Hopeful...how strange is this?

Hi guys,

I know I haven't posted a new thread in a while but thought I'd let you know what's going on. In graduate school I was diagnosed with moderate persistent asthma, and treated with several meds for that and reflux, only the coughing didn't ever really go away. Also, I would take oral steroids at least 4 times a year. Anyways, over the years it's gotten much worse. I had what turned out to be pneumonia (or some sort of lung infection) for six months this year between June and November.

So I went back to a pulmonologist I'd seen a few times and he confirmed that I was actually aspirating (breathing in the food I was eating down the wrong way), which was causing the repeated pneumonia. This was caused by this weird congenital thing called a vascular ring, which is actually an alternative look alike diagnosis to asthma. Basically I would take massive amounts of asthma meds, and it sort of acted like a bandaid....helping things enough that I could sort of function and get through, but not really helping like it would if I really had asthma.

So anyways, major blood vessels around my heart were actually wrapped around my trachea (causing wheezing) and my esophagus (causing the trouble swallowing and aspiration). So I ended up at a heart specialist in January at a major heart hospital here in the States, and ended up seeing a heart surgeon. So in February I had two surgeries to move my left arm artery that was wrapped around my esophagus, and to repair my aorta which is wrapped around my trachea.

So....the story goes no one is certain whether these blood vessels were causing all my problems, or whether I also have asthma. So last week my cardiologist asked me to go off of serevent, and I was terrified as I've been ask to try this before and it's never worked. But I did it hoping that they were right and this other thing was causing a lot of my problems.....

So the exciting news is....I can actually breathe and I'm only taking singulair and one puff a day of flovent (no long acting broncodilators). So I'm really hopeful taking less meds will work this time. They said that I will still probably get lung infections, but that it will be like a few times a year and much easier to deal with. It just seems easier to deal with because I finally have a plan that fits my symptoms anyways.

But I hope you guys don't mind if I still hang around here, because really you're the only people I've found who really understand what it's like to have trouble breathing like I do all the time where I'm ending up in the hospital. Even when I had this surgery to fix this thing I ended up getting pneumonia afterwards.....my doctors were surprised, but I really wasn't!

Anyways, I think this is good news :). After a very long time something seems to be finally getting better.

Bee

11 Replies

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  • Wow

    What a result at least they got to find out what was the real problem. even though it meant surgery. You stay on the boards because your story inspired me. at least they sorted you out properly, right?

    Take care

    Gill

  • bee

    that is fantastic news!! altho had to endure surgery it means got right diagnosis + u can breathe!!

    hope this good luck continues to spread to us all :)

    good luck, keep well hun

    xxx

  • Bee there ,

    fantastic news and glad your getting better by the minute.

    lots of love glynis xxx

  • Hi BeeThere,

    That's great news! I remember you mentioning you had heart issues which I thought was pretty horrible in addition to bad asthma, but seems you managed to 'join up the dots' and get things fixed more or less in one go! Even if the asthma's still there it sounds like it's much less severe than before (which would make sense if it was the heart problems all along).

    Hope things keep improving and you hang around. I'm still on here even though no-one seems sure whether I have asthma or not (I wish they'd get on with deciding so I can do something about it!) - like you, I like having people who know what the symptoms can be like. xx

  • Thanks guys :). It's so nice to have friends to celebrate who understand. The other thing that is really great is I finally have a kind of action plan that actually fits my symptoms...I have a neb. to use with levabuterol and ipatropium if I aspirate and start wheezing. Then if I don't get better in a few days I am supposed to go get antibiotics. I know it sounds simple, but the few times I've done this it's worked pretty well. I guess since I was thinking more asthma it never occured to me to get antibiotics as often.

    Philomela, I've been told so many times that I do and don't have asthma that the whole thing just left me in a muddle that I'm still getting over. I hope you find some peace with where ever you end up on that word game of finding a helpful label :).

    The other thing is I'm really hoping that more people on this board get some relief and figure out what works for their asthma. Snowygirl...I really feel for you and all your trips to the hospital. I've been doing that this year especially, and it's so frusterating....I want to say to whoever's in charge..excuse me, remember me? I'd like to have my life back...you know the one where I could make plans and not be stressed out by breathing decisions every day. It's taken years to figure this out, but I'm grateful for doctors who took the time to listen to me.

    Bee

  • Hi Bee,

    Thats a lot of surgery youve been through.

    I really hope it has relieved your.asthma for good.

    Best wishes

    Howie

  • Hi Bee

    Congratulations on your news. I imagine it must be like getting your life back again and it certainly gives hope to everyone whose diagnosis is a bit uncertain.

    It's great that you want to stick around - you'd be missed if you left us!

    keep well

    xx

  • Oh Bee, I'm so peased to read your news. Not only am I thrilled for you that you can look towards the future with some light shining in, I'm also hopeful for my daughter.

    She too has been found to be aspirating food. It was found by Bronchoscopy although during the same procedure her oesaphagus was found to be fine. Her CT and ph study scan came back normal too. So we have no idea why this is happening but would account for her numerous infections and attacks and the monthly need for pred!

    So we are now waiting to see a speech therapist to look at her swallowing reflex etc.

    I've no idea the way forward for us but its soooo enlightening and hopeful to read your story. Thank you so much for sharing it with us.

  • Hi,

    Of course I'm sticking around! My doctors say that things should be much better, but my trachea and esophagus are still a funky shape, so chances are I will still get bronchitis a few times a year, but much easier to take care of. Before I would just aspirate pretty consistently, so got sick about every month.

    Yes the surgery was really a lot. I knew it would be...but wow it was pretty tough going for a while. I actually still have fluid in my lung (pleural effusion), which they used a big needle to treat, but now I have to take furosemide for and wait for my body to reabsorb the fluid. So I'm all kinds of fun out of breath. LOL.

    Emily,

    I'm sorry to hear about your little girl. I don't know if this info. helps...but for me what happened was my left arm artery was wrapped around my esophagus, which caused it to be squished at one part in the upper part of my chest. This narrowing caused something like a funnel, so food would go down pretty O.K. most of the time, but certain things definitely got stuck (could feel them in my chest), and when I ate say a larger meal food would come back up as the funnel was too narrow to accomodate. There are up to 100 different kinds of rings though made up of different formations of the usual structures in everyone's chest. And there's also the congenital problems you can have with both your esophagus and trachea. The only thing I would caution, is if your daugter has something rare like that (and it sounds like she's like me in that she has a lot of symptoms that haven't been explained well at all yet) it might be worth seeing some of the top specialists in your area...a lot of my local doctors said things were normal because they didn't know what they were looking for. And indeed, my esophagus and trachea are made up of healthy tissue so ""they look normal."" Pediatric cardiologists treat vascular rings, and pediatric lung specialists should know about the other congenital esophagus/trachea stuff I think. I actually have a pediatric cardiologist, and my current pulmonologist is thrilled to pieces because I'm to only patient he's ever seen with this...it's nice though because they're very good about caring about me as a person too.

    I don't know if this is helpful, but this is what I have...

    pted.org/?id=vascularring1

    There's this thing too called tracheoesophageal fistuala, which I don't have, but my pulmonologists seem to speculate about around me :).

    ncbi.nlm.nih.gov/pubmedheal...

    I met a little boy when I was a chaplain who had surgery for this. The good news is that the surgery is big, but I have a friend who had my surgery when she was a kid, and really that's it. Things are much better afterwards. I was in the hospital for 4 days.

    Take care,

    Bee

  • I just thought of something really funny which I thought you guys might appreciate :). I went to the ER about two weeks after my surgery, because I was having trouble breathing and coughing up things that had color. Turns out I had a pleural effusion and had fluid in my lung. Anyways, the doctor was like ""Yep, you're wheezing."" Which made me laugh because you know I never ever wheeze? I could be half dead but I won't wheeze. Anyways, felt rather justified for all the trouble :).

    Bee

  • Hi Bee,

    So glad that things have finally been sorted for you. My problems have been going on for years and they still haven't sorted it out.

    Good luck for the future

    helenxx

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