really sick guys in hospital

[Gammaw]

Hi Cam. We're praying for your quick recovery. I haven't experienced pleurisy in connection with CF, but I had it myself around your age. It's a painful inflammation of the membrane surrounding the lungs. It can cause sharp pains when breathing. I believe it's usually caused by viral or bacterial infections. I was treated with antibiotics and painkillers, even aspirin or ibuprofen helped with the pain. It can be caused by fluid built up between the lungs and chest wall.....that's what I had along with a bacterial infection. It ultimately resolved when the infection was under control. Ask your doc to explain what they think is causing your pleurisy. Hang in there. I know it's painful. Be patient.
Blessings

 

[Melissa75]

Pleurisy is some horrible pain. Im so sorry. If your pain came with thr pneumonia and during those PFTs, a silver lining, from my experience at least, is that it can sorta artificially lower your PFTs. So your numbers may improve quickly once the pain is managed.

 

[cam]

Thank you so much for info on pluracy it does hurt and I have been negative for mac for two weeks and the nodules in my lungs are bacterial indused they said I hope all this gets better thanks agian and im concernd bout my wt. Lost 10lbs while in here I have alot to get better hope in time it will get better thank you all agian

 

[Gammaw]

As for weight loss Cam, everytime my little guy gets sick, his appetite goes down and he loses weight - unless they put him on prednisone in which case I have to serve food with a shovel! So I keep his weight a little high anymore, which thankfully has become possible. The docs call his extra padding "insurance" for those times he's sick because weight loss when battling bugs is inevitable. Drink Ensures, shakes, high cal if you can stomach them. The weight should come back when you're better.

 

[imported_MaggieB]

Good luck Cam! We're out here thinking of you!!

 

[windex125]

I know yr in I a lot of pain my friend who is 62 has been getting pluristy everytime she gets a upper resp. infection and she is healthy no CF, I am still so happy to hear no MAC. Are you walking more, do you feel yr. strength coming back somewhat? I know when I do IV's it takes me sometime to get my energy level back. So take it easy. push yrself just a little more each day. Hugs

 

[cam]

Im walking little each day still not doin much better I hope something changes soon for the good thank you for all kind words

 

[cam]

I having pain in my cheat that goes threw to my back everytime I cough and now I might have to go threw another sinus surgery Getting pft on wendsday to see if I can go home if any better I hate sinus surgery it makes me feel like im suffocating was the worst thing I have been threw it bleed so much they had to repackme which was the mmost painful thing in my life but anyway I get ct scat tommorrow of my sinuses hope they r ok but my eyes been killing me and my face the big one is on wendsday the pft hope its better omg I hope please thank u everyone for the kind words im afriad this is the start of my decline that ill never get back from ill keep fighting as long as I can thanks agian hoping for a cure soon

 

[Gammaw]

Hi Cam. I'm sorry sinus surgery has been so difficult for you before. We've had three on this end already at 10 years of age, but none of them sound as bad as you experienced. However, the first one was the worst for bleeding. So hopefully if you need another, it will be a lot simpler and less painful. Your sinuses can be the pathway for bacteria to your lungs. Do you do sinus rinses, sprays, or meds? It might help your lungs to keep your sinuses clear. . . .
Blessings and Prayers already said for you this morning Cam.

 

[Gammaw]

Cam, every exacerbation feels like a threat to your life expectancy, doesn't it. Only your docs can help you determine the extent to which you can bounce back from this hospitalization. And sometimes they just can't tell either. Hopefully your PFTs are improving, but I've always found that it takes awhile AFTER a release from the hospital to climb back up. And be sure to ask your docs what the pain on coughing is about so you know what to expect. So don't get too discouraged if it seems like your PFTs aren't where you want them to be. Are you double DF508? I assume you're aware that the new combination med from Vertex (lumicaftor/ivacaftor now being called "Orkambi") is hopefully on the eve of approval for that mutation pairing. Although improvements in sweat chloride and FEV1 are often small, the decrease in exacerbations has been significant, and it is reported to greatly reduce the rate of decline. Keep the Faith, Cam. It really sounds like you're so much better than you were at the beginning of this exacerbation.
Prayers and Blessings!

 

[cam]

Finally back home pft back up to 53 base is 58 but im still having blood in mucus and sharp pain that wont go away when I breathe in or out hard anyone know what this is driving me nuts has been goin on while in hospital too they dont know what it is either they said could b the pluracy or from coughing but I cough always never had this before or this long very sharp pain when I try to do pft or flutter or incentive xray said looks ok but its makin it hard to breath cause when I breeathe in deep or out or cough hurts like crazy I go back on Thursday for pft I tried everything pain meds heat cold pain creams dont know how to make it stop but im glad to b out of hospital I just hope I don't have to turn around and go back thank you all for kind words and encouragement let me know if anyone has any idea what this pain is thank you hope everyone is doing well

 

[jaimers]

Cam, glad to hear your PFTs have gone back up some. That's defintely good news! Sorry you're still having pain though. I've had pain that sounds similar to what you're describing that was a mucous plug. Now I would think that with all the IVs, chest PT/Vest and coughing that it would have gone away by now if that's what it was but maybe see if you or someone else can do some concentrated chest PT on that one spot to see if that helps. Sorry I don't have any better ideas that what the docs and others have said :/
hope you feel better soon!

 

[Gammaw]

Cam, I'm so glad to hear you've been released from the hospital and your PFTs are climbing. I really have no other suggestion to investigate the cause of your continued pain. But I've always found that a release from the hospital doesn't mean you're completely recovered - just that you are on the mend, and hospitalization is no longer needed. Which is great news! We are often still recovering for a long while after release. I suspect you will continue to get better as time goes on. It will be interesting to see how your next set of PFTs look! We're here and listening....
Blessings and much healing.......

 

[cam]

Thank you for all help and encouagement im still having the sharp pain when I breathe in and out but no blood today I go for pft on Thursday hope its still goin right way they did say I have micus plugs in lungs but they didnt seem to worried bout it I just wish it would stop hurting and or they would fix or tell me what it is on good side iam walking little everyday feels good to b outside sleep is hard to come by but Im getting to hate bed I been laying in one for over month let u guys know how pfts are and what happens thank you agian for listening and helping hope everyone is doing well

 

[Gammaw]

Wonderful....no more blood in your mucous! A little bit at a time. Prayers for your PFTs!

 

[cam]

U guys think this could b a mucus plug doin this pain I cant stand it everytime I breathe in deep or breathe out hard or cough sharp pain in upper right chest goes threw straight to back everytime I breathe had xray no collapse lung or fluid from pluracy just said mucus plugs they said but they didnt sem to worried bout it its been goin on for weeks now hurts so bad pft tomorrow hope its better thanks everyone

 

[Gammaw]

I'm so sorry Cam. I'm sure you've asked and asked, but I wouldn't let them off the hook until they can tell you what the pain is or what you can do to rid yourself of it. Does it respond to anything like ibuprofen or other pain relievers? Do you get to see your pulmonologist when you do PFTS tomorrow? If not, I would ask for an appointment. Have you considered a second opinion from the other clinic you mentioned? Sometimes it takes a fresh pair of eyes, so to speak.
Blessings

 

[ethan508]

With the pain you describe and the Dr saying it isn't the lungs, could it possibly be something muscular skeletal? Maybe broken/separated ribs, a pinched nerve, inflamed/slipped disk in the back, or similar?

 

[cam]

I had pft is 55 base is 58 and they are not sure what my pain is I do have a few mucus plugs and the pluracy everytime I cough it is the worst pain ever if pain wasn't there I would feel alot better I need to cough to get stuff out anyone have mucus plugs can give advice or pluracy thank you for all the help and support

 

[Aboveallislove]

Can a bronchioscope be used to remove plugs? Given the pain, if so, wonder if that might make sense. So glad your pft is close to your base, but that pain must be horrible. Hang in there.