Cardiac nurse helpline: After my recent... - British Heart Fou...

British Heart Foundation
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Cardiac nurse helpline

Happyme123
Happyme123

After my recent heart surgery and finding no others on the site who had a Myxoma removed from within the heart I decided to ring the helpline for some further advice. I have to say that the nurse who I spoke to was extremely helpful and answered all of my questions and concerns and gave me a much fuller understanding of my recovery. She also gave me advice on questions to ask my surgeon when I see him in a couple of weeks 😊

If you are feeling worried or stressed please know that you are not alone, the members on here can give you give you their own personal insight to different heart conditions and the nurses can give you their excellent medical knowledge.

Happy me 😊😉

36 Replies
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MichaelJH
MichaelJHHeart Star

Thank you for your positive feedback. I often recommend people to ring the Helpline but usually one never knows if they did and how satisfied they were with the response.

Hi - I had an atrial myxoma removed 4 weeks ago. It was 6cm across. I had been going to my GP for 3 years with various symptoms; dizziness when standing up (I was told to stand up more slowly!), raynaud's syndrome and breathlessness when walking uphill. I am 58 years old and reasonably fit -I walk home from work 5 days a week - it's over 3 miles and takes me 45 minutes but I live on a hill and the last part of the walk up the hill was leaving me breathless. I also walk the dog every morning and evening. I have fibromyalgia and my GP thought all the symptoms were related to this. When I started having palpitations she took it more seriously. I had lots of ECG tests including 24 hour and all was fine. Finally I had an appointment with a heart consultant who decided to do an ultrasound scan of my heart. Within 24 hours of the scan I had open heart surgery. I was admitted immediately as an urgent case. All a terrible shock. 5 days after the op I came home - all I was given was a box of 100 paracetamol. Not told to do any stretching exercises - told to walk but not to overdo it which is all a bit vague. I have a cardiac rehab appointment this week so hopefully they can answer my questions. After the op I had very little pain but now the scar is feeling tight and sore - I've been to the nurse at my GP surgery to have stitches out and she said it was normal to feel a bit more pain as the nerves are healing. I feel lucky to have eventually been diagnosed and treated but I think my fibromyalgia was a red herring. The consultant was brilliant. She stressed that I needed a major op but I was 100% treatable and would make a full recovery. I realise it's a rare condition so diagnosis is difficult. Have you read 'Julie's Story on the BHF website?

Happyme123
Happyme123
in reply to Dawes

Hi,

At last someone else like me 😁 from what I can gather it is condition which is often overlooked. I had my operation eleven weeks yesterday . They told me that they didn’t offer cardiac rehab for this condition. I assumed it was because other than the tumour my heart and arteries were all good. So although I did daily walks I didn’t overstretch because I’d read that if you do too much it can cause a bleed inside.

I was given tramadol and paracetamol and I took them as required. The scar is still prickly and tender but I’m now, after advice from other members using bio oil and already it feels easier.

I’m 62 and both my daughters who are 38 and 40 have had echocardiograms because it run in families. They are both fine but will need to be checked every few years. If this condition is found early I’m told they can operate through the side rather than having to open the chest.

It all came as a massive shock to me too and like you once they found it they wouldn’t let me out until it was removed. I was in ICU for eight days because I developed Afib then I had two days on a ward then home.

Personally I’ve found the healing process quite painful which surprised me because I’ve got a high pain threshold. The surgeon told me that the younger you are the more painful it can be due to muscles been more tense!

I did read Julie’s story and she did remarkably well with her recovery ❤️ I saw the surgeon six weeks after being discharged and had both an X-ray and ECG both of which were fine. I have to go back in six months for another echocardiogram.

I wish you all the best, keep in touch, this is a great site for advice with such lovely people.

Elaine 😊

Dawes
Dawes
in reply to Happyme123

I had my scan the day after I came back from a 2 week holiday in Cyprus. I was snorkelling and swimming miles every day and my husband had booked accomodation up a steep hill which wasn't ideal as I was out of breath going uphill! We had a great holiday so I comfort myself with the thought that they couldn't fit me in before the holiday - I wouldn't have been able to go! However - I have been told I was lucky as it was a time bomb in my heart that could've broken up at any time and I would probably have had a stroke....a sobering thought. I will try the bio oil. I feel fine apart from the scar being sore - also feels like a nettle rash across my chest. I do feel more tired than usual on some days but I usually sleep on my front and sleeping on my back/side means I don't sleep well. My husband works from home so I go out dog walking in the woods with him and I always feel better for it.

Happyme123
Happyme123
in reply to Dawes

That’s brilliant, you sound to be making a remarkable recovery. 😁

Dawes
Dawes
in reply to Happyme123

Interesting what you said about your daughters being checked out. I have sons who ar 30 and 28 and a daughter who is 23 so that's something I need to ask about when I have my check-up.

Happyme123
Happyme123
in reply to Dawes

Definitely 🙂

Dawes
Dawes
in reply to Happyme123

Well I've had my 6 week check now and been told there is no need for my sons and daughter to be checked. Making a good recovery -occasionally I have to remind myself I can't lift things but definitely feeling stronger now. My best friend is a psychtherapist working for the NHS. She has just found out that her colleague has an atrial myxoma. How odd that 2people she knows have been diagonsed with the same condition withinn a couple of months of each other!

Happyme123
Happyme123
in reply to Dawes

It seems that Myxoma’s are getting noticed now which is good. I’m pleased to hear that you are feeling better I am too ❤️

Hi everyone !

Glad to find these posts about cardiac Myxoma. I felt so rare because these condition. I had two myocarditis before the clinical team realise that it was a Myxoma in my left atrium . When they realised , I had an urgent open heart surgery 5 weeks ago to remove it. I'm still recovering, luckily I don't have arrytmias ( AF as I used to and my BP is stabilising).

On next Tuesday I start cardiac rehabilitation.

I would like to know how you are dealing after everything.

Have a nice day :)

Happyme123
Happyme123
in reply to Jebri

Hi Jebri,

It’s been l six months since I had my Myxoma removed which was my right atrium 😄 I never had any cardiac rehabilitation which I believed was because everything around my heart was good. Six weeks after my operation I had to go back for a chest X-ray and an ECG and I have another appointment on the 3 December for another echocardiogram. Did you have open heart surgery or did they go in from the side?

I am feeling a million times better than what I did prior to the operation and my blood pressure is back to normal now and apart from my scar hurting now and agin I’ve had no issues 😊

Hi !

I had an open heart surgery . I really want to be the same person as I used to be before all this long process. I had two myocarditis that were caused by the tumour ( march and September this year ) . At that stage was really small and they didn't notice it . At the end , it was a mass of 2 cm in my left atrium and make me feel really bad . I think my heart is still recovering, I had a ecg on last Wednesday and it was funny . However, I know it is too early to say something and always you will have a new normality after a major heart surgery .

Glad to read that you are better :) !

I'm really want to be recovered !

Blessings

Happyme123
Happyme123
in reply to Jebri

What I found difficult was when I could lay on my side I felt strange like my heart was different, the consultant said it is because when the go into the heart the fluid around it obviously comes away. You get used to it.

Jebri
Jebri
in reply to Happyme123

I feel strange too, but also I feel like a little bit painfull for my sternon . One week ago , I started to move my arms and shoulders more confidently. It was painful in the beginning for my chest muscles but now I'm feeling more adapted to that . Also, with this cold weather the incision got painful but a big poncho helps a lot :).

To me that was the most painful when all the nerve endings were healing , I was also told that the younger you are the more painful the healing due to stronger muscles! The other members on the site were great giving me advice but I really wanted to hear from someone who had a Myxoma and that’s why I’ve stayed on the site.

Well, another myxoma lady is here :)

Mostly my pain is under the scar and I think is coming from the sternon fracture of the surgery. I'm 38 y , so for me it is painful but nothing compared to give birth to be honest 😉.

My Myxoma was in my left atrium , so since all my muscles were moved and cut. I guess it is absolutely normal to have pain in my left side in my muscle area .

In the begging my back pain was horrible, but now it has slettle down. I took some accupuncture sessions after and my therapist she is great .

We will be fine 🤗

Trust me the worst is over, enjoy your beautiful children and soon you will be feeling a million dollars 🤗

Thank you my Myxoma lady 🥰😍🥰😍🥰

Happyme123
Happyme123
in reply to Jebri

❤️

Hi Jebri - Three of us on here now then. I only look once a week on here now. Had my op on 3rd July and I went back to work 10 weeks later - just half days for the first 2 weeks. I did cardiac rehab course but it wasn't really relevant to me as I don't have heart disease but the exercises made me confident that my breastbone had healed well. We did an hour of exercise then had a talk afterwards -different subject every week for 8 weeks - stress, diet, heart medication etc. Probably worth doing the course even if you don't have heart disease after the op. I do a lot of walking - I sit at a computer all day so walk home which is 3 miles and also walk my dog twice a day. I feel so much better since the op and can even run up hills now. Scar is still slightly sore - I can't wear wool as it irritates the scar and bio oil was no good for me as it has lanolin in which makes me itch but I've heard it works well for most people.

Happyme123
Happyme123
in reply to Dawes

I’m happy to hear your still doing well. We have our own little Myxoma club now....... Elaine 😊

Jebri
Jebri
in reply to Happyme123

Yes, our little club :)

Jebri
Jebri
in reply to Dawes

Hi Dawes !

Your message make me feel confident about my recovery . I will start my cardiac rehabilitation in 2 weeks more. Did you have any type of palpitations ?

I had a bad episode that ended on AF, but time a time now I have palpitations with normal blood pressure and normal heart beatings . The cardiologist told me o shouldn't be worry about it .

My scar is fine , getting better and now I can take a shower by my own. That makes me very proud :).

Cheers

Happyme123
Happyme123
in reply to Jebri

I too had a episode of AF and was on medication for six weeks

Jebri
Jebri
in reply to Happyme123

Hi Elaine !

I'm still on medication for it . I'm on colchicine . The secondary effects are not so nice, but it seems is working .

Cheers !

Not palpitations exactly but I am aware of my heart beating sometimes -I was told this is a result of the op and it being 'handled' by the surgeon and nothing to worry about.

Jebri
Jebri
in reply to Dawes

Hi Dawes,

They told me exactly the same . They gave metroprolol on the pocket just in case . I will have a control with my cardiologist in December to evaluate everything related to this .

Good night :)

I’ve got my appointment through for a repeat echocardiogram on the 3 December to check how things are looking ❤️

Hi !

Since Friday I have been with these funny intermittent palpitations with normal BP and HR. So today I decided to come to the EA. Here I'm , they have took me 3 ECG , blood test and I will be connected to the monitor now.

Also, I will be seen by cardiologist soon.

Wish me luck !

Xxx

I wish you luck ❤️

I'm going to be send to home soon .

Cardiologist changed me some medication doses . Also, I'm more calm .

Nothing serious , but I can't overlook these things after the surgery .

Hugs !

I agree, you did right to go. After my surgery I found if I laid on one side I felt like my heart was jumping, it was a horrible feeling. I was told later that it is like that because the fluid around my heart had been drained with the open heart surgery and I would get used to it. It’s scary after major heart surgery. I’m pleased everything is sorted for you ❤️

Now I'm at home :)

I started to have short walks.

How was your experience with this ? Did you get tired easily after in the beggining ? In my case I get tired and I need to rest after or even have short naps . What about you ?

Thanks :)

I had to asked little sleeps after lunch in the first month or so. You have small children so it must be difficult, the surgeon told me it can take 12 months before you get back to normal . It’s six months tomorrow since I had my surgery and I feel and look better than I have for years. Honestly it will get better.

Elaine 😊

Hello ! Just to say hello ! :)

Hello Jebri, how are you doing

Elaine 😊

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