3_2_1

Not so long ago, I was chatting with little_lamb about how 'omg nobody understands heart patients but heart patients!' (ok, to be honest, I was doing most of the whining but whatever) and eventually it was suggested that a friending meme here might be a good idea.

Meeting people is fun, right? And sometimes it's nice to have somebody who understands.

Without further ado, here is a friending meme. If you've never done of of these things, it's easy-peezy! Just copy the stuff in the text box, past and fill out the little survey in a new comment. All questions are are optional, of course. Meet, greet, be merry and *friend*!

<b>LJ username:</b> <b>What should we call you:</b> <b>My journal contains mostly:</b> <b>In my free time, I like to:</b> <b>My heart condition is like this:</b> <b>Any last words?</b>

tksgrammie

Thank you Anne, for your wonderful words about Jara. I know how much this site and All of you meant to her, she even wanted to have a day when everyone could come together, meet and finally put a face to the hearts she became close to. I also know how she felt about you with Cerian,,She truely cared and loved you!! She would tell me about everyones heart, their symptoms, and how much she loved you all just from talking with you on here! We may not be Dr.s, but we've all had similiar things that have helped others get treatment, diagnosed or surgery.. Whatever the need was, we were all here for each other offering our friendship, support and so much love! That's where your "IMPerfecthearts" all make U- I M Perfect!" And everyone, Every Heart/ soul here, is.... Perfect! Don't ever let yourself forget that. Jara said it to me thru-out her life, and I've always known it, for getting you all here, talking baout your defects, surgeries and life in general. She should have been a psych major,or maybe she just had Esp, extra special powers, to just know people, as she had a wonderful way with words, and knowing without even really meeting. She knew the inside, heart n soul..and how her feelings were regarding her own life w CHD. Wish she had time to learn about her own sister n nephew having heart probs, but they weren't diagnosed til after she left us. And, I've had 2 silent mi's since as well. Guess,All of the stress and my cholesterol got me. But, I'm okay....<3
I hope you all keep using this site, I wish it had a paid account, so I could have put things on, done more with it, but were doin ok just the same!
I luv you all, please feel free to add me, or send me your name so I can add you. There's so many Newbies I've missed talking to, as well as my old friends. And some have left the site, so I have to remove them as friends. I'm still learning how to do that.. Lol. I'm not the computer wiz like jara was, but she taught me a good bit. Lol.
Take care, hope you all have a wonderful week and holiday weekend,,, I will make it a point to get on every day even just to say Hi.
. From my heart to yours,
Dara (Jara's mom)<3
Chdmom2@yahoo.com
http://www.imperfecthearts.com. Jara's Journey!

cinkah

Just stumbled across this group and thought I should join :)

I'm 25 years old and last year I had open heart surgery after only just finding out I was born with ASD (Arterial Septal Defect).
I tried to tell doctors for 2 year previous that something was wrong, firstly being told it was 'stress' (I work in an office lol) and given beta blockers to settle down my heart. When that didn't work I was put on a heart monitor for 7 days and a blood pressure monitor and then told that everything was normal, I should just stop any stimulants (caffiene, alcohol). I did that, even though I thought it was odd because all my friends could still do these things at our age. I knew something still wasn't right and was very stressed/worried about it and started going to different doctors and emergency hospitals just to be told it was the above - stress, stimulants and even that it was psychological.
It wasn't another emergency visit when they FINALLY recommended my to a cardiologist where I had an Echo, ECG and done a stress test. I managed to run the whole 9 minutes on the stress test and got the okay from the doctor - to go home and have a coke to celebrate as I just have a heart that beats funny.
The next day that same doctor rings me and tells me not to do anything that I don't have to - walk, chores etc as he got ehe echo results back late and had found a hole in my heart - "But not to be too worried, come back in 3 weeks when I get back from holidays'. Not what I needed to hear!
Anyway more tests later I was told it was going to be keyhole fixed and the next thing I know I'm on the waiting list for open heart surgery as it was too large for keyhole - I was also expected to have 6 weeks off work from a job that I had only been at for 3 months. It was probably the most stressfull point in my life to date but can say that the process from before to fixed was very good.
Its been 14 months since I had the op done, and while I am still coming to terms with the fact that I may never be back to what I was before symptoms started I have improved 100%. I no longer get constant heart palpitations, a racing heart beat for no reason or am constantly short of breath. I have a checkup this November and am expecting to be taken off all medications (which is only 25mg of a beta blocker for heart regulation).
One challenge for me was the fact that I was only 24, and in a recovery ward & cardio rehab with people at least 30+ years my age. I was treated like a test subject as alot of these things get picked up at birth now. I had trainee doctors, researchers, patients and their family all look at me like I was in the wrong place, which I guess I would too if the table was turned.

Well I think I have gotten enough off my chest, I think this a great group and idea. If anyone would like to add me you're more than welcome to and I wish everybody the best health possible :)

Jess

tksgrammie

Hello everyone! Welcome to IPH on Lj..I'm Dara, otherwise known as tksgrammie or Jaras mom. Jara is the wonderful young lady, my dghtr, who devised this community. I've not been online for awhile, but I do get the msgs an every time someone puts a post on my cell. So, I haven't forgotten U, guess u could say, I'm watching from afar, like Jara!!
Well, my grandson Trevor, 7, has Bicuspid Aortic Valve defect. We've known for 3 yrs, since Jara passed and he got diagnosed shortly after. Now, he has had a bad stomach flu going on, diarrhea to say the least, stomach pain, and off n on fever, sometimes spiking to 104. Sunday am, he went to the br,and started to pass out 2xs, my dghtr, his mom, Rhianne caught him. It lasted for approx. 30 seconds ea time, then jus lethargic and then Tada-ok! She ran him t the ER, which of course-haha-they jus said oh stomach flu, gave an emetic an sent him home!! Don't we all know that story?? Well, yesterday, Rhi took him t his primary. Today, he has to go t c the Cardiologist, have Ekg, echo and a holter. We are wondering why now after all this time is he having VasoVagal syncope? The dr said it could be heart related, or neuro-meaning epilepsy! I'm wondering if its SADS related, being that sudden fainting is a symptom of sudden arrythmia death syndrome-Sads. Since that is wat took Jaras life,it bothers me , so testing also is going t be done.
Rhianne has Mitral Valve prolapse, she's been fine. No meds, nothing. I've had 2 silent MI's since Jara(07), but other than that, I'm hanging in there.
I hope u all are doing the same, be strong, be aware and educate yourself. Remember, Jaras 11 easy questions r here for you to use, should u need them.
I luv you all, think of you all often, and miss talking with many of you. Its been 3 yrs, jaras hubby has moved back to Pa, near his family and of course closer to her. I miss that part of her life. But, for now, guess we have our hands full again and taking another one of Jaras Journey's, but with Tk!
From my heart to yours, Dara <3
Chdmom2@yahoo.com...
http://www.imperfecthearts.com, Jaras Journey of Heart.

quickening

Hey all,

I just wanted to swing by and say "thanks" for the advice on cardiac catheters!

I had my PFO closure done on the morning of Sept 2nd. I remained in the hospital overnight and came home on Sept 3rd.

I had catheters in both legs. My left leg had the bigger catheter and I had some bruising but not bad. My right leg has been a bother. I ended up with infected hair follicles around the cath site. Not knowing what it was, I had made a trip to the ER last Friday night where they cleaned it out and confirmed it was only infected hairs. They have been a giant annoyance. They said they could take up to two weeks to heal which seems to be the case. I miss wearing normal undergarments still!

I was awake for the procedure. It was very neat. I cannot believe how comfortable I was. My DR discovered that my PFO was actually HUGE once he got in my heart with the sizing balloon. The hole that they had IDed before with a TEE was just a small part of the defect. My defect was very large and fenestrated. He had to use a larger Occluder to close it but it was still doable.

His biggest concern was for me to let my legs heal before I go running around. Since the hole was so huge, he figured that I would notice right away. And I did.

My whole life (this is a bit TMI), I thought it was normal for your vision to blur when you went to the bathroom. I never knew! I also have had blurry vision which has confused eye doctors because my eyes tests 20/20 separately. That has cleared and everything is so crisp and clear. Also, so far, no migraines or bad headaches. I also made it up my first flight of stairs yesterday with NO problems (huffing and puffing). It is like having a new body.

I return to work next week. I see my Cardiologist again in that first week of October for another Echo and consultation.

Thanks again! The cardiac catheters were not bad at all! The bandages were worse!

quickening

Hey all,

I swung through here awhile ago and have been lurking a bit.

I have had an Echo, Holter, and just had a TEE this past Friday. Thankfully, I don't really remember the TEE because of the sedatives but I felt like I had swallowed a baseball bat the next day. The TEE was also my first time on sedatives and it was not a bad experience.

I am a 34 year old female. I have had symptoms throughout my life but, until recently, most doctors blew off my symptoms as stress and a misdiagnosis of asthma. The past year has been tough and physically draining as I have a physical job. Palpitations, flutter, and fatigue combined with a great new set of doctors finally got me the correct diagnosis of a small ASD. Oh, the flutter is not atrial flutter but the DR thinks it was just me sensing the reverse of flow as I only had it after coughing fits or a lot of heavy lifting. Nothing showed on my Holter.

Since my health is going downhill, I will be having this closed via Cardiac Catheter. I have an excellent Cardiologist who is very highly recommended from some of my cardiac nursing friends. I lucked out being assigned to him. My cath ASD closure will be done at the Norfolk Heart Hospital which also has a wonderful reputation and a mammoth amount of resources.

Anyways, my questions:

Has anyone here had an ASD closure via catheter or a child who has had ASD closure with catheter?? I am also interested in any information from those of you who may have had a Cardiac Catheter but for other reasons!

I am curious about the recovery side.

How long before you or your child felt good enough to walk around the house and do things without assistance?
How long did the incision(s) take to heal up?
What kinds of clothing may be comfortable (with regards to the incision in the groin)?
How long do you think is a really good time period to stay away from work so you do not overdo it? (I have taken off 14 days)
Any side effects or unusual experiences that the doctors didn't mention or give you a heads up on?

Also feel free to volunteer anything else! I appreciate all information.

I go in on September 2nd at 6am. I stay overnight and am released on Sept 3rd.

Thank you once again! I am both nervous and excited since I have felt like crap over the past couple of years. It's nice to have the internet nowadays to find more personal accounts of things like this and not just the bare medical jargon!