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Ribs crushing lungs


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#1 Timo

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Posted 20 July 2008 - 01:11 AM

Hi all,

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

Love Jess

#2 LisaBulman

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Posted 20 July 2008 - 03:43 AM

Hi Jess,
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.

Hugs,
Lisa
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#3 Karenlee

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Posted 20 July 2008 - 04:03 AM

Jess,

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.
Karen

#4 Margaret

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Posted 20 July 2008 - 04:57 AM

Hi Timo ,

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.
Margaret

#5 lizzie

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Posted 20 July 2008 - 05:05 AM

Hi Jess, I'm really sorry to hear that you are having such problems with your lungs. It sounds like your doctors are recommending that you have have an immunosuppresant - are they suggesting something like cyclphosphamide? If they are there is some evidence that it can help reduce skin tightening as well as improve lung function , so could be an option for either possible cause of your diminished lung function. Having immunosupression is a big and difficult decision ( I am having to make the same decision myself at the moment) and you need to discuss with your doctors and family all the potential benefits versus the sideffects so you can make a properly informed decision. Everybody reacts differently to immunosupression but it doesn't neccessarily have to be bad and can in fact be very successful. Three years ago my son (who is just a bit older than you) had cellcept (an immunosupressant) for a rapidly progressive kidney disease. He had very little , if anything, in the way of sideffects, and most importantly it halted the disease progression, so that he still does not require dialysis (they had predicted he would need it within a few months at most). The doctors don't know everything , but they do have experience with other patients and I am sure they have your best interests at heart, so keep am open mind and ask them lots of questions. Good luck with whatever you decide.
Lizzie

#6 Peggy

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Posted 20 July 2008 - 05:07 AM

I would suggest that if you aren't getting the answers you want to get a second opinion. Each doctor sees things differently and they have different approaches. Maybe by seeing someone new you will be able to convince him/her of what you are talking about and what is going on. They may do some different testing that would also add some insight of what is going on. Good luck to you and keep fighting. Your age has nothing to do with it! You know your own body and you need to keep fighting for what you "want" and what "you" believe.

Warm hugs,

Peggy

#7 smac0719

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Posted 20 July 2008 - 06:21 AM

I agree with Peggy about getting a second or even third opinion. As she mentioned, you know your body better than anyone. If you feel there is something more going on or the cause if different than what your current doctors are suggesting, don't cave in and keep searching for a physician who will look at your situation from every possible angle. My sclero specialist specializes in sclero with lung involvment. Maybe you can find one close to you who does the same.
I may have Scleroderma, but Scleroderma doesn't have me!

#8 truman

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Posted 20 July 2008 - 10:18 AM

Jess:

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.
Tru

It is what it is...........

#9 MicheleM

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Posted 20 July 2008 - 11:57 AM

Hi there. I too am wondering what kind of drug therapy the dr wants to use & why you feel so strongly against using it ... side effects such as? I have "weird" lung issues that has my pulmo confused at times. My PFT came in with really good conversion ratio but my capacity was so low that my overall numbers were dramatically lowered. I also have the hardship on and off again with my "lungs"/chest wall so tight I end up hyperventillating and that is a whole other issue. I've been really good for breathing until I inhaled some 2nd hand smoke the other weekend - so be careful of your environment too! I would also get a second opinion on my concerns and if still conflicted a third opinion. They don't have to be sclero doctors to understand your feelings or aprehension about the drugs/treatment. I believe in going with my gut reaction (no matter what age) as I believe we have a sixth sense that triggers those feelings. I hope you post and answer the questions so maybe we can put our heads together & help you make a sound decision.
Soft hugs your way,

Michele

#10 Timo

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Posted 20 July 2008 - 12:06 PM

Thank you everyone for your replies. It really helps to know there are people who understand. In answer to some of your questions, my doctors does want to put me on an immunosuppresant. I am very lucky to have found this doctor. He is involved in a scleroderma screening program for lung problems so I'm sure he knows what he is talking about. I think we just need to look into the ribs and skin a bit more before I make such a big decision about the immunosuppresants. I have been on them before, methotrexate that time and they are the reason that my weight is so low. I did have a few side effects on them but is immunosuppresants are what's going to work I will try them. I just want to figure out whats really going on and my doctor just wants to go straight for the immunosuppresants.

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

Love Jess

#11 MicheleM

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Posted 21 July 2008 - 07:05 AM

There are many, many other drugs besides methotrexate to use especially if you had any adverse reactions like severe weight loss. Cellcept if the sclero is in the lungs for example. Don't give up hope! Good luck with your teeth! Lots of ice afterward to keep that swelling to a minimum ... our doctor used a steroid pack for my kids that really helped them with the pain & swelling ... just a thought :) !
Soft hugs your way,

Michele