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Feeling so awful from my ASD


#22

Immediately after sugary the tightness in my chest and the difficulty breathing went away. I would still get winded walking or just getting out of bed. But that was all part of the recovery. Most importantly I could lay down and breath!
I did have some chest pain over the course of recovery. When my doctor wasn’t finding anything wrong with me that is when I found this group to get other peoples opinion. You can read my post here.

However, since I wrote this post I have not been experienced any of these symptoms. Maybe it was just all part of the recovery? The only symptoms I have today is sometimes at night, when I am laying down, I have a slight wheeze in my lungs. My lugs or chest don’t feel restricted or tight and it is only when I lay down. Sometimes it sounds like a bird is churping. My pulmonologist thinks it may be acid reflex…but we are still working to figure that out.

About feeling nauseous, yes I definitely had all those symptoms. It was all related to my ASD. Because of the hole there is a lack of oxygen to the blood, which could cause you to feel nauseous. And the cough, sometimes I would be coughing so hard I would throw up. You should tell your doctor about all these symptoms. Hopefully after your TEE they can get you in quick for your repair!


#23

I hope that will be the case for me too :slight_smile: It will be amazing to be able to breathe again! Or yeah, tecnically I can breathe haha, but it’s gonna be amazing to actually have the feeling again of being able to breathe normal and not have any difficulties, people who never have suffered from breathing issues don’t know how hard it is.
My boyfriend is an angel with me in this and he’s wonderful and is really there for me, but sometimes when I get a really hard time breathing he tells me just to relax and tells me positive things but I don’t think he understands how hard it is to handle, it is f*ckin horrible not being able to breathe properly, now I don’t get as much panic since I know the cause of it but still.
It makes it hard to enjoy things in life right now and concentrate on school etc.

Yeah I don’t expect to feel 100% perfect immediately after surgery :wink: But a little pain now and then (depending on wich surgery I will have to do of course) and to feel dizzy from time to time and maybe some heart palpalations directly after surgery during my recovery I can take and handle without a problem.

I spoke to a doctor at my hospital yesterday and she said that after they know wich kind of surgery I will have, I won’t be waiting long for surgery to happen. Yeeey :slight_smile:
I know that my health is the most important thing for me right now and to have my surgery and get well is the no 1 thing in my life, I can’t help but to stress out about school for example. This is my final year on my health and social care education in school and there’s sooo much to do, and due to my illness wich appeared early fall I haven’t done much school work. So I have a lot to catch up on and more to come when spring arrives, so I just want to be done with my surgery and come back to my life so I also can focus on school again.
That’s another reason why I really, really hope for the catheter closure, so the recovery isn’t as long and I can be back to school quickly.
As I said, of course my health is the most important and yes I can do school stuff later, but it won’t be fun if I have to go another year or semester in school because of this. I have already missed out on school when I was younger so I just want to be done with it and start making myself a career and work…gaahh.

Haha sidenote there :smiley:

When I was at the hospital yesterday and spoke to the doctor I mentioned that I was feeling extremely naseous, she took some new blood tests on me wich again came back perfect and she also tested how much oxygen I had and it showed between 98% and 100% so it was great, sooo I don’t know…she gave me some pills wich didn’t help much at all so guess I just have to live with this until surgery if it’s the hole that’s causing it, or if it’s just stress symtoms, I don’t know :slight_smile:
Now it’s just 2 days until my TEE, I’ll keep you posted about it afterwards :slight_smile:

@tps21491


#24

And I hope you and your pulmonologist find the reason for your wheeze, is it always when you lay down? Take care :slight_smile:
@tps21491


#25

Now I’m done with my TEE! It went pretty good, I was nervous before I went in but the guy and the girl who was doing the test were really nice and friendly and seemed to have a lot of experience so that helped me out a lot. I also got drugs to calm me down and that helped as well :wink: I didn’t get so much that I was totally knocked out haha, but enough to calm my nerves and help me relax. He asked me if I wanted some more but it was okay.
The part wich was the worst about the TEE was definitely the numbing spray wich they sprayed in my throat, OMG that was horrible! To start with, it tasted like shit, and second the feeling when the effect started to kick in…I was about to have a panic attack I felt, it felt as if my throat swolled up to double size and I couldn’t swallow properly and couldn’t feel my tounge, but the doctors calmed me down and said that I actually can breathe normal, it’s just a feeling of not being able to cause of the numbness. So I tried to think about that and take deep breaths and that helped a bit, but it was still horrible.

When he tucked the tube down my throat it also felt horrible and very uncomfortable, even though I was numbed from the spray. But when the tube was down it felt a bit better, but it was still a bit uncomfortable when the moved it around to get good pictures everywhere, and in the end I started to choke and I almost threw up but we were finished by then so I took the tube of myself out of panic haha! And it was so gross afterwards.
But it still went very well and it didn’t take long, and now I’m still a bit groggy from the drugs they gave me haha :wink: The numbness in my throat dissappeared kind of quick so that felt great.

From what they could se…it seems like a catheter closure will due! Yeeey I’m so happy about that! They will look at my pictures more this afternoon and also send them to my cardiologist and the surgeons at the hospital where I will have my surgery, but he was very shure that a catheter closure is the option for me, that was such a relieve. They also told me that after they all know for shure they will scheduele me pretty fast for a surgery, so I really hope I will have my surgery before Christmas. So I can go back to school after the Christmas break and be back at normal as soon as possible.

I really start to see more and more light in the tunnel now :slight_smile: And I really appreciate you guys for replying to me and answering my questions and thoughts, and I hope you’re doing well as well. I’ll keep posted when I know more, like the date for my surgery etc.

Have a great weekend!

ps. I’m sorry for all the wrong spelled words haha, I hope you still understand what I’m saying! Swedish girl here ;D

@tps21491
@Bmalaczynski


#26

It’s getting closer and closer for me to have my surgery. I will talk on the phone with the hospital where I’m about to have my surgery on monday, and then find it how long I’ll have to wait for my surgery and also find out for shure if I can have the catheter closure or if I will need open heart…I really hope the cardiologist who did my TEE was right and that catheter closure will due :slight_smile:
I now have a medication to ease some of the symtoms until my surgery, it’s supposed to help with my difficulty with breathing and it’s supposed to ease the pressure on the heart caused from my ASD. I have just tried it out for a few days but I can feel a slight difference and it’s a bit easier for me to sleep now and be able to breathe more normal, but only the surgery will help to 100% so the medication is just temporary.

I really hope to have my surgery before Christmas but I doubt that will happen, they only perform emergency surgeries during Christmas time and the holidays so I think I will have my surgery some time in January. At least in the beginning of the next year to come now :slight_smile: BUT if I am very lucky I may have my surgery at the beginning of December before the holidays starts, that would be amazing, so I can recover over the holidays and hopefully come back stronger than I’ve ever felt the next year.
But I’ll find out more on monday :slight_smile:

Take care and I hope you are doing well!

Also have a question for you @tps21491
You said that your doctor told you that you could wait longer for surgery and that would be no problem, but you managed to have your surgery as fast as you wanted it to be. How did you do that? What did you tell them?
For example if they scheduele me for surgery in February but I want it done sooner, what can I do or say?


#27

Hi! If you’re reading this, I would love to know how your surgery went! How are you feeling now? Have you improved since surgery?
I myself am schedueled for surgery in February, but they have put me on a special waiting list, so if a patient calls them and say they can’t have their surgery as schedueled they will call me so I can come instead, and it can be at anytime! :slight_smile: They also told me that they are doing everything they can to have my surgery sooner than February because of all my symtoms, so I’m very grateful for that. I will have the catheter closure, that was such a relieve, that I won’t have to go through OHS :slight_smile:

Take care!


#28

Hi @LenaRebecka!! This is all great news! Sorry to be MIA, my new job has consumed all my time since I started! Anyways, so happy to hear they are able to do the catheter closure! Your recovery time will be SO much easier. And it sounds like the medication is helping ease everything - February will be here in no time!

My wheezing is still a mystery. Only happening at night when I lay down. I have an appointment with my cardiologist next week, hopefully we will be able to figure out a new game plan then. I still have an ache in my heart too - nothing significantly painful but the feeling has never stopped since surgery. Not sure if this is normal or what (that will be another question for my doctor).

Keep me posted on your surgery - hope you are still doing well! ALMOST THERE!


#29

Hi there! :slight_smile: Oh no worries, I understand :wink: So glad to hear from you again, and glad to hear you are feeling good besides from the occasional pain and the wheezing, hope you can have some clarity in that matter after your meeting with your cardio.

And I got news :slight_smile: I had my catheter closure this Wednesday the 18th actually! I got a call in December and they told me their waiting list weren’t too long at the moment so if I wanted to, my closure could be scheduled earlier than February, so I had an appointment the 18th. My closure went great! Very smooth and without any operative complications, my hole was finally measured to be 19 mm and they used a 20 mm Amplatzer device to close it. I was discharged from hospital the day after since my day after X-ray and ECO looked great.
My surgeon told me the device is in perfect place and my heart size has already shrunked in size, and no fluid build up around the heart or anything strange so far.

I’m so happy to have it over with and done :slight_smile: I feel like I can breathe better, still have some chest pains here and there but I think it’s anxiety as well, since the paint went away when they gave me calming meds. Now I notice that I’m very tired and a bit naseous, but maybe not so strange since I’m only 3 days post-closure :slight_smile:

He put me on blood thinners for 6-12 months and I will have follow up ECOs here at my home hospital with my cardiologist. They will give me a call when it’s time for check-up but he told me if I have questions and want a ECO done at anytime if I’m worried about something I can give my cardiologist a call and he sets me up for a ECO.

So summary, breathing is a lot better (not 100% yet, but I think I’ll get there), my worst palps and extra heart beats has settled A LOT, I only have a few rapid beats here and there wich he told me is perfectly normal as the heart is healing and adjusting, still some chest discomfort and some pain (wich I now believe is mostly anxiety in my case), still very tired and dizzy but it’s better than it was like when I woke up from being under anesthesia (wich went great, I actually really enjoyed being under general antesthesia haha, it felt so calm…no anxiety when they put me to sleep at all). Now I just hope it’ll get better and better as the days and weeks goes by…he told me I’m allowed to start exercising 1 week after closure, but I think I’ll start easy with walks etc and then speed it up as I feel better, but not go all in immediately hehe :slight_smile:

@tps21491


#30

Did you have surgery yet? My breathlessness and and tachycardia are awful pre and post op. But i also had pulmonary emolims amd mine took 2.5 years to find!!


#31

I would definately see a cardiologist right away. UN repaired ASD can cause stroke and heart attack in the healthiest and youngest people! I was diagnosed at age 49, my ASD went untreated all those years, I was told I was very lucky not to have had a stroke or heart attack. Before they found it. It was found becasue I started to have shortness of breath and heart palpitaions. Please seek another opinion :slight_smile:


#32

Hi erniebuddy ,again ,don’t know if my story is posting but good to vent anyway ,before I die ----- started in 2010 ---- on a pipethreading machine ,went pressure sensation started radiating from my heart outward ,thought the angel of death was coming ,supervisor took me to emergency Michael e debakey VA hospital, finally brought my pressure down ,echocardiogram test ,with air bubbles test ,went straight across ,ASD ,I learned I had atrial septal effect ,VA just looking at it no attempt to fix it ----- since have had ,sudden heart pounding,arrhythmias, palpitations ,tachycardia ,----- received my disability from SOC Sec, guess my next step go to Baylor college of medicine, cardiologists ,get a cardiac MRI ,see what’s really going on in there ---- love the VA ,but every time I go they just give me a bandaid ,n tell me to comeback in three months ,getting me a medi alert button just in case I go down out here in the boondocks ,maybe because I’m not a general ,just a spec4 ,they won’t fix it ? , veteran ,cold war, 100 miles in East Germany, Berlin brigade, Berlin Germany, 1st infantry ,big red one ,ft.Riley Kansas , just in case in die put this on my headstone ,in Arlington national cemetary ,shout it loud because Arlington cemetery is a long way away !!!