A note post surgery. This was the easiest surgery I have ever had. Drove hospital staff crazy 10/31/2013 on day of surgery singing “what does the fox say?” I am 58 years old and obviously was born with defect. Problems with passing out and dizziness from early childhood. Also intermittent hypertension from 18 years old on. Oh wait, I was active and thought I was in good health, it must be in my head or " female" problems ( sorry guys). I hit my 30s and felt like I hit a wall. Gone was all my stamina and energy. Now came one illness after another and with each illness came more and more symptoms. A murmur, shortness of breath, overwhelming fatigue, hypertension, irregular heartbeat, high protein and calcium in urine, GI problems, multiple fractures and vitamin d deficiency were just a few. Even my hospital admissions for chest pain didn’t trigger the right solution. I spent so much of my life accepting and even worse, making excuses for every thing that kept going wrong with my health. Go to the doctor and take a pill. That will solve the problem, or so I thought. I wanted solutions and looked for any reason or rationalization for a problem. Finally I couldn’t take it anymore. That COPD diagnosis with no history of smoking or genetic causes totally thru me. Ok, maybe the kidney disease was from so many years of medications. Oh no, there I went again making excuses for all that was wrong with me. Finally had pulmonary stress test and BINGO, cardiac problems. Okay, probably some other underlying problems but that’s to come. Now I needed to fix my heart. Atrial wall was aneurysm and right heart was in failure at this point. So much for my murmur! But EKGs normal and heart looked good on X-ray. Wow, I guess my body was willing to do just about anything to keep going and sadly so was I.
Okay , enough off topic. Back to day of surgery. TEE( tranesophageal echocardiogram) done week before surgery and didn’t show correct size of hole but lots of other bad heart problems. Two choices, Amplatzer Septal Occluder or sign up for heart transplant. Okay, cardiologist must be kidding, of course went with Amplatzer. Incision in groin under anesthesia with cardiac catheterization also done. Had trouble plugging hole due to large size, how did they miss this large egg shaped hole that was causing so many problems? Thank goodness Amplatzer staff present at surgery because took three tries to plug that sneaky hole. Horrible headache upon walking up but no pain anywhere. Really bad headaches continued but no surgical pain. Even groin incision required a little TLC from hospital staff in ICU. Like I said, easiest surgery. No chest incisions, so can’t help anyone there. Just remember, make sure you see CONGENITAL heart defect cardiologist for this. If interested email me at email@example.com because this can be very scary. I can mail or call anyone who has concerns. I don’t know all the answers but know we are all different. Pain, illness and even treatment will vary from person to person. Just because it wasn’t found or treated in infancy doesn’t mean anything. No matter what age you are or what symptoms you present, the only person in life to try and fix a problem is YOU. Linda
Oh yes, in addendum. not very smart with iPad. Signed into site and now have new email and password. It appears I am always on this site but just afraid that if I sign out won’t remember to how to sign in. Some of us are just illiterate on computers and learn by mistakes. My grand kids would laugh at me but not all of us are born knowing how to use electronics. Sorry but TVs were black and white only and to change a channel you had to go directly to the tv! Whoever heard of a remote, much less only three channels to choose from! Take care, Linda
I just wrote you a page, and needed to edit some spelling, and instead of it being saved, it went off into cyber space somewhere, so lets begin again! BTW, as you can see, I'm not exactly Bill Gates on a computer either! ha!
Before I forget to tell you, it is not a good idea to post your personal email account, phone numbers or addresses here, I had a member on the Sjogeren's Syndrome do this and she was bombarded with spam. So just go to the top right where it says 'options' and hit the edit button. just like I did, but hopefully your post will actually be saved! Remember, we are constantly plagued with spammers trying to join our groups here, we work very hard to keep them out, but realize that they can read the discussions without joining, so just a word to the wise. I work with Ben, Scott, dancermom and several others on the 'mod support team', so hear about these kind of things constantly.
Oh, yes, I am all too familiar with the stigmas that the medical community attached to Fibromyalgia, as I also have it in my diagnosis list. I was also a fibro moderator for a couple of years. I had to resign the position when my mom fell and broke her hip, now there was an ordeal, but we got through it! When I came back, dancermom asked me if I wanted to moderate, and gave me a choice of going back to Fibro or concentrating on several of the smaller groups that needed a moderator, or a little help in some way. So here is one of the many groups you will find me. This is a great group of people and it's such a supportive community!
The best way I can convey what I've learned about Fibro briefly, is to say that it's a 'stress response'. therefore it was actually CAUSED by something else, a trauma, an illness, an extreme allergic reaction...
My Rheum tells me that yes, I do have Fibro, but it's the least of my problems, and was mostly likely caused by the chronic pain of the Psoriatic Arthritis, and the car accident that seemed to kick all of this off and into high gear!
I have chosen to bring my response back out onto the boards, from our personal pages, as I think it may be beneficial to the group!
Hi, glad to hear there are more of us who keep doing but really don’t know what we are doing! Didn’t really know some things. To trusting for my own good. A different generation. Hate not felling well but I’m probably the last to admit it. I’ll keep pushing until collapse and even then, I’ll hide that! Always taught illness is weakness, not illness is ill. I took the very long way to come to this point. Got more info? Thanks, Linda I do spell check on iPhone while typing. I have lost many messages over time and am terrified to touch any other buttons but send.
You are understandably upset that your heart problems are being dismissed, way laid, and not addressed first and foremost. Ithink I would be at the point of asking my heart specialist, and certainly the ER staff, if they would please just treat your heart first and foremost, that fibro is, like my Rheumatologist told me, "The very least of your problems". Now don't get me wrong, I'm not trying to perpetuate the stigma, or dismiss this syndrome, but the heart, and other vital organs like your kidneys, always have to come first! This is just unnecessary aggravation for you!
Now, let me ask you this, is there a way to talk to your heart specialist about this, and get some things cleared up, I think maybe it needs to start with him, and hopefully it will follow through to the other medical professionals, especially the ER staff.
Linda, please don't think me a know it all, as I know the very least of anyone here about ASD, but know that I'm on your side here, and think it's time you ask for better care, or look elsewhere for it. I know I'm probably sticking my neck out here, but it's what I feel from the post here, the note on my page and looking through your profile and discussions.
Sending my good wishes for health and happiness,
I understand the pushing and the idea that illness is weakness, but illness does make you weak, not because you are not strong, but because you are ill. It's always a tough one to swallow, as we have always had to push, and push, and eventually we go through one crash after another, and it gets more difficult to recover from them!
I know that everyone says to pace, but sometimes life just doesn't come at us that way! Seems like sometimes it comes all at once, full force!
I'm probably closer to being in the same boat as you than you can imagine, just had to have more MRIs done today and chances are good that I am off to one of only seven highly specialized neurosurgeons in the world for evaluation! I'm telling you, it's always something else!
I know it's frustrating and sometimes a good rant is what we need to clear our head out, but then we have to pick ourselves up, look up, and keep trying to get to a better place!
Take good care of yourself, my friend,
Hi SK, have no idea what I’m doing in my messages but must be something right. Neurologists? Good luck. Raynaud’s ? Got that. In fact, that was a big signal for me I was getting sicker. MRIs take long and add contrast, what a mess. Take a Cat Scan any day. Thank you for taking time to respond to us. Funny, I do a lot of ranting and or venting about illnesses in general. No one asks or wants to be sick. We all deal with it differently. Those like me often pretend to be well for the sake of others and only allow those very close to see our illness or even worse, try to hide it from everyone! I talk fast, answer my own questions and rationalize every symptom! Making myself and others like me, our own worst enemies. I have a feeling your symptoms would make my toes curl, just like if I went over my history you’ll feel the same. Sad that looking better than you feel negates good care. Silence isn’t golden. And speaking out or demanding care is often met with bad reception. Here I go again, good luck, Linda
Linda, you sound like my kind of character! I'm sure we could get into some trouble together! My traveling days are over, but if that changes and I get back to my beloved Gulf of Mexico, I'll look you up in Port St. Lucie! I have been through there!
Why is it that nurses sometimes have the most difficult time getting Drs to listen to them? I have noticed that throughout many of the BF groups! Hope they can get you straightened out! I bet you were a great nurse!
Hi SK, Yes I’m a barrel of laughs! Mostly giving great advice with good knowledge and background but when it comes to me , I always try to out talk, out explain and definitely excuse all symptoms! Never helps when you are a nurse. I respected other nurses, some how though it hasn’t worked to my benefit. Almost like I know too much so ignored. It works both ways, some of the medical community will be threatened by you and some will listen. The problem is not to self diagnose. My personality played a big part in this illness. I hated to rock the boat! No, I never wanted to be ill but I certainly did everything in my power to try to believe my doctors. My long term symptoms should have raised flags and now in retrospect, I see a lot of past issues that pointed to a large ASD. As I have said before, why it wasn’t repaired earlier is beyond me, but I so wanted a better diagnosis than “housewives syndrome”, anxiety, or it’s all in my head! I was willing to take any diagnosis and pills for treatment! And really excited when tests came back positive! That is the past and now I’m working forward. Of course with an occasional “if only” or “what if?”. Time will tell and hopefully my story and those of others will be a teacher for all of us. I enjoy living in Florida but it’s really hot and humid here. Sorry you can’t travel much. Company is always welcomed except they are on their own. I provide direction from my bed! Take car, Linda