help please breathless
Posted , 10 users are following.
can anyone help please
i have been breathless now since mid April with also a dreadful unproductive cough
i feel like i can't take a full breath in
last night i coughed so much i think i've pulled a muscle in my tummy
i have had my inhalers changed twice and been put on 3 times a week anti biotics
also furosomide as i had some fluid in my lungs
can any one help please as i feel i cant go on like this much longer i have no quality of life at all
i'm frightened of whats coming
i saw a respiratory consultant this week who says i have empysamia and bronchiactus in other words COPD
by the way a few details i'm 70 years old .....i take seratide inhaler and braltus inhaler and ventolin of course....my asthma was diagnosd when i was in my 40's........i have one third of my left lung missing from an op 25 years ago.....i smoked heavily till 25 years ago
any input would be gratefully recieved
0 likes, 22 replies
Reglois marlene43811
Posted
Hi Marlene
I am 73 and an ex smoker, stopped 29 years ago.
I have Emphysema, Bronchiectasis, Pulmonary Fibrosis and just to be really greedy Systemic Scleroderma, diagnosed in 2018 May. I also feel like I can't take a full breathe , hurts just in my breastbone at the junction of my lungs.
Coughed non stop for a full year, before that, 5 years ago I was diagnosed with asthma, no I never did have asthma but Bronchectasis since a teenager it seems. None of the inhalers worked at all for me and Symbicort nearly killed me after one dose.
I am on Predisone, was on a high dose for a week, oh buy could eat a scabby dog plus the ones down the road !! the tapered off until I am now on 5mgs and that keeps the coughing under control, still cough but now where near as much. I am on oxygen 18h per day because my Industrial induced Pulmonary Fibrosis is severe.
Have you had a CT scan ?, I would push for one if not.Please try and stay positive and calm, eat well, try and cut out as many carbs as possible and if you have acid reflux buy a wedge pillow, help me enormously once you get used to it.
Sue
marlene43811 Reglois
Posted
i have had a ct scan and he showed me the pockets of emphysema [couldnt see much to be honest]and the bronchiectasis [i could see that]
thank you for taking the time to reply and telling me your story
i hate the not being able to take a full breath in and the cough and the breathlessness
well yes i hate it all
i think i'm still in shock to be truthful as one day in april i feel like a million dollars the next i cant breathe
no time to adapt or think hey somethings wrong here
i'm hoping the change to a steroid inhaler will help
once again thanks so much for your input
marlene
isn't it suprising what can go wrong with the human body and how we can adapt[eventually]i'm still at the disbelieving stage
and the why me?stage
hypercat marlene43811
Posted
Hi I don't know where you live but in the UK bronchi is not considered copd as it is a different illness, therefore the treatment is different.
I am on another lung site and there are some bronchi patients on there and the message very strongly is to make sure you see a specialist bonchi consultant as most of them know very little about it. Copd yes - but not bronchi. x
aitarg35939 hypercat
Posted
hey Hypercat
i think you've got a typo, or else bronchi means different things in UK & US. Here it refers to the largest passageways in the lungs.
hypercat aitarg35939
Posted
Hi aitarg I mean Bronchiectasis. In the UK copd refers to damaged airways whether they be at the top of the lungs or bottom. So it covers emphysema and chronic bronchitis. Some put chronic asthma in there as well.
Bronchiectasis; is seen as a difference disease as it is caused by growths on the lungs and causing wide open spaces in them and is therefore treated differently. Many of the treatments etc. are the same but often bronchi sufferers have to nebulise to clear the bacteria which grow in the lungs, and if they have an infection they usually need a sputum sample to identify the type so it can be cured.
I am on the BLF site on HealthUnlocked and there are a number of Bronchiectasis; patients on there who all state that it is very important to see a consultant who specialises in it otherwise it is treated like copd which it isn't. x
Reglois hypercat
Posted
Hi Hypercat
I have the problem that none of my lung problems are well known here (France) or maybe anywhere else as I seem to have hit the jackpot in what one person can have in one go lol, I have CPFE, Bronchiectasis, and Systemic Scleroderma, they try and treat me as if I have IPF (Idiopathic Pulmonary Fibrosis) I don't, I have Industrial Pulmonary Fibrosis with Emphysema so completely different, nearly died when I took a steroid inhaler, so now I research for myself and have come to the conclusion that there is nothing to be done, other than oxygen, which I am on, so I have to make the best of the time I have got. The French do not like the fact that I refuse their treatment, ie inhalers and Esbriet, my theory is, why make myself ill taking something that isn't going to work, there has been very little research into CPFE and everything I have found points to the fact that basically there is nothing I can do. So be it.
All the best to every one
Sue
aitarg35939 hypercat
Posted
I've never heard nor read of bronchiectasis meaning growths on the lungs, just deadened areas where everything collects & breeds. In the States, the umbrella term COPD includes both emphysema & COPD, plus up to 6 other things, i am told. My pulmonologist considers BX to be outside that umbrella.
If I want to see someone reputable who specializes in BX, i'll have to travel at least 1200 miles either northwest or northeast, be able to pay for travel & a hotel. Since I can no longer fly (all the perfumes/aftershaves on other passengers!), that means at least 6 days on the road so more hotel bills as my back/knee/hip can't drive 500 miles/day any more. Train with a bedroom costs the same. My finances are bare subsistence so that trip won't be happening.
larry49033 marlene43811
Edited
Marlene
First consult your medical professionals and tell them everything about your condition. If you can't always remember what you wanted to report, then write it down so you won't forget anything.
I too have COPD and my best med is a generic form of Mucinex called Guaifenesin which I purchased in bulk at a nearby Costco store. (Costco is an American store that sells things in bulk.) I can also be ordered online. It provides relief from the excess mucus that many of us suffer with.
I smoked for 45 years, but only quit just 3 years ago. In addition to a rescue inhaler, I also use a nebulizer with a Ipratropium Bromide and Albuterol Sulfate Inhalation Solution.
The Mucinex (generic) is my best of all treatments as it helps to break up and ease in clearing away the mucus that I constantly suffer with.
Your pulmonary health is a 1st priority concern, Oxygen therapy may be your answer, but you need to get to your Dr. as soon as you can.
Best of Luck
marlene43811 larry49033
Posted
thanks so much for your input
i am seeing my doctor in the morning but i don't see the consultant again till the beginning of october
my doctor is very good but i'm allergic to so many meds we are running out of things to try
i feel so lost at the moment
Reglois marlene43811
Posted
Inform yourself, talk long and hard with your doctor before using a steroid inhaler, you have bronchiectasis so are more vulnerable to infections and some studies show that steroid inhalers can be the cause of some nasty infections. As I said a steroid inhaler nearly killed me, not by infection, I admit but by an allergic reaction. Hope you find an inhaler that works for you, none have helped me but the tablet steroids have.
I knew what was coming as my husband already died and we worked in the same environment for 25 years.
aitarg35939 marlene43811
Posted
Did that pulmonologist happen to explain what bronchiectasis means in terms of mucus? It collects in those widened dead areas. Because those areas no longer work properly, it's easy for mucus to collect there. Getting it up & out is problematic, as is leaving it there as a perfect breeding ground for everything -- dark, warm, moist.
In some people tho not everyone, enough mucus collects to impact breathing. It is that way for me, but i tend to produce a lot of mucus in all my respiratory tract. Ask the pulmonologist/nurse if you might benefit from regular mucolytics and or nebulized meds. These include everything from various doses of saline solution to albuterol with or w/o ipatropium to plain steroids. A puffer steroid wasn't enough for me so now i do both advair and nebulized budesonide.
Aside from that there's what you must know from the partial lung situation: ALL chemicals, dusts, pollens, perfumes/scents, molds, candles, fires, etc., irritate the lungs and induce coughing & inflammation, which in some of us includes a big increase in mucus production. They can also cause damage from one exposure, in addition to that prolonged industrial exposure Reglois and husband suffered.
I hope they find something to help you, soon.
marlene43811 aitarg35939
Posted
thanks so much for your input
i'm feeling lost and quite depressed at the moment
my breathing or lack of it is my main symptom but the cough is awful too
but sometimes when i breathe in i feel like i cant get a full breath and its stuck
its really scary
larry49033 marlene43811
Posted
We are not where you are, but we are with you. Be strong and take things one thing at a time. Rest as you feel the need to, but refuse to give up as you cook or clean or dress yourself. I know how difficult it can be.
Know that people care very much about you, but all to often their own lives come first and they may seen to be distant and uncaring. Family and friends want to help, but other things are easier or more profitable than helping others.
Best of luck with your Dr. appointment and on getting on a better track with your meds. I too will be talking by phone with my Dr, as I'm having a bad reaction to the med I use in my nebulizer. It contains sulfur and has begun to give me hives as sulfur did when I was a baby. I'm sure that both of us can resolve our med issues.
I plan to reward myself with a treat as I go to the Drug Store for those new meds. I'm thinking Strawberry Ice Cream, perhaps you can also treat yourself as well.
All the Best
aitarg35939 marlene43811
Posted
Marlene, please make sure that your doc considers both your heart and lungs in your current breathing & coughing situation. If everything is worse at certain times of day, make sure both he & the pulmonologist know that. Took me years to figure out that i mostly coughed at night but only ever saw docs in the morning. They had no clue how bad things were, and that went on for years as things got worse & worse.
For the docs, etc., this is a puzzle to figure out. Info = pieces if the puzzle. Give them all that you can. There are always new meds.
Reglois marlene43811
Posted
Prednisolone or prednisone, depending where you are, was what helped me, took strong dose for a week then tapered myself down until I am on 2 1/2 mgs and that keeps my cough under control, I luckily found that my exercise machine, if I stand in a certain weird position it shakes up my plegm and I can cough it out so no need for tablets, hate taking meds.
I am in the same position as you re getting a good breath in but I have found pursed lip breathing really helps, breathe in as best you can and the out with lips pursed for the count of 7, I personally think that I retain too much carbon dioxide and this is why I feel stuck or full, pursed lip breathing helps.
I have found having a positive attitude, ie these damn diseases aren't going to get me until I am good and ready helps with day to day life, and I exercise as much as I possibly can, I have to walk my dogs, drive to somewhere flat.
Buy yourself an oximeter, use it to find out what makes you the most breathless, for example for me to go upstairs with out oxygen brings me down to 69 blood oxygen, just showering and getting dressed I am at 74, keep notes, and give them to your pulmonologist when you see him, this is real life chart along with their 6 minute walk tests, on the flat, only gave them half a picture, where I live there isn't a single flat surface anywhere outside my house and damned if I am just going to just sit indoors .
With certain lung diseases ie CPFE, the lung function test is not a lot of help either, I have very good lung function for these tests, I just have extremely poor gas exchange. They were quite shocked when they did the drawn blood gas exchange test.
If you feel you need counseling take it, I didn't, there are also courses (in UK, forgot name, should be free) that help with techniques and exercises to help with the breathing
Good luck, hope you feel less panicked soon, it is a lot to process.
Sue