Chest pain and leaky valves

[roundsgirl]

Hey Everyone,
I've been reading post here and thought someone may be able to give me some insight. First of all I need to let you know I have leaky heart valves. The aortic leaks moderately and the other 3 leak mildly, this was last year when my last echo was done. I also have diastolic dysfunction grade 3 or 4, this went from grade 2 in a years time as did my aortic went from mild to moderate and the other valves started leaking within that year also. It's time for another echo, but money is a factor in my case. I have an active application for disability, not only for this aliment but also 2 cyst in my brain, diverticulitis and also back problems. Anyway, my chest has been hurting for the last week or so; just a pressure feeling, short of breath and the fatigue I cannot begin to describe. But last night I felt really weird, like I wanted to jump out of my own skin, I couldn't breath, I couldn't lay down, so I checked my BP it was low, the lowest reading I got was 104/56 with a pulse of 45, the reading stayed within this range for a coulpe of hours and then started going back up. I do take Hydralazine and Clonidine for Heart Failure, since last year. I am a 39 year old female, heart problems do run in my family, my brother had a major blockage at age 37 has 3 stents as of right now. I'm just worried that I feel something is going on with my heart. If I go to the ER all they will do is run and EKG which never shows anything. My problems have only showed up on the Echo. So has anyone else ever felt anything like this with my problems. Oh yeah my right ventricle was boderline dilated last year also. Any feedback would be greatly appreciated.

Sincerely,
Roundsgirl

 

[Ross]

Your another me. A complex case where it can be just about anything. Unfortunately, I don't have any words of wisdom concerning what's going on. Only the Doctors and diagnostic equipment can tell you that. Sorry to say, but you really should make that trip to the ER and be seen.

As for your disability application..Where are you in the process? Have you gotten a social security attorney in on it yet? If not, better do that asap.

 

[Cooker]

Wow!!! That is a lot going on. I don't really have any information to offer but I do want to welcome you. I am sure others will be along to help with your questions. Again, welcome......you are in the right place.

 

[njean]

Like Ross said, "I would definitely get checked out ASAP if I were you!" You need to get yourself a good cardio & have all the necessary tests done, i.e., ECHO, TEE, catherization, etc., to see what's going on with you! You're much too young to be feeling like that & the symptoms you describe spell trouble!

And as for your SSDA, is this your first attempt for Disability? I am waiting to hear on my "appeal" because my first attempt was rejected. Good luck to you with this issue as well!

Best of luck to you & let us know what happens!

 

[roundsgirl]

Thanks for all the replies. I have a call in to the dr. As far as my disability goes I am in the appeal process. The first time around, I was represented by the local hospital who had contracted an outside source to help people like me. That turned out to be a big mistake, so basically the first time around they didn't send not the first medical record to back my claims. So the disability office denied my request due to no medical records, so with my appeal I sent records myself and followed up to be sure that they got all records from my cardo. digestive, neuro and primary care doctor. Hopefully they have all my records now. I have contacted a lawyer who said he will represent me, but to wait and see what they say now that they have my records. So I'm in the hurry up and wait process right now.
You are right I was thinking the same thing same, I am to young to feel this way. It sucks it really does. I have a 20 year old son, whom I love to death, and wish to someday be able to chase a grandbaby around, but at this rate that is just a dream. I do thank all of you for your time to reply. I also wish all of you the best.

Sincerely,
Roundsgirl

 

[Bina]

Welcome to the group!
I really think that getting another echo, and/or cath is a priority at this point.
Good Luck with it.

 

[Superbob]

Welcome to this group! I am glad to read you are contacting your doc. Best not to wait. As for disability, I have heard that the process can be arduous so may be a good idea to get a lawyer or someone specializing in this to help you.

All best wishes,

 

[Ross]

Get the attorney (be sure he specializes in Soc Sec cases) on it NOW. There is a big difference between attempting to get disablility on your own compared to being represented. Be sure you keep copies of all of your medical records and also any exchanges between you and SS. The next thing you'll get is a denial with right to appeal, APPEAL WITH REPRESENTATION.

I've done the dance with SS and there is no reason to put anyone through what they do. Heck, they'll lose your records.

 

[evelyn2]

Hi

This is a great place to get information and, most importantly, have people understanding what you are going through.

I spent multiple trips to the ED for chest pain and pressure (too many to count). Each time they did an EKG and blood gas, found a few PVC's but basically said I just needed to relax. Tried many cardios who dismissed my complaints because I was too young at the time to have "real" heart problems. Turns out, 20 years later, I have mitral prolapse with mild leakage, had an ascending aortic anuersym that I had repaired along with a mechanical aortic valve 2 years ago.

I clearly remember the frustration knowing something was wrong but not having the professionals take me seriously. You need to find a doctor who will listen to you and do all the tests necessary to determine what is going on. Do you feel that the doctor who ordered the echos listens to your complaints seriously? If not, please find someone else soon.

You CAN and should be able to look forward to running around with a grandbaby. I have six and they are the joy of my life.

I will keep you in my prayers.

Evelyn

 

[WayneGM]

Welcome to the VR community. I can't add more to what's been said...get it checked out. Best wishes and good luck.

 

[ALCapshaw2]

Welcome Roundsgirl,

It sounds like you need to be evaluated by a Top Notch Cardiologist, preferably associated with a Highly Ranked Heart Hospital such as DUKE in NC or EMORY in Atlanta.

Your issues go way beyond the average "heart patient", especially for someone your age. Unfortunately, MANY Doctor's don't take Heart Symptoms seriously for young or female patients.

'AL Capshaw'

 

[roundsgirl]

Thanks to all for the replies. I went to the doc. today and when I got there my blood pressure was 180/100, I took my machine with me, to check against their reading and it was right on; within 2 points. They made me sit there and kept checking it to see if it would come down, but it never did. So I walked out of there with yet another pill to take Lizinopril or something like that. To add to my other pills I already have to take for CHF. I was wondering have any of you had that to happen, low blood pressure, then high blood pressure? My chest is still hurting, I go for an echo Thurs. morning.

Thanks again for all the replies

Sincerely,
Roundsgirl

 

[roundsgirl]

I wanted to check in: I got my echo report today. The aortic regurgitation is now listed as moderate-severe.
Aortic valve: The aortic root size is normal. The aortic valve is thickened. Aortic sclcrosis present without evidence of stenosis. Moderate-Severe degree of aortic regurgitation is present. The regurgitation pressure half-time is 391 msec. (last year is was 793 msec) Does anyone know what this means? There is reversal of flow in the ascending aorta during diastole.
The other valves still leak mildly. EF still good at 65%. The measurments of my heart did increase although still within normal range. They have increased some each year. Within the past 3 years I've gone from mild to moderate-severe aortic regurgiation. Is the sclcrosis something else I need to worry about?
I've still been having chest pain, felt it this morning;so checked my blood pressure and it was 102/44. Then it may shoot up like the day I went to doctor it was 180/100. Have any of you experienced anything like this with the blood pressure going haywire?
Can anyone tell me what there echo report was before they had to have the valve replacement surgery? I just wonder as my heart is clearly worse each year; how long will it be before they have to replace my valve? I will be following up with my cardio, but I don't know how long that will be.

Thanks for any input; I need it.

Sincerely,
Roundsgirl

 

[Debbie]

Hi

Hi

Dear roundsgirl, did the cardio. say it was time for surgery? Your symptoms don't sound to good, I'd go to another cardio. and get a second opinion. You'll feel better knowing what you should do at this point if you can get another opinion. Good luck Debbie

 

[roundsgirl]

Thanks for the replies. No I do not have insurance. I am in the process of trying to get Disability, although all this new information (medical records) is putting my ruling on hold. They have everything to date including the doc. visit and the echo. This is not the only health issue, that I am applying for, I have many health issues.

My cardio. called this afternoon and I have an appt. on Mon., they said they will work with me on payments or financial aid.

As far as second opinions there is only one set of heart doc.'s in the small town, so that and without insurance I haven't been able to get any second opinions.

Thanks again for the replies.

Sincerely,
Roundsgirl

 

[roundsgirl]

I see in your signature that it says congentitial biscuspid aortic valve.
My first echo says "Not a typical bicuspid but probably congenitlly abnormal."
What does that mean?

No I haven't heard of a spend down program.

I have no idea what surgeon I would use, if it comes or is at that point.

Thanks,
Roundsgirl

 

[roundsgirl]

Thanks allot Rachel,
I think the hospital here is state funded. I have been working with a third party company through the hospital, Chamberlin Edmonds, they helped me file for my disability, RSDI, AND SSI along with medicaid, but they did not mention a spend-down program. They hospital here does have an indigent fund which I also have applied for, which they said I qualify for; but that won't even kick in unless I get denied for my disability. I've done all that I know to do, even have my Congressman involved. He's written several letters to the disability offfice on my behalf. Sometimes it does seem hopeless, I've had my application going for over a year now. It seems like all my test are very expensive test. As I have mentioned before I have many health issues, if you don't mind I'll give you a rundown. I have 2 cyst in my brain, one arachnoid and one thornwaldt, which I have to have MRI's yearly to monitor these, these cysts go hand in hand with massive miagraine. I have3 cyst on thyroid, which are also to me monitored via ultrasound, but due to money I've never had those checked again. You know of the heart issues. I also have a cyst on right ovary. I've had a stroke in my colon last year and they also found that I have diverticulitis, which I've been hospilized for 5 days with. Then there is the ole' spine, a bulging disk laying on a nerve root, stenosis, arthritis, facet joint hypertrophy, etc. The diability office says that one thing that is taking so long, is because I have so many medical records to review. Everytime, I have to go to the doctor or ER with migraines, they are stopping and waiting for the records from the visit. That was one reason I was trying to put off going to the doctor, that and money. When I called the cardio's office I had left a message on the nurse's line about my latest echo and how I am feeling;she called me back with the appointment already set up for Monday, this is when I told her I can't afford the office visit, she helped me get in touch with someone in the office who said for me to come early, so I can fill out papers for financial assistance with their office.
It's bad to feel like you can't afford to live, if you were to see all my med's you'd think I'm 79 years old, instead of 39, it's really sad. My mom says she thinks I will make it into some kind of medical book. lol

Sorry to be so long winded, I just wanted to give you a better picture of what I'm up against.
I want to sincerely thank you for your input and advise.

Roundsgirl

 

[roundsgirl]

No my initial application was denied due to the first company through the same hopsital this one was named Thomas and Walsh, anyway they never responded to thier request for my medical records or request to speak to me directly, so they never got the first medical records. Spilt milk now I guess. Anyway I am in the request for re-consideration process and I speak to my disability case worker so I know that she has my records up to date.

Thanks again for your help. If you don't mind my asking why do you feel I need a surgical consult?

Thanks again,
Roundsgirl

 

[roundsgirl]

Hey Rachel,

Thanks for your honest reply. You are not the first person to tell me if I had insurance I would be treated differently. I guess you were only stating the obvious, and it hasn't only been with the cardio., the neuro also.

As far as my heart goes, I know it was scary for me each time I received the results from my echo, and now that I've reached the moderate-severe stage with treatment, I don't know what to do. I will be sure to let you know what the cardio. says Monday. It wouldn't bother me so bad if it wasn't affecting how I feel in such a negative way.

Only the best of wishes to you.
Roundsgirl