Asthma: Just Part Of My Life With Churg Strauss Syndrome

I'm kind of hesitant to even talk about this subject here on Hub Pages, as I already talk about my life with Churg Strauss on my personal blog...but I feel at this point in my life the more places where I share what I live with on the net the more awareness I spread about this vascular condition.

Back in May and June of 2008 I found myself in a local hospital twice. The first time I was in the hospital for a week, and the second time I was in for a month with a condition that I had never heard of before. But I digress and my story actually begins at least twenty years before my eventual hospital stays in 08.

I need to go back at least twenty years to a lung biopsy and a diagnosis of the condition called Sarcoidosis or Sarcoid.

Below is a small description of Sarcoidosis...

" Sarcoidosis is a disease that results from a specific type of inflammation of tissues of the body. It can appear in almost any body organ, but it starts most often in the lungs or lymph nodes."

After this diagnosis that came about due to my having a severe chest cold and having taken a subsequent chest x-ray, I was introduced to my first aerosol inhaler...Proventil, a form of Albuterol.

Now, flash forward to the year 2005...on my birthday in July I was diagnosed with another step up the Asthma food chain so to speak...Chronic Obstructive Pulmonary Disease or COPD for short and just what is COPD...

Chronic obstructive pulmonary disease (COPD) is one of the most common lung diseases. It makes it difficult to breathe. There are two main forms of COPD:

  • Chronic bronchitis, defined by a long-term cough with mucus
  • Emphysema, defined by destruction of the lungs over time

I have the " Chronic Bronchitis " version, but by now I'm sure that you're wondering just where Churg Strauss comes into this and just how it is related to my asthma condition? Let me explain a bit further...by focusing on my disease Churg Strauss Syndrome.

So now we are back to 2008 and it's the middle of May. I've been in the hospital for about two weeks now, I have a Pic Line in my right arm because frankly the veins on my hands and arms were totally exhausted from the constant drawing of blood for testing. On a Tuesday morning, a biopsy was done on my kidney and this sample was sent away and the test results were that I had a disease called Churg Strauss Syndrome...I had never heard of it before this moment.

Churg Strauss Syndrome is as defined below...

Churg-Strauss Syndrome (CSS) is a systemic vasculitis. This disease was first described in 1951 by Dr. Jacob Churg and Dr. Lotte Strauss as a syndrome consisting of “asthma, eosinophilia [an excessive number of eosinophils in the blood], fever, and accompanying vasculitis of various organ systems”. CSS shares many of the clinical and pathological features of polyarteritis nodosa (“PAN”, another type of vasculitis). Churg and Strauss discovered that the presence of granulomas as well as the abundance of eosinophils distinguished this disease from PAN. Another name for Churg-Strauss Syndrome is Allergic granulomatosis.

And one of the main symptoms of having Churg Strauss Syndrome ( or CSS for short ) is...you guessed it...my friend Asthma.

So what do I have to do in order to continue to live with CSS and my asthma?

I take several different prescribed medications on a daily basis including the following...

  • Advair
  • Albuterol
  • Immuran
  • Coumadin
  • Prednisone

The advair and albuterol are for direct control of my copd.

The coumadin is a blood thinner that was prescribed for me last year.

The immuran and prednisone both help me deal with my CSS, a condition which by the way there is no cure for.

Well, that's it for this hub page and honestly I'm not sure about a companion to this page...I'll have to think this one out.

My name is Lew Newmark, and I live everyday with Churg Strauss Syndrome a disease I'd never heard of until I was diagnosed with it. A disease that at least for the moment has no cure and my asthma is just one of many things that is associated with this disease.


More by this Author


Comments 4 comments

Janie Seaton 4 years ago

At 14 (1973) I was told I had pulmonary eosinophilia... at 21 (1980) I was somewhere between Churg and Strauss. I'm 52 now now I'm finding other people with this disease, not least one of my sisters who went straight into Stage 3 and vasculitis.

Hey Most people think CSS is a Cascading Style Sheet! That's the internet. I am glad though that other people share their stories.

Jx


animekid profile image

animekid 4 years ago from Upstate NY Author

Hi Janie.

I came down with CSS rather suddenly actually. I guess I had been showing other signs that maybe I would come down with the condition if conditions were just right, and in June of 08...they were.

I started my own blog in 09 called Lew Newmark: Mt Domestic Life where I shared everything about my life with CSS. Funny that your the first person to comment on this particular hub.

Funny comment about the Cascading Style Sheets. I'd never thought of that. They tell me that my markers for CSS are gone and that I'm in remission, but I still take 4 of those 5 meds that I have listed above. Dropped the Coumadin in 2010 but I still have the COPD, the neuropathy and I'm trying to get disability.

I still remember those weeks in the hospital, and even worse the recovery after I got home. You're never the same after something like this comes into your life. Sorry that you and your sister have to be a part of this club.

Lew


Ashley Yates 3 years ago

Just been diagnosed with Churg-Strauss after a bad bout of hives that I have been dealing with for over 5 months. A biopsy said it was eosinophilic vasculitis. Plus I have chronic sinusitis that I've had surgery for twice, and I have asthma with an obstructive component. I struggle everyday with my sinusitus and asthma, and now I get the hives daily on my lower legs and feet. Some have started to show up on my hands and arms. Since the eosinophils are attacking my blood vessels, the doctors are worried about my heart now. I guess I am just really glad that I have an answer now. I got the allergies, sinusitis, and asthma out of no where after being completely healthy. Then, I had to have my uterus removed at 24 years old because I had chronic and severe eosinophilc endometritis. I just got a diagnosis after dealing with these debilitating symptoms for years now.


animekid profile image

animekid 3 years ago from Upstate NY Author

Hi Ashley.

While I'm glad that you added a comment here, I'm very sorry that you've been diagnosed with CSS, and all that you've gone through so far.

When I first started going through my eventual CSS diagnosis, I first started having sinusitis problems back in Nov of 07. As far as the asthma, well that actually started out several years before any of the other stuff began. Back in the early 80's I was diagnosed with sarcoid (Sarcadosis) that was the first early asthma diagnosis...after a lung biopsy was performed.

In July of 05 (if I remember correctly a day after my birthday) I was diagnosed with COPD...happy birthday to me.

Then we jump to 07 with polyps in my nasal passages, then the onset of sinusitis, terrible asthma problems and then my eventual hospitalization twice in May of 08...the second time went from Memorial Weekend of May through sometime in June of 08.

The doctors that you mentioned in your comment...are they specialists? Do they know about all things related to CSS and Vasculitis?

Two sources for you to check out online are the Vasculitis Foundation and The Churg Strauss Association.

The VF web address is http://www.vasculitisfoundation.org/

The Churg Strauss Association's address is http://www.cssassociation.org/

I still do my blog, Lew Newmark: My Domestic Life and that address is

http://www.lewnewmark.com

You can also contact me through email if you want to at snewmark@hvc.rr.com

Please stay in touch...

    Sign in or sign up and post using a HubPages Network account.

    0 of 8192 characters used
    Post Comment

    No HTML is allowed in comments, but URLs will be hyperlinked. Comments are not for promoting your articles or other sites.


    Click to Rate This Article
    working