Common infection causing bacteria

As previously mentioned, because of the CFTR defect, mucus builds up and is a great harvesting ground for bacteria. There are many different bacterias that affect CF patients, but today we're going to review some of the most common infection causing bacteria, symptoms, and treatments.

So, here they are, in no particular order:

Pseudomonas Aeruginosa: a gram negative bacteria found in soil, water, and a number of other places. this is one of the most common pseudomonas found in the lungs of CF patients. diagnosis of this bacteria is commonly done by a sputum culture. The patient either coughs up mucus, or is swabbed, the sample is sent to the lab to grow and develop more of the bacteria, and it is then tested. Common symptoms include increased cough, chest pain, fever and difficulty breathing. Antibiotics most commonly prescribed to tackle this bacteria: Ciprofloxicin, meropenem, tobramycin and some penicillins.


Aspergillosis: a commonly known fungus. If an allergy to it is developed it is referred to as Allergic Bronchopulmonary Aspergillosis (ABPA) it affects about 2-11% of the CF population. Symptoms: inflatmmation, decline in pulmonary functions, coughing, and wheezing. The symptoms are the same as other bacterias, however this is a bacteria that you will want to get treatment for ASAP. Common treatment: prescribed steroids such as prednisone

Burkholderia cepacia:  consists of several species of bacteria found in the natural environment. symptoms: decrease in lung functions, decrease in activity level, congestion, coughing up mucus, wheezing. Common treatment: antibiotics such as: meropenem, piperacillin, doxycycline and several others not listed.
* B cepacia has a large genome. it contains twice the amount of genetic material as E. coli

Menthicillin Resistant Staphylococcus Auereus (MRSA): a strain of bacteria that has evolved, through natural selection, that is resistant to a number of antibiotics including penicillins. The symptoms are the same as other bacterias, however this is a bacteria that you will want to get treatment for ASAP. Lung functions decrease, wheezing, increased cough, fever. MRSA is an increasingly common bacteria found in the lungs of CF patients

The chart below includes a few of these bacteria, and some that were not mentioned. (CF Patient Registry, 2011)

These are just a few of the most common bacteria, later on we will review the ones growing in my pitri dished lungs.


Catch ya later,

B.

CFTR most common mutations

F508del
G542X
G551D
N1303K
W1282X
R117H
R553X
1717-1G->A
621+1G->T
2789+5G->A
3849+10kbC->T
R1162X
G85E
3120+1G->A
I507del
1898+1G->A
3659delC
R347P
R560T
R334W
A455E
2184delA
711+1G->T

http://www.cftr2.org/index.php

The Correlation between anxiety/stress and health

The primary focus of managing CF is centered around the respiratory and digestive systems. However, there are many other factors that come into play when trying to maintain health, but also quality of life.

As psychology/neuroscience student (finally almost finished with my second degree!) I understand the importance of mental well being. Often times, I feel as if I go to the clinic and my physical issues are observed, evaluated, and treated, but my metal wellness is neglected. All persons living with a chronic illness suffer from some sort of anxiety/depression related disorders. Whether or not it is to the extent of requiring treatment is a variant that cannot be determined.

What are the statistics?

One study shows:

1 in 3 patients 12 and younger experience higher levels of anxiety, and 11% have elevated symptoms of depression.

1/2 of the mothers of children with CF have elevated levels of anxiety and 24% of moms had elevated symptoms of depression.

*these rates are much higher than found in the general population.

What makes CF patients more susceptible to suffering from anxiety/depression? 

Depression is more common in those living with chronic illnesses. The amount of time spent doing life quality enhancing treatments can make it difficult to maintain an active lifestyle or simply do the things you want to do. There is also a sense of uncertainty regarding the future, which is a normal response to such life circumstances.

What's the big deal of being depressed or anxious? 

Feelings of depression and being overwhelmed with anxiety have the tendency to affect the willingness to adhere to treatments and medication regimes.

Anxiety and depression can also affect sleep. Your body requires 7-8 hours of a sleep a night, but keep in mind that a CF patient may require more to compensate for the increased usage of energy from simply trying to breathe. 

Depression has also been correlated with missing doctor's appointments, thus causing a downward spiral regarding the medical standing.

According to the American Psychological Association chronic stress (when it begins to interfere with your everyday life) can lead to feelings of fatigue, lack of concentration, and increase the time it takes to recover from a sickness.


How can I get help?

It may be difficult to admit that you have a problem...it is especially difficult if you have a parent or spouse that attends clinic with you. Many CF clinics have on site psychiatrists or they can set up a referral. If you find it to difficult to relay your feelings to your doctor, simply contact the social worker at your hospital for more information.

It is extremely pertinent to your health that, if you are prescribed anything for the treatment of anxiety/depression, your doctor needs to be provided with a complete list of all medications and dosages to avoid negative side effects/interference.



For more information on the study referred to, please see the link below:
http://www.cff.org/aboutCFFoundation/Publications/connections/archive/September2010/CF-Research-Shows-Importance-of-Mental-Health.cfm

For more information regarding mental health, please see the link below:
http://www.nimh.nih.gov/index.shtml

Z-z-z

Obstructive sleep apnea is a condition that affects a number of Cystic Fibrosis patients. The flow of air pauses, or is limited during sleep due to obstructive airways. A pause in breathing is called an apnea episode. A decrease in the air flow is called a hypopnea episode.

Quality sleep is highly important and greatly impacts a person's overall health. Disrupted sleep can impair alertness, affect hormones, and much more. 

Another thing that could be affect your sleep is your medicine schedule. Certain medications such as Albuterol, have common symptoms that can affect your body's ability to relax. It can cause restlessness, nervousness, and irritability.

Iron deficiencies can also cause you to lose sleep by making you feel restless.Restlessness can be described as just when you're relaxing your feel a sensation that causes you to have to move.

The link below from mayoclinic.com has a list of possible treatments and drugs to aid in overcoming sleep apnea.



http://www.mayoclinic.com/health/sleep-apnea/DS00148/DSECTION=treatments-and-drugs

Key terms:

This blog is a little jumpy so far, but I'm hoping to better organize it at a later date...in other words, it's going to be jumpy. Today's post is going to be short, as I am quite busy! Below are a few terms that are used amongst CF'ers, and they can shed some light on the  posts that will follow.

• PFTs- Pulmonary Function Test, also known as spirometry, measure several functions of your lungs. This includes: total volume, diffusion capacity, arterial blood gas (ABGs) and depending on your health, other measurements. 
• Tune up- Going in the hospital for a week or two just to get your lungs back to their baseline functions. A tune up usually includes a poorly decorated room, nurses, doctors, and residents that will be sure to ask you every possible question about your life. A couple of weeks of getting pumped with IVs either through a PICC line (see below) or a Port (see below). Nasty hospital food, and a gown that doesn't really accentuate anything!
• PICC line- Peripherally Inserted Central Catheter- a semi- long term IV that is usually inserted in the upper arm, and stops near your arteries. It generally takes 30 minutes to an hour to have the line inserted. Antibiotics are fed through this tube and your arteries pump it throughout your body. A picc line can last anywhere from a couple of weeks to a couple of months. The dressing on it is to be changed once a week, and it needs to be flushed with Heparin (blood thinner) every few hours to keep the line clear of clots.
• Port- a port is an IV line that is accessed only when needed. Its a little more long term, and is less likely to become infected or compromised. It's placed in the chest, usually, and looks like a stack of quarters sitting under your skin.
• Vest- a vest that inflates with air and shakes your lungs. the purpose of this is to loosen up the mucus
• Treatments- includes the aforementioned vest, plus nebulizer treatments such as albuterol, hypertonic saline, pulmozyme and tobi
• Cyster- how a woman with CF refers to a female friend who also has CF
• Fibro- how a man with CF refers to a male friend who also has CF
• Clinic- a whole day dedicated to visiting with doctors, dieticians, pulmonologists, physical therapy, and meeting with a psychiatrist or social worker. Usually lasts the whole day and includes, but not limited to, receiving stickers and lollipops.

Disinfect!

There are many harmful organisms surrounding us. Normal people are not affected, however those with compromised immune systems are at risk. Here a few tips on where to clean, how to clean, and what to avoid if you have an immunosuppressive illness.

Moisture is a breeding ground for germs and mold, so don’t leave anything wet. Dry off sinks, bathtubs, bath toys, counter tops, and any other wet surfaces immediately after using them.Wash towels on a regular basis. Once or twice a month run your dishwasher and washing machine with a vinegar treatment.

Sweep, dust and vacuum often enough to prevent dust from collecting on surfaces.Clean ceiling fans and air vents in your dusting routine because these areas collect dust quickly and are too often overlooked. Vacuum on a daily basis to avoid dust build up in the carpet.

Bathrooms need to be cleaned EVERY single day. Disinfect everything in the bathroom, from the door handle to the sink handles, and everything in between. Flush with the lid DOWN to avoid the back splash of toilet remnants. Make sure every person that comes through there washes their hands thoroughly.

The link below is a great site for toxin free and scent free cleaners.

http://www.seventhgeneration.com/free-and-clear

504 Plan & Accommodations [Elementary School]

A mother with a newly diagnosed son is prepping him for kindergarten later this year. She asked what some of the accommodations are. There are a number of resources available to assist parents with integrating their child into a new environment, such as starting school. Many parents are unaware of the options available. 

A 504 Plan is a plan developed to ensure that a disabled child is identified under the law and is attending an elementary or secondary educational institution receives the appropriate accommodations that assists in their academic success. 

I also highly recommend that you meet with the teachers before the semester starts, inform them of CF and give them your personal cell phone number in case of emergencies.

http://www.cff.org/LivingWithCF/AtSchool/

A few accommodations that can be in place (keep in mind they vary from patient to patient depending on their progression of CF)

       

Children with CF lose five times more salt when they sweat than children without CF. Therefore, XX must drink fluids directly before, during and after exercise (PE, playground, etc). Salt can also be replaced by eating high-salt foods like pretzels or potato chips.

should be allowed to have a sport bottle of fluids on her desk at all times. Plastic water bottles should be thrown away at the end of each day, even if full.

should always have the top shelf or cubby at the end of the row nearest the door.
desk should be on the outside of the class and upfront.

should be moved away from any child who is sitting next to her or at the same table when congested, coughing, runny nose, stomach ache, not feeling well, etc.

Unlimited access to snacks, restroom and water.

may need to attend school with a peripheral interveneous catheter (PICC line) inserted into her arm for antibiotics. It is critical that this line be cared for during the day by school staff to make sure it is not bumped or damaged. Level of appropriate activity should be discussed as well as an emergency plan.
may need to have support when she must stay at home or be hospitalized due to complications from her illness. She may require that only pertinent work (English/reading & math) be assembled by her teachers in the event of absences. Additionally, if she has to miss school for an extended period of time, homebound services (tutor) may be requested.

Rest in nurses office as needed
Notification of viral outbreaks


Adjust or waive attendance guidelines

    Waive tardy regulations/policy due to time consuming morning therapy.
Access to tissues when needed to blow nose due to chronic sinusitis and/or cough.

Antibacterial waterless soap should be placed in all central school areas including the office, computer lab, library, MPR, lunch line, etc.

 
Those with CF must never be in the same room, use the same computer/ lab desk (even at different times), lunchtime serving utensils (salad bar) or any materials whatsoever used by someone else with CF. Especially, not to use the same bathrooms. They also must stay a minimum of 3-feet away from each other.

 
should not be excluded from any physical activity unless notified by parents. Exercise is very beneficial for children with CF.

 
Full participation in extra-curricular activities and field trips.

 
needs as much time as possible to eat meals at school and snacks should always be accessible in the classroom.  

 
should always be able to go to the front of the lunch line when purchasing a school