Crohn’s Disease, Sarcoidosis, Hip Surgery and whatever else I have!

Sarcoidosis

What? Who?

Well more on what the latest addition to my health situation is, what it isn’t is the lovely C word. And by C word I don’t mean the word that sounds like the 4th down football kicking terminology, no my friends I mean it’s NOT CANCER! I think that deserves a woo and a hoo. Yes, I am relieved however I do have to point out this call by Dr. Guber is by no means official. The sample they got still needs testing, but to Dr. Guber’s trained eye and his surgical staff they all agree that it doesn’t “appear” to be cancerous. Hey, screw it - with what I’ve been through, I’ll take it!

Now back to what it is,…or what it very likely is and it’s no picnic either. Odd’s are good ( tho rare in people over 40 ) that I have what most medical professionals ( and not penthouse forum ) call 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. My issue started shortly after my hip replacement surgery where at first it was thought I may have a blood clot, but CAT scans showed gi-huge-ic lymph nodes, raising the chance of lymphoma or, as called by Dr. Guber early on, the very probable Sarcoidosis.

The cause of sarcoidosis is unknown. The disease can appear suddenly and disappear. Or it can develop gradually and go on to produce symptoms that come and go, sometimes for a lifetime.

As sarcoidosis progresses, microscopic lumps of a specific form of inflammation, called granulomas, appear in the affected tissues. In the majority of cases, these granulomas clear up, either with or without treatment. In the few cases where the granulomas do not heal and disappear, the tissues tend to remain inflamed and become scarred (fibrotic).

Sarcoidosis was first identified over 100 years ago by two dermatologists working independently, Dr. Jonathan Hutchinson in England and Dr. Caesar Boeck in Norway. Sarcoidosis was originally called Hutchinson’s disease or Boeck’s disease.

Shortness of breath (dyspnea) and a cough that won’t go away can be among the first symptoms of sarcoidosis. But sarcoidosis can also show up suddenly with the appearance of skin rashes. Red bumps (erythema nodosum) on the face, arms, or shins and inflammation of the eyes are also common symptoms.

It is not unusual, however, for sarcoidosis symptoms to be more general. Weight loss, fatigue, night sweats, fever, or just an overall feeling of ill health can also be clues to the disease.

Anyone can get sarcoidosis. It occurs in all races and in both sexes. Nevertheless, the risk is greater if you are a young black adult, especially a black woman, or of Scandinavian, German, Irish, or Puerto Rican origin. No one knows why. Even more shocking, I never realized I was a young black, Scandinavian, German, Irish, Puerto Rican woman. Now we know. Seriously - so far all of the issues I have shouldn’t be affecting me BUT THEY HAVE. And this does not surprise my doctors one bit. Strange yet - but look who we are dealing with.

The good news hiding in there is the hope that of this passes or ends, so will ( HOPEFULLY ) my general feeling of constant shittyness! How cool would THAT BE!?!?!

Much about sarcoidosis remains unknown. Nevertheless, if you have the disease, you can be reassured about several things. Sarcoidosis is usually not crippling. It often goes away by itself, with most cases healing in 24 to 36 months. Even when sarcoidosis lasts longer, most patients can go about their lives as usual. Sarcoidosis is not a cancer. It is not contagious, and your friends and family will not catch it from you. Although it can occur in families, there is no evidence that sarcoidosis is passed from parents to children.

In general, sarcoidosis appears briefly and heals naturally in 60%-70% of the cases, often without the patient knowing or doing anything about it. From 20%-30% of sarcoidosis patients are left with some permanent lung damage. In 10%-15% of the patients, sarcoidosis can become chronic.

When either the granulomas or fibrosis seriously affect the function of a vital organ—the lungs, heart, nervous system, liver, or kidneys, for example—sarcoidosis can be fatal. This occurs 5%-10% of the time. Some people are more at risk than others; no one knows why.

No one can predict how sarcoidosis will progress in an individual patient. The patient’s symptoms, race, and the doctor’s findings can give some clues. For example, a sudden onset of general symptoms such as weight loss of feeling poorly are usually taken to mean that the course of sarcoidosis will be relatively short and mild. Dyspnea and possibly skin sarcoidosis often indicate that the sarcoidosis will be more chronic and severe.

I have taken most of this from the web site: Medicine Net.com - The specific article is here. It doesn’t paint a horrible picture but I still have alot to deal and cope with here. At least there is a semi peace of mine that it isn’t Cancer.

Until the next curve-ball health crisis, or basic crohn’s situation that goes horribly wrong, this is Max signing off. Today’s biopsy left me with a big hole in my throat and it feels like hell. Rest, test again. OY! Hope this explains the lastest twist in my warped medical saga. Sheeeesh!

-max