Hi there, I’m Cathy and I have #CysticFibrosis (CF). I was only diagnosed at the age of 12 years old. This diagnosis occurred only after a long and misleading search by my mother; who was adamant to find out what was wrong with me. I was hospitalized at certain points but they never managed to correctly identify the cause of my respiratory problems.
I would describe CF as a degenerative genetic disease characterized by frequent debilitating #lunginfections, and loss of function. The medical description is much more comprehensive but this describes the course of my disease.
I’m now 45 years old. That’s a little older than one would expect for a CF patient as the life expectancy is currently 37.5 years, with apparently only 5% of all patients being above the age of 40. However, when I was diagnosed the life expectancy was 16 years old.
I had a close-to-normal childhood. My father decided that not only would he do daily chest physiotherapy, but also that I should get as much cardiovascular exercise as possible. So I rode my bicycle to school regardless of the weather, I played hockey (albeit badly), I swam, I played squash and rode horses. I was extremely active every single day and I like to think that what I lacked in physical skill and ability I made up for in enthusiasm.
My mother also embarked on a health food drive and I was exhorted to consume what seemed like huge amounts of calories and supplements.
But, as is normal with the progression of CF, at some point it takes its toll, and I started to deteriorate in my late 20’s. I developed CF-related Diabetes, which is normal for CF, adding to the difficulty of managing infections and sugars at the same time.
I developed an unusual and lifelong respiratory tract infection with Multi-resistant Staphylococcus (MRSA), which proved a real challenge to manage and treat as it just never goes away (especially when one has Diabetes). Its one of those ‘superbugs’ you hear so much about in the news these days. I still have that superbug today and although it can be treated, in compromised patients like myself it not likely to ever go away.
One of the continuous side effects was severe fever. I suffered from intermittent and swinging fevers since the age of about 24 years old. And severe bouts of #pneumonia. I deteriorated sharply around my 40 year landmark, with increasingly frequent hospitalizations and intravenous IV therapy every few months, which progressed to every few weeks.
I was at the point where we were doing constant antibiotics, oxygen, and 3+ hours of physiotherapy and nebulising a day. Life was still busy and demanding, as it always is, but I was finding it increasingly difficult to function with any real degree of competence. We all knew I didn’t have much longer before a horrible pneumonia would overcome my lungs.
As a last resort my pulmonologist in Cape Town referred me for Transplant Assessment at Milpark Hospital in Johannesburg. After a comprehensive work-up I was listed as a candidate but told that the average waiting period is 1.5 years. I really didn’t think I had that long, but I knew nothing was in my hands. If God chose to grant me extra time, I would be extremely grateful.
Four months later I received that life-changing and most unexpected call (on a Tuesday) for a bilateral lung transplant. It was actually less than 4 months. I think I’ve been one of the shortest, if not THE shortest waiting-for-lungs transplant in South Africa.
The transplant experience and all the surrounding dramas and delights is a story too long for this page. I’ve taken a long time to adjust to my new normal, as there have been some inevitable hiccups along the way. I’m now approaching two years post-transplant. I’m a transformed person with incredible lung capacity, and a new life. I live with my husband Viv in the beautiful Franschhoek winelands, where daily I get to appreciate the beauty of our environment.
We’ve resolved to live life a little differently – trying to stop and appreciate every new moment of our lives, lest it rush past unappreciated! And last year we founded our second jewellery business with renewed and focussed enthusiasm. We’ve named it TUESDAY Jewellery, and we’re designing and manufacturing jewellery for celebration and commemoration. It’s ‘Jewellery for everybody’s story’. You can visit our Facebook page here.
My story to this point has evolved in the most unexpected way. I could never have predicted it if I’d tried, but I hope it can provide some encouragement to others. We can all have hope, despite current circumstances and all evidence to the contrary. One just never knows what lies ahead for any of us.