• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Sign in to follow this  
Followers 0
Sweet

Lung Nodules

62 posts in this topic

Hello Sweet,

 

So pleased to hear that things are not as bad as they might be. Onwards and upwards - more or less.

 

I had Mitral Stenosis until May last year when it was repaired by Balloon Valvuloplasty. An absolute piece of cake. I was in the cardiac ward for about 2 nights then home again and greatly improved.

 

I guess it will depend which valves are involved and what sort of damage they have whether you will benefit in the same way in the future. The damage to my valve was calcification from rheumatic fever, I don't know what other sort of damage causes the leaves of the valves not to close properly.

 

Let's hope you can get some help before too long. Actually, I know they don't usually do anything when it is only minor but I was lucky enough to get my treatment when the damage was only moderate because the cardiologist needed to be sure it wasn't PAH as well.

 

Warm hugs from your favorite little country!

 

Judyt

Share this post


Link to post
Share on other sites

Hi Sweet,

 

I am so pleased that things are much better than you feared, although the results from your ECHO are a bit disappointing. However, hopefully your doctor will be able to revise your medication to help everything to run along smoothly and you'll be able to enjoy life again with your family without such an awful worry hanging over you.

 

:emoticons-group-hug:

 

Best wishes to you,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Sweet, in scleroderma mild to moderate PAH can remain stable for long periods of time, so if your PAH is mild to moderate it could stay that way for ages! :yes:

 

Barefut's little ditty nearly made me cry, I read her blog about meeting you, clearly you left a great impression! :terrific:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Amanda - thanks for the PAH info! It is a scary thing and I don't know enough about it yet to ease my mind about Pam. I can only imagine how she feels but know she is educating herself and staying on top of her doctors and her care. She is an inspiration to us all regarding being our own advocates and an inspiration to me in so many other ways as well.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

You guys are the best. Amanda I too appreciate your words. I'm not overly worried about any of this, so I'm hoping that in itself, will be of benefit to my health and life.

Oh yes, Barefut is my buddy, we wub each other lol


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Pam,

 

I think I missed a beat or two in this thread. For the possible PAH, have they done a heart catheterization, yet? That is far more reliable than Echo. I also have some minor valve problem but luckily it has stayed minor for nearly forever. Luckily, I do think many of us can acquire a whole closet full of minor things that can be stable for a long time. It's just such a shock when they are first discovered, and such a worry trying to sort out whether they signify a threat to our very existence, or whether they are another thing to just live with.

 

At some point here, I'm hoping that a Sclero Happy Dance is called for. It doesn't feel quite right yet, though. Will you let us know if/when we reach that more settled point, Sweet?

 

: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.

Share this post


Link to post
Share on other sites

Hi, Sorry I've been a bit out of the loop here. Having a hard time keeping up with life in general. :)

 

No heart cath scheduled, they didn't really feel it was necessary I guess. I think I'm mild enough they aren't overly worried about it, therefore I'm not! :)

 

We're talking meds right now. I have to research everything, just because that's my personality before I agree to take anything, but they are talking Tracleer?


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sweet,

That must be good news that they're not considering a heart catheterization and I hope everything settles down now for you.

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Dear Sweet,

 

There are several medications for PH. Right before my transplant I was diagnosed with it through right heart catherization and echo and applied to be started on Letaris ( the LEAP program) but the transplant prevented the introduction of any new drugs with the anti-rejection ones. I was very concerned about the drug when I researched it so was happy about that.

 

A right heart catherization, done by a person who KNOWS WHAT NUMBERS TO GET FOR SCLERODERMA, is the gold standard for diagnosis. My specialists said the two heart catherizations I had that were done by cardiologists locally did not give them the numbers they needed. If I need to have another one I will have it at my scleroderma center. And remember, if they do a heart catherization and they are only checking pressures and not looking for blockages they should NOT USE DYE. It can kill the kidneys.

 

Best wishes and keep us posted.

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0