PFO (whole in the heart) & blood clots

Heart health and blood vessels
1

Hi everyone 😊

I have PFO (whole in the heart), & in most cases (as I am told) people who have this, have no symptoms, I however do. I get severe chest pain, dizziness (with fainting), nausea, & weakness/exhaustion. My doctor has me on metoprolol for the irregular heart beat... My question is if anyone knows anything about this/ or has this too? I have heard that it can cause blood clots, which lead to strokes. I was wondering if I should talk with my doctor about going on a blood thinner... if anyone has this or has something to offer me, I would gladly appreciate it... ps: I also have sjogrens, neuropathy, raynauds, uctd, barrettes esophagus, asthma, migraines (if this helps)

thanks

2

Hi, I don't have a PFO, which by the way is not technically a "hole in the heart", but rather a valve that dosen't close as it should after birth.  I  have an ASD, which is not

a valve, but an actural hole in the septium that separates the left and right atria.  Both of these conditions have the propensity for throbus formation that can cause serious consequences, therefore a patient is oftentimes put on a blood thinner to reduce their risks.  I was on a blood  (warfarin) thinner for a period of time, but other health issues forced me to be taken off that drug.  I take aspirin now, have

been taking it for a number of years, and have had no issues with thrombus formation.  I have an autoimmune disease as well as pulmonary hypertension, reflux , but thankfully, no migraines.  I wish you good health.

3

Hi Scotgal,

I must have misunderstood the PFO thing, because my cardiologist said that I have a hole between the arterial valves (that usually close at birth) & he mentioned PFO (must mean PFO as well?!?!) He wanted me on aspirin but I cannot take aspirin, I go back two months from now. He is trying me on the metoprolol to see how that helps me with the irregular beats, so far I have had the meds increased three times. If I do not feel better, he said he will have to take other steps or try other meds... I was kind of concerned with the blood clots because I have been having pains in my legs, but I have so many other pains from the autoimmune disease & other problems, that I am not sure if the pain is from those or do to possible blood clotting... thanks so much...

4

Physicians are obligated to explain any and all abnormalities that they are aware of in terms (layman) the patient can understand.  There are not arterial valves in the heart, but there is a foramen ovale that remains open

while the fetus is in utero, after birth, within so many hours that valve is supposed to close, because now the baby is using it's lungs to oxygenate it's body.  When the valve doesn't close, it is then termed a PFO, commonly referred to as a patent (open) foramen ovale.  When people scuba dive they are more prone to embolisms or compression sickness if they have a PFO, and are usually advised not to undertake scuba diving.

In every other person with one of these, there should be some consideration given to blood thinners.  If you get a clot in your leg, you'll know it, in addition to pain (severe), you'll have an elevated temperature,

and the biggest risk with clots in the limbs is the potential for them to travel to your lung, where if they're large enough to block your pulmonary artery,

you can die without immediate medical attention.  Hope I've been able to explain things a little bit better for you.  Take care of yourself.

5

Yes you have helped, I did have a blood clot 4 years ago (stem of brain) & I was on blood thinners for it... I pass out a lot with extremely bad headaches. The doctor first thought it was seizures but now believes they are due to the heart... I haven't had very good doctors in the past (not ones to explain things) I have been real sick, with more chest pain then usual, he thinks that the autoimmune disease is causing more problems for me... thank you for your help... take care 😊

6

I had a stroke as well, back in 2004, lost my vision in one eye, but my vision is all right now, I also suffered expressive aphasia ( using the wrong words)

for a short time.  That's also resolved now.  Pysicians don't always explain things as fully as they could, probably because of time constraints.  I don't know how long a typical office visit is there in the UK, but here in the US

a patient is lucky if they get ten minutes.  For first time visit you might get

45-60 minutes.  Nurses typically spend more time with the patient than the doctor, what with taking bp, pulse, temp, going over your meds, etc.,,  I had continual chest pain back when I was 39-40, but that was when I was still working and under a lot of stress.  I have been on disability for over 18 years now.  I would love to go back to work, but I'm sure I'm never going to be well enough.  Your autoimmune disease could most definitely be causing a lot of your issues.  I have rheumatoid arthritis, but my joints have not eroded, but I just underwent a pet scan back in April because of

pulmonary nodules all over my lungs.  Thankfully, they're not cancer related, but they are related to the autoimmune disfunction.  I have to have anothre scan in 4 months to make sure they're still resolving.  We all have our imedical issues, don't we?  We will rally, you will be all right, you are a good advocate for yourself, and that's a good thing.  Keep in touch, and never stop asking questions?  I'm glad I can help.

7

It seems like you have been through it all, hope all goes well for you... I live in the US & I have a neurologist, rheumatologist, gastorontologist, cardiologist, optometrist & a primary physician. I cannot get these doctors to agree with each other, which makes it hard... they give you 10-20 min. & you feel like you can never tell them everything due to time restraints... thank you again... take care 😊

8

Wow. You have both been through a lot. I really hope you both have better days ahead and are able to manage everything. 

What really bothers me is that you have doctors who don't spend quality time with you. That SUCKS. Make them take time to explain and ease your mind. I do. However, they do all act like PFO with ASA and TAA is no big deal. I was recently put on aspirin after PFO confirmation. Have migraines with aura. Controversy over relationship between migraines and PFO. Not sure what to believe. 

Best site I use is same my gastro doctor uses. www.uptodate.com. Worth paying for. 

Praying for you. 😊

9

That's a shame "they" all act like it's no big deal.  I'm here to tell you

if they had such a condition and developed heart failure, and could no

longer work, then it would be a big deal, a big "economic" deal.  I have

no idea what my BNP level is since I had the last test in March.  I just

hope it stays right where it's at, or better yet, drops to a normal level.

 

10

Hi annc999 

thank you... I just cannot find a good doctor. I was suppose to have an appointment with my cardiologist a little over a month ago, the day before my appointment his office called & said that he will be on vacation & they need to reschedule me (I understand they need a vacation too) but they cannot get me back In until mid November... I told the woman that I am not feeling good, dizziness, severe chest pain, numbness, etc... she said, well if it gets worse go to the e.r or urgent care... I was floored!!! A vacation is one thing, but waiting months when you have so many problems is ludicrous... they don't care about you, your a number & a dollar sign that's it... take care 😌

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Are you in the US?

12

Hi,

yes I am... that's probably the problem...

13

Brenwag68, you need a new doctor! You have a lot going on with your body and you need attention. This makes me angry. So easy for anyone who doesn't have these issues to brush it off. It's SERIOUS and you deserve better care.

Generally speaking, The Cleveland Clinic is regarded as the best place for heart surgery. Not convenient for people not near there but worth it from what I hear. They will even do consults. Also, Emory in Atlanta is good. Look up Dr. Chen. 

Please keep us posted and get an appointment ASAP. 

14

Hi brenwag68,

I can't believe you have to wait that long to see a doctor, do you live in a small town?I live about 60 miles from NYC, and I can usually get an appointment pretty quickly, especially if my primary "steps in".  It's called professional courtesy, I'm 

sure you've heard that before.  One phone call from my primary, and I have an

appointment the next day, I call that a great outcome, and a fast response time.

Yes, you can "shoot a clot" with PFO's and even with ASDs.  But with ASDs, which

are true birth defects, whereas PFO's are not really a birth defect, because it's 

simply a valve that fails to shut after birth, thus the foramen ovale remains open.

I've met people who went on blood thinners and some have even had these valves

shut through a procedure.  Atrial septal defects, on the other hand, occur in early

fetal development, where heart tissue fails to develop in the septum leaving a hole.

Some people go through life never knowing they even have one.  When they impact your childhood (failure to thrive) as mine did, you have reasonable height, but your weight is never commensurate with your height as it should be.  At nine

years of age I weighed what my 5 year old granddaughter weighs, 45 lbs. A good

weight for a 5 year old, but not for a nine year old.  I wasn't really low birth weight

either, considering I was a month early.  I weighed 6lbs 5ouces, but after a year,

I started to look thin.  Surgeries for these defects were in their infancy when I was

born, and a lot of the early surgeries didn't have good outcomes.  Considering that

90% of all people with uncorrected ASDs are dead by 60 (usually as a result of heart failure) I feel lucky to still be alive at 64.  Some of the remaining 10% have 

even lived well into their 80's and 90's, but that's usually because they never had 

a serious one in the first place.  My mother, who is 90 is one such person, her ejection fraction is somewhat better than mine, which probably means her ASD

is not as serious, otherwise she wouldn't have made it this far.  My sister who is

65 was always healthier looking than me, however she has had a bluish tinge to

her lips the last few times I've seen her.  She flies up to NJ every winter for a visit.

I'm sure she has one as well, but the cyanosis concerns me, because she never

had failure to thrive.  The most serious consequence with ASDs is, when the

shunt (direction the blood is flowing) reverses itself and becomes right to left, in

stead of left to right,  I'm banking mine is still left to right, otherwise I may not be

a candidate for correction.  When these shunts become right to left, such as is the

case with PFO's, then there is a great risk for embolus to the brain, causing a stroke.  I was on blood thinners over 20 years ago, but for a different reason; I was

experiencing atrial fibrillation, which is also associated with ASDs.  I don't like the

idea of blood thinners  if you were to fall and hit your noggin, you could bleed to 

death, before an ambulance could get to you.  I take 1 baby aspirin every day, that's it.  I certainly hope you get in to see a doctor soon, do let me know how you make out.  Take care

15

Hi Scotgal

thank you for the info... I live in upstate NY... My drs office said that if I were to have a problem go to the er immediately, they said that if I were to have problems in his office they would send me to the hospital as well, so I guess that is their answer... all in all he seems to be a decent dr that is why I am staying with him... when I was born I weighed 5lb & 3oz. My mother did not take care of her self, she did not even know she was pregnant until into 5mo of pregnancy, so I was deprived of a lot (I was born in 1968) most of my drs say that I am of healthy weight (5 foot 1inch & weigh 115lb - I weighed 111lb but my cardiologist felt it was too thin, he still thinks I am too thin for the health problems I have) I was having seizures but when he put me on heart meds, the seizures stopped, but I do get dizzy a lot & fall down often, hence the uncertainty of going on blood thinners but I am afraid of having a stroke, I have had a lot of strange incidents that may be warning signs of such... I cannot take aspirin, so that does not help me... I will be seeing him in November, so I will post what happens... thank you for your concern & care... I hope all goes well for you & your sister... take care 😊

16

Scotgal, I was disturbed about this statistic you wrote:

90% of all people with uncorrected ASDs are dead by 60 (usually as a result of heart failure). 

Where did you get that info and is an ASA considered as an ASD? 

17

I truly hope you get some help for your issues. You have been through a lot. 

This is a great forum full of folks who care, share and need others in similar situations to know they are not alone. 

I wish there was better awareness for all heart issues. As of a few years ago, I didn't know 80% of what I have AND things I learned here. 

Do keep us posted. ❤️

18

Thank you Scotgal & annc999

there is sooooo much I am learning on this forum that drs do not tell you... they act like "No Problem - Your Fine" & in reality your not.... You take of yourselves, I will keep posting....

thanks again

19

annc,

That statistic was from a medical journal, I would have to go back in

my computer history to find it, I only read medical journals or major

teaching hospital submissions from experts in their particular discipline of medicine.  That way, you know your not getting informa-

tion from a source that could have been submitted by anyone.  ASA

are nothing more than a "windsock", according to the first cardiologist

I saw.  He said it's just the way the atrial septum develops in the early

embryonic/fetal heart.  They can also arise from heart attacks, which

according to this doctor, was the explanation for mine.  The atrial septum is the thinnest tissue in the heart and if the blood supply feeding that area is interrupted for even a brief time, as happened during my coronary spasm, a septal scar can result.  It's been 28 years since that event occurred, and the scar still shows up on every

echo I've ever had.  The biggest risk with these ASAs, whether they

were an anomaly from birth or acquired is stoke.  This same cardiolo

gist told me I'd probably die from a massive stroke someday.  Talk

about being blunt, he'd take the prize.  That is not something I was

prepared to hear.  At that point I asked if there was anything I could do to lessen my risk, he said, " you can take a baby aspirin everyday,

that might reduce your risk somewhat". I"m not sure, at this point,

what concerns me more, my heart or my pulmonary function, which

I was told my forced expiratory volume is at 29%, and it should be 

about 100%. I never smoked, but because of the defect I experienced a lot of lower respiratory ailments and 2 bouts of pneumonia.  I'm also the product of a consanguinous union.  In other

words, my parents were cousins.  Good doctors used to counsel

couples with regard to having children if they were blood related, because there is a greater risk for birth defects of any kind.  This is 

a very interesting forum, indeed.  Take care.

20

Thanks for sharing and the info. You have quite a story too. Hope you live way longer than they think. 😊