Ok..Ok....I need some opinions here....

[Harrybaby666]

Hi gang,
I have been wondering what you all think about this: I am wondering how likely it is that because I have CHF, and PH, Diabetes and Asthma and COPD that I will have to have my valves fixed or whether or not because I have the CHF, if they will even bother fixing them at all. I do know that I used to be all "Trace" Level on my valves, but my Mitral Valve has progressed from the "Trace" level to the "Mild" Level. I am wondering becasue I have explained to the cardiologist that I am getting Chest Pain and SOB on exhertion, and I have been having more and more dizzy spells, and when I mention this to the cardiologist, he just minimizes things without checking them out....I guess what I am saying is that I don't want something major to happen before the cardiologist does something, but I also am having problems with getting into see a surgeon as they want a referral from the Cardiologist...Any Ideas.? Thanks Harrybaby666

 

[Nancy]

Having CHF has never stood in the way of Joe getting surgery when he needed it. It has to be under control, though.

I'm not sure that surgery would be recommended for mild levels. But with symptoms, they should be checked out. PH can also cause the symptoms you're speaking of and could even cause some leakage in your mitral.

Start putting your symptoms in a log book with dates, and what you were doing when they happened.

 

[geebee]

Harry,
I went into what they called CHF because of my mitral valve prolapse, stenosis & regurge. I don't know if it there are "different" kinds of CHF but that is the term my cardio used.
In any case, the valve replacement helped me and there was no hesitation to do surgery.
Smiles,
Gina

 

[Nan]

Hi Harry, so sorry you are feeling so lousy! It's the pits. I don't know much about this at all, but it seems like your valve(s) are not at the point where surgery is needed (my purely unmedical opinion) . BUT you have so much else going on, with PH and CHF and diabetes that perhaps that would sway the decision making. I know you are limited in your choices of medical providers, but if you could manage another opinion, it would probably be helpful to you.

On the other hand, all of the other illnesses you are dealing with might just be causing the symptoms you are experiencing. Might not be related to the valve.

Bottom line from my perspective, you really need to find a way to get a really good medical opinion on what is going on. Maybe some of the big hospitals in Boston accept your insurance? Or are able to take on a number of patients gratis?

Let us know how you are doing.

 

[Harrybaby666]

Hi Nan,

Hi Nan,

I have been reading up on my illnesses on WebMD, PHAssociation.org, and HeartCenter Online, and have read that each one of my medical problems eventually worsen my heart (The CHF, Cardiomyopathy and Valves) and if I am having symptoms, you would think that the doctors in my area would do SOMETHING instead of telling me: "We Have Done All The Tests, " This to me says that they either don't want to bother or don't know enough to do periodic repeats of the tests...I mean, THEY ARE THE ONES WHO HAVE TOLD ME THAT THE TESTS THEMSELVES ARE NOT 100% ACCURATE. My question is, if they told me this, then why do they rely so much on them and not take the patients symptoms into account? I have been told that what is happening is that because I have had lung trouble all my life, it is now starting to destroy my heart, and I just feel that if the docs are going to give up on me without putting in 100% then I am the one losing out...I mean, it's Not Their life..why should they worry about whether I live or not...Pardon the bad attitude, but this is just how I feel, but then again, I am really tired of hunting for a quality doctor as well...Thanks for all the input, and I will be using the advice I have been given and journaling my symptoms and then see what happens.. Harrybaby666

 

[Abbanabba]

Hey Harry, I didn't know you'd snuck down under and had been seeing my cardios..!!!! Honestly! I can't give you any insight into your set of circumstances, but boy - I sure do know what you're going through

Here's hoping the New Year brings us both some answers and relief.

All the best
Anna : )

 

[Harpoon]

Find new doctors????


If you're feeling that bad, if your condition has worsened, there's really no reason to rule out surgery unless it's fairly certain that the risk is too great to provide any form of benefit.

ALL surgery has risk, even mild, mediocre stuff like a tonsilectomy.


I was in stage 4 for CHF when I had my tricuspid replaced, now I'm at stage 1 (almost no symptoms) if you want to get technical about it. There's no QUESTION that surgery helped me and that if I didn't get it, I wouldn't not have survived to my 30th birthday. I was a complex case too.


Ask your doctors why they keep discounting surgery. Make them explain why, if you're getting worse, they still don't want to go for a surgical approach.

Oh, and by the way, unfortunately many cardiologists prefer to treat medically rather than surgically because they're not surgeons.

On the other hand, many surgeons prefer to cut right away rather than treat medically for the same (reversed) reasons.


If you're getting sicker, you should probably have one of each involved in your care and they should be on "good terms" with each other. If nothing else, you might suggest to your cardiologist the idea of bring a surgeon on board just so you get comfortable with him/her. A "good" doctor is willing to accept outside input/opinions.

 

[Nan]

Hi Harry, I agree 100% that the docs should be listening to you and your symptoms and if the tests aren't always OK, then repeat them! But most importantly is why you are feeling so badly. They should most certainly be addressing that!

Hope you feel better soon.

 

[McCln]

Harry

Harry

this is momma Caroline and you need to find another cardio. This dismissing you without checking anything out is terrible. You are suffering and need help form someone who cares. Get a new cardio and then get referel. Most insurance requires the referel anyway. Good luck and hope you get the help you need soon. Hang in there.

 

[SHerrin Hutt]

Well,I have been there too! I had to see way to many cardiologist befor I found one would listen to me. The replacement was the best thing that ever happen. I was like a new person. I wish luck and hope you feel better. I think a new Dr. would be a good start.

 

[Harrybaby666]

It really makes things alot harder doesn't it...

It really makes things alot harder doesn't it...

Well,I have been there too! I had to see way to many cardiologist befor I found one would listen to me. The replacement was the best thing that ever happen. I was like a new person. I wish luck and hope you feel better. I think a new Dr. would be a good start.

I mean, WE...NOT THE DOCTOR'S have to deal with the symptoms of our illnesses, and WE are the ones who have to worry about making it through another day...THEY DON'T. I am wondering, how did you go about seeing a surgeon to have your replacement without having to have a referral from your Cardiologist? I tried to get into see a cardiac surgeon but they wont let me see them without getting a referral from the cardio, and the cardio will not refer me because he thinks I am ok.......Thanks for your help in advance, and your support and encouragement. Harrybaby666