A TALE OF 2 ORGANS
Discovery, denial and acceptance of Sarcoidosis

If Carlsberg made pacemakers, they would roll out the red carpet for my ‘top of the range’ Pacemaker. It wasn’t the usual matchbox size which I had been expecting – of course it wasn’t – it was the size of a brick, complete with its own defibrillator, and called an ICD. When this bad boy is put to use it insists on its own security, paps and a free week ‘working’ in Dubai in a 6* hotel.

After my operation I was moved to a Ward where my next-door bed neighbour, Erica, quickly became a friend. Erica has pulmonary fibrosis, heart problems, diabetes and is on oxygen 24 hours a day. She is one straight talking South African who, despite everything that is thrown at her, battles on like an absolute hero. We have kept in touch and talk weekly – she calls me her Mentor but her phone is ancient, very crackly and is held together by an elastic band so she could very well be calling me a Dementor as she certainly tells me like it is! Who knows! All I know is that she gives me a much needed sense of perspective. She lives on her own and has been shielding since January 2020 because she is so vulnerable, so she hasn’t left her flat for over a year. Any time that I find myself frustrated and moaning about Covid, I only have to think of Erica stuck in for a year to shut myself right up!

Life moves in mysterious ways and I have always believed in fate and meeting people for a reason. During recovery from the operation, I also had an infection and was feeling really nauseous and very, VERY sorry for myself. Erica was also very unwell at this point and we were a very miserable pair. One late afternoon, a very glamorous blonde woman walked into our Ward looking as though she had stepped straight out of a hair salon and introduced herself as Sharon from Kent. She was like a ray of golden sunshine, smiling and chatting to us. She received a warm welcome from the Dr’s and nurses and was obviously a regular patient.

Sharon asked me to tell her why I was a patient, so I shuffled over to her bed to tell her my story and I told her tearfully about the ICD and how I could feel one of the edges of the ICD through my skin and I had a two inch scar – which I dramatically showed her. I then asked Sharon why she was being admitted. It turns out she has been a regular visitor to the Royal Brompton for 60 years as she was born with a serious heart problem and has survived 5 decades more than was first expected. The day before she had received her second mechanical heart and had come in now as she thought it might be infected. She showed me her chest, the severe bruising, huge wound and how the mechanical heart stands proud by several inches out of the chest and how she can hear it ticking constantly, making it difficult to sleep. This completely floored me. I rushed to apologise for moaning about my insignificant scar. Sharon had been told that this was the last treatment they could give her as they had exhausted all avenues so, if this failed, that would be it. You would think that would have been the biggest of blows but no, Sharon was so grateful to have lived to 60 when she wasn’t expected to, grateful to have had children which they had advised against because of the risks and now to be enjoying her grandchildren. In her words, anything extra from now on was a bonus. Wow! I can tell you that any thoughts I had about feeling sorry for myself with the pacemaker literally vanished from that day on – I had absolutely nothing to moan about. When Sharon left, the next morning and wished me and Erica well, we couldn’t stop talking about how positive and wonderful she was.

Of course, it wasn’t just Sharon and Erica that helped me – I wouldn’t have got through this without my TRULY wonderful family and friends who supported us through this with so much kindness and lots of practical help too. They also made me laugh frequently, and sometimes unintentionally. One of my closest friends Lynda is well known for being accident prone, but I think even my husband Dick was a little taken aback when he sent her a text pouring his heart out and asking her to pray for me as he was scared, and she replied with no words but just the unicorn emoji by mistake. Even worse, the unicorn was sticking its tongue out. It still makes me laugh today.

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