Tag: surgery

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.