A first chance at life after transplant- Fawn Rogers

A first chance at life after transplant- Fawn Rogers

Hello, I’m Fawn, Cystic Fibrosis owner, double lung transplant recipient and lover of life.   

I was born in Zimbabwe but I was the only CF patient in the country and had to travel often to see specialists and get my meds from SA. I eventually relocated after highschool and have been here ever since.

Growing up with CF was tough, but when you don’t know any better, it’s manageable. I missed a lot of school as I had to have IV treatments for 2weeks every 3months and I wasn’t ever able to partake in any sports. Breathing was always a struggle and putting on weight was just a nightmare. I eventually deteriorated to a point where my lung function was less than 20%, I was on high flow oxygen 24/7 and I had a tube inserted into my stomach to feed me (PEG). I also had to have an insulin pump for my diabetes, a permanent IV catheter (port) and I was too weak to walk much further than a room at a time. 

 

My days consisted of literally just trying to stay alive; throwing up throughout the day, eating what I could, having nebulised treatments 3 times a day and physio. 

I was listed for a double lung transplant and a donor was found 8 months later in 2013! My 8hr surgery went well but I had A LOT of setbacks afterwards and it took 3 months in hospital to recover. Since then, my breathing has been amazing, my weight is more stable and I’m completely tube free and “healthy”. 

I met the love of my life who I will be marrying at the end of the year. I started my own digital marketing agency and bought a beautiful little house. I also co-founded an organ donation awareness charity with 2 friends.

I am grateful every day for the life I am able to live thanks to my donor. I still have CF and all the issues that go along with the disease but my “new” lungs have given me a first chance at life and I am living it to the fullest!

 

Fawn Rogers – Marketing Director of TELL (Transplant Education for Living Legacies)

www.tell.org.za             FB/TW/IG @tellorgza

Fawn wrote this month’s blog post on Nutrition. Click here to check it out!

 

Foods To Feed Your Face With- Tips from a post-transplant CF patient

Foods To Feed Your Face With- Tips from a post-transplant CF patient

As a CF who has always struggled with maintaining weight (even post transplant) I know my way around a kitchen and food aisle better than most.

One of the biggest issues with having to eat SO MUCH is that we tend to run out of ideas on what to eat. We get bored of the same old snacks and with boredom comes decreased appetite.

Everyone knows, you eat more when it’s delicious!

So, here are a few cost-effective snack ideas that you can include in your day to day eating plan:

Cupboard foods:

2min noodles

Peanut butter on apple slices

Nuts 

Granola bars

Fridge snacks:

Veg sticks (carrots/celery) and hummus

Cottage cheese with cucumber or tomatoes on rice cakes

Cream cheese on crackers

Provitas, cheddar, bovril

Sweet Corn with butter

Caprese salad (sliced tomatoes, pesto, mozzarella)

Meatballs/ cocktail sausages / fish fingers 

Liver pate and salticrax

Snack platter – cold meat, olives, cheese squares

Cucumber sandwiches

A bit of cook time:

Fried halloumi with sweet chilli sauce

Pancakes with loads of butter and honey

Scones with jam and whipped cream (keep a can of whipped cream in fridge – also great with hot cocoa)

Roasted chickpeas

Mini frozen pizzas

Pre-made baked goods:

Banana bread with lots of butter

Bran muffins (can freeze these if you make a big batch) 

Cheese muffins

Cookies

Cheesecake

Milk Tart

Cheese straws

Sausage rolls

Anything on toast:

Avo, tuna, marmalade, peanut butter, eggs, nutella, baked beans

You’ll notice that there are no crisps.sweets or chocolates on this list. For me, those are treats you have once in a while – not a wholesome snack. 

Remember, these snacks need to be consumed over and above your 3 meals a day!

My eating regime goes a little something like this 

8am Morning tea + biscuits/rusks

9am Breakfast: 2 slices low GI toast with cottage cheese (or eggs and bacon on the weekend)

10am Breakfast snack: Muesli and yogurt or a smoothie

12pm Lunch: Left-over dinner or toasted sandwich

3pm Tea snack: One of the options above

5pm Pre-dinner snack: One of the options above

7pm Dinner: Protein + veg + fat/carb eg steak, salad and fries.

8pm TV snack: Popcorn

In between all these meals you’ll also have to get your ensure/fresubins in. Post-transplant I don’t have these any more but pre-transplant I would have them with all my snacks.

Preparation is key, have a list of all your favourite snacks ready so that whenever you hit the shops you don’t have to wander around aimlessly wandering what to get and then end up putting nothing in your trolley. With a list of ideas by your side, it’ll make life much easier!

Happy eating!

Fawn Rogers – Marketing Director of TELL (Transplant Education for Living Legacies)

www.tell.org.za             FB/TW/IG @tellorgza

Click here to read Fawn’s story 

CrossFit changed my life! – Louise Coney’s CF story

CrossFit changed my life! – Louise Coney’s CF story

Where my story began

I was diagnosed with Cystic Fibrosis at birth when I was born with a meconium Ileus, with the delta F508 mutation. My parents were told I would live till I was 7 years old….both being Engineers, and determined individuals, they decided to do everything possible to ensure that I would outlive that age.

The approach that was taken by my parents, and one which I continue today, is to be very disciplined with all aspects of my medical treatment – not only do I consider my twice daily nebulizer and physio treatment to be a non-negotiable and unavoidable part of this treatment, along with all the pills, but I consider exercise and diet and monitoring of my “medical stats” an integral part of this regime.

I always have been very active, and this was instilled at me at school where it was compulsory to participate in a sport each term. This continued when I went to university, where I regularly went to gym, and being a geologist, meant I spent a lot of time hiking and carrying rocks (literally!).

Diagnosis of CF-related reactive arthritis

Towards the end of 2009, things changed. After an initial misdiagnosis of gout, I was eventually diagnosed with CF-related reactive arthritis, which presents as inflammation in the joint around my big toe or in my Achilles, about 2 weeks or so after I’ve had an infection. Long story short – I had all the side effects to the first treatment I was put on (with little to no benefit) and the second one caused all manner of other, very serious side effects, so now I only take medication if I have a flare up. The unfortunate result of the reactive arthritis was that I couldn’t exercise in the way I had been before (running, cycling, yoga), and I was in a lot of pain. I all but gave up on exercise as I only exercised when I could, and was completely disheartened by how my fitness levels fell.

My CrossFit journey

Fast forward to 2016. My husband Gus had started something called CrossFit in 2015, and had been trying to get me to start. I was completely intimidated…. all these extremely fit and strong people, and there I was. I kept thinking I needed to be fit to start it, but eventually bit the bullet, and turned up. Because of the arthritis I couldn’t run. I couldn’t skip. Problem? Nope! I could row, or use the assault bike (as horrid as it sounds) instead. Flare up with my foot? No issue, the exercises could always be changed accordingly and I can keep on training. Within the first month my FEV1 (one of the measures of lung function) had increased by about 4%, and when I was due for my next bone density measurement, this had increased as well (the benefits of lifting weights). My FEV1 currently sits around 55% but I find that even if this drops slightly, I can keep training.

Overall, even though I have had a number of CF related infections since I started, these have not hit me as hard as they would have previously. Although I know that CrossFit won’t be for everyone, having the base level of fitness that CrossFit gave me fundamentally allows my body to handle infections better. On top of this are the obvious mental benefits, and the phenomenal community – I’ve made new friends for life through CrossFit! At nearly 40 years old, I can confidently say I have never been in such good shape fitness wise, and I am convinced that by having found CrossFit, I have extended my lifespan, and have improved my quality of life!

 

 

Cystic Fibrosis New Frontiers Committee (CFNFC) Update on Trikafta : July 2020

Cystic Fibrosis New Frontiers Committee (CFNFC) Update on Trikafta : July 2020

CFNFC is the SACFA subcommittee tasked with facilitating access to affordable CF drugs for patients in South Africa, with an initial focus on CFTR modulators such as Trikafta. Over the past few months of research and legal consultation, the committee has formulated a strategy and there are various initiatives in progress. The hurdles to be overcome should not be underestimated, with the setting of an affordable price being a major challenge. The current price to bring in a year’s supply of Trikafta is around R6million.

Although still in the early stages, the committee is pleased to announce that they have opened an introductory engagement process with Vertex Pharmaceuticals. The committee intends to build meaningful relationships with various stakeholders, including medical aids and the Health Department, and will endeavour to communicate any progress timeously to the CF community.

CFNFC will represent the South African CF community as a collective, and will head negotiations with Vertex to facilitate affordable access to Trikafta and other treatments for all CF patients. It is important that all interesting parties move forward as a united force to overcome a number of major challenges in this complex process.

Access to this exciting new drug would represent a significant and exciting development for SACFA, CFNFC and CF families alike.

For any CFNFC queries, parents and patients are welcome to connect with Belinda Nell (CFNFC Secretary) via email at belinda.j.nell@gmail.com

Exercise and CF

Exercise and CF

Regular exercise plays a very important role in maintaining a healthy lifestyle for both CF patients as well as healthy individuals. A regular exercise routine helps an individual to maintain a healthy body weight, reduce their risk of developing comorbidities such as diabetes, strengthens bones, strengthens your immune system, improves mood, as well as strengthens your respiratory and cardiac muscles.  However many CF patients are aware of the difficulties of integrating exercise into their routine.

Physical activity has been recognized to have considerable clinical benefits in CF patients. Some of these benefits have been mentioned above however here are a few that are more specific to  CF patients. Integrating exercise into your routine could slow an individual’s lung function decline, strengthen the heart muscle and thus allows it to cope better when the body is put under stress as well as improves lung function which increases the reserves to use during exacerbations or lung infections. Exercise also helps CF patients to be less limited in what activities they are able to do with friends and family and thus allows them to enjoy a more normal lifestyle. Regular exercise can also lead to an improved self-esteem and increased confidence and independence in CF patients.

Physical activity recommendations for each individual will vary according to age, weight, symptoms, lung function and current health. It is therefore important for CF patients to seek professional advice from a Biokineticist and physiotherapist who, along with the medical team, will advise the patient on their individual requirements, and work with the patient to deliver practical recommendations, ensuring they are doing what their body needs to stay healthy and strong. Physical activity should not be used to replace, but rather done in conjunction with regular physio sessions.

There are also however times where a CF patient will be advised not to exercise. Some of the contraindications for exercise are pulmonary hypertension, an exacerbation or respiratory infection as well as during courses of treatments or antibiotics. CF patients that also have diabetes should check their sugars before and after exercise and monitor them closely during exercise and always have a snack with them in case of a sugar low.

Some simple exercise guidelines for CF patients
Children:

It is vital for all children to develop a positive attitude towards exercise as well as good exercise habits from a young age. This starts early and with the family. When families commit to regular activity, children learn good habits and develop a good attitude towards it. Families should encourage exercise in the form of games or play time rather than traditional exercise such as running. Kids can be taught to ride a bike or to throw, catch and kick balls as this will provide the opportunity for them to potentially get into a ball sport later on in life. Gymnastics (stretching) and dancing are also a good form of exercise for kids as it is weightbearing activities like these in younger years that are so important for development of muscle tone and good bone density. Regular family walks in a beautiful setting can also be a good form of low intensity cardio exercise for kids and this is important for strengthening their respiratory and cardiac muscles from a young age.

 

Adults:

For adults it is important that they include both cardiovascular and resistance training in their exercise routine. Low to moderate intensity cardio training includes activities such as cycling, jogging, walking and swimming and these are all vitally important in strengthening both your respiratory and cardiac muscles. Including this type of physical activity regularly could help decrease levels of exhaustion that occurs after performing normal activities of daily living such as house work , and thus improves overall quality of life.  Cardiovascular exercise also helps in weight maintenance as well as reduces the risk of acquiring other comorbidities.

Resistance exercise also plays an important role in strengthening both your bones and your muscles. Doing bodyweight exercise as well as light weights (dumbbells) or resistance band exercises are examples of resistance training.  This type of exercise is also important for maintenance of bone density as well as increasing muscle strength. This will also help reduce the stress that daily activities place on your body.

Stretching and breathing activities such as Pilates and yoga are also incredible ways for CF patients to strengthen their lungs and increase their lung capacity. Stretching will open up your chest and reduce the amount of pressure in your chest cavity and this too will improve your quality of life and ease of breathing.

The amount of time spent doing exercise is totally dependent on each individual and how they feel. It is important to start off slowly and build up and add on as you feel fit to.

For adults  that haven’t made regular physical activity  a part of their normal routine, they should seek medical approval before starting an exercise program. This will ensure that they can exercise safely. Some activities can make heart and lung disease and bone and joint problems worse and thus an exercise test may be needed to find safe levels for each individual.

To reduce the risk of musculoskeletal injuries be sure to participate in any activity in moderation until you have built up enough stamina and strength to exercise at a higher intensity.

 

Please feel free to get hold of me  on duobalacedliving@gmail.com if you have any questions regarding exercise and CF. Otherwise follow our Instagram page @duo_balancedliving for balanced healthy living tips.

Written by Nikki Hamaan, a Biokinetecist from Duo Balanced Living

 

 

Guilt ridden CF mom

Guilt ridden CF mom

Click The day my twins were born, something else was born too. It is a different kind of love. It is deeper, and it feels different. It is as if my heart is running outside my chest. Nobody could ever prepare me for how much motherhood will change me. But with that, something else was born too unfortunately… the feeling of guilt…

It is essential to look at the sources of guilt. Guilt does not only influence me as parent, but it influences my children as well.  It happens that I feel guilty about something and let them get away with unacceptable behaviour.  And it is in that moment where the real harm is done. Guilt has just paved the way towards inconsistency, unpredictability and fear.

CF (cystic fibrosis) is a genetic life limiting disease with it’s own daily challenges.  Sometimes I get so tired that I silently wish I can go to hospital and rest. And then I feel guilty for it. Then the time comes where I have to go to hospital. Hospitalisations can be from 14 to 21 days. And then I feel guilty for not being at home and doing my part as a mother.

What do I do with my feelings of guilt?

I gave myself permission to be human. I miss my own children’s signals and give my own signals completely wrong at times.  One thing I have discovered is how precious it is to acknowledge each other’s emotions and to say it.  An example is the overwhelming emotion when I get home. Often it happens that the children just want to blow off some steam but we cannot leave them to hack each other, or me for that matter, into pieces.  We acknowledge how hard the time has been with me in hospital, the frustration, anger and the relief that I am back. Then the gentle reminder that CF is the enemy here, not me, nor their sibling. The rule of being kind and respectful towards all people is gently reinforced.

But then there are rules that will be broken! Like a Christmas bed in front of the TV, with popcorn and all the movies we can watch until we fall asleep. I make sure I lie in the middle and my body touches theirs, whether we hold hands, or cuddle cold feet together. Sometimes they will even ask me to hold them.  We talk, we play board games or cards. We just spend time together.

At times my body is in pain and I am really tired.  I have to find an acceptable way to communicate how I am feeling.  I started to use my body as a barometer to indicate how much energy I have. I could be full, half full or completely empty.  Being tired or having a bad day is not something to feel ashamed about.  With this open and honest communication, the person also has the right to say what they need to recharge their batteries.

My children are older and communication is something we really endeavoured to succeed in. How did I live with the feeling of guilt when they were babies?

I’m not perfect.  This simple truth my mother-in-law repeated more times than I can count. It helped to know that I am doing my utmost best and I can only give the whole Rida.  And luckily children are born to like their parents! (On a lighter note)

Seriously though… I did what I had to do to keep myself sane.  Motherhood is a major adjustment.  It can require you to change from a person who earned money to a wife who needs to ask her hubby money.  While you were working the interaction with like-minded people are taken for granted.  Often mothers are home alone with little to no contact with the outside world.  It gets lonely. You feel isolated. You don’t feel appreciated.

One thing that really caught me was the fact that I should feel grateful and happy every second of the day because CF sufferers don’t just have babies. But I didn’t feel that way always. And I felt guilty. And then I speak to another mother who confessed she would drive once or even twice around the block from her own house before she would enter some days – and she is a healthy mother.

I sang songs that made ME peaceful. I did not only sing baby songs. I read stories that were good for ME and made me laugh. I used my network of people as often as I could. I especially listened to the older ladies and their advice.

And I feel one of the biggest things I did right was to allow my hubby to be a parent without me hovering over him all the time. Without me telling him how to do things all the time. Without me criticising him every step of the way.

I reckon he will ask for help when he needs it. Also, he would do nothing that would harm our babies. The trust I communicated by my actions forged a whole new bond for us as well. He is an awesome parent! And our children know that their dad is my best friend. And maybe tonight I do not feel like the best mum ever, at least I can lie in his arms, ask for advice, have a good night’s rest and tomorrow I’ll be the best version of me again.

Laugh, love, live

Rida Viljoen

Rida Viljoen is a parent coach who believes parenting today leads to tomorrow’s bliss. She works with parents who want to take their parenting to the next level. With a little planning and a whole toolkit of techniques learnt early on, it can make all the difference when the teen years arrive.  The goal is to raise successful adults contributing towards the greater community in a meaningful way.

Click here to visit Rida’s Blog

Skuldgevoelens ry jou bloots – CF ma se perspektief

Skuldgevoelens ry jou bloots – CF ma se perspektief

Die dag toe my tweeling gebore was, was die dag wat ‘n nuwe vlak, vorm en diepte van liefde ook gebore was. Niemand het my voorberei hoe baie moederskap my sal verander nie. Daarmee saam het nog ‘n gevoel gekom… skuldgevoelens oor amper alles.

Dis noodsaaklik om na die bronne van die skuldgevoelens te kyk, want die skuld-emosie beïnvloed nie net my as ouer nie, maar ook my kinders. Hoeveel keer het dit al gebeur dat ek skuldig voel oor iets en dan kom hulle met onaanvaarbare gedrag weg? En net daar is waar skuld se invloed uitkring na onsekerheid, onvoorspelbaarheid en vrees in my verhouding met my kinders.

CF (sistiese fibrose) is ‘n genetiese siekte wat sy eie uitdagings bied. Soms raak ek so moeg dat ek stilweg wens ek kan hospitaal toe gaan om net ‘n bietjie te rus. EN voel ‘n ma nou skuldig as sy so voel…?  Dan op ‘n stadium is die hospitaal onafwendbaar en móét ek gaan. Hospitalisasies kan 14 tot 21 dae wees. EN voel ek dan juis skuldig omdat ek nie by my huis mense is nie…? Skuld dreineer jou, dis soos ‘n hamster op sy wieletjie. Al in die rondte, en jy kom nêrens nie.

Wat maak ek met die skuldgevoelens?

Ek het myself toestemming gegee om mens te wees. Ek mis my eie kinders se “signals” en ek stuur my eie “signals” verkeerd. Een ding wat ek wel al ontdek het, is om mekaar se emosies te erken, en hulle daarop te wys. Dis belangrik byvoorbeeld die oorweldigende gevoel wanneer ek tuis kom na ‘n lang hospitalisasie. Dit kan die tyd wees wat die kinders net stoom wil afblaas. Skielik is hulle lelik met mekaar en met my. Dit is nie aanvaarbaar nie. So hier is wat ek eerder doen wanneer die situasie homself voor doen. Erken die emosie van frustrasie, haat, en/of kwaad teenoor CF en nie teenoor ‘n persoon nie. Ek herinner hulle dat ons nie mekaar mag verniel omdat ons so voel nie. ‘n Lang vet drukkie, ‘n koppie tee wat mamma maak en dan is daar reëls wat aanvaarbaar is om te breek byvoorbeeld ‘n krismis bed te maak voor die TV, met popcorn en fliek tot ons oë toeval!

Gesels, wees bymekaar, spandeer tyd deur kaarte of ‘n bordspeletjie te speel. So kan ek ook nie dat my eie moegheid en ‘n lyf wat nie meer wil vorentoe party dae die oorsaak wees dat ek sommer misluk is met almal nie. Dit maak ‘n verskil om openlik daaroor te gesels. Ons gebruik ons lywe as barometers om te demonstreer hoeveel energie ons het. Is ek met ander woorde vol, half vol of dolleeg? Want om moeg te wees is nie ‘n skande nie. Daarmee saam het ons toestemming om vir die ander in die huisgesin te sê wat jy nodig het om jou batterye te “charge”.

My kinders is ouer en ons kan openlik nou kommunikeer. Hoe het ek met skuldgevoelens geleef toe hulle babas was?

Ek is nie perfek nie. Hierdie eenvoudige waarheid het my skoonma telkemale vir my herhaal. Dit het baie gehelp om te weet ek doen my uiterse beste en ek kan nie meer gee as die hele Rida nie. Gelukkig is kinders geprogrammeer om van hulle ouers te hou! (Dankie tog!) (Op ‘n ligter noot)

Ernstig nou, doen wat jy moet doen om kop te hou. Dis oorweldigend om te verander van ‘n persoon wat ‘n salaris verdien na iemand wat nou afhanklik moet wees van haar man vir geld. Terwyl jy gewerk het, het jy ander mense gesien en gesels. Nou skielik is daardie interaksie baie min of vir sommige geen. Skielik voel jy nie meer waardeer nie.

Wat vir my baie erg was, was die wete dat moederskap ‘n voorreg vir my moet wees, want CF-leiers raak nie sommer swanger nie. En ek het nie elke dag gevoel asof dit so ‘n voorreg is nie. ‘n Ma het eenkeer erken dat sy soms ‘n tweede of derde keer om die blok ry voordat sy in ry by haar huis, want sy sien net nie kans om dadelik huis toe te gaan nie. Ek het liedjies gehad wat MY rustig laat voel het. Ek het nie net baba liedjies gesing vir my kinders nie. Ek het stories gelees vir hulle wat goed was vir MY. Ek het my netwerk mense gebruik soveel as wat ek kon. Ek het veral na die ouer garde geluister met hulle raad oor hoe om babas groot te maak.

Een ding wat ek wel voel ek het honderd persent reg gedoen, is my man ‘n plek gegee om heeltemal pa te wees, sonder dat ek die heeltyd hom vertel het hoe om dit te doen of wat hy verkeerd doen. Ek het gereken hy sal vra vir hulp as hy dit nodig het. Ons vrouens moet versigtig wees dat ons nie die mans uitskop wanneer die babas kom nie. Jou baba gaan grootword en dan is dit jou man wat oorbly… Die vertroue wat ek vir hom gekommunikeer het deur hom toe te laat elke stap van kinders grootmaak, het ons twee gesmee as ‘n span wat die wêreld kan aanpak. My kinders weet hulle pappa is my beste vriend. En al voel ek nie vanaand soos ‘n “great” ma met groot sukses nie, kan ek in sy arms lê, raad vra, lekker slaap en môre weer die beste weergawe van myself wees.

Lag, wees lief en laat leef

Rida Viljoen

Rida Viljoen is a parent coach who believes parenting today leads to tomorrow’s bliss. She works with parents who want to take their parenting to the next level. With a little planning and a whole toolkit of techniques learnt early on, it can make all the difference when the teen years arrive.  The goal is to raise successful adults contributing towards the greater community in a meaningful way.

Click here to visit Rida’s Blog

17 year old CF life during the pandemic- from a Mom’s perspective

17 year old CF life during the pandemic- from a Mom’s perspective

91 days… does not sound too long….

 

But what if you are 17 years old, very social, love life, friends and experiences… and yet, you may not have any of those.

 

So let’s let the wise people teach one life lessons.

 

Let us tack our sails, shift course, and cruise into unchartered waters, so to say. Let’s call the journey, the Sea of Viruses. 

 

Let’s map the journey….

 

The new adventure churns out lots of family time, working together, no splintering off in all directions.

Time which would otherwise have never happened in the manic world of 2020. What a blessing.

A time of closeness and slowness that makes for laughter and real appreciation of self and others.

 

No interruptions from anyone or anything – just flowing calm and genuine inner discoveries.

 

Real, very real times. No smoke and mirrors.

 

New traditions begin:

Darts evening, music appreciation of all genres and generations.

Hilarious learning to waltz lessons, filling muffin trays with new recipes. 

Trying to count the birds and butterflies who fly around in their thousands, as the earth is quiet and theirs, whilst the humans stay home and indoors. 

Lazily lying on your back, gazing at the clear air and gleaming clouds, whilst soaking up the sun and just being….. just breathing…..

All the while, falling deeper into the gentle slow pace of nature – where we belong.

 

In fact we are a critical part of nature.  

 

Thoughts drift off and recircle, and debates begin.

Acknowledgements conclude that we are not some demi -god more powerful than nature, but we are part of the ecological chain. 

We house viruses, bacteria’s, fungi, moulds. 

Our bodies house nature and we are the link that continues nature and this beautiful world we live in.

 

Listening becomes more acute, listening to the soul of another human. Their pure thoughts and personality.

 

Then…

Discipline becomes a front runner with online schooling, 

Learning new skills for a new type of learning.

Creating new school traditions, connections and fun with friends and teachers…. from a distance.

 

Parents watch with pride as new work ethics evolve.

Self-starter, diligence, accomplishment in the “new normal”.

 

Coffee breaks, meal breaks, quick friend laugh breaks.

Funny meme breaks.

From a distance it is reminiscent of being an adult in a workplace.

 

This is a new experience, managed and navigated with such maturity with such willing, bravery, and yet a low-grade palpable loss of what was.

 

However, the allure of the new experience wanes as it is accomplished, and revisited daily.

The need for social same age personal touch and connectivity becomes a priority.

Enough of chatting on the Zooms, Whatsapps, video calls etc.

 

I need my clan. 

I need to sit and laugh. 

Walk and talk. 

Eat and sing with my clan.

My age group. My same age family.

I need to touch and feel and connect.

 

So we must breathe deep into our parental courage of the oneness and genuine experience of self in the past 91 days and create the platform to ready her for this interaction, and let the 17 year old out of her protective physical and psychological surrounds and call in her clan to come and sit and laugh with her. To walk and talk with her. To eat and sing with her. We must carefully open the door to her needs and let life come back in for her, even just for a day.

 

Nervous parents hang back, witnessing pulsating excitement trickling out of the 17 year old who is finally allowed to melt back into her place in her same age clan. 

To talk their talk, to experience their experience, to laugh their laugh, to dance their dance.  

 

Watching from a protective distance, the trust in nature must be foremost. This is her life, her needs, and most importantly, her happiness.   

 

She must sparkle again it is her turn. Thrive my baby thrive, we’ve got you. You deserve this.

 

As the happy social gathering ends, night falls. Satisfied and happy heads hit pillows. 

 

The last thought before drifting off to dreamland, is a peaceful, “Thereby the Grace of God go I, what will be will be”.

 

Good night, sleep tight.

Written by one of our CF Moms who wishes to remain anonymous

 

Nutrition in CF- Maintaining weight and diet tips for CFRD

Nutrition in CF- Maintaining weight and diet tips for CFRD

Eating well, and maintaining a healthy body weight are vital for individuals with Cystic Fibrosis (CF). A good nutritional status has been directly linked to improved lung function, reduced chest infections and ultimately, improved survival rates. However, as many CF patients and their families will know- this task may prove much more difficult than expected.

CF patients experience many limitations which make maintaining a healthy weight difficult, and even in the case of a normal weight, patients may not be eating the correct foods to optimize their nutritional status and overall health. In the case of children, this is particularly problematic as the lack of adequate nutrition may compromise normal growth and development. Nutritional needs of individuals will vary according to age, weight, height, symptoms, lung function and activity level. It is therefore important for CF patients to seek professional advice from a Dietitian who, along with the medical team, will advise the patient on their individual requirements, and work with the patient to deliver practical recommendations, ensuring they are eating what their body needs to stay healthy and strong.

Lets have a closer look at how CF affects the nutritional status of patients.

Undernutrition is a frequent feature of CF, and results from a combination of conditions that increase energy losses, increase energy needs, and lead to inadequate nutrient intake.

  1. Increased energy losses
  • Many CF patients have inadequate levels of digestive enzymes due to pancreatic insufficiency. This leads to impaired absorption of nutrients, especially fat.
  • Other digestive abnormalities which CF patients experience contribute to energy loss. These include intestinal inflammation, impaired insulin secretion and insulin resistance (CF-related Diabetes) as well as liver disease associated with CF.
  • Increased energy needs.
  • Energy needs are higher in people with CF in comparison with the needs of other individuals. This is due to ongoing lung inflammation and infections associated with CF.

2. Inadequate nutrient intake.

  • People with CF, especially children and adolescents, are often unable to consume sufficient energy to overcome energy shortfalls.
  • Psychosocial issues, such as stress and treatment noncompliance, may contribute to energy shortfalls.
  • Gastrointestinal discomfort including reflux, and constipation, as well as side effects of medication can also decrease appetite, and lead to decreased energy intake.

3. Vitamin and Mineral Deficiency.

  • Decreased fat absorption resulting from pancreatic insufficiency can cause people with CF to become deficient in vitamins which require fat for absorption and transport in the body. These include vitamin A, vitamin E, vitamin D and vitamin K.
  • Without adequate sun exposure, CF patients are also at risk of becoming vitamin D deficient.
  • Patients with CF may have higher requirements for salt, calcium, iron, zinc, and selenium. This is linked to the increased sweating, malabsorption, and chronic inflammation associated with CF.

Here are a few top tips for increasing energy intake and meeting calorie requirements:

  1. Aim to consume five to six smaller meals spaced throughout the day rather than three larger meals.
    • Regular meals and snacks improve energy intake in patients struggling with poor appetite.
  2. Meals and snacks should be appetizing in appearance and taste.
    • This has been shown to improve energy intake, particularly in children.
  3. Household ingredients which are high in energy and protein should be added to meals and snacks to increase the energy and protein content without increasing the bulk of the meal.
    • Examples include adding vegetable oil, peanut butter, eggs, or dry milk powder to porridge, soups, gravies, casseroles or milk based drinks.
  4. At least 2 portions of milk or yogurt should be consumed daily to ensure adequate intakes of energy, protein, vitamin D and calcium.
    • Full cream dairy can be consumed to increase calorie intake.
  5. Make use of a suitable nutrition supplement which is high in energy, protein, vitamins and minerals to complement the diet where necessary.
    • Consult your Dietitian or Medical Doctor, for advice on suitable options.

CF and Diabetes

 

As mentioned above, many CF patients develop pancreatic insufficiency and CF related Diabetes. This creates a further challenge in that in addition to needing to consume sufficient calories to meet requirements, these individuals need to ensure that they are consuming the right amount, and type of food to control their blood sugar levels, preventing rapid increases and decreases that correspond with sugar highs and lows.

 

Here are a few top tips for maintaining constant blood sugar levels:

 

  1. Aim to consume 5 – 6 small meals throughout the day.
    • This will ensure that blood sugar levels are kept constant by preventing both overeating at meals, as well as sugar lows between meals.
  2. Carbohydrate-containing foods do not need to be avoided completely!
    • Carbohydrates are an important source of fibre, and several vitamins and minerals.
    • The type and amount of carbohydrates is what is important.
  3. Choose wholegrain carbohydrates.
    • These are high in fibre, which slows the digestion and therefore release of sugar into the blood stream.
    • Examples include whole-wheat bread and pasta, brown rice, oats, quinoa, bulgur wheat and buckwheat.
  4. Replace refined carbohydrates with high fibre alternatives.
    • These include legumes (beans, lentils, split peas, chickpeas) and starchy vegetables (butternut, potato, sweet potato, corn).
  5. Carbohydrates should be split up in meals and snacks throughout the day.
  6. Carbohydrate portions should be controlled- eat one portion of carbohydrates at a time.
    • A rule of thumb for carbohydrate portions is that the carbohydrate on your plate should be about as big as the size of a clenched fist.
    • Some examples include:
      • ½ cup cooked pasta/rice/porridge
      • ½ cup cooked starchy vegetables (potato, sweet potato, corn, peas).
      • 1 medium fruit
      • 1 slice of bread
  1. Eat carbohydrate containing foods with foods high in protein or fat.
    • Eating carbohydrate in combination with protein and fat slows digestion, preventing blood sugar spikes after a meal, keeping sugar levels more constant.
    • Examples include yoghurt with a handful of nuts or seeds, or apple slices with peanut butter.

 

By Jay Hamaan (read more info about her in the blog)

What is the Cystic Fibrosis New Frontiers Committee?

What is the Cystic Fibrosis New Frontiers Committee?

The life expectancy of patients with cystic fibrosis (“CF”) has increased substantially over the past 20 years – this has been primarily due to successes in coordinated delivery of care, and advances in CF treatment.

This treatment, however, only focuses on reducing symptoms and managing complications. Consequently, while supportive care has improved the prognosis for patients, the treatments have not addressed the underlying cause of CF – however, this has now changed.

Recently-introduced agents now directly target the CFTR protein. These drugs are called CFTR modulator drugs. Access to these drugs, however, is limited for most patients due to the high cost.

The Cystic Fibrosis New Frontiers Committee (“CFNFC”) was established on 20 February 2020 as a sub-committee of the South African Cystic Fibrosis Association (“SACFA”).  By uniting the efforts of all interested parties, including CF family members and medical specialists, the CF New Frontiers Committee seeks to develop and implement a strategy which will provide affordable access to these life-changing treatments for all CF patients.

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