that I wouldn't tell on her. I quit smoking November 11th 2015 after I got pneumonia and ended up in hospital for 2 weeks. That is also when I was diagnosed with COPD.

1 day ago

das23

das23answered the question PFTs secret? Seems to be.

I'm pretty sure my Dr just gave me a copy. I don't remember signing for it. I get a PFT next month so I'll see

1 day ago

2cents

2centsanswered the question PFTs secret? Seems to be.

My records are kept on mychart.com. My pft was not listed so I asked about it when I went to pulmonary rehab. I also felt like it was all a secret from me. I got that first print out from pulmonary rehab. For the PFT 's I've had since, I found that …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question PFTs secret? Seems to be.

A few times I had to run around to get copies of all my tests. The last time I did that I scanned them all using an app on my phone that saves them as a pdf file. They are all on my computer. The last I needed them, I just had to print them using my …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain

I have not requested my copy yet but wanted to share this link from the Robert Wood Johnson Foundation.

“We asked 10 fiction authors to help us imagine the paths that may lead to a healthier, better place for all-and those that may lead us astray."Take Us to A Better Place" is a vivid collection of short stories, which puts the forces that shape our health and well-being into crystal clear focus. Heartbreaking yet hopeful, they offer warnings and a promise for a healthier future. Foreword written by best-selling author Roxane Gay and introduction from Pulitzer-prize winning Pam Belluck. Available in both English and Spanish. “


https://www.rwjf.org/en/library/research/2019/11/take-us-to-a-better-place-stories-coming-january-2020.html?rid=0032S000024ERFhQAO&et_cid=1951819

1 day ago

Jimmy S

Jimmy SDear Father. We humbly pray for all those who are fighting Chronic Obstructive Pulmonary Disease. Give them the hope and courage they need each day. Comfort them in their pain and breathlessness and bless them with healing. Strengthen their family, friends and caregivers.In Jesus Name, Amen!

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question PFTs secret? Seems to be.

I don’t know why the same facility has some but not all of your test results available. My guess is that it is some technology thing, maybe be the portal system isn’t designed to store a PFT, it’s not a secret. HIPA laws won’t allow them to release any …

1 day ago

JeanO53

JeanO53answered the question PFTs secret? Seems to be.

Good question ElmoSansMuppet. My online records don't include my PFT results either. Not sure why. Up to this point, I've not felt the need to know the results enough to ask my pulmonologist when I've been in to see her. Have you asked your doctor for …

1 day ago

ElmoSansMuppet

ElmoSansMuppetasked the question: PFTs secret? Seems to be.

Hello again. I had PFTs December 18th and I've searched in Patient Portal of my records for the results since then, but to no avail. It shows nothing about the PFTs. I can view my MRI, my CT scan, my echocardiogram, my x-rays, and every other test that …

1 day ago

Josephbel

Josephbelanswered the question Smokers - At what age were you diagnosed?

I smoked since I was maybe 11 or even younger, both my father and elder brother smoked in the house, so i was exposed to second hand smoke since birth I guess. I continued smoking about a pack a day untill 2004 when I felt a sharp pain in my chest. The …

1 day ago

Marsha Gail

Marsha Gail

Just. Got back from the pulmonologist. He upped my O2. Also, I asked if I would benefit from pulmonary rehab. He made a referral for that and I hope to start it next month. And I would not have known to ask about it if I hadn’t seen all your posts about the benefit of it! So, once again, Thank You!!

1 day ago

JeanO53

JeanO53We finally had a full day of sunshine today. The trade off was that it was 13 degrees, so too cold to spend much time out there.  I'm still struggling with the tail end of a cold, so didn't want to push it too far.  I have to say it felt great to be out in the sunshine for a little while
     We've had a fairly mild winter thus far, even the lagoon near Lake Michigan hasn't fully iced over.  

1 day ago

ksuzn

ksuzn

Just came back from my pulmonologist and picked up my scrip for generic symbicort. Was really surprised.

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain Saw this and wanted to share. Dr. Cook was Senior Scientific Officer and Chief of Staff for the National Heart, Lung, and Blood Institute (NHLBI).

https://www.pcori.org/news-release/patient-centered-outcomes-research-institute-names-nakela-cook-new-executive-director#utm_source=special%20alert&utm_medium=email&utm_campaign=011620

1 day ago

Kristen Willard

Kristen WillardHave you registered yet? We're holding a FREE webinar next week to demo the PCG patient & caregiver part of our app!

The virtual demonstration will be held on January 23, 2020 from 4-5 pm ET. Register here for this event! http://bit.ly/2tHdvxe

1 day ago

joney

joney

doing well hope you guys are well today also😍

1 day ago

Catfinger77

Catfinger77answered the question Smokers - At what age were you diagnosed?

I'm 71 this week. I started smoking at 15 and smoked for 32 years, stopping about 22 years ago. I had the same symptoms you had for years smoking Marlboro Reds. I went to a "low tar and nicotine" brand 20 years in. I was diagnosed with emphysema in 2016, …

1 day ago

Brett770

Brett770

Hello all , I just joined group , trying to figure it all out . I’ve had Asthma my whole life & now have COPD as well . I just got out of Hospital with exacerbation . Still having trouble breathing . I hate all the side effects of these meds but at least they help me breathe . It’s nice to find people that understand what I’m going thru & can share information to help , so thank you all !! 

1 day ago

OldHippie

OldHippie

Thanks to all that responded. Much appreciated

2 days ago

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Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.