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"My Ferrari in a box"

The latest x-ray after Adele's most recent operation. "You can see the old wires and the new ones. There is a pigs tail lead which broke off a long time ago too."

Adele’s heart defect journey has been anything but smooth sailing. She was diagnosed with complete AV block, with a systolic murmur and her heart rate never exceeded 48 beats per minute. For her entire childhood and the teenage years of her life, she was at check-ups every three to six months until her first operation four months before her 19thbirthday. “My doctor decided that I would benefit for a pacemaker,” shares Adele, “back then, doctors and surgeons did not disclose much about your condition or operation and at that age I was intimated by them so never asked any questions”. One of Adele’s four sisters named her pacemaker ‘Big Ben’, “who just keeps ticking along” and it was ‘Big Ben’ that was the cause of a series of unimaginable events that left her feeling disillusioned by the medical field. Her heart started to miss beats, her limbs felt heavy and her mouth would dry out completely. Adele was constantly operated on so that her pacemaker could be repositioned and at one time, it was even removed completely due to a severe skin infection which threatened the heart with infection too. It all came to a head when in 1994, a technician checking Adele’s pacemaker informed her that “inferior quality leads were used on you and there is a wire broken off in your heart”. “I remember the exact spot that we were travelling on the highway that moment and I will never forget his words." Adele recently underwent a box change with the Maboneng Heart and Lung Institute and shares a small snippet of the later part of her heart warrior journey in her own words below: I had had 27 operations before I met cardiologist, Dr.Thornton, at Netcare Sunninghill Hospital. These included box changes and re-siting the pacemaker because it went walkabout or was wearing through my skin. It was such a good experience to meet a Doctor who actually took time to tell you what he thought and told you what he was checking when he tested the pacemaker. Dr. Thornton did my box change in January 2013. A few months later I went back into surgery due to the skin sporting some red streaks near the scar. My medical team were not sure what to expect when they did the first incision and they had draped everything possible in the theatre so as not to get anything on it, should there be some fluid that came out. My pacemaker box was washed, cleaned and put back. I went onto antibiotics for a while and we kept an eye on it. I eventually went on three courses of antibiotics until Dr. Thornton suggested that we leave it and see how it goes. The next step was open heart surgery, to clear this all out and then to put the box back in my abdomen. My veins were so damaged and blocked from all the wires, which left him little options. It all came to a head one Saturday morning as I was in the shower. The skin had turned dark, thin, dry and papery. You could see the fluid under the skin. It popped open as I was drying myself after a shower. I called Dr. Thornton and I met him at Sunninghill, where I went into isolation in ICU. The Maboneng Heart and Lung Institute came to see me to discuss the operation and my husband happened to be there at the time. They explained to us what they were going to do and even drew pictures to show us. This was a first for me! As usual, I was worried about the stress that I was putting my husband and my family through. My sister was crying, my husband stressed out and here I was comforting them.

Adele with her husband.

I was operated on on the Monday. I recall waking up afterwards and to my left was this tiny baby, laying on what looked like a raised pedestal. This tiny baby, who had had surgery was reaching his arms out, moving them in the air. I noticed Dr. Schürmann standing next to him and I was amazed that such a big man, could have the patience, skill and steadiness to operate on such a tiny baby. I stayed in ICU for a week or so and I was then transferred to the ward. The next day, I found that I had to lean against the wall when going to the bathroom and on the way back because I was so out of breath and my body felt like it was filled with lead. I thought that this is part of the deal. I had had major surgery and I was older, so I would not bounce back like you used to. I did not expect there to be anything wrong. The next morning, Dr. Thornton rushed in and pushed my bed through to the ICU, because the staff had called him right after they did their morning observations. I cannot recall what went wrong. I spent a few days there again before going home. The staff in the ICU were magnificent and spending so much time there, you get used to them and you chat to one another. I wrote this piece one day, after feeling like I was turning a corner after this surgery that had knocked the wind right out of my sails. I felt so alive and thankful when I washed out a few cups and I was really smiling while doing so. That night, I insisted on making an easy dinner, nothing exciting, but I was here and I was able to do so.

Looking in the mirror and seeing the Adele I know starting to stare back at me fills me with so much encouragement… she has light in those brown eyes again… yes, everything is going to be all right. I thank God for my little string of faith that I managed to cling to in that dark period and for His mercy and Grace. It is now 2022 and we are dragging out the replacement of my box as far as we can, with it being just on 7 years old. It is the first week in August and there is about 3 weeks before the box change. It’s tax year end and half year reporting at work, so I told Dr. Thornton, for once, I want to plan when this happens so that it’s not always some emergency. He had Liesl call me from Maboneng to set up a date. What a breath of fresh air and she has the smile in her voice as well as a professional manner, but with the gentleness needed, when dealing with patients and their families. We discussed dates and I mentioned that I did not want to go into theatre late in the afternoon, laying there stressing all day. Liesl suggested the day which worked perfectly for me. Everything was sent to me via email in no time at all so that I could obtain authorization from my medical aid. The online admission was user friendly and quick, which meant that the morning that I arrived at the hospital, it took all of 4 minutes and I was on my way to the ward. The staff were friendly and everyone that came into the ward greeted the patients. It was so sweet that the social worker popped in to see me before I went to theatre. What a bundle of positivity, energy and smiles. I was happy to see that I had the same anesthetist that I had in 2015. The staff in the theatre were chatting away and joking, which kept me from getting anxious. They drew me into their conversations, while they were getting me hooked up to their machines and the next thing, I woke up. The anesthetist had, as I requested, given me something for nausea before I came back to the ward, with anesthetic having a nasty side effect on me. I managed to enjoy some lunch, which was very welcome after not eating for some time. Dr Schürmann popped around and checked how I was feeling and said that I could go home only two hours after my operation. This was a walk in the park. Being in hospital for two weeks or more, you become institutionalized. You wake up at a certain time for the bath routine, there is the meds routine, there is a routine for your meals and there is no outside noise. I could not be near a TV, or visit a shopping mall for a long time, with it feeling as if the noise penetrated every fiber in my body. The difficult part, of this journey, was being told, by friends and colleagues, that you were being used as a guinea Pig and when they hear that you are going into hospital, they reacted negatively. I withdrew and never told anybody how I feel. Also, not being believed by the doctors that something was wrong, has affected me in that to this day, it takes a lot of courage for me to go to the Doctor. I get anxious when I go for my check up at Dr. Thornton and I wonder if that feeling will ever go away. I remember many of the surgeries, but not the pain and suffering, because the Good always outweighs the Bad. The good being: while bored in hospital when I was there for a month, I packed sterile swabs and dressings in the theatre, sealing the packs with a heated guillotine. I made Christmas decorations with the night staff nursing sisters, using coloured paper. I enjoyed hamburgers at midnight with the night staff. Made a bubble bath using my shampoo for a patient who had been very ill and was allowed to bath for the first time in a while and seeing the delight in her eyes, when she saw what was waiting for her. I have met wonderful people, who were patients when I was in hospital, gifted surgeons, dedicated nursing staff, who are passionate about what they do, porters who make you laugh as they wheel you to theatre, the tea lady, who slips you that extra biscuit to go with your cuppa and the list of good, goes on. The good is that I bounced back every time. Sure it may take me a while longer, as I get older, but bounce back I will! The Good in this Ferrari in a box is that it has given me quality of life, allowed me to dream, given me the energy to clean my home, do gardening, paint walls, go for a 12km walk on the beach, climb the hills in Clarens, walk for kilometers when exploring a new city, right down to the quiet things in life, like reading a book and spending time with people that are dear to me. Without this Box, my life and probably the length of it, would be very different. I can do all…through Christ, who strengthens me.

Adele recently went for a check-up with Dr. Thornton which went well. She will see him again in six months to ensure all is settled.


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