Amy March-Comins : Improving the Lives of Patients while living with Cystic Fibrosis

Amy March-Comins’s BIO

Introducing Amy March-Comins , Helping to improve the lives of patients diagnosed with Cystic Fibrosis while she herself copes as a CF sufferer .

NOTE  FROM  EDITOR::: Amy’s story is unique in what she has accomplished professionally despite her illness which, as you will read, affects her daily activities significantly. What touched me most about Amy’s story are her drive and passion to excel in order to be a role model to her young sons but also to pursue her dream of helping other CF sufferers. Amy reached out to me to help her strengthen her web site, since her goal is to raise funding for her medical expenses. I wanted to learn about her as a person and a professional to gain a better sense of her talents and expertise. Therefore,  I felt that sharing her personal story through BSO would provide a fuller picture of the “who, what, & why” behind her web site.

As Founder & Editor of BSO, with this interview, it is my goal to help her bring awareness to Cystic Fibrosis to the larger community and to inspire those in need of her professional expertise to connect with her. Talent draws attention and I’d like to play a small part in helping her realize her career goals while facing CF each day.

Here is Amy’s story :

I grew up in Orem, a small town in Utah State. We moved here when I was 6 years old. I come from a small family of 5 people and we are all very close to this day. I met my husband Matt (from Bountiful, Utah) in 2006 and immediately, I knew that I loved him.

A month later, we were married. We’ve now been married for 7 years. We have two beautiful little boys, Matthew Jr. (6 yrs old) and Alexander (3 yrs old). They are both very happy and energetic little boys and I’m so blessed to have them in my life.

 In the Spotlight Interview

1. Please share with us your professional credentials.

Amy: I was always fascinated by medicine and by the human body itself at a very young age. I knew one day that I was going to study the human body.

I am also truly passionate about working with the elderly. I enjoy being around them and the company of my elders. To be around their sweetness and stories made me realize that they are in fact our greatest treasures.

I attended Utah Valley State College & obtained by Associate Degree of Applied Science. I also attended Stevens-Henager College for my Associate Degree in Respiratory Therapy. My work experience is as follows:

1) As an LPN/RMA Cardiology in Cardiovascular ICU , I would oversee the care of patients in the cardiac care unit. Most patients in the unit were pre and post operation cardiac patients. Some of the procedures include: cardiopulmonary angioplasty, cardiovascular angiography, cardiac ablation, pacemaker placement, stents, cardiovascular balloons, cardioversions and thallium stress testing. I also would manage the patient medications under the direction of the cardiologists. Patient care and instruction are crucial, along with after care and recovery for patients to begin a new life. Including cardiopulmonary rehabilitation, nutritional education and educational tools and skills to help patients have a successful recovery and begin living a healthier lifestyle.

2) As a Polysomnographer PSG, I would work with individual patients who have a diagnosed or suspected sleep disorder. I would observe patients in a sleep clinic setting and in diagnostics I would study and read a series of tracings accumulated from over 20 electrodes placed on the scalp, face, and limbs of the patient’s body. Each electrode is responsible for identifying activity in the area of the brain or body to which it is attached, while the patient sleeps. Then it is my responsibility to read, evaluate the results and to find irregular readings that may point to the cause of my patient’s sleep issues. In addition, I am responsible for the care and safety of the patient during the sleep study. It’s not uncommon for the study to discover serious medical conditions like irregular heartbeat, cessation of breathing and also the patient having a cardiac arrest during the night of the study which I would address immediately to keep the patient safe.

3) As a Respiratory Care Practitioner RCP, RRT,  CRT  I worked in a home care setting with an advanced respiratory home care program for my patients. Patients are currently being discharged from a hospital setting or rehabilitation center to go home, then are referred to me for constant home care and evaluation for respiratory needs including but not limited to: Aerosol Therapy to provide treatment to patients who suffer from illnesses such as Asthma, Emphysema, Chronic Obstructive Pulmonary Disease (COPD), and Cystic Fibrosis (CF). Along with equipment, education and medication administration education is crucial for patients to learn how to manage and treat their condition.

CPAP/BIPAP are used to treat patients with obstructive, central and complex sleep apnea. Home Ventilator systems are set up for patients who require either invasive or noninvasive ventilator assistance to help the patient breathe. Lastly, Oxygen therapy and in home oxygen saturation testing. If the need requires it, a home oxygen therapy system is set up in the patient’s home and education, teaching and demonstration is also given to the patient in order to help the patient be an active supporter in their therapy.

 

2. You were diagnosed with Cystic Fibrosis at 22 years of age. Please share with us what that has meant for you. How has CF affected your daily life and life goals?

Amy:  Being diagnosed at 22 yrs of age  was devastating. I didn’t know anything about CF, and receiving that type of diagnosis chamged my life completely from that day forward. The only thing I did know about CF was that the mortality at that time for anyone with CF was 30 years of age. I was 22, so all I heard that day in the exam room was that I have 8 years left to live and that there was a limit taken out on my life. I was devastated.

 

3. Take us through a typical day, start to finish.

Amy:  I don’t use an alarms to wake up- my body will usually wake me up around 5:00a.m. to suffocating breaths and pain. When I finally realize in the haze of the morning that I’m in need of some breathing assistance is when the pain comes rushing back to me, the painful breathing and body pain wake me into reality and I’m once again acutely aware of all my pain.

I start with my pain medications and breathing treatments every morning along with my chest therapy. I have chest physical therapy 4-5 times a day, 30 minute sessions at a time. It usually comes out to 2.5-3 hours a day of sitting on a breathing machine, hoping for the chance to take a deep breath.

The chest therapy is done 4-5 times a day with a breathing machine call The Vest. It is in fact a Vest that I wear, and is filled with pressurised, pulsating air that shakes and vibrates my chest to break loose the thick mucus stuck inside my lungs. It helps to loosen the mucus enough that I can then cough it out, in hopes for a clear airway.

During the 30 minute vest therapy, I am also hooked up to a nebulizer machine dispensing aerosol medications and antibiotics to open up my airway and treat infection as well. I have to set 4-5 different alarms throughout the whole day to help me know when it is time for another 30 minute breathing session. Whatever I’m doing when the alarm sounds off has to wait. You’d be surprised about the fight that goes on in your head when that alarm sounds. ‘Can’t I just finish dinner?! Or should I breathe?’ ‘Maybe I should just finish folding this load of laundry or should I breathe?’. I feels somewhat crazy.

The next step of the day is PILLS. I take about 22 different oral medications, 5 nebulized medications, and 2 inhalers throughout a 24 hour period. The only challenging thing is battling the side effects to some of the medicines. I’m a mommy and I don’t want to have a medication decrease my ability to be the best mom I can.

I also have to do pulmonary rehabilitation everyday which I call cardio. Through the severe pain, suffocating breaths and struggling oxygen saturation, I still have to pull my body up to a treadmill and work out everyday. It’s painful but it keeps my lungs clear of bacteria infested mucus and it also keeps my joint mobility strong when CF is tearing apart my joints.
I have to look and watch the weather to see what is has in store for the day. Extreme heat, sever cold and overcast weather affect my CF, energy, fevers, joints, pain and my breathing. I have to plan carefully what I do. One bad plan, and I’m sick in bed with a high fever the following day.

I have to be careful not to over exert myself in things I do. Normally, a person can look around their home and see a task that needs to be completed and you complete it. With having CF, the simplest of tasks can be difficult to complete. For example, small tasks like showering, blow drying hair, running errands, vacuuming, bathing my 2 year old or simply walking outside to get the daily mail…as simple as these tasks sound, on my good days, they are difficult to do ;on a sick day, they are impossible to complete. With any activity, I do throughout the day, I have to think ahead about how I will be after the activity and if i’ll be able to be function and be the mommy I need to be.  So I plan very carefully.

 

4. If you were hired as an independent consultant using your professional expertise, what would be your dream job?

Amy:  My dream job would be to create a social site that any respiratory patients can connect with other patients suffering with their same ailment. Also, to have a Respiratory Theripist online to answer any questions reapiratory and to have support for their suffering.

Cystic Fibrosis patients are not allowed to have any contact with each other. The reasoning being that is cystic fibrosis patients have bacteria sitting in their lungs 24/7, and if we were to cough around each other, we risk cross contamination of bacteria one to another. One of the risks, being that some bacteria are highly resistant to all antibiotics and that itself is a death sentence to anyone with cystic fibrosis.

When I was diagnosed, I found cystic fibrosis to be very lonely. Being admitted for weeks on end in a hospital, and knowing right on the other side of my hospital wall was another person suffering with Cystic Fibrosis and we couldn’t even say hello. I craved contact from other people with Cystic Fibrosis after being first diagnosed. Just to ask the simple question ‘is this normal?, did this happen to you? Do you ever experience this? And is it normal to feel this way?’

I believe that no patient should be alone in their disease. That is why this forum for patients with any respiratory ailment can connect and know that they are not alone and find others with their same challenge to bring hope. Hope for things unseen, through a connection. That’s my dream job 🙂

 

5. What’s your life goal?

Amy:  I want to inspire my sons and other people.
I want Matthew Jr. And Alexander to look at me and say, ‘because of you, I didn’t give up. Because of you I kept going and because of you, I’ll fight to the end.’

Everybody has gone through something that has changed them in a way that they could never go back to the person they once were. It’s what you do after that moment that defines you as a person. You have the right to choose what your own legacy will be.

I want my sons to see that you can live through your deepest nightmare or see your own mortality in front of you at a very young age and still have something to fight for. It’s all about the fight.

I’ve lived through so many horrific events in my life and I know I survived those things because my boys needed their mommy in their future. The one prayer I have every morning and night, is to see my little boys grow into amazing men. This fund (www.gofundme.com/Saving-Amy-Comins) IS my life, it would give me a chance to have a longer life expectancy. It’s everything to me, it’s my air in my lungs that I’m humbly asking for. No gift of support is too small. Every gift would help ease my burden of struggle.

 

6. What charitable causes are most meaningful to you & why?

Amy:  I don’t have much, but I always believe in paying it forward. I’m a very active supporter in the CF community. One of the programs that my sons love to participate in is to provide Christmas to a CF family in need. Just to see the joy my sons have in helping someone they have never met and giving freely to them is one of the best lessons they can learn in this life. I hope they will carry on that siprit of giving into adulthood. Being a CF sufferer myself, it’s very dear to my heart.

http://www.gofundme.com/Saving-Amy-Comins

 

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