Beautiful farewell letter by a very special Doctor

Beautiful farewell letter by a very special Doctor

My story – Dr Sue Klugman

I joined the paediatric CYSTIC FIBROSIS clinic in 1989 as a very part time job, for four hours a week ,when the clinic was short staffed and needed an extra pair of hands. The whole field was new, strange and overwhelming  to me. When Dr Richard left to go into private practice he asked me to head the clinic up.
What started as a four hour a week clinic soon became a very full time job, and not only did it occupy my work life but it began to infiltrate my home life and that of my family, who all involved themselves in one way or another.

It did not take long to realise that our dear little ‘charges’, born with a condition that was here for life, deserved better services than the four hours a week that were on offer. Ward 284 somehow became “claimed as ours”  and the local CF Association kindly renovated for us and our “NEW HOME” in Ward 284 was born.
.I wanted to be more available to the patients, have  more frequent contact, be more available after hours and on weekends, and be at the other end of the telephone should issues queries or problems arise between monthly visits and between Tuesday clinic visits.

I wanted our ward to be a welcoming, friendly, nurturing  place – a ‘home away from home’ where  our hospitalised patients and their families could escape for some quiet time and a place to relax. A place where the outpatients would feel fully comfortable.

The pharmacy and additional help

At one stage we even had our own pharmacy at the clinic which made the whole experience so much more pleasant and ‘patient friendly’ , BUT this service unfortunately ended once the CMJAH pharmacy services were forced to consolidated.

The CF Association kindly pays for a  private social worker to attend our weekly clinics in order to offer consistent psycho-social care to our dear families. Thank you to SARIT SIFRIS for her superb service and giving of herself so selflessly and with such passion. With time a private dietician was employed to make consistent dietary input more accessible-someone with whom our families could create trust, a rapport and a mutual understanding of the dietary needs and financial constraints of the individual families. Thank you  FAZANA  KADER for your ongoing input and commitment.

The Spaza store

Realising that  good nutrition is so essential  in CF care,we  saw the need for a ‘spaza store ‘ in our ward . It is the most unique spaza store in the world! One where  the only payment expected in exchange for wholesome protein rich foodstuffs, plus some staple foods, is attendance at the monthly  clinic. We hope that these small monthly packages help in some  small way with the nutritional needs of our dear little people and also give a message of love to them, and help them to realise  that we care as much about them as  people, as we do about their medical issues.

The concept of the spaza store fills many peoples hearts and the food thankfully keeps coming in from various and often unexpected sources. Much thanks and deep appreciation goes to DISCHEM pharmacy who provide us with monthly donations of PEDIASURE and ENSURE, which supplements what the hospital dietetic department is able to supply (or often does NOT supply). Thanks also goes to ABBOTT (SOLVAY) for their annual assistance with our “care packages” and for their welcome visits to the clinic when they’re able to pop in.

The Dream Room

Our most recent acquisition is the “dream room” – sponsored by “Reach for a Dream” and funded by Standard Bank”. It includes a children’s play-paradise stocked with lego, toys, puzzles, dolls a ballpond and a play station. COVID and infection control has had to limit full use of the room but hopefully very soon it will be put to better use again. What started as a job for me, rapidly became a passion and soon CF care and the CF family at large took up larger and larger chunks of my time and heart.

The clinic and patients grew from strength to strength

As time passed our staff members began attending international and local CF conferences receiving valuable input, advice and a helping hand from overseas experts and our services and knowledge expanded to become a clinic of “excellence” on par (in my biased opinion ) with many of the acclaimed international clinics .

Our patients fortunately became older and were no longer welcome (according to  the hospital  management) at a paediatric clinic. As a consequence an adolescent and then later an adult clinic needed to be “born” and was expertly run by DR  CATHY BAIRD and by DR LINDY GOUWS, both of whom offered superb service to our adult patients.
Thankfully the adult clinic is now larger than the “mother” paediatric clinic. To me this signifies major progress and major advances in our understanding and management of the condition. It is so heartwarming that the necessity for this clinic arose and that so many of our patients are reaching adulthood today.
It has been my absolute pleasure and privilege to witness and experience these monumental and historical changes and to have been part of the process.

To all my patients

It has been my honour to see so  many of my former patients reaching adulthood and living fulfilled, productive and full lives. It has been my delight to become the ‘grandmother’ on multiple occasions to newborn babies born to my former patients or to be called in to check these babies postnatally.

It is heart warming when my former patients pop in to our clinic on their own clinic days or whilst hospitalised just “to say hello” or to catch up or to let us know how they are doing, and when they send graduation photographs or a wedding invitation. It has been historic and enlightening to see how with time we have realised that our entire rainbow nation is affected by the condition, which in earlier years was thought to only affect caucasians. It  has been a challenge to teach our students and junior staff that all who cough and struggle to gain weight do NOT necessarily have tuberculosis or HIV, but to think wider and to include CF as a consideration in the diagnostic work up. My admiration for all of you is immeasurable. You are all brave and heroic warriors, facing each new day with courage and determination.

It has been my pleasure and privilege to work with, and learn from each one of you, and I have learned huge lessons on how to confront life’s challenges and adversities and how to succeed at it. THANK YOU  to each one of you for what you have given me and for the life -lessons that you have taught me. EACH one of you has taught me something valuable.

And to those reading the magazine with whom we have not succeeded in  “winning the war” I salute each of you for your bravery and the the “battle “that you all fought so courageously. I think of all of you and your precious families so often. I will never forget you and your children and your presence is ingrained in mine for eternity.

Wishing you all luck and the best of health for the future.

I will miss each one of you.

To those I worked with

My thanks also goes to PROF WHITE,DR WEIL and DR HYSLOP, with whom I have worked as a close family for the last 15 years and welcome to DR RIAZ KHAN  who has recently joined our team. Wishing you many happy years in our wonderful clinic. I hope that you feel as excited by the clinic as i was when I first joined the team.

And of course to DRs EVERLENE KEGODO and SAM OTIDO, our visiting pulmonology fellows from UGANDA. Hopefully you can take what you have learned back home with you where you will both open successful CF clinics and be able to help many many people; some who at present are undiagnosed and not yet recognised as having the condition.

How can I not mention KHUMO and her amazing team of physiotherapists, who can rescue the tiniest piece of stubborn thick mucus from the furthest and deepest parts of the lung, and who have relieved and saved many “drowning” children by mobilising their secretions.

And KUDOs to  our dedicated  team of nursing staff, headed by SISTER EMILY RAKOSA who so readily and lovingly give of themselves so fully, lovingly  and willingly to each of our patients.

To SACFA

LASTLY thank you to Mr Alan Dunn and SACFA for your support over the years.

I leave with a real sense of fulfilment and satisfaction at what our multi-disciplinary team have achieved over the years.
From the four hours a week clinic to what it is now, a 24/7 facility, 365 days of the year. In my humble opinion, a service of excellence (and the most well run and loving clinic in the hospital)

I leave all of you with all my blessings.

Dr Sue Klugman

 

Extreme Cyclist with CF attempts a CF Everesting record!

Extreme Cyclist with CF attempts a CF Everesting record!

Jason van’t Slot, a Cystic Fibrosis warrior, extreme cyclist and professional public speaker, will be attempting to break a CF record for his Everesting attempt, while also creating awareness and raising funds for CF.

FIENDISHLY SIMPLE, YET BRUTALLY HARD. EVERESTING IS THE MOST DIFFICULT CLIMBING CHALLENGE IN THE WORLD.”

What is Everesting?

The concept of Everesting is fiendishly simple: Pick any hill, anywhere in the world and cycle repeats of it in a single activity until you climb 8,848m – the equivalent height of Mt Everest.

Everest isn’t a number, it’s a symbol. It’s a symbol for something momentous and stupendous in your life. It’s a symbol representing a long term goal, something to strive toward, something to conquer. It’s a symbol for supporting a charity, a friend, a crew member. It’s a symbol that pulls together a community, draws in bemused onlookers and speaks to the magnitude of a challenge to people outside of our sport.

Whether you are climbing toward a historic measurement – or an updated number that has moved a few inches (8848.86m) – the goal remains the same; take on a big challenge in life, and fight like hell.

Why is this such a special event?

Jason will be the second person in the world with CF to attempt this record and will be aiming to beat it. The first CF person to complete this challenge did so only on their second attempt, after gaining access to Trikafta.

In addition to this Jason will also be raising funds to help SA Cystic Fibrosis Association (SACFA) facilitate access to life-changing drugs such as Trikafta, which are not yet available in South Africa. Trikafta is a drug which corrects the way the defective CF gene functions. It has helped CF patients to come off the transplant lists, and even helped some to breathe without oxygen for the first time, within months of starting treatment.

The funds raised will also go towards maintaining an updated South African CF registry, which provides statistical data on CF patients necessary for negotiations with Vertex Pharmaceuticals and other stakeholders, including medical aids and the South African Health Department.

How can you get involved?

Jason will be involved in a live online event with The Big Positive Guy on Thursday 11th February at 7pm where you can listen in to find out more about him and his Everesting goal! This venture is an amazing opportunity to create awareness for CF in South Africa, raise funds towards gaining access to Trikafta and maintaining the registry, as well as showing the CF community as a whole that we are capable of great things. What a great opportunity to come together as a CF community to support something truly momentous!

Click here to watch the event from 11th February 2021 to see Jason launch his speaking career and explain more about his Everesting attempt!

For more info or to donate, click here: https://www.givengain.com/cc/everest-challenge-to-breathe-life-into-cystic-fibrosis-lungs/

 

 

‘Living with cystic fibrosis challenges one daily, I believe one must rise up to these challenges, manage your approach to living with a life-threatening lung condition, breathe in life and face these challenges with your head held high and be proud of the way you lived your life. I never chose to have a life-threatening condition. But I choose to be a victor, and not a victim of the disease’ – Jason van’t Slot

 

 

Exercise tips for CF from Physiotherapist Sue Naude

Exercise tips for CF from Physiotherapist Sue Naude

As a physiotherapist with a special interest in CF and over 20 years’ experience one of the most common questions I get asked is, “What exercise should I be doing? Or what is the best exercise for my child?” This is both a simple but complex question.

My simple standard answer is always, “Whatever exercise you enjoy!” The reason behind this is quite simply, if you enjoy something you will do it and more importantly you will want to do it. Some people might love swimming while others running. I cannot tell someone who hates to run that that is what they should be doing. I know full well that it will all start with good intentions but soon fizzle out. So, rather focus on something that you love, and the rest will follow.

However, exercise in CF is not as simple as that answer. Extensive research into the effect of exercise training and physical activity in the healthy child has demonstrated physiological and quality of life benefits. Guidelines for exercise testing, prescription and training for healthy children are also well documented. However, by comparison, there is much less evidence demonstrating that children with CF achieve the same level of benefits as their healthy peers, and guidelines for exercise are still being developed. Current guidelines for the physiotherapy management of children and adults with CF suggest that regular exercise and physical activity be prescribed in conjunction with airway clearance therapy (ACT) and inhalation therapy. The rationale is that exercise may enhance sputum clearance, improve, or maintain lung function, reduce breathlessness, increase aerobic capacity, and muscle strength, improve bone health and ultimately quality of life. Regular adherence to exercise and ACT is variable in both adults and children, with time required to complete ACT, nutritional status and progression of the disease the key factors that influence exercise capacity, and willingness to participate in any form of exercise or physical activity- hence my reasoning for doing an exercise that you enjoy.

   
Endurance training has been found to be the most popular intervention and is effective at increasing lung function and improving breathlessness and quality of life, while strength training improves muscle strength and size, and weight gain. In seeing this when looking at any exercise prescription one needs to include both endurance and strength training. These should always be monitored by a professional and individualised.

Studies at Great Ormond Street Children’s hospital have shown that “Supervised and in-patient programs for children with CF produced the most improvements in exercise parameters, with less dramatic effects noted in part-supervised or unsupervised programs.” When they started their Frequent Flyer programme, which allows those that spend a fair amount of time in hospital per annum on IV’s to start exercising with a trainer at their local gym (for free) they found a 25% reduction in IV antibiotic usage, quality of life improvements and maintenance of lung function and growth (in children) Feedback from both children and parents was very encouraging, with families reporting that their children had been able to spend more time at home and school and experienced less of a dip in their general quality of health. Children reported they were now able to exercise at the same level or sometimes even higher than their peers. These programs present an interesting new model of physiotherapy care focused on incorporating structured, supervised exercise programs into children’s CF management.

In South-Africa this management of structured supervised exercise is unfortunately not free so my advice would be to see someone who has knowledge of exercise prescriptions in CF on an ad hoc basis who can help with home programmes and tailor it accordingly. This exercise prescription should incorporate three core components: exercise testing, exercise prescription and exercise training. This person is also someone who the individual will be held accountable to and therefore will hopefully stick to the programme.

So, in summary, exercise is medicine! Make it a lifelong commitment and reap the rewards!

Susan Naude

B.Sc. Physio. Pr 0089044

(With thanks to Sean Ledger, Founder of the Great Ormond Street Frequent Flyer Programme.)

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CF New Frontiers Project : Vertex Update

CF New Frontiers Project : Vertex Update

Members of the CF New Frontiers Committee (CFNFC) engaged in a meeting with representatives from Vertex Pharmaceuticals on 16 September 2020.

Representing South Africa on a national level, the CFNFC attendees consisted of doctors specializing in paediatric and adult treatment of CF, the SACFA Chairman, as well as the CFNFC Chairman.

The meeting was of an introductory nature and CFNFC attendees :

  • Conveyed our interest in obtaining Vertex treatment for all CF patients in South Africa;
  • Provided background regarding the current South African economic, healthcare and regulatory environment, in order to give Vertex a better understanding of our plight as the collective CF community;
  • Outlined progress on our comprehensive CF registry; and
  • Explained our existing infrastructure for performing clinical trials.

We are looking forward to engaging further with Vertex and other stakeholders, in the upcoming months, to forge strong relationships and work together, so that we can achieve every CF family’s goal – affordable and life-changing treatment.

Vertex were not able to commit to a timeline for access to Trikafta, but indicated that it will be a slow process.

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

Guilt ridden CF mom

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

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

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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