Why am I having an Irregular heart beat and extreme breathlessness 2 weeks post op aortic valve aneurysm replacement.

[Lisa4]

Morning everyone

Sorry it's taken so long to update, where has the time gone!

I was discharged on day 5 and very happy to come home. I seemed to be a text book case study patient. One wobble moving me to the cardiac ward from Adult Intensive Care Unit, my body wasn't ready to move off the morphine and none of the pain killers were hitting the pain. After a few heated discussions with ward staff the anaesthetist appeared and sorted the situation I only needed a couple of pumps and I was over the hurdle and back to walking round and on normal pain relief.

So happy to come home and start using the exercise plan put together by the physio team. Very stiff at times and restrictive but I was so glad to be alive and come through.

The research lady who asked to take samples and required my signature explained we don't often speak to the patient as not many who present with an aneurysm as bad as mine survive. Very humbling!

I have arranged for my children to be CT scanned by the BRAVE project who are researching bicuspid valve/aortic stenosis. They have been so supportive as there is a 25% chance they will have inherited this congenital disease. Fingers crossed pleased.

So here I am today and I have had my first Irregular heart episode since the operation. Which I could say what has triggered it, i did something different etc but no middle of the nigh woke up with heart pounding at different rates in a cold sweat.

Feel so disappointed as it had all been going so well. Made an appointment with GP today and calling surgeon's PA for guidance but would appreciate some guidance from any of you lovely people who may have had the same thing.

Lisa x

[Mary_Janet]

Hi Lisa,

Really interested in your reply. I had AVR for bicuspid valve in May. I had some irregular heart rhythms whilst in hospital and had slow atrial fibrillation which was rectified with drugs - I came off the final one two weeks ago. I am glad you are seeing the doctor today and hope that the problem is diagnosed and resolved speedily.

Sounds like you are doing really well with the exercise plan . Hope you find the cardiac rehab as helpful as I did. I really found it gave me the confidence to exercise and learn to trust my body once more.

I would be really interested in hearing about the advice you have been given about screening as we are about to discuss this with our children. However I think you have enough going on today.

Good luck today and hope you feel better.

Best wishes

Mary

[Lisa4 in reply to Mary_Janet]

Hi Mary

Thanks for your message Doctors called this morning I have an infection and anaemia. Bit of a shock but it looks like you’ve all had your ups and downs.

With regards to the children and inherited bicuspid valve. They are 16, 19, 21 so we discussed very early on. Especially as one is studying BioChemistry.

The Glenfield Hospital were able to link me up with their Brave project who are currently researching this genetic heart disease for all blood relatives of Bicuspid Valve sufferers. If you’re not local perhaps ask your surgeon’s PA or cardiologist PA as there must be other ones linked in different hospitals around the country or your results could be linked via the hospitals just a thought.

So now I have an infection to fight any tips would be greatly appreciated.

Take care

Lisa x

Lisa

[Mary_Janet in reply to Lisa4]

Not nice that you have an infection and anaemia. You must be shattered physically which will make you feel less able to cope with everything. Rest as much as possible, drink plenty of fluids and try having small nourishing meals, small portions will be tempting and have snacks in between. Hopefully your abs will kick in within 48hrs.

Thank oh for sharing about your kids, I too have teenagers15 &18. I am keen to go ahead with screening but my husband was less so but we had a chat with my cardiologist which was very helpful. The doctor has told us to take the kids to the GP to if there is a heart murmur and there is he will scan if needed. Interested in thé research you mentioned

My story is in May had ten days of flu like symptoms that were mot clearing. M'y GP heard à murmur and sent me to hospital where within 24jrs was diagnosed with endocarditis due to aortic stenosis due bicuspid valve i knew nothing a bout. A 9 week hospital stay including 8 weeks iv antibiotics and valve replacement. All going well and one off to thé gym on a freezing cold morning. Hopefully our kids will avoid all this.

Hope you feel à bit better gradually .

Mary

[Lisa4 in reply to Mary_Janet]

Wow Mary you've been through it, well done on your recovery.

[skid112 Heart Star]

Hi Lisa, welcome home and welcome back.

Don't be disheartened, (love that word on this forum!) we have all suffered set backs, normal perfectly normal. Hope your GP has reassured you and well done with the rehab, you're doing great, keep it up

Mark

[Lisa4 in reply to skid112]

Hi Mark

Good to hear from you, Doctors called this morning I have an infection and anaemia. No wonder I was flat out. Gutted but thanks for the reassurance I guess we all have to go through our set backs. Had a cry and now I’m resolved to rest and get rid of this nasty bug!

Take care

Lisa

[amhayllar]

Thinking of you and wishing you a good recovery x

[arethusa_12]

Hi Lisa, was interested in your post. I also had an aortic aneurysm with a repair and new mechanical aortic valve. I am 7 months post op and although I haven't had the infection you had I can tell you that I am still very breathless if I walk hard for too long. I think it is mainly to do with being out of condition rather than any problems with the heart op and I intend to keep pushing myself to realise an improvement in time. Hope it goes well for you.

[Lisa4 in reply to arethusa_12]

Hi Keep going I'm sure the breathless will improve. Glad all going well for you

lisa

[derekfirman36]

Hi. I have just joined and you are the first contact.

I suffered from an irregular heart beat, stopping for up to a minute at a time. Last summer I was fitted with "A Pacemaker" and have had NO further problems.

Wishing you well. Derek36

[Lisa4 in reply to derekfirman36]

Hi Derek

Glad to hear you’ve had a long period of stability and the pacemaker has worked for you. My cardiologist is going to do a 24 hour tape as I’ve been out of AF for a month. If all okay I should come off the Warfarin fingers crossed and will be able to start taking aspirin only.

Take care

Lisa x

[derekfirman36]

Nice to hear from you again. With best wishes for future health improvements.

I also have had tape recordings, 3days did not show a problem. Then had one fitted under the skin (up to 3 years) This found my irregular heart beat & stopping for up to a minute at a time. Hence "Pacemaker".

May you keep improving. Best wishes Derek