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I have an appointment with my cardiologist today and I am really nervous and quite scared.

4 replies

StandingAlone · 09/01/2012 11:13

Last July my Cardiologists receptionist rang me to tell me that he had requested to see me as a matter of urgency. I had been in the previous week for an echo-cardiogram. They rang on a Friday and made me the appointment for the following Monday. She wouldn't tell me if it was positive or negative, although I am not actually sure if they can tell you that over the phone anyway.

Anyway I saw my cardiologist on the Monday and he said that there seems to be some deterioration in my heart condition. I was born with an enlarged heart and leaking Mitral valve, I also have a murmur and a very slight leak on my Aorta. It was caught when I was born and I have had regular checkups etc.

I usually have an echo-cardiograph every 12 months and then see my cardiologist 2-4 weeks after having the echo. This time thought it has only been 6 months between check ups.
I had my last echo about 4 weeks ago and I am seeing my cardiologist today at 4pm. I am really scared TBH. My heart has never really given me any trouble before. I get a little tired and out of breath quicker that most but other than that no problems. When pg with DD2 I did struggle with some exertions, stairs became my nemesis and would have me gasping for breath but I was monitored closely by my cardiologist and his team. After having DD2 everything returned to pretty much normal (heart wise anyway) after about 4 months or so. I had a procedure where I was sedated and a had a camera down my throat to check my heart from behind and everything was fine, my cardiologist was happy with how things were. Up until the phone call I had last July Sad

I am really scared I didn't realise I was until last night when I could not sleep and realised it was because I kept picturing my cardiologist telling me that things were irreparable;e with my heart and that I would die. Last time I spoke to him he said they would monitor me more closely and at some point they may have to do a repair on my leaking Mitral valve. This terrifies me, I am not scared for me I am scared about leaving my DD's.

I am 32 years old FGS I never thought I would have heart trouble like this at this age.

I feel like my body is going to pot, I am in agony with my joints, my feet are so painful that I can barely walk some days. My GP just keeps giving me strong painkillers which do help with the pain but space me out and I hate the feeling of being spaced out so generally do not take the pain killers unless I REALLY need them. My DD's are only 4 and 2.5.
My GP doesn't know what is wrong with my joints to cause me so much pain, I have been checked for arthritis ect. My GP does acupuncture which has helped my ankles and my knees they are not nearly as bad as they were.

Sorry this is long, I am so scared right now and just needed to get it off my chest.

Thank you for reading this if you got this far.

OP posts:
PeanutButterCupCake · 09/01/2012 13:03
NK346f2849X127d8bca260 · 09/01/2012 16:14

I am sorry you are so worried, this is really normal especially when you have children.
Your Aortic can be replaced and they can repair/replace your mitral valve, these are done every day and you lead a normal life after.

My mum was born with a defective Aortic valve and this was replaced 3 years ago at the age of 72. She became very ill, couldn't eat or get out of bed she was so breathless, but now she is fighting fit and even replaced her shed roof last summer!!!

I was also born with a prolapsed Mitral valve, have had no problems with mine so far, but know that one day it may give me problems.

Your joints, have you been checked for Rheumotid Arthritis? i think you should go back and see your doctor about it.

Hoping your appointment has gone well for you.

StandingAlone · 09/01/2012 18:25

Thank you, only just got back. Some positive news, well not as bad as I was expecting.

My cardiologist is starting me on an ACE inhibitor and will continue to monitor my progress. There has been 5-6 months between my echo-cardiograms and no change in between these 5-6 months so that is good.

I start my meds on Thursday and have to be monitored for the first few weeks to check my kidney function and keep an eye on any other side effects.

I have another echo-cardiogram in 6 months and will get an appointment in the meantime for 24-48 hour arterial fibrillation monitoring due to the palpitations I have been experiencing.

Feel much happier now that is over with and had pretty much positive news.

OP posts:
Auntiestablishment · 09/01/2012 21:37

Glad you feel happier after a good appointment!

I am on ACE inhibitors for a different congenital heart condition. I hope you don't get any side-effects, but I had quite a lot of tiredness/dizziness when I started on them - and found that the doctors don't warn you about this. I increase the dose quite slowly to minimise the downward "bump" when I increased the dose each time.

If you want to swap war stories, there is a messageboard at the Grown Up (yukky name) Congenital Heart Patients Association website here.

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