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Harrybaby666

Well-known member
Joined
Jul 1, 2003
Messages
2,541
Location
NH-Further North
Hi Gang,
Well, once again I am stuck between a rock and a hard spot, and I am hoping that maybe someone can offer me some advice on what to do....I had my routine echocardiogram on the 15th, and I got my results back yesterday, and it seems as though my echo came back really good. The problem that I am having is this:

1. I was admitted to the hospital for chronic pancreatitis, also with a referring diagnosis of systolic dysfunction (heart does not contract well-CHF). The doctors didn't tell me this, they only slammed me into the heart wing overnight then back to the regular floor to treat the pancreatitis.

2. I also had 2 caths done...one in 1999 which showed no blockages, and another in 2002 which also showed no blockages.

3. I then had another echo done via my first cardiologist, who then told me that "it isn't the valve leakage(s) that are going to get you, it's the heart failure-some form of it" but, he wouldn't specifically say what the diseases were, although when I went to check out, the girl in the office held up my diagnosis form and asked the nurse what CM meant, and the nurse said "Cardiomyopathy".

4. Now, between this time and now, my last cardio left the area and moved to New Mexico, so I had to find another cardio, so I went to my current one, who also told me that I had "Diastolic Dysfunction" and that my valves were still ok, but he wanted me to check in every 6 months to monitor the issue.

5. I was admitted again to the hospital in August because I was having chest pains and shortness of breath and they did a stress echo which found nothing, and I was discharged 3 days later.

6. I am now to the point where if I lift anything or exhert myself in any way, I start to have chest pains and shortness of breath and feeling wiped out after getting over the SOB and chest pains, and I was told by my Cardiologist that he didn't want to see me again unless I was referred to him my my primary care doctor, who I also don't like, because all he does is sit at a computer and type instead of examining me...

I am wondering if I should continue the fight to find out what is wrong, or to just accept the constant diagnosis of "Your too fat" or " It's Anxiety"....I am on all kinds of meds for anxiety, and as for my weight, I am losing, and out walking most everyday when the pain lets up enough to let me walk. I am just so frustrated because I know that there is something wrong. Can it be that you can be diagnosed with something, only for it to reverse itself? I told my current doctor that the information was in the records that were sent to them, but the nurse swears that they don't have them.....Can anywone offer me any suggestions? :( :( :confused: :confused: Harrybaby666
 
Harry

Harry

Im not sure what you are asking, but I do know this..never give up.
It sounds like you are getting conflicting reports, and that can be scary.
Have you tried any other second opinions?
Hang in Im thinking of you.Love Yaps
 
Hi Yaps,

Hi Yaps,

I guess what I am asking is whether Cardiomyopathy and valve disease and CHF can just go away on its own...I have had one doc tell me that I do and another tell me I don't. I just want to find out if it's yay or it's nay...I just don't believe that heart trouble should be as ambiguous that my doctor's have made it out to be..Either I have it or I don't. I have Echo's that tell me I do, and echo's that the doc's tell me I don't...What a mystery....Harrybaby666 :confused: :( :(
 
That's brutal, Harry!!

That's brutal, Harry!!

Hi there Harry. I know that hearing from a doctor that nothing's wrong should be something for you to be happy about, however, that's not your body's telling you. I really don't know what they're up to, but on the other hand, why would they lie aboutit? I mean, they'd have nothing to gain by doing that, would they? You sure are in a catch 22 there and the only thing I could suggest you at this moment would be for you to try and go to another city or even state to see if the opinions would be the same. Well, what about Brazil?LOL!! We have great doctors here too!!LOL!! I know you said you couldn't make it all the way over here, but if you ever think you can, just let me know, ok? Take care and don't give up!
Débora
 
unfortunately

unfortunately

echos are only as good as who interprets them, if I were in your shoes, I would get copies of the echo(video) and take to different dr for an opinion. Wish you luck, Yaps
 
Harry,
I imagine that you can trust the echo about your valves. My valve problem was seen as stenotic since the very first echo and each succeeding one has gotten progressively worse. I've had 7 echos and two right/left heart caths.
I'd go back to the primary doctor anyway, and ask him what's going on.
Mary
 
OK, here's the directions you'll need:


Step one:


GET ANOTHER DAMN CARDIOLOGIST AND A PRIMARY PHYSICIAN THAT KNOWS WHAT THE HELL HE/SHE IS DOING!!!!!!


Step two: Get treated...


Cardiomyopathy is an enlargment of the heart. The heart is enlarged because the it's taking too much effort to pump so all the blood gets to where it needs to go. It's taking too much effort to pump because the VALVES ARE LEAKING!!!


This ain't rocket science. Replacing a valve, yes, knowing why that valve needs replacing, no.


Granted, everything is more complex than that. There are other reasons for cardiomyopathy, however if you have at LEAST two known valve leaks and they haven't been getting much in the way of treatment, then chances are that's part of why your heart's enlarged. An enlarged heart can cause all the symptoms you've described. It's also part of CHF. All of that may go away if the leaks are fixed. At the very least, you would see a LOT of improvement in the situation.


I had/have cardiomyopathy. It's a symptom BOTH of the tricuspid valve problems that were fixed and a symptom of the transposition I was born with. My heart pumps "backwards"" The pumping roles of the chambers was reversed as part of the process of fixing the CHD I was born with. Because of that reversal of roles, my heart looks "enlarged" on X-rays and other scans, technically it's "myopic" but it's SUPPOSED to be that way, it's just a side-effect of making the right ventrical pump more than the left which does most of the work in a normal heart (I may have that backwards, I almost always do....)

Ask around, call hospitals or other doctors or people you've known who've had heart trouble. Find the best person in your area for your condition.

You might even ask your insurance if you have a good plan.

It sounds to me like your doctors aren't paying much attention to you and your heart and that can be VERY fatal. You may need to find better help.
 
Hi Harry,

Have they checked your Kidney function? Pancreatitis sometimes rears it head in light of a Kidney disorder.

Good luck to you.
 
My husband had cardiomyopathy in 1997. He was treated for 6 mo. with lanoxin and then it went away. The cardiologist's expectations were that it would go away. He said that if it effects under a certain percentage of the heart ( I don't remember the percentage, half or under) that the dead part can rejuvenate. Beyond that it can't rejuvenate. My husband was lucky. We think my husband's was caused by malaria when he was in Vietnam. He almost died. And he is only a social drinker so it wasn't alcohol. And he didn't have any other infection.
So maybe you took some sort of medicine that helped the cardiomyopathy. Maybe you were one of the lucky ones.
Since then my husband has another kind of heart trouble. Cholesterol and tryglycerides. He doesn't have it now. Thanks to his diet the last year. After his heart attack and stent. We are so thankful that the other is gone and just one to contend with.
As for the other problems you are mentioning , I don't know anything about. Maybe they made a mistake.
Hope you get to feeling better. If you are feeling bad , you had better follow up on it. Don't let anyone talk you out of it.
Good luck.
 
Harpoon said:
Cardiomyopathy is an enlargment of the heart. The heart is enlarged because the it's taking too much effort to pump so all the blood gets to where it needs to go. It's taking too much effort to pump because the VALVES ARE LEAKING!!!


This ain't rocket science. Replacing a valve, yes, knowing why that valve needs replacing, no.


Granted, everything is more complex than that. There are other reasons for cardiomyopathy, however if you have at LEAST two known valve leaks and they haven't been getting much in the way of treatment, then chances are that's part of why your heart's enlarged. An enlarged heart can cause all the symptoms you've described. It's also part of CHF. All of that may go away if the leaks are fixed. At the very least, you would see a LOT of improvement in the situation.

And this is where I join Harry in his frustration! I've seen my reports with mod-severe pulmonary regurg and mild tricuspid regurg (and this is going back almost 3 years now), a dx of cardiomyopathy (which I've always had), yet the doctors keep insisting I'm fine and it's not my heart (???!!!).

Harry - what can I tell ya? If they can't find anything with your heart (..which, like me, seems very strange..) then they need to find out what the problem is. Could it be the PH giving you these problems? I know from my own research that it can give very similar symptoms to heart problems. Have you gone back to the pumonologist with these concerns? Clearly something's not right and you deserve better than a quick brush-off.

I can only offer my ongoing support and understanding and hope that you find someone to treat you with the dignity and respect you deserve.

All the best
Anna : )
 
HARRY - there is a section in About.com that has a genuine real cardiologist/ep who has a forum for asking questions. He is Dr Richard N Fogorus and you will find it in heart disease/cardiology. I have mentioned his site several times in here. Why not pop into that forum and ask him some questions. He will not give you medical advice, but he will quickly answer questions in general and he can explain things in terms you can understand.

I am sorry you are having such trouble with this, but we are here to listen and support where we can. Blessins........
 
Thanks for All your replies and support..

Thanks for All your replies and support..

I am sorry it took me long to respond to this, but I have been out straight throwing together a turkey dinner for me and my brother in record time...3 hours to cook eat, go to the store, go pick my brother up and come back and eat and clean up...LOL what a day...well, anyway, I just wanted to thank you all for your suggestions, and I am checking out that About.com Hensy. I am just soooo tired of dealing with the dr's in the area I live in and it makes me think that they just dont care about those who are on medicaid. And Yes, Harpoon, I am still going to find other doctors, and just as soon as I get my automobile, I am going to either Portland, Maine, or to Boston to see some real doctors...Again, thanks for all the encouragement and support. Harrybaby666 :D :D :D P.S. My Cat sends is Meow Meows for Happy Thanksgiving and I well, I just wish everyone a Happy Thanksgiving the regular way...LOL :D :D :D :D
 
Good morning. The only thing I can say is that you deserve better. The most recent Cath ... did it show PH? I didn't realize that you had had caths. In any event, you could try and obtain the videos and take them to another doc. My experience has been that docs would rather retake their own echo than read someone else's. So, perhaps you can get another cardio for another opinion. I am so sorry that you are experiencing this. You might want to try and keep a log of your symptoms, when they start and stop, the severity etc. so that you can chart either progress or regression. Perhaps if its written down in black and white, it will be harder for someone to ignore what you are saying. Keep us posted.

Mich
 
Dear Harry,
I also have problems with pancreatitis. Everytime it flairs it causes major problems for my heart. I also share the exhaustion you talk about. My blood pressure then rose and I had to be on blood pressure medicine, for the first time in my life. My cardioligist, after checking me out with every test imaginable, said my heart was being stressed by something. Something else was going on. My advice is to find a GOOD GI Md who specializes in pancreas diseases. This is a must as most GI Mds are pretty clueless with this disease. I travel to see mine. My regulars GI is 2 hours away and my Pancreas GI is 5 hours away. SO please don't give up and make those Mds listen to you. You know your body better then anyone. My problems continued and I was finally diagnosed with Hepatits C and this is the piece of the puzzle that was missing. It caused the stress to my heart, my pancreas etc.... Here is a web site that lists the extrahepatic (outside the liver) symptoms of Hepitits C (HCV). www.hepatitisneighborhood.com. Go to complications, then diseases and conditions associated with Hep c. Another good site for information is http://www.janis7hepc.com/index.htm I hope this is not your case, but who knows. Cardiomyopthy and pancreatitis are listed as some of the symptoms. So please don't give up and I hope you find an Md who you like and will listen to you. MAKE THEM LISTEN, YOU KNOW YOUR BODY. I just went thru the we don't know whats wrong, so don't give up. Persistance is the key.
Love,
Nancy:)
 
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