Any One My Age Facing Heart Troubles?

[Harrybaby666]

Hi there,
I am new to this site as I have just found out that I have 4 leaking valves, the mitral being the worst, and LV Systolic Dysfunction, and an enlarged heart, and was wondering if there is anyone else out there who is my age 37 who is up against the same kinds of problems. My problems stem mostly from being Diabetic and congenitive problems, but for some reason things have been overlooked until I started having shortness of breath, and being tired all the time, and very symptomatic when I try to do things that I should normally be able to do at my age. If there is anyone who is in this same kind of boat, I would appreciate any support. Thanks.

 

[lcwhitney]

Hello and welcome!

I'm Lettitia( Latisha) I am now 39 years old but I had my first surgery when I was 37. I am genetically defective also! My mother really hates it when I say that.
I had my first surgery in Aug of 2001. I had a repair of a patent foramen ovale, replacement of a bicuspid aortic valve, pulmonary valve replacement and a pulmonary outflow tract replacement to repair a pulmonary artery anuerysm. I now have a mechanical aortic valve ( St. Jude).
I will be going to Houston on July 15 for my second surgery to replace my pulmonary valve again. My grafted valved has stenosed and has to be replaced.
You will learn a lot here. Between all of the people here we have been through a lot. Sometimes everyone's objectivity is a huge help especially when you know that the person you are talking to has benn through some of the same things you are going through.

Lettitia

 

[Nancy]

Hi Harry-

And welcome to this terrific site. We have people in all age categories here. Valve problems really aren't age specific. You'll love it here. It's like a family and we all understand about this problem.

My husband is the patient here and I do all of his computer research. I've learned an enormous amount of information here and continue to do every day. There is always interesting posts here.

Do you know the extent of the valve leakage for each of your valves? Is your cardiologist saying that you need surgical correction on any of them?

Please try to read as many posts here as you can. It will help you to understand the nature of the problems you are having.

Best wishes and hope to see you here often.

 

[Harrybaby666]

Hi Litisha

Hi Litisha

Hi Litisha,

Thanks for your encouraging reply, at least I don't feel alone anymore, its hard when everyone in your immediate local "family" and supposed "support system" does not want to listen because it is "impossible for someone in our age group to be so sick." I don't know what is going to happen as my doc so far is just monitoring me through echocardiograms, but I have a funny feeling that I will be going through Valve Replacement somewhere down the road. I wonder, do you ever get the feeling that your doctor(s) do not tell you anymore than they think you can handle? I do. I hope that you don't ever feel like I have felt since finding these things out. Thanks again. H.L.

 

[Harrybaby666]

Hi Nancy

Hi Nancy

Hi Nancy,

Thanks for your encouraging words. I do know that 3 of my valves are trace leakage, but my mitral valve is leaking at the mild stage, but I have a funny feeling that it may be worsening by the way I have been feeling lately. I have been soooooooooo tired to the point that I don't want to do anything but sleep, and I have been having bouts with chest pain, to which I have to use my nitroglycerine. As I told Latisha, I am having a hard time communicating with my Doc. The last time I talked to him, I asked him about my valves, and he told me that it wasnt the valves that were going to kill me, it was "some form of heart failure". Did he mean that I have heart failure or was definitely going to develope it? I This is all to overwhelming.

 

[lcwhitney]

Hi Harry,
If you don't feel you are getting the answers you need fro your doctor ask him more questions. If you don't get the answers you need or he won't answer your questions, replace him. I have been through a couple of cardiologists since I started having problems.


Lettitia

 

[LUVMyBirman]

I don' think you have much to worry about with mild leakage at this point. Could be 20 years until you require valve replacement or never. Was 30 when I had mine replaced. Diagnosis was made at 8 years old.

 

[Nancy]

Hi Harry-

Trace leaking happens to a lot of people and mild leakage will probably be watched for a while. I don't believe there would be any surgical intervention on a mildly leaking valve until it gets to a more serious level, but then I am not a doctor and don't know the exact nature of your problems. You will probably be put on some medication for a while with frequent cardiology appointments and testing.

You do have some other cardiac dysfunctions and the complication of diabetes as well.

It's very important that you have a good cardiologist that you can communicate with easily, because you will be needing cardiology care for a long time to keep tabs on your conditions.

I'm assuming that you had an echocardiogram and that is how your problems were discovered, right?

You mentioned that you were short of breath. Are you also retaining fluid in your feet or legs? If so, are you on any diuretics for the problem or on a reduced sodium diet?

You are, of course, under medical care for your diabetes and are in control with that.

Just asking a lot of questions to try to see where you're at with all of this.

Take care,

 

[nadi]

Welcome!

Welcome!

Hi Harry!

You will find all kinds of answers, encouragement, and anything else you may need here. I am fairly new here but I am very very thankful I found this site. More than likely I would have ended up in the funny farm without this group of wonderful people.

I turned 42 three days after my mitral valve replacement. I did not know I had a heart problem for the last couple of years the Dr misdiagnosed me with C.O.P.D. I was very lucky that it was found when it was. I too, was tired all the time, could not walk Walmart without trouble, and had bronchitis and pneumonia a lot! I even had personality changes.( very grouchy!! )

My cardio has been great and he answered all of our questions. My surgeon even told me to make him a list and that he didn't care how long it was. My point is, if you don't feel comfortable with your Dr. keep trying others until you find one you are comfortable with and that you trust to be very truthful with you.
You need to be part of your health decisions.

If your family doesn't understand about your condition ask them to join us or at least read some of the past post. Even my husband did some reading here.

Sorry to be so long winded!
But once again welcome!

Take care,

 

[hensylee]

Welcome, Harry - we have 'em every age in the calendar - Our young'un (Nicole) in New York is about 21, Brad was even younger when he had his surgery - we had a high schooler (I forget his name now) - and then there are old ones, too. All over the map. So from all the collective experience here, you are going to be very educated and informed. We are glad you came in to join this great site. God bless

 

[epstns]

Hi Harry,

Welcome to a wonderful place! I'm sure you're pretty confused right now, and it seems that your docs aren't helping much to clear it up. I'm a bit older than you (55) but only recently received the news that I will someday likely need a valve replaced. The experience I think I share with you is the one where the doctor isn't being forthright with you and isn't treating you as if you can understand what you're being told. I'll have to agree with several of the others who suggested another opinion from a second cardiologist. I recently "fired" my first cardio and found another nearby who specializes in valve dysfunction. What a difference! He explains everything, answers my questions (even the silly ones) and over-all is taking me down a much more realistic case management path. Worth a try, I'd say, to see another. If you decide to stay with the original doc, usually they respect you for checking and staying, too.

By the way, welcome to "The Waiting Room" where all of us who haven't had surgeries yet can share the virtual wait together! Which magazines would you like? Betty will be around soon with coffee and snacks. . .

 

[JimL]

Welcome Harry. I had a congenital bicuspid aortic valve, which became bad enough to damage the mitral valve and the aorta before it was replaced with a St. Jude's. I was a bit older than you when the valve went bad, but that doesn't mean much.

I support what the others have said about a good cardiologist. Many of us are on our second or third cardiologist. Use the time and energy you have now to get that settled.

I also wonder with Nancy about the tests they have done. You must have had an echocardiogram. Have you had catheterization? My surgery came three days after the catheterization.

Keep us informed.

 

[Yokena]

Another Helpful Site

Another Helpful Site

Hi!

Since you have some congenital defects, you may want to also check out the Adult Congenital Heart Association site. Here is the link.

http://www.achaheart.org//index.php

Joyce in Mississippi

Ebstein's Anomaly
Bicuspid Aortic Valve
Right Bundle Branch Block

 

[Nancy]

Hi Harry-

When I was checking out WebMd this morning, I came across this article that might be of interest to you:

http://my.webmd.com/content/article/70/80976.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}


I then did a search on the FDA.gov website and came up with these results.


http://www.accessdata2.fda.gov/Goog...chselector=0&q=diabetes+"heart+failure"&as=GO

If any of these things apply to you, I would bring them up to your Internal Medicine doctor or your cardiologist.

 

[Gisele]

Hi Harry in NH

Hi Harry in NH

You are at the right place to get answers to your questions. My surgery took place when I was 26 years old, and that was 21 years ago. (don't do the math to figure out my age..............pleeeeze). Between everyone of us, we have nearly everything covered in regards to different conditions, treatments, and experiences. Don't be afraid to ask about anything.

By the way, where in NH are you located? Good to have another New Englander here (there aren't enough of us).

 

[Yokena]

Another Helpful Site

Another Helpful Site

Hi!

Since you have some congenital defects, you may want to also check out the Adult Congenital Heart Association site. Here is the link.

http://www.achaheart.org//index.php

Joyce in Mississippi

Ebstein's Anomaly
Bicuspid Aortic Valve
Right Bundle Branch Block

 

[bvdr]

Start your own medical file.

Start your own medical file.

Hi Harry,

I too want to welcome you to our site. I am sorry to hear that you are having the types of problems you are but as others have said here, you are not alone.

I've mentioned this to several others and I will to you as well. Make it a habit of obtaining copies of your test results, office visits, and anything else you can. It will help you so much as you research your condition and communicate with others both in and out of the health care professions. With the new freedom of information act it is so so easy. You are entitled to all the information. Keep yourself as informed as possible and you will really benefit.

Also I suggest to use a reply that is really open-ended when talking to your doctors. If they say something like...'it's heart failure that will get you'...then say "how so?" or "why so" and let them take it from there. Ask questions such as "how would you summarize my situation and what is my prognosis?" It make help you get some more definitive answers.

As Steve said, welcome to our waiting room! We have plenty of room and there is no time limitation on how long you can stay here. Magazines are updated and snacks are available. Put your feet up and make yourself at home.

Betty(bvdr)

 

[Harrybaby666]

Reply To Nancy

Reply To Nancy

Hi Nancy,

Yes, The Docs found out about my trouble while I was being admitted for pancreatitis, but only after I made 150 trips to the emergency room with chest pains and shortness of breath of which they chalked up to anxiety. I am on Atenolol, Zestril, Lasix, Potassium supplement, and Nitroglycerine for chest pains. You know, the funny thing about all this, is that I found out all this rotten news at the same time that my father was told he was dying from congestive heart failure and needs a heart transplant. Horrifying isn't it? Well anyway, they also told me that I have Left Ventricular Systolic Dysfunction, and an Enlarged Left Ventrical, and I have done enough research to know that technically this means I have Heart Failure too, but I am still trying to keep a positive outlook on things. My Diabetes is under control with a HbA1C of 7.5 at my last visit, so I guess things are not too bad right now. I know I will enjoy having the added support of all the people who are on this site, and look forward to communicating with all. Harry

 

[Harrybaby666]

Hi Lititia

Hi Lititia

Hi Lititia,

Thanks for your encouraging suggestion, I have been considering finding another Cardiologist, as I feel that when they cancel your last 4 appointments, they do not put you high on his/her priority list, and I feel as though my problem is just as important as any other patient, reguardless of age. It has just been hard to deal with. Thanks again Harry

 

[Harrybaby666]

Same Boat

Same Boat

Hi Gina,

I can certainly understand how things are for you, as I didn't know I had congenital defect until my mother told me 2 years ago that the Dr. who delivered me asked her (during one of my later pysicals as an infant) if I had ever been diagnosed as having a heart murmur. Not to mention the fact that my mother also told me that I was a very sickly child, which would explain why some of this stuff is happening now. I must admit, I am still nervous about what will happen when I do have to have a valve replacement, as I have a friend who had it done, and now her replacement valve is starting to go again. I guess I just don't want to be suddenly hit with: "You have to have your valve replaced" anytime soon. Thanks for your encouragement-Harry