Losing my confidence in treatment. - Asthma Community ...

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Losing my confidence in treatment.

Thompson_2009 profile image
12 Replies

I am losing my confidence in treatment. When my asthma got really bad and I forced the doctor to refer me to the hospital I had a good consultant but she has left. I had a C02 measure and it was 65 and she said that was bad and my lungs were very inflamed so changed my inhaler, when I went back later it had dropped to 32. My asthma is getting worse and pressured for an appointment and when back to hospital and my C02 measure is now 82.

The problem I have is because I wheeze really badly and get stuff stuck in my throat all the time due to my lung inflammation. he has said it's caused by silent reflux. Why is it every doctor says goo stuck in your throat is reflux. I know it's front my lungs. i have followed everything they have said, and nothing is working and getting fedup with it. I cannot have a normal life as I can't breath the air properly any more,.

12 Replies
Troilus profile image
Troilus

Hi Thompson. I also have silent reflux. As I understand it, acid can leak up from the stomach into the oesophagus, often while you sleep. When this happens, the acid can irritate the airways, causing them to become inflamed and swell causing phlegm. Have they given you anything for it?

Thompson_2009 profile image
Thompson_2009 in reply to Troilus

Hi They have prescribed me Gaviscon but what I cough up is long and stringy which is from my lungs, not my stomach. Whether I have reflux or not, what I cough up which causes me the most problems is from my lungs because they are so inflamed which they did not seem concerned about at all, which is why I am not happy about.

Troilus profile image
Troilus in reply to Thompson_2009

Hi Thompson. It looks like they think acid from your stomach is causing inflammation in your lungs. It can happen and is quite common in people with asthma. I suppose they are thinking if they treat the acid problem that will help solve the problem you are having with airway inflammation.

Thompson_2009 profile image
Thompson_2009 in reply to Troilus

Okay thanks never heard of that, my inflammation is caused mostly because I have a massive dustmite allergy.

Itswonderful profile image
Itswonderful

It is horrible to feel that you can’t breathe. I think everyone on here can fully empathise with you. Are you saying that the change of inhalers helped or didn’t help? Have you had any advice about how to reduce the reflux? Reflux and asthma often go together so it isn’t unreasonable for medical staff to mention it but if you don’t know what to do to change things, it doesn’t help does it? Because your lungs are so inflamed I wondered if you’d been given anything else along with a change of inhalers? It but be worth giving the AN here a call? I hope you start to feel better soon.

Thompson_2009 profile image
Thompson_2009 in reply to Itswonderful

Hi Thanks for the reply. They gave me the same inhaler just a different dosage so I can take it more often in the day and gave me Gaviscon for reflux. What concerns me is my inflammation was loads higher than it had been before and they didn't seem concerned about that so not happy really.

KitKat1954 profile image
KitKat1954

Hi Thompson, I know how hard it can feel living with this chronic condition. I too having been suffering with silent flux and asthma, with allergy to dust mites. I have been on acid reflux meds twice a day and also on the acid watcher diet, but it didn't help with the mucus, wheezing, and shortness of breath. I developed pneumonia 3 times in the past year and had several rounds of high doses of prednisone. Breathlessness has been really hard for me. The good news though, is one of my doctors suggested I have a sputum test (spitting mucous into cup). The lab found an infection that happens to be very resistant to antibiotics (I had been on them several times for pneumonia, and it still persisted). It is also difficult to diagnose without a sputum test and a lot of doctors don't think to do it. I had to ask my pulmonologist to do it. So, what they found was called stenotrophomonas maltophilia. This bacterium can be picked up through plumbing, dental office water, even bottled water. From what I understand, most people would not be infected, but someone with lung disease is more prone to pick it up. So, I just began a new high dose antibiotic 10 days ago which I will remain on for 4 weeks. I am now seeing an improvement and am hopeful I will continue to improve. I still have acid reflux, but all the coughing and bringing up mucous was really wearing me out and it went on for a year. I still have some mucous, but it is white, not yellow or gray. This is just one possibility and I think it's important to keep searching for answers and leave no stone unturned. I hope you find your answer, so your suffering improves. 😊

Thompson_2009 profile image
Thompson_2009 in reply to KitKat1954

Thanks, glad you are getting better, the thing is the mucus off the lungs where the inflammation takes place is totally different to the normal stuff. you can pull it and it's very long and stringy as it's off the avioli part f the lung which is what I get a lot. I can tell it's my lungs as I get the itchy in my throat and feel tight chest. had it bad last night but I cannot convince them that's what the issue is. My co2 level is the worse it's ever been and he totally ignored that fact. I am going to ask for a second opinion.

Itswonderful profile image
Itswonderful in reply to Thompson_2009

I did just get that. I contacted an airways consultant who has a special interest in unresolved/unexplained cough. Best thing I ever did.

Gwalltarian profile image
Gwalltarian

Have you tried reducing the level of dust mites in your environment? You mention getting allergy symptoms at night so it might well be that if you haven’t already done so that would be a good starting point. Things like hard floors instead of carpets, wash bed linen weekly, use a mattress cover you can wash and hoover the mattress regularly, keep dust levels as low as possible. Don’t use feather or down duvets or pillows. Perhaps an air purifier with hepa filter would help. If you have done all this then perhaps some antihistamines would help you.

KitKat1954 profile image
KitKat1954

I think getting a second opinion is a great idea. Good luck and take care.

Good luck, you do need a second opinion

I misread your posts and thought 32 was your oxygen level!

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