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JG07

Diagnosed Today

15 posts in this topic

Had my appt today - Have sclero, Reynaurds, COPD/Emphes. ( never smoked)

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

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Hi J,

 

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.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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J,

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.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Bless your heart! I just got a definite diagnosis in December. It is mind boggling. I still can't believe it. Focus on those precious grandchildren. I will be turning 50 in March. I am still raising my son. I was a late bloomer. We adopted him at 26 days old 15 years ago this October. He provides great joy! A big hug is headed your way. My husband and family are still devastated. I too find myself comforting them. This forum is a great outlet!

Nan

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Hi,

 

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.

 

xoxo emmie

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Well, you sound like a very strong person but no matter how strong on the outside, we all need to be hugged, comforted and told everything is going to be okay - even if we don't believe it.

 

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.

 

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi,

 

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.

 

Warm wishes,

Heidi

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Well what I would do to find a Pulmnologist in your area is see if there is a support group in your area and see if they can provided you with any information in to finding one. Plus don't forget to ask your primary doctor or sclero doctor. Maybe try going online and see what they can provide you with. Or call your insurance company. Well I hope this help and dont let your family get you all stressed out.


Sam

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Wow - you certainly have your hands full! I remember when I was diagnosed with sclero. The next month was a blur. So, just breathe -- you will get through it. With regards to your condition, I would recommend that you see Dr. Wigley at Johns Hopkins. He works with Dr. Robert Wise who is a leading pulmonologist in both Sclero lung involvement and COPD. I also have sclero with lung involvement and have seen Dr. Wigley who referred me to Dr. Wise for further testing. Both doctors have worked together for 20+ years and I found both to be very competent, responsive and kind. Do not be surprised if it takes you 3 months to see Dr. Wigley as he only sees new patients on one day per week. Locally you should have a good rhumey and pulmonologist who can implement Dr. Wigley/Wise instructions and maybe do some "hand holding" as needed. I wish you well. Gidget

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Oh, I forgot about Duke's Scleroderma Center. They are closer to Florida and probably have the same expertise as Johns Hopkins. Others on the forum can comment on the doctors at Duke as I do not have any personal experience but I am sure they are very good. You need to seek the best treatment possible for your lungs. Regards. Gidget

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Thanks for all the positive - my new rheumatologist did her followship @ Duke - so I hope I am on the right track - I will be going to Jackson memorial in Miami to see pulmonologist

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Hi J,

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.

 

Take care,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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update - I am going to have my esophogas stretched on Thursday - I cannot eat much and the weight loss is too scary I am now on Imuran and I will be seeing the Pulmonology team @ Univ Of Miami on April 4 -

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Good luck with your esophagus stretching JG07 - I hope it helps you gain some weight back! I had that done once; it worked well and it went quickly too - they gave me meds and when I woke up it was done, and I went home and ate pizza that night - I hope it goes that well for you too!

Best wishes,

Karen

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JG07

 

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!

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