Sarcoidosis? Ever heard of it?

[lynda]

Hey everyone. It's been a long time since I've visited or even posted. I had surgery to biopsy a lymph gland in June after a serious bought with pneumonia and pleurisy. It's been discovered that I have "sarcoidosis," which is an inflamatory autoimmune disease. I'm trying to learn more about the disease, but there is a lack of in-depth information out there, and the book I bought about it is, frankly, scaring me. Does anyone have any personal experience with this disease? I'm wondering if I will ever be able to work out again, as I'm experiencing extreme shortness of breath. Thanks for all of your prayers. The support I received from this site has been amazing and meant so much to me.

Lynda

 

[kmkali24]

Hi Lynda. I don't know anything about it, but I will keep you in my prayers. Take one day at a time. That's all any of us can do. I hope you're feeling ok. Please keep in touch.
Kali

 

[Kit_]

Hi Lynda,

Here is an information packet about it. You may want to check out the National Heart Lungs and Blood Institute, a lot of times they'll have contact information for support groups etc. Which will allow you to talk to others who have the same thing, and see how they get around it, and do the things that they want to do.

Here is the info, you'll need acrobat reader if you want to read it for free. Acrobat is free.

http://www.nhlbi.nih.gov/health/public/lung/other/sarcoidosis/

the National Heart, Lungs and Blood web page is here:

http://www.nhlbi.nih.gov/

here is a website by a doctor who is also interested in this disease.

http://www.sarcoidcenter.com/

and here is a search page, that I just did that should give you some more links

http://www.google.com/search?q=Sarcoidosis&sourceid=mozilla-search&start=0&start=0&ie=utf-8&oe=utf-8

Make sure you copy the whole URL for that one.

Hope that helps and I'm really sorry about you having sarcoidosis, but I hope you find a way to manage it and have a normal life. I have two autoimmune diseases Lupus and S’jogren's and it's up and down, a lot. For mine, I've found diet and exercise play a huge role, I skip a workout, or eat badly for a day, and I'm in bed the next day.

But do shop around and find the best doctor you can that listens to you. And make sure they are familiar with your disease, because if they aren’t they won’t be able to really help you much. It will be trial and error and you really don’t want to be a guinea pig right at this moment, you’ll end up being one anyway, but at least get the basics covered before you let them experiment. As there will be a lot if time, you’ll be offered an experimental treatment that only works for ¼ of the people who have what you have. Sometimes your in that ¼ and sometimes your not. If you are, you might find something that really works for you.

Good luck,

Kit

 

[lynda]

Thank you so much for your replies and the links. I agree with you that you have to take it one day at a time. I want to be as well-informed as I possibly can. What type of diet do you find helps? I haven't gone back to working out yet. I'm so tired and weak. I do miss it terribly, and I'm trying to figure out the best way to ease myself back to at least some level of activity. Maybe just a walk around the block to begin with. It's hard to believe I was doing Imax 2 a few months ago, and now I have trouble getting up a flight of stairs.

 

[Kit_]

Lynda,

I know the feeling, when I broke my back, and collapsed both bottom parts of my lungs at the same time. Somewhat illness related as well as bad reaction to medicine. I actually didn't think I'd ever walk again, Cathe was this really far out dream that just didn't seem to be reality. Or at least not in my reality anymore. But if you put your mind to it, you can do anything.

As for my diet, I stay away from red meat, it's known to cause Lupus flares I stay away from anything with alfalfa sprouts which includes any vitamins. The rest of my diet is pretty simple lots of veggies, protein and carbs. All of them lean or whole grain, very little fat until it come from nuts or fish. I try to eat fish as much as possible with as expensive as it is around here, that's now down to once a month. Also I try to really break up my meals, I usually will eat every 3 hours, or I'll make it where I eat about every hour with a bit of this or a bite of that. I do that when my energy is really low as that for me seems to help a lot, getting food every hour increases my energy 10 fold on bad days. which sounds like a lot, but basically means I can do the normal house work stuff.

For exercise do start really slow, lower then you actually think you'll need to go, this allows your body to get use to it, and if you have an attack it won't wreck havoc like it would if you had been at the level that would have actually pushed you a little. It took me forever to learn that step, I always wanted to jump right in, then I'd be in bed for a week. Now I know to only do something that is half boring, the first day, then add on each day.

Hope that helps, I wish I could give you more tips, but everyone's illness is different even those with Lupus don't always find the same tips helpful. So make sure you listen to your body and if it gets upset to stop at once. But it always seems the energy is the last to come back, at least for me.

Kit

 

[luvtorun]

Lynda,

My DH has sarcoidosis. He was diagnosed in 1999. He had a very bad cough that would not go away and he had a chest x-ray. It showed hilar lymphadenopathy. He had a thoracotomy with a biopsy that came back sarcoidosis. He never had to go on steroids as his cough went away and a six month follow up chest x-ray showed him to be in remission. He has had chest x-rays yearly and it has yet to reappear. He will still get long bouts of coughing occasionally. It looks like someone gave you some links to look at. His doctor told him that the disease was pretty obscure and there was no known cause. At least that was our information.

 

[Renee McFar]

Hey Lynda! I am sorry to read aobut your troubles.

I am a Respiratory Therapist. I do not have sarciod but have worked w/quite a few patients that have sarciodosis.

it sounds like you got your diagnosis fairly quickly. That is good. That way they can go ahead and start treating your "flare". If your chest x-ray shows a fair amt of inflamation, they will probably start you on a course of oral steriods. This will decrease the inflamation in your airways, help you breathe better and prevent any more damage at this time. You may have to stay on a tpering dose of steroids for several months. Read up on this becasue they can make your body feel like poop...but they fix the lung problem, which is the most important thing.

Most patients I have worked with can be maintained with oral steriods unless something triggers a flare.

Sometimes sarcoidosis will also cause your joints to ache. There is good news. It is a treatable disease, not curable but very treatable. I would not try and keep up with Cathe workouts at this time. Do keep as active as you can. Walk as much as possible, maybe even invest in a treadmill.

Your shortness of breath will get better. Please do not lose patience with yourself.

98% of the patients I work with at the doctor's office are able to do almost anything they want to do. Please try and have a pulmonary doctor follow your sarcoidosis. Make sure you get regular chest x-rays and pulmonary function tests.

LOL to you.... Renee

 

[Elaine Keller]

Lynda,

So sorry to hear about your illness. It's good that it's not leukemia as you feared it might be. Hopefully you'll be feeling fine soon and will be able to get back to the beloved Cathe. I'll remember you in my prayers and please keep us posted.....