Nocardia - A Tough Battle - A New Motto

Many of you are aware I have not been online as much lately and it is due to some escalating personal, financial and health issues.  My new motto is .. “Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.” ~ Anonymous

On an annual scale of stress and life events .. mine is off the chart .. however, it would do no good for me or to others to give in and completely fall apart.  I have days where I cry, but more days that I am happy.  On both types of days, I remember to count my blessings .. and they are many!  

I thank God for waking up each day and having another opportunity to better myself and help others, for Kalista's continuing chemotherapy and remission, for the many friends I have on MedHelp who have been so supportive, kind and encouraging, for a few special friends I talk with daily that keep my spirits up when the going gets tough, for the stranger .. a lady .. who stopped me in the elevator and said, "I don't know why you are crying but it is clear to see you are upset .. " and gave me a huge hug, to the love and close relationship with my daughter, that I still have my mother in my life, that life and people are good if you open your eyes and heart to it.

Throughout the challenges of the last year ... Meeting 3 new siblings and the emotions that have come from that are joyous and disheartening as I have two brothers who have accepted me and a sister who will not, losing a job with the American Red Cross due to national downsizing of over 1,200 workers, the anniversary of dad's death, starting a new job with Marsh, repeated seromas from my tummy surgery, my daughter's divorce, Kalista's leukemia diagnosis, losing my job as it was outsourced to India, Michael's death and sorting his belongings, Mom's TIA and failing health, my sister's macular degeneration, which is leading to blindness, unemployment, financial difficulties, refrigerator quitting and spoiling all the food (now have a refrigerator and food), air conditioner leaking and ruined kitchen floor (now fixed), abdominal abscesses and misdiagnosis x 4 .. to a final diagnosis of nocardia -- to a year's worth of antibiotic treatment and continuing issues of cellulitis and abscesses, to severe depression and hospitalization for a week, to bankruptcy, to the shingles disintegrating on the house, the two garage and the barn .. I am doing my level best to stay positive.  

I am hanging in there but unable to be here as much as I'd like.  Have a culture tube at home waiting for one more area to break open.  The Infectious Disease doctors at the University of Iowa are seeing me again on Monday .. so hopefully I'll be getting a few more answers and a better understanding of this then.

Thankfully, thus far, mine appears to be a primary skin infection, which is even rarer .. but the better option.  The picture attached is of the area of three lesions, all of which have been drained before.  The top one is flairing with cellulitis and there is an area in the middle with fluid.  The dark lines directly below it, are healed scars from the previoius Incision & Drainage of those areas.  There is another healed area on my left hip that continues to flare off and on.

I've gone from one pill a day for mild hypertension ... to taking 15-18 pills a day (depending on pain) ... and I am looking forward to a time when it will start decreasing.

My daughter and grandchildren are coming tomorrow and spending the weekend so between being tired due to the drain on my health and the medicines, and their visit, I will probably not be online until Monday.  It is my fervent goal to then start setting some regular time to be online again and try to start reorganizing my life to do what I want to do and need to do in conjunction with my illnesses.

Thanks again for always being there and for taking care of each other.  I love you ....


For those of you who want to know what this disease is .. as most doctors are not aware of it ..
THIS INFORMATION ON NOCARDIA INFECTION IS FROM THE NATIONAL INSTITUTES OF HEALTH ...
Medical Encyclopedia: Nocardia infection

URL of this page: http://www.nlm.nih.gov/medlineplus/ency/article/000679.htm

Alternative names  
Nocardiosis

Definition  

Nocardia infection is a rare disorder affecting the lungs, brain, or skin. It occurs mainly in people with weakened immune systems.

Causes, incidence, and risk factors  

Nocardia infection is a bacterial infection that usually starts in the lungs. It then tends to spread to other organ systems -- most often the brain and the skin. It may also involve the kidneys, the joints, the heart, the eyes, and the bones.

Nocardia bacteria are found in soil around the world. You can get the disease by inhaling contaminated dust or if soil containing nocardia bacteria gets into an open wound.

While individuals with normal immune systems can get this infection, the main risk factors for getting nocardiosis are a weakened immune system or chronic lung disease. People on long-term steroid therapy, those with cancer, organ or bone marrow transplants, or HIV/AIDS are at risk.

Symptoms  

Symptoms vary and depend on the organs involved.

    * Lungs (pulmonary nocardiosis):
          o Chest pain when breathing (may occur suddenly or slowly)
          o Coughing up blood
          o Fevers
          o Night sweats
          o Weight loss
    * Brain (cerebral nocardiosis):
          o Fever
          o Headache
          o Loss of neurological function (depending on the part of the brain affected)
    * Skin:
          o May become chronically infected (mycetoma) and develop draining tracts
          o Ulcers or nodules with infection sometimes spreading along lymph nodes

Some people with nocardia infection have no symptoms.

Signs and tests  

Nocardia infection should be suspected in people with lung, brain, or skin symptoms if they also have a condition or conditions that weaken the immune system.

Nocardiosis is diagnosed using tests that identify the bacteria. Depending on the part of the body infected, testing may involve taking a tissue sample by:

    * Brain biopsy
    * Bronchoscopy
    * Lung biopsy
    * Skin biopsy
    * Sputum culture

Treatment  

Long-term antibiotic therapy (usually with sulfonamides) for 6 months to a year (or longer depending on the individual and the parts of the body involved) is needed to treat nocardia. Frequently, chronic suppressive therapy (long-term, low-dose antibiotic therapy) is needed.

In addition, patients who develop abscesses caused by this infection may need surgery to completely drain the abscesses.

Expectations (prognosis)  

How well a person does depends on the parts if the body involved. There is a significant death rate if more than one site is involved (disseminated nocardiosis). In addition, an individual's immune system plays a large role in how well they will do.

Complications  

Complications of nocardial infections vary depending on what parts of the body are involved. Certain lung infections may lead to scarring and chronic shortness of breath. Skin infections may lead to scarring or disfigurement. Brain abscesses may lead to loss of neurological function.

Calling your health care provider  

Notify your medical provider if you have any of the symptoms described above. These are non-specific symptoms that can have many causes other than nocardial infections. If you have lung, skin, or brain symptoms -- particularly if you have a weakened immune system -- tell your doctor. You will need to be evaluated for several potential infections, including nocardia.

References  

Sorrell TC, Mitchell DH, Iredell JR. Nocardia species. In: Mandell GL, Bennett JE, Dolin R, eds. Principles and Practice of Infectious Diseases. 6th ed. Philadelphia, Pa: Churchill Livingstone Elsevier; 2005: chap 252.

Southwick FS. Nocardiosis. In: Goldman L, Ausiello D, eds. Cecil Medicine. 23rd ed. Philadelphia, Pa: Saunders Elsevier; 2007: chap 351.

Update Date: 9/28/2008

Updated by: Linda Vorvick, MD, Seattle Site Coordinator, Lecturer, Pathophysiology, MEDEX Northwest Division of Physician Assistant Studies, University of Washington School of Medicine; Jatin M. Vyas, MD, PhD, Instructor in Medicine, Harvard Medical School, Assistant in Medicine, Division of Infectious Disease, Massachusetts General Hospital. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.

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