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Lung bulla?


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#1 madisonsmom

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Posted 26 February 2013 - 12:39 AM

Sorry I haven't been on here in a while :( A quick update on Madison, then a question. We changed rheumatologists, and Madi and I both LOVE her new doctor!! =) She was given the official diagnosis of juvenile systemic sclerosis with the possibility of MCTD as well. She was started on a steroid IV infusion monthly and increased her MTX to 25mg (1cc) every week. I just got the results of her CT scan of her lungs today, but I won't talk to the doctor until tomorrow. The CT scan showed "2 cm bulla within the right lung base" and "linear markings within the right middle lobe"

I will talk to her pulmonologist tomorrow, but from what I can find through my own research - these results can indicate fibrosis of the lungs from several different causes...so I am guessing that her lungs ARE being affected by the scleroderma.

Glad to have found it early, but anxious to see what the outcome looks like!! Nervous!!

Shauna

#2 Shelley Ensz

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Posted 26 February 2013 - 11:05 AM

Hi Shauna,

 

I am thrilled that you found a new rheumatologist that both you and your daughter love. The right doctor can make all the difference in the world when it comes to rare diseases like scleroderma.

 

It's very hard to tell what the scan results really mean, isn't it?  It's possible they might just view this as being her baseline test. Hopefully nothing from this round will require treatment.  But we will be all ears for the results of the meeting, and I will be sending lots of good thoughts your way.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 26 February 2013 - 12:14 PM

Hi Shauna,

 

I'm so pleased to hear that Madison has a new rheumatologist whom you both like and in whom you can have confidence; it really does make all the difference.

 

I have lung involvement and can understand that you're both feeling a little worried about the outcome of your consultation tomorrow. However, as Shelley has said, it may just be her baseline tests and the fact that you've found it early may help her as it did with me.

 

Please do let us know how you get on with your appointment with Maddie's pulmonologist tomorrow.

 

Kind regards,


Jo Frowde
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#4 Shelley Ensz

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Posted 28 February 2013 - 09:11 PM

Shauna, what have you found out from the pulmonologist?  Are things basically okay (considering, under the circumstances) or are further tests or treatment necessary?

 

I am thinking about you and Madison and sending some extra warm hugs your way.

 

:emoticon-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 madisonsmom

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Posted 04 March 2013 - 09:56 PM

The pulmonologist said that it "could" be related to her sclero, or it could be from previous lung infections. She said they will do a full lung function test at next appointment, and repeat CT scan in 1 year...as well as watch her closely. We had played phone tag for a week so she finally left me a message on my phone, so I still haven't been able to actually "talk" to her. I would LOVE for it to be scar tissue from past infections, but she hasn't really had any lung infections that we know of :(. I really trust this doctor and know that she will do what is best. I feel better that she didn't want to do a lung biopsy or anything. I feel like if it were really bad they would have done further testing. We go to rheumy in 2 days, so I am anxious to hear what she says. Also, Madi's legs are getting visibly worse - shiny, tight below knees and places of indentions on upper legs with red lacy pattern...rheumatologist pointed out the lacy/splotchy areas were "new" sclero. On a good note - no limitations in joint movement so far, and her attitude is still good :) . For a disease where I feel there is little control over, I feel pretty much at peace with everything at this point. (But I am allowed to change my mind tomorrow - :lol:)



#6 Joelf

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Posted 05 March 2013 - 11:58 AM

Hi Shauna,

 

Thanks for updating us.

 

I do hope you get a positive outcome from your appointment with Madi's rheumatologist.

 

Kind regards,


Jo Frowde
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#7 Shelley Ensz

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Posted 05 March 2013 - 01:00 PM

Hi Madison's Mom,

 

What's great is that now you have baseline testing for her lungs, so if anything changes, they will be able to know it and treat it.  People can even have flu and pneumonia without being aware of it, so it is not in the least bit unusual for there to be scarring and unusual bits and blobs of stuff discovered on someone's first in-depth scans. The technology today is so much better than when we were kids that it almost always tosses up some sort of abnormalities in every test. Thankfully a major portion of them are more like background noise; bothersome but never dreadful or fatal.

 

However, if you look up most of those test results on the internet, it can be downright frightening; and I say that even as being part and parcel of the internet. I looked up the results of my first lung scan on the internet and was very happy that I had my funeral planned already, because from the sounds of things it'd be curtains for me in a matter of months if not weeks. Then I had to go through a grueling two years of follow-up scans to make sure that this, that and the other thing were not cancer or ever-worsening fibrosis.

 

I'm a pretty level headed person (at least when it comes to other people's troubles!) and I've been around the hospital block a few times so I know not to over-react to stuff, and that it's all just stuff, but I have to admit that I do wish someone -- anyone! -- had told me that the primary problem we encounter when we are ill is that we simply have to have some scans, and the scans today are so sensitive that they often provide more questions than answers.

 

Now what we all want is for there to not be any significant changes from the lung baseline for Madison.

 

It's very concerning that her skin tightness is worse. I sometimes get a purplish lacy pattern, usually on my legs or around my knees, that they call "livedo reticularis".  It's actually quite harmless in itself and thankfully doesn't need any treatment at all.  I don't think its related to worsening scleroderma.  But her doctor may have been noticing something other than that, so it's a hop skip and a jump to say it is livedo.  Please let us know how things turn out with the rheumatologist. I'll be sending lots of warm hugs your way!

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 madisonsmom

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Posted 06 March 2013 - 09:30 PM

VERY long day today! Upper GI with small bowel follow through, IV infusion, ARNP (Advanced Registered Nurse Practitioner) looked at Madi, then Rheumatologist looked at Madi, and to end the day she had a dentist appointment. At least we accomplished a lot :)

Rheumatologist said that she wants the CT of lungs to be repeated in 6 months rather than waiting 1 year. Madi will be finished with her Solumedrol infusions by then as well... to see if that helps at all. She said that the results were not "typical" for what they normally see...but that she doesn't want to dismiss it either. She also wants to complete the full 6 doses of steroids rather than stopping at 3 or 4 as mentioned as a possibility before. The reason for the full 6 doses is because of the changes on her legs as well as to cover the lung issue just in case it is related to scleroderma. She also said that the 2 cm bulla is too big to be dismissed, although not huge. Pulmonology had already planned on doing a full PFT at next appointment anyway - but that is what Rheumatology wanted Pulmonology to do next, as well as doing the next CT in 6 months.

SO...I DO feel better knowing that this is not "typical" with what they normally see in the lungs with Systemic Sclerosis! And...I am relieved that they will repeat the CT in 6 months vs 1 year. And hopefully in the end, the lung issue will turn out to be related to a past infection or something else not so severe.

As for her legs, hoping the steroids and methotrexate will stop it from progressing too far. Still loving the new doctor and feel like they are treating her with an appropriate amount of aggression without over doing it too soon.

Thanks for all the hugs and thoughts!



#9 Joelf

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Posted 06 March 2013 - 11:11 PM

Hi Shauna,

 

I'm very pleased to hear that you and Madi have had quite a positive appointment with her rheumatologist and you can feel that her medical team are doing the best that they can for her. Unfortunately, Scleroderma is such a complex disease and because it affects everyone so differently, the treatment very often does require lots of different approaches to be successful.

 

Please do keep us updated on how Madi is getting on with her treatment.

 

:emoticons-group-hug:

 

Kind regards,


Jo Frowde
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#10 Shelley Ensz

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Posted 07 March 2013 - 12:08 PM

Hi Madison's Mom,

 

I'm delighted that you are happy with the care that Madi is receiving. It is such a relief to feel the comfort of being in good hands with such a serious illness, isn't it? 

 

It sounds like a great plan to do the scans and some testing again in six months. Then you will know if her baseline was just "one of those things" or indicative of other problems, and if it does turn out to be something, it is at least caught early on.

 

:excl: You are probably well aware, from reading elsewhere on our forums, that we try to remember to issue a standard warning for scleroderma whenever anyone mentions steroids, since newbies or their doctors who may stumble upon the discussion may not be aware of the risks. So here goes our standard warning: Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma, "Corticosteroids strongly increase the short-term risk of developing scleroderma renal crisis! It also causes a 70% increased risk of developing pneumonia. Read more."  And of course, steroids should never ever never be discontinued without the advice and consent of a physician because doing so can cause or worsen very serious health problems. If your doctor has not already mentioned these special steroid risks pertaining to scleroderma, you may want to print off the warning page and discuss it with them, just to be on the safe side.

 

It sounds like Madi was really put through the mill yesterday.  I'm sure this puts extra pressure on her to get caught up with schoolwork and time for friends as well. It's such a relief to have days like that over with, isn't it?

 

:emoticons-group-hug:
 


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.