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Discussion Starter · #1 ·
Hi,

I'm newly diagnosed with Lupus and the family has been suspecting this since last year.
Now it's diagnosed and I so have the need to know more about it.

I've severe breathing problems, because of my lung and the doc gave me a letter for a speed consult with the lung specialist this week.

I'm so glad I found your site with valuable informations about how to recognise a flare up and much more.

Thank you so much.

Margie
 

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Welocme margie, hope you enjoy being here with us all, i think you will find here most useful, hope you get the best care from your dr


take care Lin xxxxxxxxxxxx
 

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Hi Margie,

Welcome to the lupus site.

You have found the right site for information and very caring members. People from all over the world are on this site. They have a wealth of knowledge they have learned from dealing with lupus.

Knowledge is power so finding out all you can about your health is a great idea. I am still learning every day about lupus.

Just learning that you have lupus is a roller coaster ride of emotions.

Sorry to read how lupus is effecting your lungs.:hug:
It sounds like you have a good doctor to get you in to see the lung specialists fast.

Have a nice look around the site and if you have questions just post them. Someone will come along and reply.

There is also a chat room where you can go into and talk to other members one on one.

Take care and it is nice to meet you.

Lyn
 

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Margie,
Hi and welcome to the site. You are just finding out why so many come to the site lol. It is a good place to get advise and to make friends that truely do understand when you say you don't feel well. I hope to see you in chat sometime and get a chance to talk with you.

I hope that you are feeling well and doing well also.
 

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Hi Margie, welcome to the board. I agree with the others that you will find information here that many other sites don't have. There are members and moderators from all over the world. We range from newly diagnosed to those who have lived with it for decades.
Ask away......most likely someone has dealt with it, knows someone who has, or is also dealing with it.

Lupus can and does affect internal organs, lungs being part of it. A pulmonologist who understands autoimmune diseases is needed. Not every doctor has experience in dealing with autoimmune diseases. BUT, if you like the doctor, you can help to teach him/her what is needed to help manage your care. [I loaned my Du Bois lupus book to my pulm doc for about a year. It was worth it as I really like him as a physician. He is a superb diagnostician at dealing with autoimmune diseases.]

My early issue with sle was interstitial lung disease. While this is scary, take heart that it does eventually work itself out and you will be able to live more normally. Your body does eventually exist with less oxygen than we normally think it should have. It isn't fun, but it does get better. I've lost 60% of my lung function, and I have learned to live on less. :shrug: To me, it is a good life. So, hang in there........you can and will eventually get to a more level place in life. Learn to use a peak flow meter, keep your inhalers handy, and use a nebulizer if you need it.

I found that it helped me to keep track of my peak flow levels. I would take these to my pulmonologist appts and he kept them in my chart. It helped him to give me the best care. Set your mind that you will need to have a unified team of doctors. Keep them all up to date on what is going on.

Keeping a symptom journal helps both you and your doctors. Take it to your appts and go over it with your doctors. If you are having pain, rate it on a 1 to 10 scale.

There are tons of survival tactics we all have learned, you will learn your share too. There is life in, with, and through lupus. It isn't the same, but it can be a good life if you want it to be. :rose3:
Sally
 

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Hi Margie

Welcome to the forum. I am sorry that you have been diagnosed with Lupus, and that your lungs have been affected.

Margie, Pink Pearl has given you such wonderful advice, even though I have no lung involvement, Sally you really have the most wonderful way with words, and a postivity that is a shining example for me.

Margie again, lovely to hear from you.
 

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Karen, thank you for the compliment. I appreciate it. Hope you have a nice day tomorrow/today for you. We're having a spell of nice weather so I am doing my gardening early in the day or later in the day. :)
Sally
 

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Hi Margie

welcome sorry to hear SLE has effected your lungs but once you have your meds sorted you will start to feel better. Its a bit scary but can be managed I have lung problems too.

take care

dixy
 

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Discussion Starter · #9 ·
Hi and thank you for a warm welcome.

I already feel so at home here on the site!

Sally, your advice is wonderful! I have to buy a peak flow meter, because I need one to better control the symptoms.

I was so in need to talk to someone when I came to this site and to read all your responses is so wonderful! :)

Thank you very much.

Hugs,

Margie
 

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Margie, your pulmonologist should be able to provide you with a peak flow meter. I have about 4 different styles from hospital stays and testings. My favorite is a narrow one which is much more comfortable to use. I don't need it often, but when I have a lung infection it is handy for me to use to tell my doctor where we stand.

I'm glad I could help you to be more comfortable with your diagnosis. You'll get thru this, and then the next, and the next....

Take care of yourself.
Sally
 
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