Susan's Transplant Video is on You Tube

Susan Burroughs, the Founder of Cystic Fibrosis-Reaching Out Foundation has now put her transplant video on You Tube. To see the video please go to and search "Susan Burroughs".

Tuesday, September 30, 2008

Help With Utilities

The single mother of a teen-aged CF patient was recently laid off of her job. She has found new employment but had not yet received her first paycheck. Their power had been disconnected, making it impossible for the patient to do her nebulizer and vest treatments. Reaching Out paid the power bill for the family.

Young Patient Needing Help

A 16 year old CF patient is not able to live with her parents due to their cigarette smoking in the house. This makes it very difficult for her to breathe in this unhealthy environment. She is trying to take care of her self as well as possible, but has problems being able to pay for her medications. Reaching Out has helped with the payment of some of her medications.

Friday, September 26, 2008

Scientists use pigs to try to beat cystic fibrosis

Scientists use pigs to try to beat cystic fibrosis

By Will Dunham Thu Sep 25, 2:45 PM ET

WASHINGTON (Reuters) - U.S. scientists have created pigs that appear to develop cystic fibrosis just as people do, a step they hope will accelerate efforts to tackle the disease.

Writing in the journal Science on Thursday, scientists at the University of Iowa and the University of Missouri said they created genetically engineered piglets with the same mutation that causes cystic fibrosis in people.

Studying how the disease unfolds in these pigs may provide insights into cystic fibrosis that thus far have eluded scientists and could point toward new treatments or maybe even a cure, said Dr. Michael Welsh of the University of Iowa.

People get CF when they inherit two mutated copies of a gene called CFTR, which was pinpointed as the cause in 1989. The disease causes mucus to accumulate and clog some of the organs in the body, especially the lungs and pancreas.

The Cystic Fibrosis Foundation, which helped fund the study, said about 70,000 people worldwide, including 30,000 people in the United States, have CF. People with the disease can expect to live to about age 37.
Scientists create animal "models" of a disease in order to perform experiments that would not be possible with people. Mice with the genetic abnormality that causes cystic fibrosis have been developed, but the disease presents itself very differently in these rodents than in people.
"Unfortunately, the mice leave something to be desired," Welsh, who helped lead the study, said in a telephone interview.

"They don't get the pancreatic disease like people with CF get. They don't get the lung disease like people with CF get. They don't get the intestinal disease like people with CF get. There's been many questions that can't be answered," he added.

"The onset of these problems is difficult to track down in humans because sometimes they happen before birth or sometimes they happen silently," added Christopher Penland of the foundation.
This is the latest example of pigs used for human medical needs. For example, cardiac patients can get pig heart valves.
The scientists developed pigs with cystic fibrosis because their lungs have many characteristics of human lungs.
"Right now, if you want to do experiments to find treatments or therapies for the lung disease that is fatal for people with CF, you would have to experiment on kids that have CF," Randy Prather of the University of Missouri added.

The disease in pigs closely mimicked the initial stages of the disease seen in people. The scientists are waiting for them to develop lung disease typical of CF "so we can start experimenting in ways that have never been possible," Prather said in a statement.

Tuesday, September 23, 2008

Promising New Approach To Treating Cystic Fibrosis Lung Infection

Researchers at the University of Calgary have found a new method of fighting severe lung infections in people with cystic fibrosis (CF). These findings are published in Proceedings of the National Academy of Science USA, this week. Communities of bacteria grow in the lungs of people with CF. Pseudomonas aeruginosa is a common bacterium found in these communities and is often associated with severe lung infections. Pseudomonas represents a constant and ever present threat to the health of people with CF. Dr. Michael Surette, Professor of Medicine at the University of Calgary, and his team, working with Dr. Harvey Rabin and the Calgary Adult CF Clinic have found that a group of previously overlooked and often undetected bacteria in these communities, the Streptococcus milleri group (SMG), compounds the danger of Pseudomonas aeruginosa. Currently, doctors have treated Pseudomonas with antibiotics, however, the Pseudomonas family of bacteria is increasingly becoming resistant to treatment. Dr. Surette's research shows clinical benefit simply by treating SMG, and thereby disrupting the bacterial community. Doctors at the Calgary Adult CF Clinic (Foothills Hospital) have already tested this new approach successfully, with patients admitted to hospital with severe lung infections. People treated with SMG-targeted therapies quickly returned to a stable state. "This is important new information," said Dr. Michael Surette. "In our small patient group, the laboratory findings have been used to guide treatment, with positive results." The research project, funded by the Canadian Cystic Fibrosis Foundation, has led to a real alternative to combating severe lung infections in persons with CF. Early study results show that it may also be a treatment option for individuals with chronic lung infections unrelated to CF. "These findings underline the importance of supporting CF research," said Cathleen Morrison, Chief Executive Officer of the Canadian Cystic Fibrosis Foundation. "In this case, laboratory research has been translated rapidly into actual treatment, helping people with cystic fibrosis fight back against aggressive infections." ----------------------------Article adapted by Medical News Today from original press release.

Wednesday, September 10, 2008

Special Milestones

Eighth Anniversary of Susan Burroughs’ new lungs,
her 48th birthday
and her 20th wedding anniversary!!
Donald Cross’ 36th birthday
Honoring Susan for her courage and ongoing gift to others

Traveling With Cystic Fibrosis

In-Depth Education
Thomas J. Newton, RCP, RRT For someone with a chronic lung disease like cystic fibrosis (CF), traveling can be fun and exciting. Unfortunately, it might also include the wrong kind of excitement. Here are some examples of excitement that you could do without:
Running out of your medication
Not having a place to plug in your compressor
Getting short of breath at higher elevations or in an airplane
Not having any oxygen on the plane because you forgot to call the airlines ahead of time to arrange for it
Not knowing where to go if you have an emergency

Preparation Is the KeyWhether you travel by car, boat, train, or plane, being prepared is the key. Preparation is important not only for long trips lasting several days or weeks but also for shorter excursions lasting only one day.Before embarking on a trip, be sure to talk with your healthcare provider and cystic fibrosis healthcare team. They can help you plan your medical care during your trip.If you are planning to travel and are unsure of your lung function, check with your healthcare provider. This is especially important if you plan to fly or travel to higher elevations, such as the mountains. People with altered or impaired lung function may have more symptoms at higher elevations, especially if they already use oxygen or have poor exercise tolerance.Normal Lung Function and Normal Exercise ToleranceIf you have normal lung function and normal exercise tolerance:
Take more than enough medications to get you through your trip.
Ask your doctor if you can substitute metered-dose inhalers (MDIs) with spacers for some of the inhaled medications that you normally take using a nebulizer. Metered-dose inhalers may be more practical, since you may not always have access to an electrical outlet for your nebulizer while you are traveling. Common medicines that come in inhaler form are albuterol (Proventil or Ventolin), cromolyn (Intal), ipratropium (Atrovent), and inhaled steroids.
Ask your healthcare provider if you can be off Pulmozyme (rhDNase) and/or TOBI (tobramycin solution for inhalation) for the duration of your trip, or at least for parts of it.
Ask your healthcare provider about trying a PEP (positive expiratory pressure) mask or a Flutter or Acapella mucus clearance device to clear your airways. These devices are easy to learn and are very portable. They can also be used in a car, plane, train, or boat without the assistance of another person.
Make sure that battery-powered machines are right for you. Battery-powered machines work well but are a bit slower and are more expensive than standard electrical devices. Also, not all insurance policies pay for them. Important: If you are going to purchase a battery-powered model, check how long the battery lasts on a full charge. This will give you an idea of how many treatments you can get out of a charged battery. This is important if you are taking multiple medications, such as Pulmozyme and TOBI.
Impaired Lung Function and/or Poor Exercise ToleranceIf you have impaired (moderate to severe) lung function and/or poor exercise tolerance:
Follow the instructions noted above.
Let your healthcare provider know about your trip at least one month in advance.
Find out if you will need oxygen while traveling by airplane or when visiting higher elevations. Your healthcare provider may want to test your oxygen needs before you take the trip.
Check with your oxygen supplier to help coordinate oxygen delivery in connecting cities and at your final destination.
Bring extra medication with you. Trips can be delayed because of bad weather or missed connecting flights.
Your Medical History Checklist Keep a copy of your medical history with you in case of any unplanned trips to an emergency room or hospital. Your medical history should include:
Your diagnosis -- cystic fibrosis, as well as any other medical problems you may have, such as diabetes or asthma
All current medications, including TOBI (even if you are off cycle) and oxygen (liters/minute)
Last chest x-ray report
Information about your central intravenous line, portacath, or Broviac (if you have one)
Information about your G-tube or button (if you have one)
Last sputum culture
Last pulmonary function test
Information indicating whether you have ever coughed up blood and the last time you did
Information indicating whether you have ever had a pneumothorax
The names and phone numbers of all your healthcare providers
Ask your CF team to provide you with the addresses and telephone numbers of CF centers along the way or close to where you will be staying. This information may come in handy in the event you need to consult a CF specialist while you are on your trip.Bon Voyage! Letting your CF team know about your trip well in advance can make traveling easier. That will give them enough time to help you prepare for your trip. And it will give you more time to have fun while you are away.This article was written by Thomas J. Newton, RCP, RRT, a clinical specialist in pediatric respiratory care and a CF team member at a hospital for children. It was reviewed in 2007 by James W. Wallace, MD.ReferencesBreathin’ Easy: A Guide for Travelers With Pulmonary Disabilities. Available at: Accessed January 29, 2004. California Thoracic Society and the American Lung Association of California. Safe Flying For People With Lung Disease. 2002. Available at: Accessed January 29, 2004.
Top of Page

Drew’s Views

My name is Drew and I’m 22 years old with cystic fibrosis. Although I have CF, CF doesn’t have me. If for some reason my picture is not self-explanatory, I am a girl with a boy’s name.
I was diagnosed with cystic fibrosis when I was two years old after my cousin, Bess, was born and diagnosed. My parents had taken me to doctors to try to figure out what was wrong, but the doctors said I would “grow out of it.” I’m still waiting…
Aside from having CF, I lead a relatively normal life. Like most people, I put hot sauce on everything, refuse to lick envelopes and set my alarm to wake up on a :22 or :44. This constitutes as normal, right?!
Growing up, I was very involved in soccer, swimming and dance. I was a very active child and this has greatly contributed to my good health. My parents never acted as though I was any different than my brother and sister (who don’t have CF). I have never felt like CF has made me less capable than anyone else.
I attended Georgia State University in Atlanta on an academic scholarship. I had two majors – Speech/Communications and Journalism – and graduated with a 4.0 GPA. If anybody was wondering, yes, I am patting myself on the back right now. J I have been working in Marketing for over two years.
In my (limited) free time, I like to go to the gym, go to Braves games and go out with friends. I also enjoy writing, reading, doing puzzles and participating in other nerd-like activities.
Back to life with CF…From 1996 to 2002, I attended a week-long summer camp for people with cystic fibrosis. That’s where I met some of the best people I have ever known. The CF community shares an incredible bond that cannot be understood by many. Although life with CF has had its ups and downs, I am happy to be part of such an amazing network of people.
By writing for the Reaching Out Foundation, I hope that I can inspire someone, somewhere. While I can ramble on and on about topics that interest me, I’m extremely open to questions or suggestions. If you have any ideas, email me at

Patricia "Pat" Tatro


Dear CF Patients and Families,

It has been a great privilege and honor to serve as your social worker in the CF clinic for the past 13 years. In the reorganization that is occurring at the Emory CF Center my position will no longer be funded. It is with sadness that I must say good-bye to you.
My wish for each and every one of you is:
1. Take care of yourself
2. Do your treatments as your doctors prescribe
3. Come to clinic.
I want you to be well so you can realize all of your hopes and dreams.
Love, Pat

In Loving Memory of Heather Skillings Higginbotham

A generous contribution has been made by Heather’s family;
Her parents Babs and Shaw and Husband Jerry, to the
Cystic Fibrosis – Reaching Out Foundation.

The purpose of the donation is to assist other CF patients and families through Reaching Out’s programs.

Our Sincere Thank You,
Reaching Out

Heather with her “baby”, Toby

Changes Ordered for Inhalers


Albuterol metered dose inhalers (MDIs), also called “short-acting” or “rescue” inhalers, are made by several manufacturers. They have traditionally used chlorofluorocarbons (CFCs) to “propel” the albuterol into the lungs. But now, a new safe and effective alternative propellant, hydroflouroalkane (HFA), has been created to replace CFCs, and will become the required standard for all inhalers starting in 2009. (See official FDA announcement to learn more.)You don’t have to wait until 2009 to make the switch, you can do it today. Many HFA albuterol inhalers are already available. Talk to your doctor today about writing a new prescription for an HFA inhaler and make the switch early so you'll make the 2009 deadline. Between now and December 31, 2008, CFC inhaler production will begin to be phased-out. But as the supply of CFC inhalers decreases, supplies of HFA inhalers will increase to ensure that the total supply meets the total patient demand, up to and beyond the 2009 required transition date.HFA albuterol and levalbuterol medications currently available include:
Proventil-HFA (NDC 00085-1132-01) from Schering-Plough, Ventolin-HFA (NDC# 0173-0682-00) from GlaxoSmithKline lbuterol-HFA (NDC 59310-579-20) from IVAX ,Xopenex-HFA (NDC 63402-510-01) from Sepracor


Susan Burroughs during Photopheris treatment in
Birmingham August 2008

Photopheris is a therapeutic technique in which a patient’s lymphocytes (white blood cells) are
collected by a blood separation device. The lymphocytes are then exposed to ultraviolet light in combination with the drug 8-Methozypsorlen. This drug is a photosensitizing agent which becomes active when it is exposed to ultraviolet light. After this exposure, the lymphocytes
are returned to the patient. These treated cells stimulate the immune system to attack
the cells causing the problem. The process is similar to an auto vaccination.

By: Susan Burrough

Monday, September 8, 2008

Post Lung Transplant

Diagnosed with Chronic Rejection?
Wait don’t give up yet…. By Susan Burroughs

Few things strike more fear in a transplant patient than hearing the words:
chronic rejection. I received my TWO NEW LUNGS on May 23, 2000. This winter, I was faced with that unfortunate diagnosis 8 years post transplant. I was terrified—distraught, but I knew there was hope.
Susan in Birmingham undergoing
treatment August 2008

My transplant center, The University of Alabama at Birmingham, is one of the only centers in the southeast that does a procedure called “photopheresis” for lung transplant patients. Many transplant centers do not consider this treatment as an option. UAB, however, uses it on all of their patients in rejection, usually at the first sign of trouble.
Before I could start photopheresis, I had to have a Vortex port inserted into my chest that would stay for the duration of the photopheresis treatments. I then got a seven day dose of thymoglobulin to suppress my immune system dramatically. The photopheresis itself did not start for another five weeks. I got my first treatment on August 5, 2008. During photo, blood is removed from your port in six cycles. During each cycle, the blood is run through a centrifuge where all the white blood cells (lymphocytes) are separated off. After 3 – 5 hours, the collected white blood cells are shot up with UVADEX and then hit with UV radiation during “photo activation”. When this step is complete, your radiated cells are transfused back into your body and you are ready to go.
The point of all of this is to ‘reprogram’ your white blood cells in hopes that they will stop attacking your rejecting organ. How does it actually work? No one really knows for sure. They just know after twenty years plus of treating heart transplant patients in rejection, photopheresis has been quite successful. Over the last ten years, it has been quite successful in lung transplant patients as well.
Photopheresis isn’t guaranteed to work, but what in life is? However, this treatment has proved over and over again to stabilize the declining pulmonary functions of lung transplant patients and in most cases, the pulmonary functions have improved.
The side effects of the treatment are minimal. The medicine used in photopheresis will make you more sensitive to sunlight for about 24 hours after treatment. For this reason, I have to take some simple but very important precautions to protect my eyes and skin. i.e. wear sunglasses, sunscreen and long sleeves. For 24 hours.
The treatment for lung transplant patients is approximately 15 months and I will receive 30 treatments over the 15 month time span. I will receive 2 treatments with each visit. For the first 6 visits, I will go in 3 week intervals. For the next 3 visits, 4 week intervals; the next 3 visits, 5 week intervals; next 3 visits, 6 week intervals. Right now, I expect to be finished with the treatment by September 2009.
After my transplant, my pulmonary functions were in the high to low 90’s. They dropped to the 70’s. This alerted my transplant team to be aggressive and start the treatment right away. Now, before transplant, I lived with pulmonary functions in the mid- 20’s to mid-10’s. So even if I stabilize in the 70%. I will never regret getting a double lung transplant. I continue to remain active during the treatments by playing tennis. I thank God and my donor every day for my gift of life.

If you would like to track my progress over the next several months, please visit

Breakthrough In Fight Against Deadly Superbug

Early Detection Method Greatly Increases Chances Of Survival
ScienceDaily — A research team led by University of Sunderland scientists has made a major breakthrough in the fight against a deadly hospital infection which kills tens of thousands of people every year, and it will be available within the next year.

Experts have discovered a technique for the early detection of the superbug pseudomonas aeruginosa which particularly infects patients with cystic fibrosis. 70,000 people worldwide are affected by cystic fibrosis and on average around 50 percent of those will be infected with the superbug – 50 percent of those will die.
Although the research concentrated on the superbug’s relation to cystic fibrosis, pseudomonas aeruginosa also attacks patients with localized and systemic immune defects, such as those suffering with burns, patients with AIDS and cancer.
According to the Centre for Disease Control and Prevention in the USA, Pseudomonas aeruginosa accounts for 10 per cent of all hospital infections.
While the superbug is very difficult to cure as it is highly resistant to antibiotics, early detection makes a huge difference to a patient’s chances of survival. Now for the first time, the University of Sunderland–led team has discovered a technique that can identify the superbug within 24-48 hours of infection, greatly increasing a patient’s chances of survival.
The team is led by Professor Paul Groundwater and Dr Roz Anderson at the University of Sunderland, in collaboration with colleagues Professor John Perry, Freeman Hospital, Newcastle, Professor Arthur James, Northumbria University and Dr Sylvain Orenga, bioMérieux, France
Prof Groundwater says: “This superbug has a massive impact on people who are immunocompromised, for example patients with severe burns, cancer and AIDS.
“It is calculated that 28 per cent of people who have undergone transplant surgery are infected by pseudomonas aeruginosa. We hope our research will make a big difference in the survival rate of many thousands of vulnerable people throughout the world.
“The bacteria infect the fluid on the lungs of cystic fibrosis sufferers. It also infects patients in intensive care units. It is really difficult to treat, and hospital staff need to know very quickly if someone has been infected by it.
“In our new diagnostic method a non-coloured compound reacts with an enzyme present in pseudomonas aeruginosa and produces a very distinctive purple colour which indicates the presence of the bacteria. This technique works on 99 per cent of the strains of this superbug.”
The research has been sponsored by the multinational biotechnology company bioMérieux. The company, based in France, designs, develops, and produces a wide range of diagnosis systems for medicine and industry.
“bioMérieux is very proud to have participated in and supported this research that will help in the fight against healthcare associated infections - a strategic focus for our company,” says Dr. Peter Kaspar, bioMérieux corporate vice-president of research and development. “This discovery will enable bioMérieux to bring additional high-medical value tests to clinicians and positively impact patients’ treatment and their follow-up care.”
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 70,000 children and adults worldwide. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Pseudomonas aeruginosa is a major cause of infection among patients with immune defects. It is tolerant to many detergents, disinfectants and antimicrobial compounds and is difficult to control in hospitals and institutional environments. It causes urinary tract infections, respiratory system infections, dermatitis, soft tissue infections, bacteremia, bone and joint infections, gastrointestinal infections and a variety of systemic infections, particularly in patients with severe burns and in cancer and AIDS patients who are immunosuppressed. Pseudomonas aeruginosa infection is a serious problem in patients hospitalized with cancer, cystic fibrosis, and burns. The case fatality rate in these patients is near 50 percent.
According to the Centre for Disease Control and Prevention in the USA, pseudomonas aeruginosa currently accounts for 10.1 per cent of all hospital infections

Nutrition Information

Milk, Calcium and CF:
True or False?
by Liz Revilla, MS, RD, CSP
(Adapted with permission from Terri Schindler, MS, RD)

Drinking milk increases mucus production and also makes mucus thicker.

False. Milk is an emulsion (drops of one liquid are dispersed in another liquid), which can create a feeling in the mouth which may be mistaken for mucus. Milk does not increase mucus production or make it thicker. It is safe for individuals with CF to consume.

The calcium in milk (or in foods) can increase your risk of developing kidney stones.

False. The calcium in milk binds with a salt, called oxalate, in the intestine. This binding actually reduces the risk of kidney stones.

Milk is a good source of vitamin D.

True. Milk is an excellent source of vitamin D, as well as calcium and protein. Not all dairy products contain vitamin D, however. For example, ice cream, cheese, and some brands of yogurt are not fortified with vitamin D.
Because milk is a beverage, it does not require enzymes.

False. Milk contains protein, fat and complex carbohydrates. It is a good idea to take a snack dose of enzymes when you drink milk.

You cannot tell if you are getting enough calcium in your diet by checking the level of calcium in your blood.

True. Your body will take calcium from your bone, if you do not getting enough calcium in your diet. Calcium controls muscle contractions, including the heart muscle, so your body will take calcium from your bone to keep your blood calcium level normal. Your dietitian can help you figure out if you are getting enough calcium from your diet.

Review article: Milk Consumption Does Not Lead to Mucus Production or Occurrence of Asthma. Wunthrich et al. Journal of the American College of Nutrition, Vol. 24, No. 6, 547S-555S (2005).

Curhan G, Willett WC, Rimm E, Stampher MJ. A prospective study of dietary calcium and other nutrients and the risk of symptomatic kidney stones. N Engl J Med 1993;328:833-8

Help With Mortgage

The mother of a young CF patient was recently divorced and is not receiving financial assistance from the father. Mother had to miss time from work to care for her child and had fallen behind on mortgage payments. Reaching Out assisted this family by making a mortgage payment and helped with their power bill.

Assistance With Medication

A large number of CF patients are on hypertonic saline which is not covered under Medicaid, Medicare or health insurance . This medication has been shown to help with lung congestion. Reaching Out has assisted with payment for those unable to pay for it.