sindypiper

Why I’m Featured in a Medical Publication: My Story

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.

Wow, i actually famous and quite unique!

Pre Med Nurse

Yesterday I had a call from the “pre-med” nurse. She just asked me a barrage of questions about which medications I take. Currently, I am taking Trelogy and Sertraline. Although i hate taking antidepressants, I have to admit I need them at times. I don’t take them properly and i know most doctors would moan and say, “You have to take them properly.” i don’t want to. I take them as and when i need them, which is usually around my time of the month for a few days or when i can’t deal with my dysfunctional family.

I can experience very dark depressing suicidal days. I always have and I always will.

The nurse explained that after the surgery I will not hear from the surgeon for 6 weeks, and then I will not hear from the cardiologist for 6 months.

They asked if I was scared of needles! This made me scoff. How could I be scared of needles when I’ve been a pin cushion most of my life? I have actually become very desensitized to a lot of things in life. Needles don’t bother me, however, I don’t like it when they take the blood gas. That really hurts, and sometimes you get inexperienced nurses trying to do it who aren’t very good at it. They have to stab you hard to pierce the artery to get the special blood to get your blood gas.

She then went on about getting a “dental review” as your gums have to be in a decent condition before cardiac surgery as any infection that enters the gums can go straight to the heart. I have always had to have an antibiotic an hour before any treatment.

I have the dentist on Friday as I have a cracked tooth. Hopefully its just a small cavity. Sometimes my life just seems like never-ending torture and pain. Torture from the dentist, torture from the hygienist, torture from my mental health, pain from my menstrual cycle. Does it ever end?

She mentioned about whether i had ever had a blood transfusion, which, to my knowledge, i haven’t. I will have to attend the hospital the night before the operation so that they can take blood. She also mentioned something about visitors can’t stay overnight.

I then asked her if i would need to have a catheter, to which she replied “yes”. This scares me. Just the thought of it. I also asked if they could schedule the operation so that it doesn’t coincide with the period, to which she replied, “Probably not”.

Just feels like I have a lot of battles ahead. Sometimes I feel so tired of fighting. It’s exhausting.

4th August

Today I am frustrated. I was supposed to have an appointment at St Thomas’ Hospital with the surgeon; however, when I arrived at Paddington, I received a phone call from the hospital to rearrange the appointment for 2 weeks time.

So frustrating when you get your head around something and its cancelled. I had even compiled a long list of questions:

How long will the surgery take?

How painful will the surgery be?

Have there been similar cases to mine? If so, what happened?

How long will i need to take off work?

How much will it improve my quality of life?

Why can’t you do keyhole surgery on me like in America?

What complications could i have?

Why didn’t the surgery work when I was 3 years old?

How will you be sewing me up inside?

How will you get to the hole in my heart?

How will this affect my menopause?

Will i need any further surgeries?

How traumatic will it be as an adult?

What if I’m in agony will you give me strong painkillers?

Will I be able to fly long distance after?

Will you be able to reconstruct my breasts?

How long will the operation take?

How long will it extend my life?

What will happen if I don’t have the operation?

Do you recommend I have the operation?

The list could go on forever…….

6th August

Sometimes I feel so betrayed by everyone. Even my own family. I feel alone. I feel abandoned. I feel misunderstood by everyone. I feel friendless, rejected. I don’t feel anyone understands what I’m going through. I have always been labelled the “difficult” one.

Even my own family arranged to go on a big holiday together without one thought of me. Is there really a point in being part of a society that puts perfection above everything? What quality of life will I have? Even my life up to now has been difficult because being “disfigured” and “different” has had a devastating effect on my life.

Up until the age of about ten, my scar never really bothered me. It was only when I when I started going into puberty that the problems began. You see, whatever way they cut my sternum affected the way my breasts developed, leaving my breasts asymmetrical. This always bothered me. Not so much the scar as it has faded with time, but the asymmetry. I am not sure is this is common for people who have open heart surgery. I mean in theory, i could get it fixed with an implant, but life always seems to get in the way.

Yes, I have had relationships, but none of them have ever really worked out. I have always felt deeply insecure about this. I’ve always felt that deep down, whoever I was dating was always looking over their shoulder for something better. I am a complex person, and at the age of 44, I have decided that relationships are just not for me. This has led to more loneliness.

Full Steam Ahead

Today I successfully met up with the surgeon Dr X at St Thomas’ Hospital in London to discuss my future “hole in the heart” operation.

He seemed like a very nice doctor, which was reassuring, as not all doctors and surgeons are so friendly. After introductions, I went into full attack with my questions. Firstly, I asked:

“So why didn’t the operation I had to close the hole in my heart work the first time”? If I can jog your memory, I had my first open-heart surgery at the age of 2 and a half in the early 80s. I am now in my 40’s.

He simply replied, “Sometimes it just falls apart.”……. What falls apart? What the hole that was sewed up, fell apart? I always felt it was my fault somehow that i was facing another surgery. Back in the early 80’s, hospital follow-up or after care wasn’t exactly to the standard it is today.

My mum was simply told to “let her get on with her life”. She said the aftercare was “non-existent”. I always kind of assumed I was “fixed,” so in my younger days I lived my life to the full, let’s say, without thinking of the consequences. I was a bit wild in my youth, but no more or less than anyone else.

I did ask one of the doctors once if my wild lifestyle in my early years could have contributed to the hole reopening, but was reassured that no, it is merely “congenital,” whatever that means.

I then asked, so, how will you be fixing the hole in my heart? To which he replied, “We will be using a patch of leather from a cow.

How long will the operation take? To which he replied about 4 hours, including a heart and lung machine.

“Will you have to stop my heart”? For which he replied Yes we will have to stop your heart for about 20 minutes. I was like, “Oh my God,” this is getting really real now. I am basically going to be dead for 20 minutes.

I then asked the usual when, where how questions to which he replied it might take place in a few months.

I asked if he recommended I have the operation, and he said yes, i should have it as I will only deteriorate in time.

He mentioned something about blue blood, and that’s why my oxygen is low. It is currently about 85.

Finally, I asked,? “Will it improve my quality of life?” Yes, most definitely, he said. It should boost your oxygen to 100 percent.

So here we go on my road to heart surgery………….. Full steam ahead.

My Journey to Heart Surgery: A Day-by-Day Account

This is the post excerpt.

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.