Cf or not that is the question ?

[aussiegirl]

I have been told I have atypical CF. I am 26 and was told this 3 years ago. I was suspected of having cf about 5 years ago, when I had all the "signs" of CF. My pancreatic function test was abnormal, and was put on enzymes which fixed all my stomach problems. I have had psudemonas for 7 years, and now am colonized with staph not MRSA as well. I also have asthma. When I lived in another state the docs made me undergo a lung biopsy, which was horrific. At first they thought I had some other lung problem. When I came back here where I live now, I ended up in the Emergency room with a virus that had invaded my throat causing it to swell and I couldnt breathe. At this time the doc who saw me immediately said to me and my husband it was CF and why hadnt anyone worked it out sooner ? ( at this point I should also mention that my sweat test was in the normal range and they only screen for about 5 mutations here in Australia as far as I know) I then had my first port put in, because over the years IV access for so called " psudemonas bronchitis " had runied my veins from PICC lines and the like. My first port got a blood clot in it, and now I have a second one. I went to the offical CF centre and they also agreed with my doc that its atypical Cf. that phrase makes me feel really awkward. They offered me more tests but I said no. I have just got out of hospital, the third admission in 5 months. The last 2 admissions have been for chest physical therapy because I have needed it alot up to five times a day. The doctor now says there is nothing more he can do for me since I am colonised with psudemonas, and had another one also cultured recently, and the staph. Is it CF or what ? sonia

 

[anonymous]

hi there,i am really hoping i misread your message when you said "The doctor now says there is nothing more he can do for me since I am colonised with psudemonas, and had another one also cultured recently, and the staph."that is an AWFUL thing to say!! there is a LOT the doctor can and should be doing for you!!! if this is CF (and it sounds like it to me but i am by no means medically trained) they should be starting to combat the psuedo as vigorously and as soon as possible. sometimes you need to fight to be heard; try and get more tests done, i know its no fun but the sooner they figure out whats wrong the sooner they can start treating it. for example if it is CF, you should be doing chest physio every day, and that may prevent you from having to go in for these big episodes of physio, because you are doing it regularly. they really need to find out what it is that is causing your poor health; CF unmanaged can damage the lungs very quickly, i really urge you to fight for more testing.best of luck, and i hope that it all gets sorted <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi,I agree with the response listed above. They need to be doing everything they can medically until the bitter end (and I hope this isn't even a reality for you).Have you been doing inhaled antibiotics such as TOBI (tobramycin) or Colistin? Pulmozyme also will help to loosen up the gunk in your lungs so you can cough it up (as far as I understand, someone please correct me if I'm wrong).There are constant oral antibiotics that alot/most of us have to take daily and of course, IV's when the bugs are real resistant.Like the person before me mentioned, only you can speak up for you and there are sometimes that I don't agree w/ the Dr and tell him so and/or ask for more agressive treatment.Good luck, it sounds like you've been through alot these last few months<img src="i/expressions/face-icon-small-frown.gif" border="0">Hang in there<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AbsintheSorrow]

Yes, that is what Pulmozyme does. I've been on it since it very first came out. 11 years or so. Its purpose is to loosen up the crap to try and cough it up. I also will be a quick advocate, and say Pulmozyme (though it's another med and can get in the way), is lovely. It makes me feel much better than I do without it (say if I miss a night, as an example).

 

[Diane]

Hi Sonia, Are you seeing a cf doctor ? I sure hope not, because a cf doctor should know better than to say "theres nothing more he can do to help you now that you have pseudomonas". Sure sounds like cf to me by the symptoms you mention and the best thing you can do is get yourself to a cf doctor.... ASAP. If the doctor you are seeing now is a cf doctor then you may need to find another. There are a lot of bad lung infections that cf patients get, and i have never heard of a doctor saying he cant help anymore. There are treatments for cf that can help in many ways. Whether it is cf or not Pseudomonas needs to be treated aggressively and not with a lackadasical attitude of giving up. You may need to get another doctor quickly .... Good luck and let us know how you are doing<img src="i/expressions/face-icon-small-smile.gif" border="0"> Diane / 39 / cf / diabetes / b.cepacia