Today I went to the dentist as the hygienist thought I had a cracked tooth. When the dentist examined me, she couldn’t find anything wrong. This pleased me immensely as I was waiting for her to say “you need a crown” or a “root canal”. One less bit of torture. Yay…good day.
I also enquired about the dental review and made an appointment for that.
Later on I received a call from The Royal Brompton. It was one of the surgeons from when I had my procedure 2 years ago.
Two years ago, I had two procedures at the same time. I had a transesophageal echocardiogram (TOE) and a Catheter procedure in which they put a catheter in via my groin all the way up to my heart. The TOE procedure involves placing a tube with a camera down my throat, into my stomach. They did warn me that this could cause damage, and to be honest, my throat did feel damaged afterwards. When I fall asleep, it makes like a really croaky snoring noise. I’m sure I wasn’t like that before.
The point of these two procedures was to discover more insight into where the hole was situated exactly in my heart. As the hole is in an awkward place, they thought the Toe and Catheter procedure combined would be able to provide some detailed data about the hole.
Anyway, not to go off on a tangent, the surgeon who was involved in that procedure phoned me today, informing me about a Scientific Publication they are making about me due to the “location of the hole and the anatomy which is uncommon”. She was phoning to request my permission. I agreed.
Join me as I document my difficult road to heart surgery as I take it day by day.
Firstly I will introduce myself ‘S’ as I am not ready to dispel my rights to privacy just yet. I am a 44 year old female from London.
As a 2 year old child I had open heart surgery for ‘ventricle septum defect’. I don’t remember much from this experience (which is probably a good thing).
Now as a 44 year old I am facing surgery again. In an attempt to gain some control and therapy from the situation I have made the decision to try and transmute the negativity from the situation into a journal to document this unique experience in an attempt to bring something positive to it.
It all began in the middle of the Covid Pandemic . Just before Covid I had been working in healthcare. It was a very physically demanding and stressful job and I began to feel very ill. I felt exhausted and I knew that something wasn’t right. Strangely enough I had this weird premonition or feeling the year before Covid which said to me “you need to get out of the care industry now”. Thank God I listened as I could have been in serious danger had I continued down that path, having to care for people who had Covid.
Somewhere towards the end of the Covid pandemic the hospital began to conduct investigations into my situation. I had multiple tests, MRI scans, lung function tests. They couldn’t understand why my oxygen was going so low. They tested me with supplementary oxygen.
They then came back to me and informed me that I had COPD. I was shocked and distraught at this news. I had always been a smoker but never smoked like 20 a day. After more tests, they informed me I was had the “Alpha 1” gene. This diagnosis explained why I had got the disease so young. My lungs were deficient in a protein. This made me more susceptible to the disease developing at such a young age.
As the years passed, I had to try to come to terms with my new reality. I certainly feel like I cannot do the things I did before.
It was when my family wanted me to go abroad on holiday that I needed hospital clearance. It can be particularly dangerous for someone with low oxygen levels to be able to fly. I had not been abroad for nearly 10 years and could do with a decent break. After quite a while the doctors got back to me and gave me permission to take a short flight but no longer than 4 hours.
I was really pleased about this. Then, as I was chatting to the cardiologist, she threw me a curveball. She said they had been discussing my case, and the surgeon reckoned he could fix the hole in my heart again. I wasn’t expecting that. She then suggested I have my holiday and then when i get back to go and discuss it with the surgeon.
So this is where I am currently. I hadn’t heard from anyone since I got back from my holiday in May so I decided to chase the Cardiologist team to get the ball rolling.
So here we are. I am going to meet the surgeon next Monday. I am compiling a list of questions and will be documenting my thoughts and feelings.
I often wonder what I did in a past life to deserve the health problems I have in this one. I fantasize that I was some powerful witch or something, and it all backfired. I have always had a pretty good imagination. All in all, I suppose I am pretty deep in that way. Sometimes I feel so angry, and at other times I feel completely isolated, as if no one will ever truly understand me. Sometimes I look at others’ seemingly perfect lives and feel bitter and jealous.
Aside from the monster I have always felt like anyway, what kind of monster will I be after this next surgery? I almost feel like Frankenstein sometimes. Like some Gineau Pig or toy for medical professionals to play with and prod.
No one ever talks about the invasive side of open heart surgery. It’s almost like being raped or something. An external entity entering your body that you don’t really want. Then you have the ‘shame’. The shame, the embarrassment of putting your trust in others you don’t know to fix you.
Sometimes I feel that I don’t have the energy or will to go through this. I would rather just go somewhere and die. There are no guarantees that it will even work anyway.
sindypiper8 