Filtering by Tag: symptoms

Clearly Invisible : Fighting the Flu

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

We are in prime Flu season and this time of year can be a bit unnerving for people with CF. While there's no guarantee I won't catch the flu, I take some extra precautions and implement some thoughtful habits to help protect me throughout this season. Here's my advice for getting through the season: 

  • Wash your hands and use hand-sanitizer often.
     
  • Keep it clean – use a disinfectant daily to keep your living environment clean. Wipe down door handles, light switches, faucets, remotes, keyboards, fridge handles, etc. Keeping these high traffic areas disinfected daily will help the spread of compromising germs that could be detrimental to a person with CF’s health – or anyone whose immune system is compromised.
     
  • Disposable hand towels – It may seem like a small thing but replacing your cloth hand towel in the bathroom with disposable hand towels can help deter the spread of germs. 
     
  • Vitamin D – Find ways to get some extra Vitamin D which during the winter months quickly depletes because of our increased time indoors and lack of sunlight. Make sure to take all your vitamins and eat vitamin rich foods. It’s important for people with CF to take in extra vitamins as our bodies do not efficiently absorb vital nutrients.
     
  • Make weight – My CF team has a catchy phrase when it comes to CF and extra weight: “more fluff, more puff.” I know during Influenza season it’s important for me to be dedicated to maintaining or even gaining weight so my body can better fight off infection. Studies have linked increased BMI to increased or stabilized lung function in CF. A large portion of the CF population has difficulty maintaining and gaining weight which has significant effects on the body’s ability to fight infection and maintain lung function.
     
  • Sinus rinses – Daily sinuses rinses help clear out the sinuses and help flush away possible infection that was breathed in during the day. If I have been around a large crowd or in a busy public area I will make sure and do a sinus rinse as soon as I am able.
     
  • Get adequate rest and stay hydrated – A person with CF uses a significant amount of energy just to breathe and do basic everyday tasks. Becoming worn down and dehydrated can be detrimental to our health and can quickly spiral into an exacerbation.
     
  • Get vaccinated and share the importance of those around you getting vaccinated.
     
  • Keep the distance - during peak flu season be cautious about being around a lot of people and in busy public places. Take the appropriate precautions if heading into crowded areas and weigh the risks of needing to go out. It’s best to keep your distance from large groups of people and places you know may be filled with deadly Influenza germs. Weigh the risks and benefits of heading out and maybe grab a mask, hand sanitizer, and try not to touch your face.
     
  • Speak up – Don’t be afraid to remind people that covering a cough, exposure to illness, and hand washing can mean life or death to people with compromised immune systems – especially respiratory issues like CF. Staying away from people who are sick is the best way to avoid infection.
     
  • Stay connected – Influenza A can be deadly for people with CF. It’s important that if you feel any symptoms to call your clinic or go in immediately. 


     

Today's entry is written from the perspective of Ashley Ballou-Bonnema.

Please consult your CF care team if you have concerns about Influenza A or if you want to make any changes to your CF regimen. For more information about Influenza and CF read "Influenza: Learn How to Stay Healthy" from the Cystic Fibrosis Foundation.

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Clearly Invisible : A Season of Difficult Decisions

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

It’s that special time of year when we come together to celebrate, sharing laughter, traditions, and memories with our family and friends. Our calendars are filled with holiday celebrations and time with those we love. This time of year holds so much joy and excitement. But for many with chronic illnesses like cystic fibrosis, this time of year can cause a lot of anxiety and disappointment, and it can be filled with heartbreaking decisions.

People with CF are fighting today for the hope of more tomorrows. Sometimes that fight includes making the difficult decision to not attend a holiday celebration due to the risk of compromising their health. You see, this time of year paired with a room bursting with loved ones can be a breeding ground for germs and sickness. Things like the air exchange in a room, how many people are sharing the same air, and what might be thought of as a simple cold or the sniffles can be detrimental to the health of someone with CF. An uncovered cough and the sharing of unwanted germs can lead to days and weeks spent in the hospital, hours of extra treatments, course upon course of potent antibiotics, and the possibility of fewer tomorrows. 

So, how can you help the person you love with CF during this beautiful and memorable season of celebrating? Show your support by:

  1. Letting the person with CF or their parents know if you or anyone attending the celebration have been sick. This includes the common cold or a little cough.
     
  2.  Reminding the person or the parents of the child who may have to make that difficult decision that they are not alone. It’s often easier to make an emotional and difficult decision if we know we have your support and understanding. 
     
  3. Washing your hands more often and covering your cough when your loved one with a compromised immune system (in this case your loved one with CF) is present.

There’s nothing quite like the heartbreak of having to make the decision to miss out on sharing these special days with the ones you love. Our hearts race with anxiety as we weigh the risks of exposure and have to make that difficult decision, mulling over the unfair realities of a life with CF and the perceived disappointment of those we love, if we cannot commit to attending a celebration. Speaking as someone with CF, more than anything we do not want to miss out on such a special time of making new memories or be vacant from the irreplaceable presence of love shared with our friends and family. But, we must be protective of every breath we are given - all in hopes of the chance to spend another holiday sharing in the beauty and love of the season.

 

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

5 Tips to Help Protect those with CF this Cold & Flu Season

It’s that wonderful time of year again - the start of cold and flu season. A cold or flu for most can be a nuisance and an inconvenience that lasts one to two weeks and the worst of it lasts just a few days. But for someone with CF it can mean months of oral and IV antibiotics, a trip to the hospital, the loss of lung function, or even fatality. Here are 5 helpful tips to help those you love with CF stay healthy:

  1. Wash your hands. A lot. The best defense against spreading germs and limiting contamination is by making sure your hands are clean. The cold and flu virus can live on your hands without you being infected but you can be spread through everything you touch. Don’t have a sink or soap handy? A dab of hand sanitizer will help protect you and those you love.
     
  2. Cover that cough and sneeze. Recent studies have shown that a cough or sneeze travels much farther than originally thought. Up to 200 times farther!

    Also, it’s been found that certain coughs and sneezes can stay airborne long enough to enter ventilation systems, spreading them further and potentially harming more people. Try coughing into your elbow or a tissue followed by washing your hands or a quick squirt of hand sanitizer.
     
  3. Get a flu shot. When you get a flu shot you’re not only protecting yourself from severe complications of the flu but you’re also protecting those with CF or any other compromised immune system.
     
  4. If you’re sick, please stay home. Just a quick trip to the grocery store or pharmacy when you’re sick can put those of us with CF unknowingly at risk.
     
  5. Have plans with someone with CF and you’ve been sick all week or have a cold? Let your loved one with CF know you haven’t been feeling well (or if someone in your house hasn’t been well), so they can make the tough decision whether or not to keep plans. It’s not fun having to cancel plans because of such a risk but it’s better to be safe than sorry.
     

Help us all stay healthy this cold and flu season! For more information on the dangers of germs and cystic fibrosis please visit our previous post, "Clearly Invisible : Danger."

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : A Cause for Celebration

Cystic Fibrosis is a complex and sometimes confusing disease. Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.


Celebration

While a life with cystic fibrosis may have its share of days that are difficult and burdensome, there are indeed days that are filled with unprecedented celebration in our CF community. With continued hope there surely will be many more days of celebration to come.

This past week on Thursday, September 29 there was cause for great celebration in the world of CF. Orkambi, a specialty medication that treats the underlying cause of cystic fibrosis for people with two mutations of F508del, was approved by the FDA for children as young as six. This news gives such hope to so many families and people with CF. In July of 2015 Orkambi was only approved for people with cystic fibrosis twelve years of age and older.

Orkambi and Kalydeco
There are now two life changing drugs of its type in the fight against CF: Orkambi and Kalydeco. These medications are the first of their kind approved by the FDA in the CF community. These medications do not treat the symptoms of CF but target the underlying cause of CF down to the genes themselves. These medications aim to improve the functionality of the CFTR proteins. They aim to make the mutated genes work more normally in hopes that the progressive debilitating effects of cystic fibrosis will be slowed or minimized. This is not a cure and there’s no guarantee that all who take it will experience a great margin of positive change. But it is surely life changing and something to greatly celebrate. 

Within the last twenty-five years there have been incredible advances in the treatment of CF. Advances that have allowed many of us to live well beyond that in which our parents were told. Advances that allow every day to be a celebration for those of us living with CF. Advances that give us hope that someday all people with CF regardless of their mutations will be eligible for such life-changing drugs. Advances that will give us all another day to celebrate together.

 

For more information about CF mutations and the cause of CF please read: The Cause of it All

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Simply CF : Signs & Symptoms

Cystic Fibrosis is a complex and sometimes confusing disease.
Each installment of Breathe 3-65 called,"Simply CF" will strive to explain the complexities of CF in a concise and accessible way.

Even though CF is an invisible disease on the outside the symptoms and complications associated with the disease are not. Breathe 3-65 has shared the complications of CF in our previous post Simply CF : It’s Complicated but what are some of the specific signs and symptoms of CF?

Cough – Because CF impacts the lungs and causes extra thick, sticky mucus to build up in the body, the respiratory system’s defense amidst such irritation and complications is persistent coughing. Coughing is the body's way of trying to move the mucus up and out, clearing the airways. With this extra irritation can come wheezing and breathlessness.

Poor Growth – That thick, sticky mucus also affects the pancreas and its ability to effectively work to produce enzymes. Without those key enzymes the body is unable to adequately take in vital nutrients and effectively digest food. This can lead to malnourishment and can stunt development.

Respiratory Complications – That excess of thick, sticky mucus in the lungs is a perfect place for bacteria and infection to thrive, causing frequent lung infections such as pneumonia or bronchitis. It can also cause people to have frequent issues and infections associated with the sinuses.

Salty Skin – Before there was even such a name for it, parents of children with CF would note a salty taste to their children's skin when they would kiss them. CF causes the body to produce an imbalance of chloride in the body making sweat extra salty.

Digestive Complications – Because of complications with the pancreas, problems with digestion are common. This complication then causes difficulties with bowel movements, frequent greasy or bulky stools, or intestinal blockages.

The body is incredibly complex. Systems within our body work both simultaneously together and separately for the same ultimate purpose – to live. Much of what keeps each of us alive takes place beneath the surface of our skin and is invisible to the unknowing eye. CF is an invisible disease and most of its symptoms are equally invisible to the eye. However, the symptoms and signs of CF are anything but invisible within the bodies of those affected. 

 

 

Only a doctor or trained medical professional can diagnose cystic fibrosis. For further questions or to discuss symptoms in detail please contact your doctor.

Source: CFF.org

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.