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