Just given the diagnosis
Posted , 12 users are following.
Well I was just given the diagnosis tonight when my doctor called me himself after 5 p. M. You know when the doctor calls you and after office hours that it's something serious. Apparently there are three things about me that could have caused this. RA, Sjogren's syndrome and an arthritis medication I take. I am at my wit's end...I don't know where to go from here. Just this year I have had a broken ankle and a sprained ankle at the same time, I developed carpal tunnel and Trigger Thumb in both hands when I was not allowed to walk for 14 weeks. I had to use my hands to support my body as I transferred from my bed to my scooter and other places. I had my right hand repaired Monday of last week and 3 days later I broke the finger on my other hand. And then tonight this diagnosis. And I wish that was it. I won't list all the other crap I've been going thru in the last few years. This is just stuff that's happened to me since January 2018.
0 likes, 22 replies
aitarg35939 amkoffee
Posted
Amkoffee, you could have had an infection as a kid or, like me, a terrible lung infection 33 years ago as tge cause of your bronchiectasis. Some people expend a lot of angst and energy trying to pinpoint One Single Solitary Moment When Bronchiectasis Began, but even pulmonologists don't waste time on that. You're having a rough time, like most everyone here. I hope it gets better for you.
lana30007 amkoffee
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amkoffee lana30007
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Based on your name that you're a female as I am. So I want to ask you a delicate question. I hope you don't mind. Don't you get yeast infections a lot when you take these antibiotics for so long?
steve62514 amkoffee
Posted
Sorry to here you are having a tough time amkofee. Not everyone who has bronchiectasis would agree that this is a devastating disease. Me for one and quite a few others I see here posting on Patient. If the OP would like to look through the back postings on the forum he will pick up on the fact that there is hope that you can manage the disease if you accept that you may have to change aspects of your lifestyle to meet the challenges.
So - addressing the OP here:
I was diagnosed 4 years ago; I just had the latest of my annual CT scans, breathing and blood tests. I have significantly improved over my situation of 2 years ago - better lung performance and no longer any signs of immunodeficiency.
I attribute this (in order of importance) to:
* A better starting point - I was described as having 'relatively mild' bronchX
* Regular exercise - 750m swimming or 4km brisk walk 5 days out of 7
* Daily lung clearance excercises which are now reduced to less than 15 mins on my back coughing junk up and out
* A good diet generally - lots of fruit and veg, avoiding or limiting fats/fried/bakery/processed; cutting down on the alcohol (no smoking of course)
* An enhanced diet in the last year - low on inflammatory foods, high on anti-inflammatory foods, assisted by circumin as a supplement
* Not being a conspiracy theorist against pharma and not scared about antibi resistance; prophylactic azithromycin 3x a week may well have been placed at the top of this list if I had perfect knowledge of the contributory factors.
* Learning how my body is and recognising when early signs of infection are definitely pointing at a likely exacerbation and taking extra antibis only at that point.
* Probably others but this just off the top of my head.
Possibly luck is a big factor, but if you have the discipline to change your lifestyle to meet the new challenges I'll bet you'll be lucky too. Sound like boasting but rather I want to emphasise that this stuff is not always easy. As the saying goes "the harder I try the luckier I seem to get"
Loads of people live to a ripe old age with bronchX having had it a helluva lot longer than me. I expect it to eventually cut a few years off my life but expect to live a good life and see my daughters prosper (now 21 and 8 yo); I'm 67 and targetting at least 85). Be aware that patient forums like this tend to attract those who are having a tough time with their disease, but don't assume we are all heading for pain and the grave.
lana30007 steve62514
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aitarg35939 lana30007
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barb1206 steve62514
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sallyGB amkoffee
Posted
Bronchiectasis can be managed. You should be referred to a respiratory physiotherapist who can teach you breathing exercises ('Active Cycle of Breathing'
. Keeping physically fit is probably key to managing the condition and I try to have a brisk walk every day (just 20 minutes) and also include at least one day a week where I walk - fast - for an hour. Obviously smoking is out. A home-use nebuliser is helpful if I feel myself becoming 'chesty'.
I've recently been recommended turmeric tablets and have started taking these every day.
Generally I keep pretty well, it's just that if an attack of bronchitis hits, it tends to take about 4 - 6 weeks to clear (but I've only suffered such outbreaks every couple of years).
Wishing you good luck in managing your condition.
Sally
barbara33644 amkoffee
Posted
So sorry for all your troubles!
First of all, no one knows for sure how you get bronchiectasis. Get a really good pulmonologist that can see u through this. I immediately went to National Jewish Hospital the #1 pulmonary hospital the last 15 years. I learned everything I could about the disease and they have been my partner through it all.
I understand how scary it can be to be told u have a chronic disease. Get a second opinion.
Barbara
kathleen89227 amkoffee
Posted
I too have RA and Sjogren's Syndrome. I'm also on Methotrexate. My Bronchiectasis used to be awful and I had several sessions in hospital on IV antibiotics for a fortnight at a time. I use Fostair and Salbutamol inhalers, saline to nebulise, Carbocisteine capsules to keeep my sputum runny and I also use a salt pipe. Recently my lungs haven't caused me any problems, even though nothing else has changed, Here's hoping things improve for you too.
Operalyn amkoffee
Posted
I have had bronchiectasis for at least 69 years. They believe the cause was probably measles when I was a baby. Nobody really knows. The cause is unimportant - you can't go back and change it. The important thing is to manage it. I hope you get proper support from GP and a respiratory consultant. I have other illnesses too and they are a nuisance but I have lived a normalish life with bronchiectasis. Horrible shock when you're first diagnosed I'm sure. I don't know I was 1year old at the time!! When the shock dies down get all the help you can and clear those flipping lungs every day. It's certainly prolonged my life.
Take care. Xx
retirednana amkoffee
Posted
You’re very lucky to have such a caring involved doctor. There aren’t too many like that left. Most leave instructions for their staff, not realizing that their staff is often inept; forgetful; or so overwhelmed wit work they forget.
barbara33644 amkoffee
Posted
My intestinal track.
I also have mycobacterium avian complex(Mac) and
Mycobacterium abscesses. My lower left lung was removed in February, it
Basically died filled with pseudomonas
Bacteria which we had been trying to control with IV antibiotic.
After my
my lung was removed I feel wonderful. Still have the 2 microbacterium, I take 3 antibiotics orally everyday and one
Inhaled antibiotic 3 times a week.
I use the vest and nebulize saline 2
Times a day. I also take probiotics.
Also
i Swim daily and walk and try and
Do some weights
bronchiestasis can be controlled and that’s the goal. Getting rid of the
Bacteria is a full time job but I’m willing to work for
It. I hope you are too
I’m 73
KHi mgnwas
Operalyn barbara33644
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amkoffee
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For some reason I have not been getting emails from patient to let me know of comments posted on my question. So I decided tonight to just go in and look and sure enough there is 13 comments. There are so many questions I have and I really am just sliding down a very steep slope. Many of you have suggested exercise well I live day in and day out with chronic pain and about 6 months ago my doctor even lowered the dosage on my pain meds because I live in the US and we have this whole big opiate crises crap that's going on. So from the pain in my lower back, the pain in my broken ankle and the hand pain I have as just about done me in. And of course I told you all the rest of it in my original post. I'm also on prednisone which makes me susceptible to catching something and then everywhere I read about this condition it's all about making sure to stay away from sick people to avoid catching anything. My pulmonologist PA is going to call me on Monday because I wanted to ask her some questions. So I'm making a list of questions to ask her. I wonder though if you all can tell me why my doctor is going to do a bronchial scope. I know he said he was going to take some biopsies but I don't know what that's going to tell him unless it's just to tell him I have an infection. But it seems like a big thing to do just to find out what kind of infection I have if I even have one.
aitarg35939 amkoffee
Posted
Since you've got SS that scope is an even bigger deal than for other BXers. I'd bring that up. But if he wants biopsies, in theory he sees something questionable on your scans. Unless you say you don't want that done he'll probably insist. He might drop you if you won't do it, but it's your body & life. I've nearly come quits with a doc i loved over her great need to know the current status of growths in my thyroid. But my feeling is that they're not bothering me, were found by accident, & so many other health problems demand my attention. Of course lungs are much more important than thyroids ,,,
If you've got any recent xrays, get them to the pulmo so he can see if those areas have been there awhile & whether there are changes. There is some evidence that SS can cause small benign lung growths. Sorry, don't know where i read that. Whether Sjo caused mine or not, i've had some for at least 8 years. My pulmo said i was too sick for a non-emergent scope when we 1st met. Over time he decided that i don't need one, for now.
Can you get a doc to write a scrip for hydro PT? It can make a world of difference. I was able to walk a treadmill in the pool, very very slowly at 1st, and to work on core strength. I was able to maintain some of that on dry land. Failing that, just getting in a public pool (even with the lifts) and walking slowly back & forth for a few minutes, resting a while & walking some more, would help a lot. If you can't walk in the pool, just floating would be a nice change of pace & take the weight off all joints. Most Ys have water arthritis classes, if you're up for that. Very gentle.
I use lifts at pools. Embarrassing the 1st time but after that, not as embarrassing ad the sight of me climbing out on a ladder, lol.
When i stopped getting the emails a long time ago, i asked about it. Alan, the moderator, said i had clicked "spam" on an email & that they automatically stop sending when that happens. It was an accident. You may have to contact them to get the emails started again.
Susanne_M_UK amkoffee
Posted
Hi amkoffee. We know each other from the PMR/GCA forum here. I'm sorry you now have to cope with bronchiectasis as well. I was diagnosed with it a while ago. I had the bronchoscopy where they discovered that I have the nasty infection pseudomonas, which is resistant to most antibiotics, but needs treating quickly when it occurs/reoccurs. I believe I got bronchiectasis because of the frequent chest infections and pneumonia I got due the to my lowered immune system caused by the high doses of prednisolone.
I haven't suffered from any bouts of the pseudomonas infection or chest infections for a while , so fingers crossed. I'm now also on Leflunomide (DMARD) alongside pred, so hope my immune system stays ok.
Wishing you all the best.
amkoffee Susanne_M_UK
Posted
Thank you for the information. I go for my bronchoscope tomorrow morning. I have to be there at 5: 45 a. m. Not a pleasant time for me. And it's really in my opinion too early because my procedure is not scheduled till 7: 30 but they still want me there at 5: 45. I wish I could say that bronchiectasis and PMR are my only problems. But I also have a bad lower back and Sjogren's syndrome. Well I'm not going to finish listing everything. Apparently one of the symptoms of Sjogren's syndrome is bronchiectasis. well I don't think it's actually a symptom I think it's kind of like PMR and GCA that they can go together. But I don't think that's what caused this. This started right after a chest cold that took two courses of antibiotics to get rid of. Then about a month later my cough started. And I don't know why but every doctor who has listened to mine lung's says they sound clear. But when I cough you can hear it not just me but the doctors have also heard it rattling when I cough. My GP and my pulmonologist felt it was probably due to allergies or post nasal drip and that made sense to me. But my pulmonologist still wanted me to have an x-ray to rule out anything major. And when they did the x-ray they found a little something. It was not something they could really put their finger on so they wanted me to have a CT. And that's where it was evident. I have it in my lower lobe in my left lung and my lower and middle lobe in my right lung. It is not surprising to me that I have this because I spent the better part of my youth getting pneumonia and sometimes having to go to the hospital because of it. I was a very young child about 4 when I was in the hospital and I will never forget it because I had to have my head in what they used back then which was an oxygen tent. I don't know if you're old enough to remember those but they scared the hell out of me and I had to have my head in there all the time. And it was opaque so I couldn't see through it and it made my hair all wet. I'm so glad that they have oxygen through the nose now.
aitarg35939 amkoffee
Posted
When the docs say that you sound clear right now or they don't hear anything, they are not saying that you don't have BX. They are saying that they don't hear crackles & they don't hear a reason to pack you off straight into a hospital bed. What we lay people define as hearing something isn't necessarily what they define as hearing something.
For me, it depends on time of day. I didn't realize until after my BX DX that 99.9% of my med appointments for all this century were in the morning. And, we now know, i don't start coughing until 3 p.m. or later. So my docs truly never heard anything. I thought it was all natural progression of COPD & since docs weren't saying anything, neither was i. Ah well.
My new pulmo has a new thing. When listening to me breathe he insists i do it all with mouth wide open. Then even a 3 year old would do a double-take.
Hope all goes well for you.
Susanne_M_UK amkoffee
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By the time you read this, you will hopefully have had the bronchoscopy and be back home. Yes, crazy hours they want you there.
I do remember hearing about oxygen tents. That sounds like a very scary experience for a little girl.
I didn't find the bronchoscopy bad. I was given a light sedative, so didn't care too much what they were doing. Hope it was ok for you.
amkoffee Susanne_M_UK
Posted
I arrived home by 9: 30 am. My sister and I got there at 5: 15 and my appointment was at 5: 45. When we got there, there was no one else in the waiting room, and the security guard gave me the paperwork to fill out. Eventually a lady came in and went to sit down behind the desk. And I saw she was checking people in and this was like 30 minutes after we were supposed to be there and I went up to the desk and I told her and the security guard just dropped the ball. Anyway the reason I'm even saying all this is because they would not allow me to take my pain pills for my lower back and it just so happens I'm in a flare but I didn't want to cancel the bronchial scope. So I was in tears I could not moved even to dress myself. And when the anesthesiologist came in I asked him to give me something for the pain. And he said no he wouldn't and then he gave me some crap about how it could affect my anesthesia. The reason I say it's crap is because every single other time I've ever been put under the anesthesiologist agreed to give me something for the pain. the whole thing was torturous because of my pain. The doctor told my sister that I have a lot of mucus in there and that he tried to get out as much as he could. All in all it was a horrible experience but it had nothing to do with the bronchial scope. Of the three types of tests he took. Some of those tests will be available in 2 days, some of them will not be available for 2 weeks and then the last of it will not be available for three months. I think the 3-month thing was to check for a fungal infection. I hope everything works out for me.