www.heart2hearts.co.uk

[admin]

hi sue,
i was just wondering if it was possible to add another topic in the forum index, possibly under related conditions or post operative for people who've had rare-ish surgery like me? theres so much online about heart attacks and bypasses, transplants, valve replacement, angina etc but virtually nothing on any other reasons for surgery for things like myxomas which is what i had my open heart surgery for. i would really love the opportunity to talk about this with people who have perhaps undergone similar surgery for a similar thing as it was a huge life changing experience for me and it has had ongoing consequences. not to mention all the usual ( i guess?) surgical pre and post experiences and emotions. i have had nasty nightmares for example during my recovery, i assume these are a subconcious reaction to having been operated on when unconcious, with masked dark figures creeping around my house etc.
i had the myxoma for many years but it was never diagnosed. they knew this because it was so large when it was finally found. the doctors either thought i had m.e. or was a total hypocondriac. in fact when it was found, (in ireland not england which made everything 100 x more complicated and emotionally traumatic), it was virually filling my left atrium and had to be removed immediately. it was a huge shock after 13 years of being ignored and patronised by the medical profession and i couldnt believe theyd actually finally found something! i also couldnt believe i was having major heart surgery at 24! it was ha huge rush of mixed emotions. but they reassured me that i would be hopefully completely cured by this operation and would no longer suffer my extreme fatigue and other disabling symptoms.

however, my recovery has been hampered by an as yet undiagnosed complication of some kind of nerve damage to my right shoulder - affecting my whole arm into my thumb and forefinger so i have to keep it in a sling. as i'm right handed this has been very difficult, meaning ive been even more dependent on my family to care for me, even to the point of cutting up my food, pulling me up if i'm lying down, and dressing and undressing my top half. this has lead to great frustration on my part and ultimately depression. especially as after 4.5 months the pain (both in my arm and in my chest) has not grown much less.

recently i have also found that i was lied to by my consultant here in england. i was admitted to hospital after my operation when i had returned home and had thought it was all over - they thought i had clots. after 2 weeks i discharged myself because after internal and external echos my consultant informed me that my scan was totally clear. i asked him and his team numerous times, and in the presence of witnesses whether the scans had shown anything at all. however i recently overheard another specialist (who i was seeing for my shoulder) summarising my notes into his dictaphone: he said that the echos had found a 'strand'. i went straight to my gp and she read me a letter written to her about the echos which confirmed that theyd seen a mass that they thought was a little bit of the myxoma that had been missed.
this was such a blow, and instantly i began to firstly feel very angry with my consultant for lying to me, with my surgeon who i thought was amazing for possibly failing me, and secondly feel terrified that i was maybe going to have to have more surgery. my gp admitted yesterday that this was an option (after first palming me off with uncommittal answers and leaving me to stew in my worry for 2 weeks). however, she did say this would depend on further investigations and on seeing a cardiologist, which i do not yet have in this country, its all so complicated. this will take months and inthe meantime i will have all this uncertainty hanging over me like a dark cloud. it's not exactly helpful for my recovery, i'm desperately trying to get motivated and positive. i've started cardiac rehab and am finding it helpful, although not in the social and companionship ways that others thereare, as i'm the youngest by a good 20 years and they've all had heart attacks, angina, bypasses etc, and are in it for the long haul. something i hope i'm not!
to cap it off my surgeon in ireland is being very difficult and not releasing my notes to my consultant here. i have had to get involved, something i don't think i should have had to do, given that stress was a significant factor in triggering the problems that led me to hospital in the first place, being the final straw for my body so to speak. but of course you always need to hassle to get stuff moving, but this really took it a bit far, although i do understand that my case is difficult seeing as my care has passed from 1 country to another.
the upshot being that i don't know whats going on, whether i'm doing the right thing keeping my arm in a sling, whether i'm going to need another operation...all these worries are getting me into a right state and i'm getting very depressed. i'm snapping at my family, isolating my best friend by putting her off coming to see me, and just trying to squash down all these feelings distracting myself with fantasy books tv anf the internet, trying desperately to ignore what i'm feeling and remain positive and get active.
the outcome of this operation was supposed to be the end of my ill health and associations with doctors and hospitals, and after the initial shock i was very optimistic and positive. but it's got worse not better and i don't even know if i'm going to be left with this arm problem in the long term seeing as how its not gone after 4.5 months rest. i just can't stay positive any more and i want desperately to talk to someone outside of family and friends and doctors about it.
it has been quite an ordeal, with many things combining all of which would be more than enough to cope with alone.
it would be wonderful if you would consider adding another topic to your message boards, i can see how to add a topic within the main topics listed, but none of these are really relevant to me. thank you very much for your time, i'm sorry this has turned into an essay but like i said theres just nowhere i can find anywhere online to share all this or read other bits and bobs from people with similar slightly less common problems. i have contacted the british heart foundation as i was very surprised to see that the information they provide if again very limited and generally focuses of the more commmon ailments and procedures. after finally finding out that i do in fact have something real that they could do something about and therefore feeling included and acknowledged by the medical profession and society in general, i now feel like i'm cast adrift again into a sea of obscurity, uncommon and therefore an anomily, unknown and generaly unrecognised. thanks very much for your time, please feel free to use this txt for your site if you do decide to add another topic. i'd really appreciate it. and i'm sure i'm not the only person who would. kind regards, kim

[As requested Kim, I hope you receive some good responses

Wishing you a speedy recovery

Sue]

[Brokenheart]

Hi, Kim.....what is Myxomas?

I'm 39 and it took me a year to get a Dr to listen to me that something is
wrong. They found I have something rare Diastolic Dysfunction, which is where my heart doesn't relax and causes high heart rate, however, my symptoms persist. And Dr's are still not sure what is going on.
Then, after 2 catherizations, a Dr found I have 5 blockages, 2 that they
stented....now my body is rejecting the stents.....still the Dr doesnt' think
this is what is producing my symptoms. I get chest pain, my chest is usually tight, heavy and very uncomfortable. Yet no answers to WHY.
All my bloodwork, EKG, come back fine, exept I have had abnormal and normal stress test. I've had chest xray that I was told was fine, HOWEVER, I actually had fluid around my lungs.
Now, the smallest activity I feel, the tightness, and chest discomfort isn't going away. MOst of all, my body is rejecting 3 stents in 1 main artery and they aren't fixing or replacing it. It didnt' meet their 70% magical #,
my entire artery is 40 thru 60% blocked because of the rejection.
They can't do anything to stop it from filling but won't fix it. I am continuing my quest to get my heart fixed...it has been 2 years now and
they now "thought" they knew what was causing my symptom but are not sure now.
I understand completely what you have been going thru on trying to find out what is wrong when the medical specialist just won't listen. Like we are making this stuff up or just want attention. At first every single Dr I saw kept trying to tell me it is my weight. I was loosing weight and was very active when this all started. And also heard, that I'm to young, don't fit the profile, basic test are fine, blah blah blaah
I'm running out of Dr's and Hosp to try in my area. (New Jersey, USA)
Have you seen a neurologist about your arm?
Good luck to you !!