Chronic bronchitis after PE?
Posted , 6 users are following.
I'm getting very concerned. I had a bilateral massive PE almost 2.5 years ago. Since then, I don't seem to be very healthy. For example, I was sick this entire last summer for about 2.5 months with asthma/bronchitis and right now I've been sick for a month with this terrible bronchitis. It doesn't seem to ever go away in any timely manner despite the use of steroids, multiple inhalers, antibiotics, etc. This is getting very frustrating and frightening to me because I've never had respiratory problems like this in the past. It makes me think that there is scar tissue in my lungs, making it hard for me to heal from any respiratory illness. Every time I mention this to a doctor, I don't think they think this is a probability and I am unsure how to manage all of this. Any thoughts on what direction I should go?
0 likes, 15 replies
Windy8000 CamilleG123
Posted
It sometimes makes me so angry when Drs don't take the time to answer our questions. Calming our fears is part of treatment. I have the best Dr she listens longer then I'm willing to talk. Answers questions I don't ask. I also have a neurologist I plan on seeing who I am going to ask a few questions he takes care of my migraines. And my knee dr who replaced my knees. I want to ask about the blood infections I've had lately. You may need to make an appointment when you aren't dick just so you can go in and ask questions. Write them down.
tay8641 Windy8000
Posted
Windy, I found this thread while searching to see if my chronic cough was induced, or possibly made worse, by my PE because I never coughed before all of this happened! I'm a rather healthy 22-year-old who had no risk factors other than being slightly inactive and a recent family history. However, apparently it was caused by my birth control (haven't gotten hematology results back concerning clotting disorders I may possibly have, seeing as I have a family history).
Anyway, while I was in the hospital before the doctors started treatment with Xarelto they let me decide which way I wanted to go. I wanted to let you know about the EKOS procedure in case you hadn't heard of it, as I know it isn't performed everywhere. I see that it's been 9 months since you posted this and I hope you're doing better. If your clots haven't dissolved and/or turned to scar tissue then EKOS could possibly be something doctors could do to break up the clots. It's a type of thrombolysis where they use a catheter to send a constant stream of blood thinners into the area with the clot and use ultrasound waves to break up all of the clots. The clots would be completely gone after EKOS. I chose not to do it because of the risk of internal bleeding and the need for a central line through the neck in case of emergency needs for blood to be drawn and/or medicines to be administered and also the need for a urinary catheter since you can't move for like 24 hours after this procedure. Luckily, my two PE were small and far down in my lungs, and actually in places where they couldn't travel to any valves and cause significant trouble.
Hope you are doing better, though, and don't need this information.
Best,
Taylor.
peter54321 CamilleG123
Posted
Hi Camille,
In answer to your specific question ("Any thoughts on what dirction I should go?"
- I would try to get back to see your pulmonary specialist and/or see a new one. That is pretty much what I am doing at present, after having some chest issues a year or so after multiple PEs. My GP has arranged for a full set of bloods and a chest x-ray to see where we are and if nothing else presents itself, is planning to refer me back.
I didn't have the issue in the summer like you, so had been wondering if it was a winter issue....from what you describe, perhaps not. One thing I can say for certain is that I am very sensitive to dust and chemicals since the PE - even an air freshener the garage put in my car set me off. I also wonder if anticoagulants are interfering if you are still on them? (I am).
Good luck and let us know how you get on.
cheers Peter
peter54321
Posted
Windy8000 peter54321
Posted
I notice most people say "since PE" it could be at least another 5 months until I'm past this. They haven't gotten rid of it. I still have it. The blood thinners I'm on they say will not make it go away it will slowly absorb into my body. That blood thinners just lesson the likely hood of getting another. I'm still scared because this is still so new. To me. I feel like I'm getting a chest cold so I've started taking Musinex but I now wonder if I can be aggravating the blood clot. See I still have the PE.
CamilleG123 peter54321
Posted
Thanks Peter. I'll see about getting in to see a pulmonologist. That might be the only answer. I'm seeing so many doctors about so many different things. Sometimes it gets so confusing. I also just wanted to see if anyone else experienced anything like this. It's interesting to me that you have experienced an increased sensitivity to smells/irritants because I believe I have too! Thank you for your response. If I learn anything new, I'll post a response again.
CamilleG123 peter54321
Posted
Oh and I'm no longer on anticoagulants. They didn't recommend them because my PE was supposedly pregnancy-induced. I hope you feel better soon.
peter54321 Windy8000
Posted
I think that may be because people view a PE as an event, rather than a condition. Usually, the clot has already travelled from elsewhere, to end up in the lungs where the body can dissolve it away. I guess the PE "event" happening during its travels. Never really thought about it to be honest. I was told that any residual clots would dissolve fairly quickly and completely in most cases.
A bit more information about PE recovery would be useful, but it doesn't seem to be common.
peter54321 CamilleG123
Posted
I will do same as you and post any update I may get over the next few weeks. On the subject of irritants - dust seems to have the longest lasting effects. Petrol fumes almost hurt, but clear faster. Furniture polish somewhere inbetween. If I stay away from all of them.....much more comfortable.
Windy8000 peter54321
Posted
My Vascular Surgeon said it will take about 6 months to be broke down and absorbed into the body and leave the lung. So that is 6 months having a something that shouldn't be there there. I think that is why people have irritant problems. Why dust, orders, chemicals, particles and colds bother them. The lungs are busy breaking down the clot so they don't want the additional work.
CamilleG123 peter54321
Posted
You're exactly right. More info would be useful. But it seems like there is a lack of knowledge and understanding related to the recovery of having had clots in your lungs. Stamina, etc. That's why it's nice to compare with others that have been in the same boat. Thank you!
CamilleG123 Windy8000
Posted
That makes total sense. The only thing with me us that it's been over 2 years and I'm having lung problems I never had before.... I hope you have a good recovery.
Cassie26938 CamilleG123
Posted
Hi. I had pulmonary embolism last year so I understand. I had 24 blood clots in my lungs. I was super healthy before and never smoked or had asthma. I did also get chronic bronchitis after PE and was on 10 antibiotics. I also started getting asthma attacks too. I never had asthma prior.
My advice to you is to see multiple lung doctors and get at least 3 opinions.
I also got hypoxia after and still have to use home oxygen.
A lung doctor can check your lung function and also check for pulmonary hypertension. It is important to get checked for those things after PE.
Are you able to exercise? I was very athletic prior to PE and I can't exercise yet. I get too out of breath.
The lungs are like sponges and take a long time to heal...if they fully heal.
I hope you get this and feel better.
cathy428 CamilleG123
Posted
I suffered multiple PEs some 4.5 years ago following a cough for a year, given many diagnoses, all incorrect until my lips turned blue and my face had a waxy colour! Thank goodness I found a GP who knew what he was talking about. Since then I have had a cough, and was told I had chronic bronchitis, and now every time I get a sniffle, let alone a full blown cold, I get bronchitis, and for many weeks at a time. I am back under the care of the senior Chest Physician at the local Hospital, who prescribed long term antibiotics (3 months), I suffered serious side effects and eventually gave up using them after 5 weeks. I know the taking of antibiotics on a regular basis can destroy the immune system, so am trying to find what I can take to improve my immune system. Cannot get the flu jab yet as have another infection, started a month ago. Dread to think what he will say at the next appointment in 2 weeks time, but seriously who can tolerate: daily nausea, diarrhoea (bad enough with IBS and diverticulosis), feeling faint, ringing in the ears, and a continuous itchy feeling? I am on an inhaler but I do not have asthma, however a friend who does have asthma has a better lung function reading than I do!
I sometimes think the ongoing cough is better than the side effects of the antibiotics, which the Physician says "they give out like smarties", so rejected my comments about side effects the first time earlier this year, I took for 3 weeks, but did not get on with them. As they are part of the penicillin group, I react badly and apparently nothing else will work!
I feel sure that doctors and hospital staff do not realise what we are going through, and just dish out tablets, inhalers and steroids just to get rid of us, I may be wrong.
cathy428
Posted
Just to update went to private respiratory consultant who has been a lot more helpful. On my last visit after my becoming suddenly breathless, did a d dimer test. Level showed 2496 should be under 500. Got a call at 9.40pm that night telling me to go to local A&E as I most probably have blood clots in lungs. Packed a bag in case! At 2.30am I was allowed to conw home. Their reading was 5 should be 0.5 so high risk of clots. Self injected for 4 days then had a scan. Showed several clots and on blood thinners for life as it is classed as my 5th clot (came from left leg again). Not coping well as trying to be active to a point but not easy as I fall asleep after a short walk never mind housework and laundry. Now I have started another hacking cough and its a Bank Holiday in a couple of days, good timing.