Tuesday, April 2, 2013

April is Sarcoidosis Awareness Month

Back in November, I posted a personal entry...something I normally don't do, and today I am going to post another non-crafty story of my family.
 


What is Sarcoidosis?

"Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease that can affect almost any organ in the body. It causes heightened immunity, which means that a person’s immune system, which normally protects the body from infection and disease, overreacts, resulting in damage to the body’s own tissues." ~StopSarcoidosis.org

Haven't heard of this disease before?  I think you might have...the following celebrities have died from complications of Sarcoidosis (you don't die from Sarcoid...it just ruins organs and makes it harder to recover from certain illnesses).

Michael Clark Duncan
Bernie Mac
Reggie White
Van Ludwig Beethoven

Other Celebrities that are currently fighting this disease:

Judge Joe Brown
Karen Duffy
Bill Russell
Tisha Campell-Martin
Evander Hollyfield
Downtown Julie Brown
Floyd Mayweather, Sr.

My (Our) story

The last week of 2009, my husband came back from Reno with a rash all over his body.  Bed bugs?  No.  New detergent?  No.  He finally went to the doctor two weeks into the rash that would not go away.  He went to a dermatologist--got allergen tests done.  And after talking to his general doctor, he also went to a gastroenterologist--got test done.  He had an ultrasound, then a CAT scan, and ultimately, a PET scan.  All showing signs of "lesions" on his spleen and there were also traces in his lungs and in some of his lymph nodes.  First thought is Cancer...even though his blood work was coming up negative for leukemia--that was what the doctor and we thought.

My kids at the time were in 8th and 9th grade...seriously, how was "I" going to get through this.  I had just literally watched my uncle die from stomach cancer on February 4, 2010 and I could not do that again...with my children!

For weeks, we googled different diseases on our own.  We both came across an article about Sarcoidosis.  One thing that stood out to us was on WebMD "Most patients initially complain of a persistent dry cough".  (Yeah, I know it isn't the most effective way to diagnose someone and we aren't doctors, but we searched the web.)  For as long as I could remember, he had this dry cough all the time.  If he was "lost" in a store, you just had to wait a few minutes then you could hear the cough and know where he was.  We both found this information separately.  He brought it up to his doctor who just dismissed the information even though the cough, the rash, the "lesions" on the spleen were all signs. 

We talked to the surgeon and he called the Oncologist while we were there to see if there was a way to get a biopsy done on one of the lymph nodes...but our best bet was to have the entire spleen removed in one piece (which meant no laparoscopic surgery...he was going to be cut open the old fashion way).

On March 4, one month after my uncle had died, my husband went into surgery.  Talk about the longest day in history.  I sent my kids to school and I waited with my husband until he went under the knife.  He was pushed back on the surgery schedule--blah!  But he finally went into surgery.  With me, I had taken some crocheting, a book, and other items to keep me busy...I didn't open the bag...I just carried it around with me all day long.  After he was taken into surgery, that is when people came to sit with me...I was never alone at the hospital waiting.  My mom picked the kids from school and fed them.  They waited.  He was finally out and they made me wait alone (forever!) until the doctor could talk to me...I don't know how many thoughts went through my head..."Why was it taking so long for the doctor to come talk to me?"...

Surgery went fine and even though the doctor couldn't tell me his thoughts, he did give me a hint that he saw the lesions on the spleen and he didn't say it, but I felt like he knew they weren't cancerous. 

Finally at 8pm, we were able to finally see him.  The kids said goodnight to him and went home with my mom.  I stayed a while longer while his dad and some of his friend popped in to wish good thoughts.  I was at the hospital (with the kids, without the kids) for 5 days (Thursday through Monday) until he was finally released.  I stayed home from work that entire week to get the kids were they needed to be and to make sure he wasn't driving anywhere.  After days of waiting, we finally got the call around noon on Wednesday...it was NOT cancer.  We were relieved.  It was a happy day.

Then we had to find out what was wrong with him.  There isn't a test to find out if you have Sarcoidosis...you kinda just have to rule out everything else.  We were finally told he had Sarcoidosis.  Then you do the real research...Celebrity deaths at a young age...Real people complaints are all over the internet.  Maybe having something like Leukemia that you can fight and get rid of wouldn't have been as bad after all.

He has tried Prednisone which didn't help him.  He has had 1 of his lymph nodes removed.  He's had a ton of blood work done.  He's had a bronchoscopy done.  He's seen many doctors along the way.  But currently, he only needs to carry an inhaler for the times he gets short of breath.

The major thing for him is to not get sick because a cold can become pneumonia real quick and without a spleen on top of Sarcoid, it is harder to fight off any sickness.  He has had bronchitis since then and it kicked his butt.  Almost any time he is on a plane, he gets sick (but don't we all).  Last year, he broke his ankle and it got infected...they had to give him a major shot of antibotics right away to fend off the infection. 

But people do go into remission with Sarcoid. His Pulmatologist (yes, he has his own) told him recently that she thinks it is gone from his lungs.  But that doesn't mean it won't come back.  Sometimes he gets a rash on his hands.  Sometimes he feel like his hands are in a vice.  But for the most part, after 3 years, he is fine, thankfully.

Helping others

If you make annual donations to charities and are thinking of donating to a new cause, please look into the following:

www.stopsarcoidosis.org
www.nationalsarcoidosisorganization.com
www.berniemacfoundation.org

Thank you for reading our story :)

3 comments:

  1. I thank you for sharing your story I actually came across it by accident. I was looking at images and the image used at the top is my butterfly so I read your story. I am so proud that it can be use twice to bring awareness that is why It was designed for and it's purpose. God bless you and your family.

    ReplyDelete
    Replies
    1. Thank you. I am sorry the photo wasn't credited. I don't remember where I got the photo from (well off the internet somewhere) and I cannot find it again. Thank you--it is a beautiful drawing. I wish I had your contact info so I could properly credit it :/

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  2. Learning about it. ...
    Just got diagnosed with it. Feeling afraid. Any other info i can read?
    Thank you in advance.

    ReplyDelete

Thank you for taking the time to read my blog. I love to read your comments! I usually reply to all comments, but I don't think a notification is given once I reply.

Also, I have been told that sometimes the comments do not show up...I do not know why that is...if it doesn't show up, then I don't see them.

Unless it is spam...I do not delete any comments. :(