Helping Cathy Breathe Better
January 26, 2014
To me this is the most heart-warming LifeNets story of 2013.
Cathy Botha who lives with her husband Vivien in Cape Town South Africa has suffered much of her life with Cystic Fibrosis. Difficult breathing is the most serious symptom. It results from frequent lung infections. Cathy had been hospitalized from time to time when symptoms would become severe. This had increased in late 2012 and through her family and friends I heard about her being in and out of the hospital.
I traveled to Cape Town in January 2013 (see my TravelPod blog) and had the opportunity to visit her. I had never met her before. She is a person a kind and gentle spirit. I was very touched by Cathy in a number of ways.
She was in bed deciding whether to again go to the hospital. I did not hear one word of complaint or regret. Her mother who was also there told me n\that Cathy's demeanor is exceptional. She had never heard Cathy say anything like, "why me?" She had accepted that this was her cross to bear.
While at their home Vivien administered a physio treatment on her to dislodge sticky mucus. This he does at least once a day. For over an hour I heard him thumping on her back to help her breathe easier. I was deeply impressed by his love and devotion to her in doing this task.
After I left I committed myself to find some way or procedure that would help her. In my ministry, I had experience with parents who had children born with this condition. I contacted Matt Fenchel, an elder in the United Church of God, who works with the hospital system in Cincinnati if through his networks some better solutions for Cathy outside of South Africa could be found. He did find specialists in Ohio who examined her medical records. However, there was no better solution in the United States than where she lived in South Africa. But, it was suggested that a phsysio vest would be helpful.
These items can be quite expensive, but we did find one, exactly the kind she needed on eBay that had hardly been used. We shipped it from Cincinnati in early June by air to Cape Town. Cathy sent us the following pictures after she got it.
June 19, 2013
Hi Vic and Bev,
This is just a short note to say my vest has arrived this evening – all in perfect order, and I’ve actually just finished using it! I did about an hour+ intermittently and it certainly is an experience. I was nervous at first but getting used to it. And I think its really going to work – I just have to practise some breathing exercises at the same time.
As you can see on the photos I was so nervous the vest wouldn’t fit as it seemed to be HUGE, but nevertheless after we tightened all the straps and started it up, it fitted perfectly.
Later she wrote:
I’ve been using it quite a bit trying different frequencies and pressures, and I think its really working so far. But time will tell what settings etc. will work best for me.
And thanks again J
Lots of love,
On August 11, 2013
Hello Victor and Bev – greetings from Johannesburg! Viv and I have just finished up a wonderful long weekend of leadership training up here in Jhb – It was just a lovely (but busy) weekend of lectures, fellowship and too much eating. We said goodbye to everyone this afternoon, but we’re still in Jhb for 2 days to see my sister and family.
This is the first time I’ve been away from the Vest since we received it J So far I’ve been absolutely religious about using it twice a day – and so far I think I’ve accumulated 65 hours of therapy. I’ve settled down into using it for a bout 1.5 hours a day now. I can really feel the difference in so many ways – e.g. I manage better through the day without becoming short of breath late in the day, because it’s so much more effective than manual physio once a day. And I think Viv and I are both starting to feel the benefits of more sleep, as I can slowly start seeing that I’m less fatigued generally.
Everyone in Jhb has commented on how well both of us look in general – so that’s some objective feedback for you!
However it has really made me think about the concept of discipline and maintaining healthy changes…. like so many things, it requires discipline and chunks of time, and sometimes I feel quite trapped in the vest as I can’t really multi-task when I’m using it. So I sometimes wish I could skip it once in a while- but there are always consequences to letting things slip (even once) so in effect my body is disciplining me every day.
Okay, I hope that gives you a good idea of how things are going with us in general. We’re sorry we won’t get to see you when you pass through here for the Feast, but God willing, maybe another time we will!
Lots of love, Cathy and Viv
From the June 2013 South Africa UCG Newsletter:
By now many have heard about Cathy's physio vest. It's a second hand electrical airway clearance system which was purchased for Cathy by LifeNets in the States and shipped over to South Africa. Cathy has always known about these systems, but the price has always made it unobtainable. As far as we know there has only been one second hand one available in the country - at the impossible price of R80 000. That's second hand. New they would be about R180 000.
And then suddenly everything changed. A second hand vest was found on eBay for just R20 000 ($2 000) - still very expensive, but considerably more affordable.
This was at the beginning of June, but it actually all started in January this year, with so much happening in between that the idea had started to lose momentum - with the death of then-president of United, Mr Dennis Luker, Mr Kubik was elected as president and there was a lot going on with Cathy and Vivien's business that left no time to pursue the idea.
But in January, Mr Kubik was down in Cape Town for a Kingdom of God seminar. Cathy was very sick at the time and he got to see the physio she needed on a daily basis. He stressed numerous times how much he'd like to help - through LifeNets - in whatever way he could. This was the start of a long process involving Mr Kubik; Monique Webster, LifeNets' South African representative; Matthew Fenchel; a doctor, Lisa Burns who Matthew works with at the Cincinnati Children's Hospital Medical Centre; Cathy's doctor; a nerve-racking trip through eBay while communicating with the seller via Vivien's sister-in-law in Texas; ordering the vest on eBay from South Africa; cancelling the order on eBay from South Africa; re-ordering the vest on eBay from Cincinnati and South Africa's notorious public holidays delaying DHL's delivery even more. But the vest finally arrived safely and it was eagerly unpacked and set up without incident - two large black pipes running from a compressor into what looks exactly like a blue life jacket.
In a nutshell, how it works is the compressor forces air through the pipes into the vest, putting pressure onto the wearer's chest; the compressor, sounding like a distant helicopter, then starts pulsating the air through the vest so that when you talk it sounds like you're driving over a cattle grid.
Dr Burns' recommendation had been for Cathy to be doing more physio every day - up to four times a day. With the vest, she is able to manage this in her own time. How effective it will be remains to be seen as Cathy settles into a new routine trying to establish what settings will be the most effective. But for now she's enjoying a wonderful blessing from the generosity and concern of others.
- compilied by Victor Kubik