Bronch- ectasy

[Guest guest]

Hope your Christmas was good. Mine was good, spent with daughters and grandchildren. My son is in California with his family, but we did talk. My family accepts that I am much weaker than I was a year or so ago, but I don't think they really understand how chronically ill I am now. They were so used to hearing me cough, but still be OK, that this doesn't really seem so different.

If I had a good pulmonologist I would be happier. I had a great one, but she moved out of the area. Doctors in general, even the good one, have been very disappointing. I have tests done and no one tells me what the results are; you really have to push them to let you know what the test shows. Last summer I had a Cat Scan done after a fainting episode at work and didn't find out until I changed doctors and obtained a copy of all of my records. It shows pulmonary hypertension. I contacted a cardiac doc who specializes in it, had a heart catharization and was told it wasn't that, but I know this stuff can cause heart failure. Which is OK if I have it and am treated, but to be patronized just infuriates me. Another result on that test last year indicated a dilated esophagus, which no one mentioned. I asked a gastroenterologist about it and he had me have a bronchogram. It turns out my esophagus is dilated and I have no peristaltic movement in my esophagus as you should have. The food just gets down through gravity. I am going for a manometry test of esophagus iln about a week. I am not sure what that is for. In the meantime, I am having to manage all this with various specialists, no internists to coordinate it all. And a family who really doesn't want to hear about and doesn't understand.

Oh well, boo hoo is me. I know you have suffered for a long time. I just hope the quality of your medical care is better. This group has been really supportive and helpful to me. I hope it is for you too. I don't quite understand how you know if it goes to everyone, but I click "Send Now", and I always get a copy of my own e:mails.

Have a great day,

MarilynSee AOL's top rated recipes and easy ways to stay in shape for winter.

[Guest guest]

Hi lin,

I hope you are well for this christmas.

I don’t know if I’m replying just to you, or ????other people, but to receive your response tonight felt extremely comforting.

I was diagnosed w bronch age 18, am now 55. GPs, specialists etc have at times asked me about reflux. It seemed irrelevant compared to other medical issues I was needing to cope with, but have picked up more recently (through i’net) reflux is somehow connected/related, and makes sense of never being able to lay down after eating or drinking, etc.

My GP printed out a copy of an article published in ‘Australian Doctor’ 2005, which I am happy to email to you as an attachment. In all the years I’ve had this thing, this is the most information I have ever come across.

And yes, there are times I really feel alone ... Family never could really accept it, friends it’s ok to a point... Significant others – oh my! Christmas – would be easier if there wasn’t one!

I look forward to hearing from you,

joy

[Guest guest]

Dear lin!,

This is so strange – I am on dial-up, and am used to most email communications I have taking days... Or more! Where are you?

I ‘chose’ not to have kids by the time I was 20, I realised I could hardly look after myself, how could I stay up all night for a baby with colic etc etc. I can relate to the family that really doesn’t want to know, so now I am in the same town as Christmas is even more difficult! Another story... being patronised by medical fraternity and family – too mcuh for comfort!

Do you know your main infection? Pseudomonas (bacterial), aspergillosis (fungal), what are your treatments?

I have read in medical journals etc that bronch is usually diagnosed later in life and most people have a normal life until then, but cough a lot. It seems I had a head start. Nevertheless, there’s so much I am ignorant about for exactly the reason you raised – the lack of information/communication by GPs and specialists alike and the fobbing off of any questions, in my experience to point blank refusal and disinformation.

Having been a bit of a nomad hasn’t helped, but now I have at last found a GP now who has at least been active in referring me to various other branches of medical care – a first in my experience, and admits to what she doesn’t know.

Let me know if you would like me to send you the article from ‘Australian Doctor’ as pdf.

And the best of possible heath this coming year!

Joy

endiandra@...

Please phone prior to sending attachments larger than 2 MB - thanks.

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Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "