Atrial myxoma. New post.

[Pieman1]

I’m just 70. Six months ago I started to become out of breath doing Very little and knew there was something not quite right. Unfortunately with Covid-19 around and the NHS up to its ears, I delayed contacting my GP until late July 2020. After describing my symptoms over the phone I was sent for X-ray, bowel cancer test, and blood test. A month later I had another conversation with my GP, and put on meditation for the diagnosis of angina. Four weeks later I was no better and part of the continuing assessment I had an ultrasound scan two weeks ago. I was immediately taken into hospital and this time correctly diagnosed with an atrial myxoma in my left atria. Somewhat of a shock. After a week in the wonderful Basildon Cardiac Hospital I was operated on to remove the tumour. That was Tuesday 6 October 2020. I am now at home 5 days later, alive, weak and on the road to a recovery. Although a myxoma is rare, there are superb doctors that can resolve the issue. Most of the time the tumour is non-cancerous and will not recur, which is the good news. I just now have to take each day to build up my strength and look forward to the future. If anyone wants any information about the procedure, build up to it or subsequent recovery just let me know.

[ellj]

What a shock that must have been but thankfully you are now on the road to recovery.

I just wanted to wish you well.

Ellie

[Pieman1 in reply to ellj]

Thanks for your good wishes..

[Fluffybee]

Wow that is horrific, and it took all that time to diagnose !!!!!!

Hope you get better soon with plenty of R&R !!!

[Pieman1 in reply to Fluffybee]

Thanks for your kind words. Yes, just a bit horrific!

[Hidden]

Hi Pieman,

I know what you have been through and I’m told it is a condition that’s very hard to diagnose. My Myxoma was in my right atrium and was found during a CT scan when I was having stomach problems.

Wishing you a good recovery, look after yourself.

Elaine 😘

[Pieman1 in reply to Hidden]

Thanks very much. Getting better by the day....

[Pieman1 in reply to Hidden]

Hi Elaine, Now 4 weeks since my operation and still feeling out of breath going up stairs. Did you eventually get your life back and not being out of breath, which is what I originally went to my GP for? Pieman1

[080311 in reply to Pieman1]

Hi I had open heart surgery and because we are put on by pass our lungs take a hit as well as our heart the breathing exercises we are given in hospital I called them (huffing and puffing ) carry on doing them at home that and the coughing we had to do. I found they really helped with the breathing, opening up all those little pockets in our lungs😂

Best wishes for a great recovery Pauline

[Pieman1 in reply to 080311]

Hi Pauline, thanks for your reply and shod wishes. I’m getting to the point where I can breath deeply without too much of a pain at the top of the breath, which I couldn’t do a couple of weeks ago, so at least I seem to be getting somewhere.... very, very slowly.

Best wishes,

Simon

[Hidden in reply to Pieman1]

Personally it took me a while to get back to normal, I used to read about people getting back to work and walking miles. I certainly didn’t. Its like Pauline said above its your lungs that need to be worked on which I know is difficult because it used to hurt me to take a deep breath 😬 Don’t over do it you have a lot of healing to do. I found the first 12 weeks quIte difficult. My surgeon said it takes 12 to 18 months to recover fully after a myxoma removal. It’s a massive operation to have your heart opened to remove a tumour, Be kind to yourself and gradually build up your stamina and be patient . It WILL get easier honestly. Wishing you all the best, always here for questions.

Elaine ❤️

[Pieman1 in reply to Hidden]

Hi Elaine,

Thank you so much for your reply. I honestly thought that I had another problem as my energy levels were really low as it has been 4 weeks since my operation and thought I’d be better than I am. Now you saying that has given me more reassurance that there is light at the end of the tunnel. May I ask when you had the Myxoma removed? And how you are doing now with regard to walking up stairs and slopes? Best wishes Simon.

[Hidden in reply to Pieman1]

Hi Simon, I had my operation May 2019 and just like you it came as a complete shock. I hadn’t felt well for a long time, I used to literally drag myself up any stairs hanging on to the banister. I live in an apartment now and it’s on the second floor, we have a lift but I tend to use the stairs. When I first got out of hospital I wanted to try going up the stairs but I could only do it very slowly and I mean two steps then rest!

It is so frustrating I know, but think about it, you have had a major operation a tumour removed from inside your heart, your ribs have to fuse back together, your lungs have to get fully active again.

Gradually do a little bit more but listen to your body don’t push it too hard. I was told that I wouldn’t have cardiac rehab , my heart is actually really healthy and hopefully yours is too.

In answer to your question now I can definitely walk up slopes and 34 stairs without stopping and you will too when your body is ready for it. Be kind to yourself, don’t try to run before you can walk 😉

I would imagine you will be having a 6 week review so ask the questions. I remember asking why my heart felt like it was knocking in my chest and they explained it was because I had lost the fluid which surrounds the heart. I also felt like rubber bands were flicking against my body which is the nerves repairing themselves. It’s been quite a journey along with a massive shock that I even had a myxoma . It does get better honestly.

Always here

Elaine.

[Pieman1 in reply to Hidden]

Hi Elaine, That is so kind of you to reply again. I have my post operation review next week (5 weeks after the operation) and have questions to ask, but your reply has really helped me. Now knowing that its not a quick fix, but the long haul to better life was reassuring. Like you my heart is in good condition, no problems with the tubes around it. It was just the darn Myxoma !!

I realise that an Atrial Myxoma is pretty rare and have read that its probaby about 1 in a million (But not really sure as there don't seem to be able to find any realiable statistics).

Bes wishes,

Simon.

[Hidden in reply to Pieman1]

I agree regarding the information and when I joined this site there wasn’t anyone really to ask, then another couple of ladies joined who I connected with but because they too had healthy hearts they stopped coming on to the site. I hang around to see if anyone else joins and wants to talk to someone who been through it.

Very rarely a little bit of the tumour can remain inside which has unfortunately happened to me, this is being monitored by scans every six months in case it grows again in which case I will have to have another operation, fingers crossed that won’t happen anytime soon.

In reality Simon we are so lucky because they found the tumours, in most cases they are benign, usually found inside healthy hearts and most people recover fully afterwards and they rarely return.

My two daughters both had echocardiograms to make sure it wasn’t anything passed through as recommended by the surgeon and they were both clear. My tumour must have been there for years it measured 5 cm and was breaking through the septum, luckily mine was in my right chamber otherwise I probably wouldn’t be writing this message 😉

Keep in touch Simon it good to be able to chat to someone who’s been through the same thing.

The NHS has info regarding myxoma and I found the link below good.

Elaine 😊

bhf.org.uk/informationsuppo...

[Pieman1 in reply to Hidden]

Hi Elaine, Thanks for the link. Some interesting information, although it is clear not a lot of people know about Myxomas. My GP certainly didn’t.

I hope your recurrence keeps at bay for a long, long time. Keep in touch.

Best wishes

Simon

[Pieman1 in reply to Hidden]

Hi Elaine, Thought I’d just let you know I had my first review last week, with a few tests including an x-ray. Saw a surgeon and all seems to be fine... thank goodness. I seem to be eventually getting over my extreme tiredness, which seemed like would never end. So, seem to be getting there. Walking just gets easier.I still hadn’t heard from the cardiologist who was supposed to be letting me know about future medication, so contacted my GP who has now taken me off all medication, even no blood pressure tablets. (But still on statins which I’ve been on for years, which don’t concern me). Whoopee.

Just out of interest what medication did you take after hospital and for how long?

Hope you are OK.

Simon

[MountainGoat52]

Wow what a journey! So pleased that you eventually received the correct diagnosis and treatment.

You certainly seem very positive which is good to see. Your post starts "I'm just 70". - well, from a mere whipper-snapper of 68, I wish you all the best for a good recovery. 😀

[Pieman1]

Thanks, day by day, getting there. Just the Zipper scar to heal properly.