Newbie With Heart Issue (Sleep Apnea, Valve Issues)

[Courtney812]

So ive been talking the ear off a few dinet members on facebook (rich.. thanks buddy 100x as always) and lurked for 2 months now and finally im joining. I have a lot of questions so please bare with me, and if you can answer some.

9wks ago i had my second child and started fainted, i have high and low blood pressures (most of the time though my issue is narrow pulse pressure) i also have bradycardia and tachycardia. It has been as low as 36bpm, and as high as 187. During my tilt table test laying down it was 46bpm, then they tilted me up and it was 116bpm. my bloodpressure also dropped but not to far. I have daily headaches, chest pain, numbess in my forearms and feet, arthritis type pains in my hands/feet and back. Flushing, dizziness, lighheaded, shaking, cold feet/hands but hot face. the list goes on...but im sure you all understand where im coming from and going with that.

I also have horrible heel pain, numbness/burning in my hips and arthritis pain in my feet, arms, wrist, knees, fingers... ugh. the worse is my freaking foot though!!

I was admitted to the hospital for 4 days and had a lot of test which at the time showed nothing other than one small white spot on my mri and one VERY mild murmur.

i had

brain MRI

chest, head, abdomen CT scan

EEG

chest xrays

echocardiograms

multiple EKG

thyroid test

After my hospital stay i had 2 sleep studies and now i found out i have mild sleep apnea (6 per hour so its very mild, i get my CPAP machine soon) and i had another echocardiogram, 24hr monitor, TTT, exercise stress test.

my exercise stress test showed Sloping, so on the 15th i have a nuclear stress test. Also this second ECHO showed a moderate aortic leak and a mild pulmonic...

So now im worried... they are talking about open heart surgery for my moderate aortic leak (he said within a year). I honestly wouldnt even be scared if it wasnt for the fact i think i have dysautonomia and i personally think its autoimmune fueled. So im afraid i either wont make it through surgery... or the POTS and OHS will send me into a tail spend and ill be bedridden with dysautonomia.

but honestly my chest pain and shortness of breath is getting A LOT worse.. now any time i stand my chest hurts, i can hardly walk because its hard to breath so i dont know what to do, well i know what i am doing... my cardio ***** for details i dont feel like explaining but im sure all of you have dealt with a doctor like him. So now im on the hunt for a new cardio who CARES about my symptoms (instead of saying im young? yea and young people die all the time! im almost 23 by the way) and a cardio with better reviews and does surgery at a highly ranked hospital.

I am afraid... can yall please help.. how is surgery and dysautonomia? How is it with a major surgery like open heart surgery?

Also i dont know what caused my pots, after i had my first child i had 2 weeks of tachycardia ****... laying down my heart rate was 160's. and then bam it went away one day! This time its now 9wks out and im still sick! could be a longer recovery, but also i have these new found heart issues.

also could this all be heart issue related? and i might not have POTS at all? i have 30bpm increase (nearly 100bpm increase!) a lot of my symptoms seem like it could be the heart issue (fatigue, shortness of breath, chest pain, headaches, palps) thats all symptoms of my regurgitation.

[Courtney812]

i also have coat hanger pains. But once again, i just dont know whats causing what. Ive had exercise intolerance my entire life, but i also dont know how long ive had these murmurs so maybe it was pots, maybe it was murmurs but idk.

[davecom]

Hi Courtney. I also have heart conditions related to the Aorta, so I can sympathize. I also developed POTS. Keep us posted. In my case the congenital heart doctors say it's unrelated... But I have my fears. Prayers for you and your young family.

[Katybug]

Courtney,

Please, please seek out a geneticist who specializes in Ehlers-Danlos Syndrome

(EDS). Having POTS with the cardiac problems you mention and the pain is often a combo found in EDS and it is important to find out if you have it, especially the vascular form. As for cardio recommendations, what part of the country do you live in so people might be able to point you in the right direction. I have a great cardio here in Baltimore but that may not be close to you.

[Courtney812]

I dont know if its matters but im not flexible and my skin is not thin (i know a lot of people with EDS) I'm going to my primary doctor today to run some autoimmune test like ANA and some others. What test do i need done to look for EDS in the vascular form? I actually just looked it up and honestly none of the characteristics fit. I have thick lips, dont bruise easily at all, i'm fat (keeping it real lol), im not pale, well you can see me in my avatar picture to the left. Also all up until 9wks ago i had no idea i was this sick... and its a lot to hand at once as far as the possibility of open heart surgery soon.

Its so hard to imagine ALL this came on 9wks ago suddenly and i had it before the baby too (like eds if so) its hard to believe when i felt PERFECT before i was pregnant. IDK about EDS because my joint pain really can be just postpartum, or it could be autoimmune (lupus,lyme, even arthritis)

I live in Orlando Florida, my current cardiologist is less than good. He is a liar (he never asked me about my symptoms but he put on my report that i didnt have joint pain, i didnt have shortness of breath or palpitations.. and actually those are my BIGGEST daily symptoms other than chest pain... ) He also does surgery at bad hospitals, so rich gave me some information and i found out a local hospital "Florida Hospital orlando" is ranked 23 in the nation for heart hospitals/surgery. So now im looking for a better cardiologist (my 2nd opinion as well) that works out of Florida hospital orladno.

[Courtney812]

Also thanks Dave. My mom passed away when she was 38 (had SO many health problems but also didnt take care of herself) So im just trying to find my answers..

in just 9wks ive had all those test done, the sleep studies plus now im about to start going to a neurologist to see if i have small fiber neuropathy, or any other neurological causes.

[looneymom]

Courtney hang in there and welcome to the forum. We are a friendly bunch and just keep asking questions. It sounds like you need to find a specialist that deals with POTS. There is a physicians list on the site, that may be of some help. Sorry you are going through this. Keep us posted.

[Courtney812]

Well I got my blood work for ANA-lupus, RA, Lyme, diabetes

Just a few more things I want to rule out

And also getting my liver & kidneys checked plus b12 and vitamin D.

[corina]

Hi Courtney welcome to the forum. I'm sorry you have to deal with so many issues and hope you will be able to figure things out soon so that you can enjoy your newborn!

[YolaInBlue]

Hi, Courtney. My cardiologist has some knowledge about POTS and is also a very good cardiologist. He was the one that helped in my diagnosis. The team of doctors that tried to figure out what was wrong with me asked him for a consultation. He asked all the right questions about my symptoms, put me on Florinef, tried different beta blockers and was willing to set up saline IV infusions, since they help me a lot. He never dismissed my symptoms. His name is Dr. Ranadive at Orlando Heart Specialists. I see him in Altamonte office and I know he's affiliated with FL Hospital Altamonte. He does a lot of heart surgeries, but I don't know if he is affiliated with any other hospitals in the area. I have a MVP. I don't have any experience with him as a surgeon, only what I've heard. Even if you decide to to do your surgery at FL Hospital Orlando, I think dr. Ranadive would be good for a second opinion. Just make sure to see him, not any of his partners.

I wish I could help more. All the best to you, hang in there.

[Courtney812]

Just called his office, he is not accepting new patients at this time.

I remember calling him yesterday as well (front desk person named princess haha stuck out to me) I really wanted to go to him, sometimes when they say they aren't accepting new patients at this time I just want to ask to speak to the doctor and beg for him to take me on as a patient

[YolaInBlue]

I hope you'll get a chance to talk to him and explain your situation. I really don't have anybody else I can recommend, but there must be someone better than your current cardiologist. Hopefully you'll find a doctor you can trust with the surgery.

[Katybug]

Courtney,

I did actually beg a doctor (my Lyme doc) through a letter to see or to give me a referral to someone they thought could help me. The letter got me an appointment! If you really want to see him it's worth a try. I explained my symptoms, the doctors I had already seen, and the treatment I was currently on or had tried. Then I politely begged (and flattered) and asked if she couldn't see me if she could please suggest another available doc with her expertise and/or the appropriate specialty if Lyme didn't seem to fit. I had a call from her office within 3 days of mailing the letter. There's no guarantee but it will only cost you a little time to write the letter and a postage stamp.