Looking For A Doctor Referral - And Does It Matter?

[Wrecked944]

As I mentioned in an earlier thread, I recently developed pretty severe congestive heart failure. So I am looking for a good cardiologist in New England who specializes in CHF. May I ask if anyone can recommmend a doctor?

And on a related note: Does it really matter which doctor I go to? My current understanding is that there is no cure. So there isn't a whole lot a doctor can do aside from readjusting my meds every now and then. So is there really any point in seeking out a specialist?

[stomachmonkey]

I hear the guys at Jiffy Lube know how to change oil but would I go there.

I think it's probably worth looking for a specialist.

They may have knowledge of new treatments/protocals well in advance of a GP.

Good luck.

[sjf911]

Heart failure management is its own specialty now although many cardiologists are quite competent. The care is very standardized now with emphasis on salt restriction, self-titration of diuretics, beta-blocker therapy (carvedilol preferred), anti-aldosterone therapy (eplerenone or spironolactone), ACE inhibitor therapy, and possible Angiotensin Receptor Blocker (ARB) therapy concurrent with ACEi. Empiric defibrillator (AICD) placement for ejection fractions of less than 35% is also indicated. However, the cause of the cardiomyopathy is important. Those with coronary artery disease may benefit form bypass surgery, Mitral Valve repair, or aneurismectomy if appropriately selected. Those with idiopathic cardiomyopathy sometimes improve dramatically with medical management or such things as cardiac resynchronization. Evaluation at a transplant center may be beneficial.

[Rot 911]

Janus you need to find a doctor that is on the cutting edge of what you need. Someone optimistic and willing to work with you.

I have Crohn's disease and I posted here about ending up in the hospital. At first I just heard from doctors that said surgery was my only option. Unfortunately they also pointed out that once you have surgery then you can expect more and more surgeries in the future. My outlook was certainly grim. Then a doctor comes in that has made a career out of leading edge treatment for Crohn's patients. He presented me with a non-surgical solution, that in the end worked for me. Maybe sometime in the future I might need surgery, but because he had kept up with the research, that sometime may be a long way off.

[KFC911]

Janus, I don't know how I missed that other thread (just searched and found it), but I had no idea...words don't come right now, but I'm thinking of ya brother.

[Noah930]

PM sent

[jackpine savage]

Originally Posted by JanusCole

As I mentioned in an earlier thread, I recently developed pretty severe congestive heart failure. So I am looking for a good cardiologist in New England who specializes in CHF. May I ask if anyone can recommmend a doctor?

What is the 2nd opinion you're looking for? The diagnosis itself or the treatment? I have been wondering about this myself as I developed supra ventricular tachycardia (SVT), 2.5 years ago, had the ablation surgery, but the so-called "specialists" didn't follow up on a thing after the surgery. Until I was in the ER again with extreme palpatations, pains in my left shoulder/arm, and numbness in my chest.

[Wrecked944]

Originally Posted by jackpine savage

What is the 2nd opinion you're looking for? The diagnosis itself or the treatment? I have been wondering about this myself as I developed supra ventricular tachycardia (SVT), 2.5 years ago, had the ablation surgery, but the so-called "specialists" didn't follow up on a thing after the surgery. Until I was in the ER again with extreme palpatations, pains in my left shoulder/arm, and numbness in my chest.

It is long term treatment I am wondering about. I spent a week in the hospital last month during which my condition was discovered. And the cardiac specialists in hospital ran a zillion tests and developed my medication regime. So I already have my diagnosis and meds in hand. I just don't have anyone aside from my GP to see for long term care. So I am searching for a reference.

That said, I was also questioning the utility of seeing a specialist. My understanding is the mortality rates for CHF are the same regardless of treatment. All my doctors in hospital said was that they could make me "comfortable" as I circled the drain. So it seems sort of pointless to seek out a specialist. My GP can give me bad news just as well as a specialist.

[Rot 911]

Originally Posted by JanusCole

My GP can give me bad news just as well as a specialist.

The difference is that a specialist keeps up on the leading edge treatments, whereas the GP doesn't. It was my GP that kept insisting that I had to have surgery. The specialist, who kept up with treatments, knew of other alternatives that worked in my situation.

[Rikao4]

Janus,
many moons ago I screwed up bad..bad enough for last call,
while everyone had written me off..I sat up and said..not ready...
while it may not look good...your outlook has alot to do with your time..
we are pulling for you..don't be lazy, run the race, if you don't win..you ran...
Rika

[Moneyguy1]

Janus....Sorry to hear about your situation.

Before choosing a specialist, please go to your state's Medical Board website. Most, if not all of these sites have the ability for a patient to see if a doctor they are considering has a less-than-stellar record. The site will contain info as to whether a specific physician has been given "letters of concern", had a license revoked in other states, or other action. Better to be safe than sorry. My wife might be aive today if I had known such info was available; her gasrinterologist had had his license revoked in an adjoining state and other censures were listed.

Good luck and the best for you!!

[Dan in Pasadena]

Originally Posted by jackpine savage

I have been wondering about this myself as I developed supra ventricular tachycardia (SVT), 2.5 years ago, had the ablation surgery, but the so-called "specialists" didn't follow up on a thing after the surgery. Until I was in the ER again with extreme palpatations, pains in my left shoulder/arm, and numbness in my chest.

Comment on this quote in a minute but Janus, my thoughts are with you buddy!

Not to raise a difficult or perosnal subject but has heart transplant been discussed? Are you a viable candidate for it otherwise? If these things have not been discussed (and you are open to considering them) then there is some possible work to be done. I'd strongly suggest you pursue those questions. Your comment on "circling the drain"...I humbly offer that we ALL are. Isn't it Vin Scully that said, "...he's day-to-day...but then aren't we all?"

As for the tachycardia; I was diagnosed with WPW Syndrome - Wolfe Parkinson's White Syndrome, when I was 18 years old. I lived with periodic severe tachycardia episodes, borderline blackouts, etc through my 20's. These lessened until almost gone then recurred in my 40's as my 20 year marriage ended. I damned near crashed my car into the center divider one night and said, "That's enough!" I saw a specialist, I underwent catheter ablation at Good Samaritan Hospital about four years ago and have not had another episode again. AFAIK, Danny is fixed! If that DIDNT happen for you? I think you need a 2nd opinion on the efficacy of the ablation you had.

Best to all, sincerely!

[Joeaksa]

Janus,

Sorry to hear about the medical issues. We all will be saying a prayer for you and keep looking for other options. When you give up, usually everyone else around you does as well, so keep pushing ahead.

Joe

[artplumber]

Janus,
Sorry to hear about your diagnosis. As a generalization, CHF isn't really a subsubspecialty of cardiovascular medicine, but in academic centers there are folks who limit their practice to end stage CHF and transplants. In New England, you would have the (famous) Mass General. There is prob a transplant program at Tufts as well. Umass should have something although they may be overshadowed by the Boston programs. There are a lot of options other than transplant too. Things are usually pretty dynamic in the first few months or year of diagnosis. It's not time to throw in the towel. Keep your chin up buddy. At 41, if your function doesn't improve and you're very symptomatic, a transplant should be an option. OTOH, transplants have their own bag of problems (not the least of which is diffuse atherosclerosis in 10 yrs assuming one gets a heart etc).

Maybe you should pm me about where the work was done and if you have any questions in particular.

[Wrecked944]

Thanks, you guys are very kind. And don't worry, I'm really not as morbid as I must seem in this thread. I'm just trying to be realistic and not waste time and energy on anything unless I am convinced it will help. It sounds like going to a specialist may pay dividends, so I'm game to give it a try.

artplumber: Thanks for the info. I am vaguely aware that we have some great hospitals here in New England - Mass General, Tufts, Brigham and Women's...but I don't know how I'd find or select a doctor from one of them.

Originally Posted by Dan in Pasadena

Not to raise a difficult or perosnal subject but has heart transplant been discussed?

I'm certainly willing to get a transplant - but only if I can have the heart of a convicted killer! What's the point of living if your life can't sound like a made-for-tv movie?

[nut11]

The best to you and hang in there. I very much enjoy your participation in this community.

87 blk coupe

[artplumber]

Janus,
One needs a little more info before suggesting a course of action. Hence, my suggestion that you pm. As a for instance, there are a number of approp drug classes that might be considered for successful treatment of heart failure etc. - impossible to tell without more info. Further, I would not leave your care in the hands of a primary care physician. At the very least a general cardiologist should be treating you. As I wrote before, the first months after a new diagnosis can be very dynamic, and you may improve your heart function dramatically. Any general cardiologist should be facile enough to do this. Reasons for moving up the referral chain are evaluation (just in case) for transplant, persistent poor functional class etc. A primary care doc should be able to refer you to a cardiologist (how about the folks who did your workup?), who should be able to refer you to an academic heart failure/transplant service. Further, not all major names have the program (eg/ I think Beth Israel doesn't have a transplant service because Harvard has it at MGH and the Brigham.) Realize that the more academic, the more likely you will be dealing with residents and fellows (and maybe even nurse practitioners and PA's) and less with the attending staff.

Just a last note, whether it be doctors or mechanics, a good question to ask of anyone is "If I can't get X done by you, who else would you suggest?" Pretty soon, a few names will keep on popping up. Sometimes the most published/famous isn't the one you want. You know what you respond best to (in terms of relationships). Tell people what you'd like. Old v young, funny v straight shooter, academic v down-to-earth.... Whatever you do, don't just pick a name from the phonebook.

[Dottore]

There are almost always options.

In 1960, doctors gave Carroll Shelby a maximum of 5 years to live. I think he also had CHF - but I could be wrong. But the point is the same.

He sought all kinds of treatment - until in 1990, he finally had a heart transplant. Well he's still alive, and has led a rich and varied life.

Never, ever, give up.

[tcar]

My Dad had CHF... for years... he died from other stuff at 82.

There are, at the very least, new drugs being developed all the time. One of them increased his quality of life significantly, was a lot more active and felt light years better.

You need to find a specialist that works with this, he/she will know about new advances and be able to get new drugs; perhaps trials of new drugs that might make a HUGE difference.

The longer you stay with us, the better the chances of something helping/curing.

He11, in 5 years they may be able to grow you a new heart.

Hang in there.