Cystic fibrosis, chronic pancreatitis and bleb's in the lung's


#1

Hi to all this is mike12 it’s ben a while since my last post 4 mo ago I had my gallbladder taken out because it was not working at all completely dead. Last week I had to go to the e.r because my left lung was hurting a lot I could not lay down or catch my breath it turns out my left lung partially collapsed on the cat scan they found blebs on the lungs hi pressure air pockets given the history of c.p with no reason for this or the air pockets they are testing me for cystic fibrosis has any one got any thoughts on this or any help full info the c.p flair ups have Benn under control for the most part and I have ben out of hospitals but this new thing has me verry concerned any help or info would be great Mike12


#2

I used to work as a respiratory therapist, so the first thing I want to stress to you (from experience) is to not get upset about anything the doctors are finding are speculating about. When it comes to the lungs until the final diagnosis comes in it could be practically anything. So don't let what they are telling you bother you. The next thing is to go to the American Lung Association's website. They have wonderful information about everything pertaining to the lungs and have very helpful links to other places to get more information. PLease go to these websites. Do some homework. Arm yourself with questions and knowledge. DO NOT let them blow your questions off and MAKE them answer all of your questions fully until YOU understand completely. If they want to send you to a pulmonologist (lung doctor), do some research into the ones available in your area. Don't just accept whoever they want to send you to. There are some very good ones out there as well as some very bad ones (as with all of the medical fields I suppose). In this instance, you will want to ignore what their bedside manner is and go with the most knowledgeable. One of the best pulmonolgists in our area has a horrid bedside manner but is an absolute genius when it comes to doctoring the lungs. If you have any concerns or questions, please feel free to PM me. If I cannot answer your question I promise to find the answer for you. Good luck and I will be praying for you.

hugs and prayers,

Dream


#3

Mike,

Do you have any Autoimmune Disorders? I was just diagnosed with Autoimmune Pancreatitis (AIP). I was doing some research on AIP and it said that AIP sometimes affects the lungs. It is a fairly rare form of CP, and it affects more men then women (I am female). They are starting me on Prednisone (corticosteroids). It is supposed to reduce the inflamation of the pancreas.

My pancreas is so inflammed and my ducts so narrow that they could not complete the ERCP. They thought at first that I had pancreatic cancer, but the biopsy came back negative for cancerous cells. They also had to insert a drain to drain the bile from my liver as I was very Jaundice. Hopefully the steroids will help as I have lost 50lbs in the last 5 months and I can’t afford to lose much more weight.

I hope this helps.


#4

Mike12,

I unfourtunately don’t have any advice. I just wanted to tell you “thanks” for responding to my recent post. Also to give you support and let you know I pray for all here. I know it is hard to feel the way we do. Take care and update when you find out something about the liver and C.F.

Keri


#5

Hi everyone thanks for the help and prayers I went to Beth Israil hospital in Boston yesterday and I will be having lung surgery on the 21 they will do laproscopic and cut out the top left side with the blebs air pockets so I will be stuck in the hospital for 2 days after the surgen said they will sand down the inside of the rib cage so the lung will stick and heal together but the word is not back on the systic fibrosis or outher genetic dissorders maby this week the results will be in I hope all of you heve a good weekend and thanks mike


#6

You are in my prayers. I know the B.I. in Boston. Excellent hospital

Jackie