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Marcia Al-Khalil

Hello, I am new to this site (or , any forums for that matter) so..plz bear with me.
I was diagnosed with MVS and MVR as well as AVS and AVR about 4 years ago. The Dr.s here told me not to worry. I was young and would have plenty of time before I needed to worry about surgery. ( am 41) They assured me that 'I would know" when it was time.
Over the past year, I have noticed shortness of breath as well as extreme fatigue. I mentioned this to the Dr, and was again told 'not to worry'. I live in Saudi Arabia (Im American) and the choice of DR.s is limited. I am beginnning to think that the limited Dr.s knowledge is limited.
I had an echo last Thursday. Now...my question is .....does anyone know what these numbers mean? He said that the size of the mitral valve is 1.5 and the pressure is 7 and 10. I dont have a clue what he means. He didnt say anything about the aortic valve. I am trying to figure what is happening to me through research on the net as it is my only choice here. Any ideas, suggestions or HOPE would be greatly appreciated.
Thank you
 
Hi Marcia-

Welcome to the site. You will love the people here and the information that is in all the threads on the site.

I'm so sorry that you are having these problems at a young age, but there are many here on this site who are or have been in similar circumstances. The first thing you should know is that being young does not mean that you cannot have problems requiring surgery, as quite a few people can attest to. The decision to have surgery is a combination of the test results and your symptoms. Being short of breath and extremely fatigued are some of the symptoms that indicate that surgery would help you.

Here is another site which shows all the various symptoms of heart valve disease.

http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/23659.html

Heart valve surgery is truly a life-saving surgery. It is highly perfected and the surgeons who do this are experts in what they do. Years ago, people with heart valve problems did not survive, but today, there is every hope for a long and wonderful quality of life.

When you are first diagnosed with these kinds of problems, it is scary. The very best thing you can do is to educate yourself on what your condition is. Read as many posts here as you can, even though it might make you nervous at first. As you read through them, your fears will diminish to a large degree.

How is the medical care in Saudi Arabia? Are you planning to stay there for your surgery? Are there heart surgeons there who can take care of you? I know that many people from out of country have travelled to the Cleveland Clinic to have their surgeries done.

So stay with us here to gather support for yourself. We'll be happy to answer questions as they come up. You probably should be posting heart related questions on the Heart Talk forum, to get the best replies. Your condition is certainly not "Small Talk".

Wishing you the best.
 
Thanks

Thanks

Hello Nancy,
Thanks for ur fast reply. Ooops...I guess I goofed and went to the wrong forum. Thanks for the advice.
The medical care here is..hmmm...substandard is being polite. This is what worries me.
I am originally from Toledo_Ohio so, Cleveland Clinic would be ideal for me.
 
If leaving the country is a viable option, Cleveland would be the place to go. I spent some time in rehab at Cleveland with one of the Royal Saudi family members. He had heart surgery too. Unfortunately he spoke no english and required a translator, so I didn't get to talk with him, but the rehab staff helped us alot.

Someone had posted the numbers thing somewhere here. I'm still trying to find it. :confused:
 
Hi, Marcia! You're lucky indeed to find this site before surgery; whatever happens you'll be so much better informed and have confidence that you've been able to make good choices.

And the first choice is that you have to get a good doctor that you trust. You have to get going here - take control of the situation. If you have the option of getting to the Cleveland Clinic do it sooner, not later. You simply must not allow your physical condition to deteriorate further without being checked and tested by a top notch cardiologist.

You're certainly welcome here. We're all glad you found us. Lete us know how you're doing as you start this journey.

Georgia
 
Hey, Marcia - we have a member from Israel (hagay). He decided to come to Canada for his surgery where he felt more comfortable with the medical services. Turned out well for him.

If it is an option, you might look into this.

You can also go to 'members' above, find hagay's name, go into his profile and read all his posts. Maybe give you some ideas as to what he did.

My sincere thoughts are with you right now as you go through this. It certainly is not a pleasant spot to be in when your heart is not o.k. And I wish you well. God bless
 
I am so happy to have found this site !! Within a few hours this afternoon, I feel so much better ---mentally at least. It is a real comfort to know that there are people out there that understand me and what it is like to live with.
My husband is currently working with the company to get medical coverage for me in the US. Then...possibly...I can check out Cleveland Clinic. (where there is life there is hope!!)
 
Marcia,
Being from Ohio, you will be able to relate to this. What finally clinched my heart condition for me was blowing snow. After I completed the job, I could not breath, had chest pains. I was sore for days after that.
Up until that experiance, I thought I was just getting fat and out off shape. I gasped for air while cutting grass, I could not keep up with my wife while shopping. Now I know, it was my bicuspid valve.
One of the things that made the surgery easier for me, (I didn't find this site until I was home healing), was knowledge. That knowledge gave me confidence that the surgery was proven and the surgeon I picked was the best.
When I got home, VR.com guided my way.
Don't forget the Man upstairs!
carbo
 
new worries

new worries

Hi guys,
Thanks for all the encouragement and advice. My husband and I are presently trying to get me into the royal hospital here. If this doesnt work, well...home to the US it is.
I was to the Dr. today and found a lot more medical info about myself (Dr. let me see the file to compare the last 2 echos) The thing is, it is great to be informed but, I dont have a clue what all this means. For example, I now know that the mitral valve changed in size from 1.65 cm to 1.5 com. And, the pressure at which the blood flows through the valve went from 65 to 40. Also, was changed in status from moderate to severe in the mitral valve.
The aortic valve was changed from mild regurg to moderate regurg with some stenosis.
I cant remember what exactly...(they kinda overwhelmed me with all of this) but, some ventricle is enlarging. Went from 3 cm to 4.5 cm.
Ok....showing my lack of knowledge on the heart here.
Anyone have any idea what all of this means?
(guess I shoulda gone to med school instead of enjoying my youth :D )
 
I'm no good with the numbers thing, but bottom line is you'll need surgery soon. Bet you didn't know that huh? :) I'm still trying to find a post that had the numbers to be looking for and I'll be darned if I can find it when I need it. :(
 
LOL Thanks Ross and Nancy
I'll check that site in just a sec Nancy.
I know the surgery is coming soon...just trying to reassure myself that I will be ok until I can make it happen.
 
AS data

AS data

Marcia - The aortic valve is normally 3 to 4.0 cm sq in area. When it gets down to about 1/4 that size, it becomes serious. For a large person, 1.0 cm sq. could be serious. for a small person, .7 or .8 is usually considered serious. Similar data on other valves along with regurgitation data can be found on the site that Nancy gave you. Good luck. Chris
 
Hi Chris,
Thanks for the info. I did check out the site that Nancy gave me. It was a big help!! Now, I am a bit more understanding of what exactly is happening to me. That is a comfort really.
I want to print off some of what I learned but, not sure the surgeon would appreciate my sense of humor. :D
 
Hi, Marcia! I think that any doc who resents a patient who's interested, proactive in his/her treatment, educated about his/her condition, etc., should be discarded. I changed docs once when I had one who believed patients should be obedient and dumb (in both senses of the word).

Print off the stuff that applies to you and take it with you and ask questions. No good surgeon or other doctor will feel threatened by a knowledgeable patient.

Good luck, kiddo.

Georgia
 
getting help

getting help

Be sure to check in with the nearest embacy.
Medtronic
 
Ok Guys, FINALLY....;) I managed to get into the best hospital here in the Kingdom !! It is a month wait but, better than nothing I suppose. Small conquest in this big battle I realize but, will take comfort from any source or action at this point!!

Check in with my nearest embassy??:confused:
 
Hi Marcia-

Good for you! Sounds like help is on the way. Do you have a date yet. Let us know and we'll put it on the calendar so we can keep track of your surgery.

Do you have an appt. to meet with the surgeon yet?
 
Marcia, now that you have set your feet on the path to the mountaintop, please keep in touch to ask questions about hospital stay, etc and to keep us informed as to how you are. Blessings to you
 
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