This topic contains 6 replies, has 4 voices, and was last updated by eve 11 years, 3 months ago.
Hi all,
Apologies for the Mills and Boon heading but well, it made me laugh at any rate 🙂
Mainly all is fine with me – I won't pretend it's a barrel of laughs, but the headlines are I'm making the slightly tricky transition back to 'normal' life and work etc, coming to terms with what's happened in the last 11 months, but feel grateful that the myeloma is at bay for now.
My question is a slightly random one, just in case anyone has had a similar experience or advice – and if not then at least by writing on here it might help someone in future.
For my trial I had to have echocardiograms before and after chemo. (It's an ultrasound of your heart). After the second one, they saw something – said it could have been a mistake, or my Hickman line, or 'thickening' but sent me for a heart MRI. After that, I got summoned for a TOE which is a transoesophageal echo looking at your heart from the back, so they shove a tube down your throat (UGH – not recommended!!) As the letter arrived on a Saturday, I had no way of asking what this was for but terrified myself by googling things on the internet but then decided to stop and get on with life. It was booked for the same day as I was next seeing my consultant anyway. I had it, and it found a 1x2cm mass in the right atrium of my heart, appearance suggesting a blood clot or muscle ridge. I'd been sedated so my memory of what they said is pretty hazy, but that was written on the report. It also said I should go onto blood thinners and have another scan in 6 weeks and see cardiologists in 8 weeks. I finally saw my consultant around 7pm the same day (clinic late due to new computer system) and she was quite surprised by it all but set me up to get started on blood thinners from the following morning. This proved to be the biggest problem of all as I had to keep going twice a week to hospital get my levels checked, plus inject myself every day etc. Now that I'm back at work, this was all a bit exhausting as the hospital is in the opposite direction to my office, and suddenly I was at hospital up to 3 times a week, just when I thought it was tailing off, and I was trying to get up early and yoyoing between all three places via bus, tube etc – which is all still a bit much with current energy levels.
Anyway… moan over! I've got another echocardiogram on Thursday (from outside chest not down throat, phew) and then it says I'll see cardiologists the same day. No idea on timing but at least I'll be able to ask what's going on and I won't be sedated this time! So I thought I'd ask your collective wisdoms.
Has anyone had anything similar? Do you know how long it takes blood clots to dissolve with blood thinners, if that's what it is? I'm aware that sometimes there can be clots with Hickman lines (I had one in for 6 months). I don't have any other symptoms of heart problems and I think all the rest of the MRI/echo results for my heart were normal. In fact, I'm pretty sure (although it's hazy) that they looked back at the scan which was done BEFORE chemo and said it was already there, so it may just be a long-standing defect or something. As long as they don't think it's something that needs even more investigations, I'm happy! I don't fancy heart surgery 🙂 though I'm hoping that's unlikely.
I'll let you know how it turns out, anyway.
Hoping also they take me off blood thinners, partly as they don't mix well with alcohol! I missed my birthday last year (was the day I went into hospital and came out 4 weeks later) so I decided to celebrate very belatedly and I'm having a 33 and 333 days party the weekend after next, it would be nice to be able to enjoy some bubbles at that 🙂
Helen
Hi Helen
I wish you well on your belated or should I say early birthday,I feel like that about Christmas Slim has nt been well enough to enjoy one for a few years,with that in mind why do I look forward to it !!!
We all need a little Mills and Boon,in are lives even the people who go uck!!,seriously does this heart problem worry you,or are you just putting it down as another thing to add to the list.!!! Eve
Thanks Eve!
Yes it's nice to have something to look forward to and important still to have those days.
I'm actually reassured after yesterday. I haven't seen doctors or had results yet but the guy doing the test explained it and showed me the pictures and said it looked to him like my heart just has an extra sticky-out-bit, not a clot.
I was really worried when they asked me back for a third test after the MRI and I didn't know why – I found lots of scary stuff online about heart problems and chemotherapy. Also it does seem blood clots are fairly common with Hickman lines.
But I guess I just thought I'd post to show that sometimes on these trials you get lots and lots of tests and you don't need to panic…. And that hearts can be funny shapes and it's ok!
I hope you and Slim have a nice Friday today and a happy weekend,
Helen xx
Hi Helen
Glad that you haven't got blood clots youn will be so releived.
Maureen
Hi Helen
Sorry you had all this to cope with just when you were through the worst after SCT. Just hope it all turns out to be a blip. I remember once, on a pre-op session, being told that I had a silent heart attack. Carrying this worry for years, a later ECG showed no sign of it, so it shows they can get things wrong.
Love.
Mavis x
Hi all,
Again, just in case someone in future is in a similar situation, here's an update on what happened: it turned out that it was indeed a blood clot and it's now gone away due to the blood thinners. My last heart scan was fine, and I saw the cardiologist again on Friday. Provided my next scan in 6 weeks is still clear, I can then stop taking warfarin (as it'll be 6 months at that point which should be enough).
It was probably a side effect of the Hickman line which I had for 6 months. At least the echocardiograms which were part of the trial picked it up.
Otherwise, life is good and I'm enjoying lots of sunshine both at home and abroad!
Best wishes to all of you,
Helen
Hi Helen
Glad to hear,you Mills and Boon heart is doing fine,as you say having equipment to be able to find these little things that can go wrong,is good, I take it you are at a large hospital.???
Enjoy your holidays,must admit getting envious of you all taking holidays,it looks if a holiday is not to be for us,cannot complain,make do with taking Motorhome down to the beach,if Slim picks up . Love Eve
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