Guest Blogger- Faye

I am excited to introduce my next CF Mommy blogger, Faye from CF Mudda. Her blog has a plethora of information on staying healthy with CF as well as insights on being a mother and dealing with Cystic Fibrosis. Faye's story is amazing and extremely unique to the CF community. More and more CF patients are becoming parents, but Faye has 4, yes 4, children! Her handsome boys are Charles (7), Marcel (5), Gabriel (3), and Sebastian (2). As a cyster with one baby I am in awe that she is able to manage CF and being a mommy of four children. Such an inspiration!

Sabastian's 2nd birthday. Faye had been on Kalydeco for 5 months at this point!!

Everyone that has CF seems to have a very different experience. Share a little bit about your CF story or how CF effects you.

First of all, let me say thank you for having me on your blog Inhaling Hope, it's an honor to be asked. 

My childhood was different to most people with CF. After the age of three, I didn't go to hospital for 13 years. Not because I had "mild CF", but because my mother did what was considered a fairly 'radical' choice at the time. When I was diagnosed she thought to herself,"There has to be a better way". She researched nutrition, then chose to completely change my diet and supplements from the typical CF diet to a very natural holistic approach to my CF. After applying these changes, my health turned around. I had no cough, huge appetite, normal weight until I was around 13 (after my first lung function test I developed my first chronic cough). During this period I did have some courses of oral antibiotics, but for the most part the hospital system did not play a big part in my life. I felt normal (I just thought my mum was SUPER strict about healthy eating for some reason?! *ha ha) I didn't know I had CF until this time. I remember asking my mom why this "stupid cough" wouldn't go? She said I had a condition. I asked what was it called. "Cystic Fibrosis". I asked if I will die young. "The average life expectancy is 21". I was 13. It shocked and confronted me with my mortality. Her attitude helped me cope, just to get on with it, no self pity was allowed. Privately I struggled with the reality for a few years after that. It's a very hard thing to understand as a child, quite daunting. I did however understand instantly why mum was so protective of me and what I ate/supplements. She was strict about it, but I was (and am) thankful that she taught me how to ignore how I feel and do whats required. Made me stronger and we remain very close to this day. She was incredibly brave to take a stand, it wasn't easy. It required a lot of educating, effort and dedication to make sure my health was looked after. 

I think there's a common misconception about alternative health that you're somehow a naive hippy in denial. The reality for me was the opposite!! I am very realistic (as are my parents) and everything we have done was researched and scientifically proven (but not by drug companies). Doing things naturally takes a huge amount of self discipline. A lifestyle change, but my mum is a sharply intelligent Scott and a science buff, she took to it like a duck to water. I am profoundly grateful for the life I have led, I feel I owe it to her initial choice to do it differently, my fathers constant support and respect of her knowledge, their dedication and love for me was palpable. At 15 I plugged in and took more responsibility. So 'yes', CF has impacted my life equally as much as everyone else with the disease, just differently at times.

Deciding to have a child when you have CF is a very difficult decision. Please share how you came to the decision to try to conceive for your first child. Was the decision any harder (or easier) with the following three children?

It was not a difficult choice for me or at least I didn't perceive it that way. I did full time natural therapies from the age of 16 to 19. After I found out I had CF I rebelled against my healthy diet and lifestyle. Ate junk foods and became sedentary. Became reckless. My immunity got low and I caught the worst flus of my life. One season I ended up in the Intensive-care care unit, flat-lined. I almost died. Contracted MRSA, Aspergillus and sustained significant lung damage (Bronchiectasis) I was told I needed a double lung, liver and heart transplant. The whole experience scared me straight!! Instead of signing up I chose to roll that dice and go to Mexico to reboot my body from the inside out at the hospitals there that offered alternative medicines. I returned 4 times to 3 different clinics over a 5 years period, also continued the therapies at home full time. To this day I still use many natural therapies to help support my health. It was a big sacrifice, but I had one goal: A family.

For me, the choice to have children was synonymous with getting married. I'm Catholic so one doesn't come without the other in our culture (usually). The big decision was can I get married? By the time I was 21 I felt I was. I met Benjamin when I was 23, got married within 8 months of meeting. We were expecting our first son a month later! That was 9 years ago in July. Made all the efforts worth while. I have no regrets about it at all!! Thank God it paid off.

Tell me a little bit about CF and your pregnancies. What were the biggest challenges (if any) caused by CF in your pregnancy?

During my pregnancies my health and well being was a priority. I managed it similar to when I was a child, naturally as possible. I deliberately chose to approach it this way. I didn't want CF it to overshadow such a wonderful and personal time. My pregnancies were managed by choice by a regular hospital, I did go for check ups at CF clinic a couple of times for my chest, but that was it. I refused lung function tests because I am not satisfied with their infection control standards. I had the best and most experienced gynaecologist around and he did a wonderful job with managing the whole event. I am very level headed by nature, so going it alone was not nerve wracking at all, I felt good. I needed no oxygen or wheelchairs. Walking around, shopping etc. The only thing that I did find awful to cope with as the babies got bigger when they would sit on my bladder it made coughing/physio difficult to say the least!! When sleeping I had two pillows at six months, but not for breathing, for acid reflux (a symptom very common for a lot of non CF ladies). The labours were totally natural, quick, 45 minutes hard labour, no breathing discomfort at all (no tearing!!). Out of hospital the next day, recovered very well. 

Our 4th baby was different. I had had an accident in 2009 that fractured a rib. Sebastian was due October 2010. So we chose to be cared for by the CF clinic and gynaecologist, which was a very good experience as well! I had IV's during this pregnancies for the first time and found out he was breech. They tried to turn him 3 times, but Sebastian wouldn't be moved! C-section was not advised due to the CF physio required after birth to clear ones chest. I was told to deliver him naturally?! I freaked out!! I requested an epidural, which was a safer option in case any problems we had to go to c-section. But to my relief, it was again 45 minutes hard labour, pain free!! I LOVE EPIDURALS! One 3 stitches, recovered very well and was the best birth ever... gotta love pain free!

To have as healthy pregnancies as possible I supplemented with a lot of raspberry leaf tea, vitamin E, Selenium (to prevent CF), B vitamins, Noni Juice, Aloe vera juice (bottled) and a LOT of juice and smoothies!!
All up having babies has not been difficult (my health at 16 was much harder to cope with) but I no doubt it was more difficult than healthy women for sure. I had to keep on top of my nutrition and not burn the candle at both ends so to speak. Plenty of rest and physio to keep my chest clear as possible, nebulized antibiotics, sometimes cipro, but I wasn't obsessed with CF stats and comparisons. My lung function was 55% when I started having children. I was hospital/admission/IV free again for 7 years in which I had 3 of our sons. It took a lot of effort on the lifestyle side. I couldn't run around like my friends, I had to rest, take time out to do treatments, eat and drink good things to take care of my health. It all paid off, I had very healthy babies, no CF and I lived to tell the tale!

Charles 8 weeks old. (2007)

What is your daily CF care schedule (treatments, pills, exercise) and how do you manage your CF care with being a mother of four?

Benjamin is a super hero husband!! From the time our sons were born he has taken night duty, passing them when I breastfed them (1 year for my first, then each time it got less due to feeling wiped out when I fed!) changing nappies. Just anything I needed support with he's there. I need sleep to stay well enough to look after them, I think this has been crucial for me to manage it all. Ben takes breakfast duty while I nebulize (ventolin, atrovent & an antibiotic when applicable) after that he goes to work and I takeover. It's much easier now that I have two sons in school. When I had 4 or 3 at home is was a lot to cope with, I leaned on my mum's support a lot. We took care of them together when I was feeling a bit overwhelmed by myself. At nap time I fit in physio/pulmozyme. In the evenings after the boys are in bed I do the same: morning nebulizer routine, plus Zen Chi machine (you can read about that on my blog), and I take a lot of supplements! At the moment, Vitamin E, selenium, zinc, magnesium, Vit A (natural), NAC, curcumin just to name a few! I take these mostly around food. I follow the 80/20 principle in my diet: 80% healthy, 20% indulgent (by indulgent I mean gourmet, not junk food 'treats'). Exercise is my weak spot, I find it tricky to in summer and fitting it in. I do an hour a day on the weekend, but when I look after the boys by myself during the weekdays it generally falls by the wayside (although I am very active running after them!) I am slowly changing this and I'm sure it will be better once I do exercise more regularly. This is a goal at the top of my list!!

At what age did your children start to realize that you are a little different than other mommies in that you have CF?

I don't think they have compared me to others mummies, they haven't noticed, but they do realise I have a cough.

How did you initially explain CF to your boys? Has that explanation changed as they have gotten older?

Charles asked once if my cough will ever go away? I explained it's like a boy in one of my son's class who needs glasses. "He was born that way and it's fine, he just needs to wear glasses to see, I just need medicine for my cough that I was born with. Thank God your healthy and strong". They know some people are born with health problems and it's OK. I make sure I am positive around them, they don't know the words 'Cystic Fibrosis' and I don't want to worry their little hearts with that reality yet. If possible when they're young men, but it depends on how my health holds up. Obviously, if I'm in serious danger of death they will need to be told sooner. It will be difficult for them I am sure, but we will do everything to prepare them to be strong enough cope with this news. We have a strong Catholic faith, suffering and death are perceived slightly differently than with non religious beliefs. It helps to accept it all and put it into eternal perspective for me and I hope my family in the future.

What aspect of CF (physical, mental, emotional) seems to be the most challenging when it comes to mothering?

Before Kalydeco I found it hard no to be able to play physical games with them for a long time. Now I can play in the park, run, climb, trampoline etc. Just like you want to with your children. I was disappointed Ben got to do all that with them and I always had to watch because I was too puffed to participate for long. I suppose the guilt of not being able to do typical 'mother' things was difficult to accept at first, like getting up at night. But over time you realise there is good in all sorts of situations. Because of these limitations of mine they have been able to bond very closely to daddy, which I think is wonderful for boys, particularly if anything happens to me. It's always hard becoming a new mother, your own expectations plus society's standards, but after you reach a certain age and gain experience confidence helps to overcome your insecurity's.

October 2012

If you could give advice to a CF woman who is contemplating starting a family what would it be?

Build up your system, reboot your health.. Buy a juicer and get juicing!! Cut out unhealthy foods, eat as natural as possible. Selenium supplements helped me. Recently I have found a NAC supplement with added selenium which I think would be ideal!. Exercise. By doing all this I'd hope the need for excessive medications would be reduced. That was my goal, to be on as few meds as possible, for my own health but also the baby. Sometimes it's unavoidable, but if you can manage it, great! Find a good natural health practitioner to help you adjust or add natural things to your routine, strengthen your body naturally.

Is there any advice you would give a new mother, such as myself, that is just embarking on this journey of motherhood and CF?

Try relax more.
Your not a freak, it's possible for you to have children if take care of yourself.
Marry a good man!!!
Don't be afraid, get educated about nutrition and make a change (or two!)
Don't eat junk food.
Family support is vital (or just some support system) so you can keep up with your health care.
Don't ever let your treatments (nebulizer/chest clearance) slip.
Supplements help.
Prayer is powerful...
JUICE!! I juice everyday, vegetables & fruits. I do at least one litre a day. Carrot + Beet + apple I have found to be the most fundamental juice for my health. Be positive, happy and open minded about your health and how you approach it. Little things can make a huge difference to longevity and quality of life!!
Remember you are so strong, not weak, to have made it this far! ... xox

To read the stories of ten other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or are CF and pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com