Posted 07 February 2007 - 03:18 PM
Pulmonary Hyperinflation and fibrosis on outter lining of lung - High risk for yet another collapsed lung - Trying to find a knowledegable pulmonologist in S. Fla -
Coral Sp/Ft. Lauderdale area - I am trying to absorb it all - It is alot of info - @ least I finally have an answer . - I just turned 50 I have 2 little grandsons 16 months & 3 months - The thought of not being able to run around and play withthem - and bend down and scoop them up is hard - pulmonary involvement is very scary . - My family is very upset and I am the one trying to calm them down. Thanks for listening
Posted 07 February 2007 - 03:35 PM
Although it is nice to have a diagnosis it is hard to cope at times. I remember feeling like I was going to die the next day after getting my diagnosis and that was 7 years ago. Take the time you need to adjust - it will take time. But know there are so many treatments these days and so try not to think of the worst.
Here is a link for you on emotional adjustment.
Hang in there.
Posted 07 February 2007 - 03:59 PM
One of the most important ways to overcome such a diagnosis is to continue to look at the future and what you can do, not what you can't. Yes, your plans change, but that doesn't mean the changes are bad. I'm sorry that you do have lung involvement but with the new meds and treatments it is possible to keep it from getting worse. Ask your current doctors about a good pulmonologist and get in to see one soon. Hopefully one that is familiar with sclero lung - it's different and needs to be treated different. Good luck to you Darling. Life changes, but it moves on and with grandchildren to carry you through, you are a very lucky woman.
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Posted 07 February 2007 - 04:32 PM
Posted 07 February 2007 - 05:29 PM
I want to say welcome, but so sorry it's because of this horrible diagnosis. It is overwhelming and will probably be even moreso once you're done calming the family down and you begin doing some reading and researching on your own. Be sure to check in here when you need support. There are lots of very knowledgable and supportive and caring people here. We help each other out a lot.
Janey makes a great point about trying to find a pulmonologist who has treated scleroderma lung diseases. Try the University hospitals if possible. And grandchildren, don't get me started! I have 2 and they are what keep me going. On the worst of days, they can make you smile!
I'm glad you found us...take care and keep us posted.
Posted 07 February 2007 - 05:57 PM
I hope your family is understanding of your feelings and doesn't lean on YOU too much for comfort. You don't need to be the rock right now, you are the one who needs a rock.
Don't forget to keep in touch with us here. Although sometimes I feel like a pebble, I can be a pretty good cyber rock.
Hang in there. Cyber hugs to you and your family.
Posted 08 February 2007 - 02:26 AM
Wow! That is a lot to take in, I am sure. It is a double-edged sword to get a diagnosis (and multiple ones at that!). I am sure you feel somewhat relieved to finally know what is going on and have a name to put to all your symptoms...and hopefully, now your doctors can get you on a good treatment plan. BUT, it is certainly overwhelming to be told all of that! Just know that we are all here for you as questions begin to arise or if you just need to talk or vent.
Posted 08 February 2007 - 04:18 AM
Posted 08 February 2007 - 04:56 AM
Posted 08 February 2007 - 05:46 AM
Posted 08 February 2007 - 01:55 PM
Posted 08 February 2007 - 03:49 PM
Welcome to the forums! I am so sorry you are recently diagnosed. but now you have answers and you can make a plan with your dr.'s and meet this head on! It is so scary not knowing what is going to happen, when or if it ever will. Try to live every day to the fulliest and enjoy those grandbabies.
Please keep us posted on your up coming appointment.
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Posted 18 March 2007 - 07:50 AM
Posted 19 March 2007 - 02:40 AM
Posted 19 March 2007 - 08:56 AM
Sorry to hear about the diagnosis. My first month was a blur and at times still is. I was diag. Jan of this year and even after all of the tests, bad news, etc I still have the 'bad' days. Had my esophagus stretched last week- wow what a difference. This forum is fantastic. Even if I don't respond, it's wonderful to read and get comfort by osmosis.
I'm off to S.C. to the university this weekend to see the specialists- hope still exists it's just sometimes you have to dig very deep to find it. I'm sure that you'll be able to handle this and the people in this forum will help you whenever you need it!