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Early Cardiac & Lung Involvement


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#1 aka79

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Posted 04 November 2008 - 02:56 AM

Hello Everybody,

I got my results for my echocardiogram and PFT. I am devastated. I have mitral regurgitation and also obstruction of my lungs.

I am trying to understand how my heart and lungs got involved so quickly; I don't have any skin issues or Raynaud's.

I know that there is treatment for the lung involvement but have not found a lot of information about treatments that reverse the cardiac involvement. I think that the prognosis for early heart involvement is not very good and I am totally devastated.

I don't have any symptoms; I am not even tired. I know this disease affects everyone differently; but how could this have happened without me noticing anything.

It was sort of an accident that they did a SCL-70 test; if it wasn't for that I would have no clue of how sick I am.

Nothing makes sense anymore....

#2 ozzy69

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Posted 04 November 2008 - 03:51 AM

Hi Aka 79,

I am sorry to hear about your results. Is the mitral due to sclero? My son has mitral valve prolapse but has no regurgitation yet. We check it yearly.

On the good side, you feel ok and can start treatments early. Please try not to worry and do research on your options for treatment.

Lots of hugs,
Nina Lynn

#3 TJ903

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Posted 04 November 2008 - 03:53 AM

I'm sorry to hear of your recent diagnosis- but welcome to a place of hope and caring individuals. I have lung, heart, kidney and esophegeal (GERD - 3 dialations). It's been 1 1/2yrs since my diagnosis of systemis sclero, This website help to keep me sane and focused. This disease is different for everyone, and rest-assured there will be at least one person who shares your symptoms. Research, but try not to over-diagnose yourself, maintain good dialog with your healthcare providers, let your friends and family help where they can, and stop by here so that we can shower you with virtual hugs and good wishes! ----TJ

#4 janey

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Posted 04 November 2008 - 04:26 AM

Aka,
(((((((((((((((very big hugs))))))))))))))))))))))
I know reading something like "mitral valve regurgitation" is scary. In fact, anything related to the heart is scary, but let me reassure you that there are millions of people walking around with valve regurgitation - myself included. Both my valves regurgitate. It was seen on my ECHO's four years ago and every one of them since. I have "mild mitral valve r..." and "moderate tricuspid valve r..." My cardiologist at the time told me that with the sensitive equipment we have today, it can pick up the very slightest amount of regurgitation. In scleroderma, it's relatively common because the valve starts to lose a little flexibility. Here's a little information on it if you're interested.

Mitral and Tricuspid valve regurgitation.

I'm certainly no doctor but from what I've seen and read, heart and lung problems can occur at any time. One year and 3 months after diagnosis, I suffered from complete heart block resulting in a pacemaker. Year 3 I was diagnosed with lung problems. I still don't have skin involvement, but I have had Raynaud's since before diagnosis. So things are different for everyone. It's hard to predict when and why and even "if". Only about 10% of scleroderma patients have any heart involvement where as a much larger percent have lung problems. We just never know. The key is to stay in touch with your body and how you feel. Don't ignore new symptoms and don't let existing symptoms get worse. Get a good team of doctors and stay on top of them to make sure that you and the doctors are doing what needs to be done.

Are you seeing a pulmonologist about the lungs? Again, how bad is the obstruction? This is something that needs to be checked regularly. If you don't have symptoms - that's a good thing! Just keep moving and moving on. Make your doctors work for YOU so things don't get worse. Early diagnosis is a good thing. You want to stop it in its tracks.

Big Hugs to you Darlin'.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 lizzie

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Posted 04 November 2008 - 07:57 AM

Aka, I can understand that you must be feeling devastated, but the news may not be as bad as it seems to you at first sight. As Janey says, mitral regurgitation is extemely common in the general population and for the vast majority is of no significance. I have both mitral and tricuspid regurgitation on heart echo but my rheumatologist does not consider that I have scleroderma related heart involvement. Also the fact that you are not having any symptoms from your possible lung problems is good news, people are generally breathless with any degree of involvement. Have you spoken or seen your doctor/rheumatologist re the test results yet?
Lizzie

#6 Margaret

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Posted 04 November 2008 - 12:48 PM

Hi Aka ,

I have a mild mitral valve prolapse and moderate tricuspid regurgitation on heart echo, too, and I don't have sclero or any other autoimmune disease. It is very common.

Take care, Everyone.
Margaret

#7 Snowbird

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Posted 04 November 2008 - 12:48 PM

Hi Aka79

I'm also sorry to hear of your recent diagnosis but I agree, on the good side...it's also good news that you are still feeling well. Anyone would be devasted with that news, it's take you so off guard that's it's impossible to ever feel or be prepared for any of this. Unfortunately, that seems to go hand in hand with this disease, taking everybody off guard because everybody's symptoms are so different. Take care.
Sending good wishes your way!

#8 Gidget

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Posted 04 November 2008 - 02:47 PM

Aka79,
I'm sorry for your bad news. My only bit of advice is to just BREATHE. You will be OK and you will get through this. Unfortunately, you will have both good days and bad days and sometimes all you can do is just Breathe your way through them. Good luck. Gidget

#9 aka79

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Posted 04 November 2008 - 02:55 PM

Thank you all for your responses.
Truth is that I have not discussed these results with my Rheumatologist so I really don't know their implications or if they are sclero related. I assumed that they were.
I picked up the results myself and was dissapointed to see those "abnormal" results in the summary section. I might be overreacting; I don't know. I really hope I am :(

Janey:
I don't see my Dr until Nov 12 th. I guess I can pretend everything is and will be ok.
She did tell me to go see a pulmonologist over the phone; it seems like there are only 3 in my city and the closest appointment I could find was for Dec 23 <_< .
The report says I have "mild ventilatory obstruction with air trapment". I guess it makes sense to be just mild as I don't really feel breathless or anything.

It is so hard to find good Doctors; I guess this is something you all go through. It has been my major challenge so far. Sometimes I feel like I am telling my Dr what the next step should be and even what tests to run. Mostly based on information form this website. It seems like she just agrees to what I say. She still has not diagnosed me.

I think she is a good Dr but this disease is so tricky that I'm sure is a challenge for them.

I love this website. I feel more in control and better prepared to battle whatever comes my way. Even though it's hard to read how tough sclero can be; I feel more empowered and definitely can play a more important role in my treatment and final goal of well-being :):)

Love and Hope to all!!!!!!
Ana K.

#10 epasen

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Posted 04 November 2008 - 05:46 PM

Aka, so sorry to hear that.. I hope your condition will stay as good as it is right now! Take care, Emmi

#11 canon

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Posted 05 November 2008 - 07:10 PM

Hi AKA,

Am very sorry to hear about your heart and lungs. Please don't let stress take over. Every one here is so supportive and kind. Someone will be able to identify with you as many have done already. I don't have heart problems but do have some lung disease and a decline going on. As Gidget said, BREATHE.

November 12th is really close and you'll get some answers and support from your doctor. December is not that far away. You can do it.

With gentle thoughts.

Judy
A happy heart is good medicine.