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Disability & Having Lung Involvement


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#1 Member

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Posted 23 November 2006 - 04:21 PM

I am curious. It does not seem that many members are on Disability. For those of you that have lung involvement, have your doctors recommended you go on Disability? I went on it within months of being diagnosed and it seems odd. I am only 39 and have been diagnosed a year and a half.
Thanks,
Jennifer

#2 Sherion

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Posted 23 November 2006 - 05:21 PM

Jennifer, I'm on disability but not because of my lungs. I got it due to fybromyalgia, many years before sclero.

Sherion

#3 peanut

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Posted 23 November 2006 - 05:57 PM

I have lung involvment. I'm 27 and my lungs are the equivelent of a 80 year old so the tests say but my pulmonologist says that I can fully function on these old lungs. She says I should continue to work for as long as I'm able or as long as my boss can put up with my many doctor appointments. My doctor said disability can be difficult - 6 months for medicare to kick in and 2 years for the checks... so she said. She told me to look into private disability insurance, which I have and I was immediately turned down. My work has a disability program for up to one year, which I might look into. How has being on disability been for you?

Practically I need to work because I get amazing insurance and it helps keep my mind on other things. I tend to think about Scleroderma a little too much because I've been recently diagnosed and wanna know all I can, but my brain and my hubby do need a break.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 Patty

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Posted 23 November 2006 - 11:28 PM

Jennifer,

My doctor told me to apply for this a couple weeks ago. I hve heart involvement that is going to lead to lung involvement. I get SOB when walking due to the heart trouble. I also have Dermatomyositis so that helped him suggest that I apply I think. It feels like what ever I have exactly is going warped speed!! Every day it seems something new showes its face.

Hugs,

Patty


Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#5 Member

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Posted 24 November 2006 - 03:37 AM

Peanut,
I want to see more kittens you've done!!! I love it.
Would you share with me (and the world) the results of your pfts? I want to compare and if you wanted you could just send me a private message. :)

I did have private disability insurance. I still had to go through the motions of going through social security (it's complicated, I worked for the government). I was approved within two months but still must wait two years for Medicare to start, like everyone else.

How's it working for me? I am very grateful. I feel better than I did and I wish I just KNEW I could blame it on the luxury of not having to work 40plus hours a week and all the stress to boot. I get so much more sleep, I am able to exercise (which was very difficult when I worked...just too tired and who wants to after work). Admittedly, I feel somewhat ashamed for not working. I wish I could get past that, but there's that stigma attached (at least there is in Arkansas) and I feel like I am "living off the government". In my heart I know that is not the case but I guess I worry about what others think too much. Why am I saying all of this....I guess because it's been bothering me. It's very hard to make ends meet, but I know it's worth the trade because without our health, what do we have?
What is stressful is not being able to pay bills on time, or at all and worrying about retirement and how you will be in ten year.

All in all, I am happy not working. I would imagine that I won't be working again unless I want to because unless there's a break through, the lung fibrosis is not going to reverse.

Good luck on trying. It was not that difficult for me but I guess the first step is having a Dr. that really believes you should not be working. I never asked to not work (and I remember crying my eyes out at the thought of leaving my job), my DR. told me I shouldn't.

Let me see more kittens. I am going to the shelter Monday to pick one out with my Mom for her!

Go Razorbacks,

Jennifer

#6 Member

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Posted 24 November 2006 - 04:26 AM

Patty,
I love your lemonade quote!
I think that you will enjoy not working and taking care of yourself, so I hope you are OK with it. My paperwork went easily, but I've heard others say it was difficult. If you can, get as many doctors as you can to complete the Physician's form. In my case, there were three, one that your employer completes, one that you complete and one for the dr. I had four doctors (cardialogist, Primary Dr., Pulmonologist and Rheumatologist) do mine. All four doctors. filled them out the same, and two of the doctors had not relationship at the time, with the other two, so that was reassuring that I was going in the right direction by quitting my job.

What is going on with your heart? I'd like to know a little more if you don't mind. I have a slightly enlarged heart but I thought that was fairly common. Also, I have a little liquid around mine. Does anyone know how that happens?
Jennifer

#7 Patty

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Posted 24 November 2006 - 12:03 PM

Hi Jennifer,

I have what the doctors call left ventricular diastolic dysfunction. I had a heart cath about 6 weeks ago to look for PAH and instead of that I have this . It means that I have a stiff heart on the left side.It causes SOB and chest pain.

I really do not know much more then that I'm sorry to say. I take a BP med for it but have only been on it a few days so I do not know if its working yet. If I learn more I will let you know.

Hugs,

Patty


Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#8 Member

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Posted 24 November 2006 - 01:00 PM

Patty,

I am very sorry to hear about your heart problem. I just did a quick search on your condition because I really did not know about it. I wish you the very best and I hope your new medication keeps your blood pressure down. You have a wonderful weekend, ok?

Lemonade,

Jennifer



#9 DBHYGRELL

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Posted 25 November 2006 - 11:41 AM

I have pulmonary fibrosis that is progressing despite medication. My doctor said that 15% of patients with scleroderma and fibrosis do not respond to medication - is this true? I am very worried about this. Here are my pft's: my fvc is 69% and my dlco is 46% I also have mild pah and a stable pericardial effusion. What are you pft's so I have something to compare it to - if you don't mind sharing.

Thanks,
denelle

#10 janey

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Posted 25 November 2006 - 01:17 PM

Denelle,
Welcome to the ISN forum! I'm sorry that you have joined us due to your diagnosis of SSc and your development of pulmonary fibrosis; however, I think you will find that you can always come here for support and information. It's a great group of people with lots of experience.

In reference to your question about SSc patients not responding to medication, I did find a study here on ISN that states "Immunosuppressive treatment is not effective in preventing the development of pulmonary involvement. However, it delays the manifestation of pulmonary symptoms for nearly 4 years." [The natural course of progressive systemic sclerosis patients with interstitial lung involvement.] There have been several studies on the treatments for pulmonary fibrosisthat have had positive results in at least stopping the progression of the disease. I've been on Bosentan for two months now and I can say that I haven't gotten worse and maybe a little better. I get an Eco and PFT in December to check for changes. I have a mild fibrosis and pulmonary hypertension.

My latest PFT on 9/11/06 showed my FVC @ 63% and dlco @ 64%. However, the Dlco/VA was 94% which is good.

Please keep us posted on how you are doing and feel free to join in anytime, ask more questions and just keep us updated.

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)

#11 Member

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Posted 25 November 2006 - 02:40 PM

Denelle,
My DLCO is 48% and TLV is 59%. The numbers were higher a year ago, so mine are steadily declining. I've been on Cellcept and the numbers are still going down and I try my hardest at the PFTs. I feel like I am giving it all I can.
My Dr has never given me a percentage of people that do not respond but let's hope that we are not one of those people. I feel better but I truly think it's because I moved to a much lower altitude. Do you require supplemental oxygen?
Janey's article stated that people get lung involvement at the mean of seven years and that would be me. I had all the symptoms years ago but because I have sine sclero it went undetected I think.
Bummer, but it is what it is...and I try to believe that if it weren't this it would be something else. :)
Take Care,
Jennifer

#12 Member

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Posted 25 November 2006 - 02:42 PM

Denelle,
What medication are you on, if it's not too personal...

#13 DBHYGRELL

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Posted 25 November 2006 - 03:39 PM

I am on cyclophosphamide - but I am expecting to be switched to cellcept soon if my pft's decline on Dec 21. I am not on oxygen, but I often have chest pains. I also feel weird when I am trying to sleep - like I can't breathe properly. I have been diagnosed since Feb 2006, and have probably had it about 3 years. I am terrified of O2 and what the future holds - but that is because I tend to overreact to things.
Denelle