Filtering by Tag: diagnosis

Real 65 : Dreaming Pink and Blue

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis. 
It is a place for all those impacted to share their stories

At the root of every life are dreams unique to the person who holds them. Much of our lives may follow a similar path but the details that compose them are what make the journey truly unique to its dreamer. But sometimes those dreams are littered with obstacles beyond our control. It's a true privilege to share Trini's story with you today. Most of all, however, it's a privilege to share her dreams with you and how she has not allowed her a life, which could possibly be seen by others as one filled with undeniable obstacles - one being cystic fibrosis. 

"I feel like every decision I have made in my life has prepared me for my diagnosis of Cystic Fibrosis. Obviously I didn’t know that I had this disease for the first 29 years of my life, but I feel like I was prompted to make the decisions that I have to keep myself healthy.

At a young age I was introduced to the world of sickness, but it wasn’t me that was sick. My older sister had “asthma” and was in and out of the hospital with breathing problems. She was on multiple medications and she also was on breathing treatments. I was familiar with the hospital, breathing treatments and antibiotics. When she was 29 years old she was diagnosed with Cystic Fibrosis.

I was a really lucky kid and I hardly got sick. When I was 13 I started getting sinus infections frequently and ended up getting sinus surgery due to the buildup of mucus in my sinus cavities. When I was 14 I had my right fallopian tube removed due to a paratubal cyst; who knows if that was related to my unknown cystic fibrosis. I started swim team in 8th grade and continued to swim all through high school, as I look back now this was the best exercise I could have been doing for my lungs and my sinuses. I was diagnosed at the age of 16 with “exercise induced asthma” because I was constantly coughing up junk during swim practice and swim meets. In my early 20’s I don’t remember getting sick very often except for my struggle with fertility. I had labs drawn, a Hysterosalpingogram (HSG), went on fertility medications, had a second tubal surgery, and finally went to a fertility clinic to start the In-vitro fertilization (IVF) process.

I have always wanted to be a mother, it has been my goal in life, and I have dreamed about having a big family. I was very lucky and got pregnant on my first IVF cycle, with twins nonetheless. My husband and I were so excited. When I started to relax about my pregnancy I started to have complications. I started contracting at 19 weeks, then we lost our little Corbin at 24 weeks. We were devastated. We continued to have complications with bleeding, and more contracting and then at my 29 week appointment our living son's heart rate had dropped way below normal. I was checked in to the hospital and then ended up delivering our son 12 weeks early with an emergency cesarean section. 2 years later we tried getting pregnant again through IVF and got pregnant but miscarried 8 weeks later. After this miscarriage I didn’t want to try to get pregnant again  without getting everything checked out. We found a great high risk pregnancy center and went in for genetic counseling. My older sister had just been diagnosed with Cystic Fibrosis 2 years before and they decided to screen me for the same genetic markers that she had. August 19th 2015 I was diagnosed with Cystic Fibrosis. I would say that starting from the years we were  trying to conceive until this diagnosis were some of the most emotional years of my life. With fertility treatments, miscarriages, burying a child, doctors appointments and then being diagnosed with Cystic Fibrosis; it has surely been an emotional rollercoaster.

Last summer we were approached by my beautiful sister in law, she offered to get implanted and carry our child. I didn’t want to give up on my body and we decided we would implant one embryo in my sister in law and one in me. We are both 26 weeks pregnant and are so excited to complete this journey. I am working closely with my OB, high risk doctors, and my CF team to make sure that the baby and I stay healthy and complete the pregnancy with a healthy baby. Now, my pregnancy hasn’t been the easiest; I bled through the first 18 weeks, started contracting at 20 weeks, and I am on multiple medications. The important thing to remember is that you can’t change what you're given in life but you can control how you look at the challenges you are given. Don’t give up. If there is something in your life that you want, there is a way to get it, or accomplish it. Just because you have Cystic Fibrosis that doesn’t mean anything. Focus on what you can change and what you can do to make life easier, keep yourself healthy and get what you want!

Keep Dreaming! "
 

 - About Today's Contributor - 

Trini is a passionate mom, nurse, writer, and relentless dreamer. To follow her journey of dreaming and becoming a mom go to her blog, Dreaming Pink and Blue.

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.

Simply CF : Put to the Test

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.
 

The beginning of every Cystic Fibrosis (CF in every occurrence after) story starts with a series of tests. The tests prove a positive diagnosis. But, what exactly are the tests that confirm the presence of CF?"

Newborn Screening
In every U.S. state, babies are now required to undergo newborn screenings upon birth. The screenings are for a myriad of serious medical conditions, including CF.

Early detection is key to monitoring any condition and implementing treatment, especially CF. Within the first few days of life, a blood test is done to check for certain medical conditions. If the blood test comes back positive for CF another test will be conducted to confirm or rule out a CF diagnosis. Early intervention of CF is crucial to ongoing care, quality of life, and preventing lasting damage caused by the disease.  

Sweat Test
If a person is showing symptoms of CF or a newborn screening is positive for CF, a sweat test will be done to confirm a CF diagnosis by an accredited CF Center. A sweat test can be done at any age. A sweat test measures the amount of salt in a person’s sweat. People with CF have a high concentration of chloride in their sweat due to the genetic nature of cystic fibrosis. Depending on the amount of chloride found in the sweat of the individual tested determines the CF diagnosis.

Genetic Testing
If there is any discrepancy in the outcome of the sweat test results, genetic testing will take place. A blood sample is checked for specific defects in the gene that causes CF.vA genetic test is also done after a positive diagnosis to help learn more about the person’s mutations.  

Upon a confirmed diagnosis of cystic fibrosis, an individualized treatment plan will be put into place and a new story will be written by all those impacted by that diagnosis of cystic fibrosis – each unique and born of their own great tenacity.

 

To learn more about CF testing please visit https://www.cff.org/What-is-CF/Testing/

 

 

 

Source: 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.