Ribs crushing lungs
Posted 20 July 2008 - 01:11 AM
I have a dilemma right now and I am really unsure of what to do so any advice would be much appreciated. I have recently discovered that my lungs are working at 50% but MRI's indicate no fibrosis which is good, but then why do I only have 50% lung function? My pulmonologist wants to treat me as though I have fibrosis because he believes I have it, but that we just can't see it on the MRI.
I am really concerned about this for a number of reasons. Firstly, it will lower my weight which is already dangerously low, and it will also lower my immune system. Also my ribs are a definate influence on my lungs. They are horizontal instead of turning slightly downwards and about a year ago they began to curve inwards restricting my breathing. My skin is currently so tight on my chest that I can feel my lungs expanding and not having enough room.
I do not want to go on a medication that will have so many negative affects if there will be no benefit and at this stage my pulmonologist hasn't given me any, but am I risking big lung problems by not going on the medication. At this stage I am considering surgery on my skin on my chest to open it up and allow myself to breathe better, but I am having a hard time getting doctors to believe me that my skin and consequently my ribs are really causing that much problem. I just don't know what to do, and I don't know how much longer I can fight with them. I am only 20 years old and doctors think they know better than me. I just have a bad feeling about this medication, and really want to look into the skin graft.
What do you all think? Should I trust my gut? And do you think a skin graft could work?
Thankyou all for your time. I really am lost
Posted 20 July 2008 - 03:43 AM
It sounds like you are having a very difficult time right now. What medication does your dr want you to try? Obviously something is going on ig your lungs are only working at 50%. Have you had a CAT Scan? Everytime my dr's want to look at my lungs they do a CAT Scan and not an MRI? Do they recognise there is a problem with your ribs? I don't know enough about the skin graft to help you but maybe they are just not putting all of the pieces together to get to the root of the problem.
Keep fighitng with them until you get answers you are satisfied with.
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Posted 20 July 2008 - 04:03 AM
Sorry you are having such a rought time right now.
I, like Lisa also get CT's for my chest not MRI's. And they do them in the prone position (on your stomach instead of your back). Maybe bring this up with your doctor, as it may show more.
I don't know about the skin graft (although have always wondered about that for skin tightening).
Please keep us posted.
Posted 20 July 2008 - 04:57 AM
I am sorry to hear about your lung issues. Your problem seems similar to my son's problem when he was first affected....at age 18. His chest cavitity was so tight and restricted that it hurt to breath in deeply. He never had any skin issues and wasn't diagnosed with fibrosis, so I can't offer any info on that. The respiratory therapist told me he had a vicious cycle going.....his body needed to breathe but the pain from breathing in caused him to take very shallow breaths....thus causing the chest cavity to constrict even more so.
Fortunately, for him, after he was on the Plaquenil for a couple of months, he could breath easily again. I hope you find some relief.
Take care, Everyone.
Posted 20 July 2008 - 05:05 AM
Posted 20 July 2008 - 05:07 AM
Posted 20 July 2008 - 06:21 AM
Posted 20 July 2008 - 10:18 AM
I have always believed in trusting your own feelings. Before I even read the rest of you post, my inclination was that of the ribs curving in as well.
Short of not being a doctor, I have found intuition to be a valuable asset to be heeded especially in an era where medical personnel know little about CREST and Scleroderma. It's truly amazing and unacceptable how little they know.
It is what it is...........
Posted 20 July 2008 - 11:57 AM
Posted 20 July 2008 - 12:06 PM
I have never heard of the cat scan for the lungs but when I went for the MRI they did scan me both lying on my back and my front. I will have to talk to them about the cat scan. Everything has been delayed at the moment because I am on the waiting list to get my wisdom teeth out and we want to sort that out before anything else. So I still have a bit of time to figure out what I am going to do. Thank you for your advice. I am sure it will help in my decision making
Posted 21 July 2008 - 07:05 AM