surprise surprise!

[Sunnygirl007]

Hypertrophic Cardiomyopathy

Hi there,

New to here and to anything heart related

Strong family history of heart issues on my dad's side....bypasses at 42 years old etc.

Absolutely no heart or associated issues ( that I'm aware of ) in 53 years.

Boom .... Dec 21 I noticed swelling in my legs and so so tired. I thought it was my new desk job ( not sitting all day) and more brain usage than normal.

Went to pharmacy and whilst there, asked for advice / thoughts....told me to get to Docs ASAP.

Duly, receptionist booked me in for bloods,all were satisfactory and Dr did not require to follow up with an appointment.

Fwd to march/april ... I made another appt and receptionist again booked for bloods ( she didn't think I needed a Dr appt). End of April I took unwell after a weekend trip and had weird symptoms ( to my normal) so called Dr's and then received a call from a Dr to run up now to surgery. She bked me in for an ecg, blood pressure check and more bloods the following day.

next day , nurse did 1 ecg ...then another, followed by BP ...she told me to breathe!!!

later that day, Dr called to say a chest x Ray was booked for Monday. All clear on xray but had to make appt to see Dr face to face !he cancelled and then was off for a week ....so,2 weeks later we met ...he asked when I'd had my first heart attack!I laughed. Total shock!

told me he was referring to cardiologist ( it may be a cple of months til appt Angela )

1 week later , I've come from work,parked furthest away carpark and ran up 2flights stairs to my cardio appt. Ecg another ecg ( oh oh here we go).... " are you feeling OK Angela?"

told the nurse I hadn't been too grand and the symptoms .... she disappeared and rtnd with a colleague who took me to a side room.

ffwd...I'm put in a wheelchair and taken to cardio ward and put on a monitor.

total total shock but I guess I'm extremely lucky.

cardio has told me he suspects hypertrophic Cardiomyopathy inherited, and arranged electrocardiograph!? And monitor ...tried me on various tablets for few days but took me off as my BP went way down...I haven't had high BP...arteries etc all clear and no furring etc. Cholesterol OK and nothing else to blame.

I've been told to dial 999 if I experience symptoms and my gtn spray & aspirin don't work. I have and do experience often but I don't want to be admitted unnecessarily and feel a fraud when I see really ill people in other wards. Surely I will know myself if serious enough! ?

awaiting the results of 48hr monitor now and the next step. Stress seems to be a major factor and sitting at a desk does not help with swelling.

I used to be very active and never sit down really and finding it difficult to get to grips with not being so. I suppose time will help.

my family are in denial I think and I'm not sure I've grasped it myself.

so there we go...and here I am.

pleasure to meet you all and hopefully we can bring some sunshine into each others day to make it easier.

A

[Hidden]

Hello & Welcome

You certainly have been trying to get some answers for a while but looks like you are getting somewhere now

It takes time to grasp and take them in I think we are all the same with that one but you will eventually

It is nice to meet you to and I am sure as members log on and read you post they will have some good advice and now you are part of this Community you always have somewhere to come and talk x

[Sunnygirl007 in reply to Hidden]

Thank you ❤️

[Hidden in reply to Sunnygirl007]

x

[Clerkenweller]

Welcome. It’s always a shock and initial denial is common. You’re on a path now so you will be sorted. However this is not a time for not wanting to bother GPs or A&E. Until your condition is fully understood by your cardiologist and medications sorted you are vulnerable. Use your GTN spray and keep a symptom diary. If you use your spray it doesn’t work and you use it a second time and it still doesn’t work you MUST call 111. Keep checking in here if anxious and look at the BHF site for reliable info/ advice.

[Sunnygirl007 in reply to Clerkenweller]

Thank you lots and yes I hear you re "not being a bother " ..understood ❤️

[Livelovelife56]

Hi I don't have the condition it's my youngest son. I just wanted to say something regarding going to the hospital if your feeling even a little unwell. My son struggles to understand what is happening due to other conditions but we were advised by cardiology nurses to take him everytime we suspect something may be different. It's better to let them check. You are just as important as anyone else in A&E . Your care and needs must always come first.

Also what a catalogue of events to finally get a diagnosis, please don't listen to receptionist they should never give you medical advice.

There is also a support group with nurses available during the week Cardiomyopathy UK. They are brillant as is this group for support and personal experiences which can I feel be really helpful when new to this condition especially. Take care x

[Sunnygirl007 in reply to Livelovelife56]

thank you so much and I hope your son is keeping ok so far. I guess I'm going through various stages at the moment but the support group seems a good place to go, so thank you for that info.

Heres to an upward step for all.

❤️

[Qualipop]

If your spray doesn't w ork, you MUST call 111 or 999. I thought my heart attack was simply indigestion. They won't admit you without a need. The worst would be several hours in A&E.

[Sunnygirl007 in reply to Qualipop]

thanks Qualipop I will. Loving the name 😊 x