Cardiologist vs. PCP

[ALCapshaw2]

AARGH !

I'm somewhere between 'greatly disappointed' and P.O.'ed after being bounced between my Primary Care Physician and my Cardiologist for the year since my AVR.

The bottom line is that my recovery has been somewhat short of my desires and expectations. I'm envious of all the 'super recoveries' I read about here on VR.com

On my good days, I can push mow my grass for an hour or two or walk 2 miles up and down the small hills on my street. On my not-so-good days, I get Short-of-Breath (SOB) just walking around and sometimes even find myself breathing through my mouth at rest. For some reason laying down makes breathing even more difficult than sitting or standing. A small change in weight (fluid retention?) makes a BIG difference in my exercise tolerance and general well being. At one year post-op, it seems I'm having more not-so-good days.

When I ask questions of my PCP (board certified in Family Practice and now Bariatric Medicine), she refers me to my Cardiologist. My Cardio is one of 25 in a large group that serves as a regional center. He has made it clear that he now wants to see me ONCE per year unless something major develops and implied that I was coming in too often during my recovery (for things like TIA's, difficulty breathing due to one lung not fully inflating, fluid in the lung cavity, inflamation of the chest wall where the chest tube hit the back of my chest cavity, and shortness of breath due to fluid retention). Can you spell U N A V A I L A B L E ?

I feel like a ping pong ball, being bounced bank and forth. I was told to take Lasix every other day to drain off the fluid but not given an explanation for the CAUSE of the fluid retention. I note some Mitral Valve regurgitation (which was NOT addressed by my surgeon....that's another long story) and Left Atrium Enlargement which no one wants to talk about. I often wonder if I should have gone for surgery when my Aortic Stenosis was first discovered. Can't change that now.

SO, am I expecting too much of my Cardiologist in monitoring and treating my residual conditions? Is my PCP not up to the task? Who do I turn to?

I'm thinking I need a GOOD INTERNIST who can sort out my Heart / Lung / upper GI issues but how to find one? Should I ask my Cardio for a referal? or my PCP? Does this mean giving up my PCP who is a good diagnostician and with whom I have a good rapport?

My appologies for this long diatribe. I guess I'm more on P.O.ed side this morning. ;-(

'AL Capshaw'

 

[Marty]

Second opinion

Second opinion

Al, I don't give this recommendation often but you may need a complete new "workup". You may need to think about Cleveland Clinic or Mayo's. Both these places are used to getting patients from all over who aren't doing well and not just in heart but also in GI, GU, orthopedics, etc. I agree you aren't doing as well as you should.

 

[Ross]

Al if it helps, I share in your dilema. I think you need to get another Cardiologist.

My latest visit to the PCP kind of has me down. I was hoping for much better results after my nightmare surgery last July. Instead, I'm more incapacitated now then before. I can't do anything without being breathless and having this Oxygen all the time is a real nusiance. The Doctor told me in short that my lungs have had it and I should know that I'm in danger. He said that if I were to have another surgery or something that would require the use of the ventilator, that I might very well never come off of it or possibly even die. I too am envious of the great outcomes, but it wasn't in my cards, so I guess I should be happy to just be alive.

Anyhow, PCP is wanting me to go to the Cardiologist and I know he's going to scream because I haven't seen him since the surgery. I often feel that none of them are on the same page at that really bothers me. I don't have a lot of choices to turn too either since I'm on a Medicare HMO. I stay with my PCP because he's been my Doc since the stone age and has brought or been with me through every major crisis that I've had, which is many.

I sometimes think these Cardiology groups get a case of the "Big head" syndrome and forget just what they're supposed to be doing. I've noticed a huge change in the treatment since mine has become part of a large group. It's not for the better either.

 

[Nancy]

Hi Al-

I agree that you need to seek more specialized cardiology help. Your PCP is probably frustrated also, because it sounds as if your cardiologist just isn't wanting to help you and is almost "blowing you off" by telling you that you are coming in too much. The things you mentioned are serious and should be addressed by your card. I'm sure your PCP is doing the best that can be done within her parameters, and the card isn't.

There might be a more specialized cardiologist around your area, say someone who specializes in CHF and more difficult cardiology problems.

If there isn't someone more specialized, then seek help at one of the large centers. You shouldn't have to suffer like this.

My husband outstripped what could be done for him in the immediate vacinity, no fault of anyone's, he just needed more specialized cardiology and pulmonary care. Fortunately we had that within 20 miles of where we live, but others have to travel to get it. It would be worth the peace of mind for you to get some help.

Best wshes.

 

[bvdr]

Al,

I join in with the others and think you have to get a fresh look. I read on a post here once to remember that your Dr. works for you not the other way around.

I know many excellent doctors and I notice that sometimes when things arn't going real well and what usually works doesn't then frustration can set in and sometimes avoidance after that. A different set of eyes looking things over may be to your benefit.

I sure hope you start feeling better..........you too Ross! Don't ever give up!............................................Betty

 

[lcwhitney]

Al,

How long has it been since your surgery? My surgeon told me that it would take a good two years to get to a full recovery. I too have had many problems and will be having another surgery as soon as my surgeon can schedule it. My cardiologist felt I was wasting his time, my favorite doc my PCP called him and let him know that he was sending me to see him and what tests he wanted done and that he would be expecting his written reports. I have not had too much trouble with him since. All this rambling to say that I think you either need a new cardiologist or to see a good internist along with your PCP. I really hate it when doctors act like they are doing you a favor by seeing you. THEY GET PAID TO SEE YOU AND ANSWER YOUR QUESTIONS AND THEY ARE VERY WELL COMPENSATED FOR THEIR TIME. tHEY SEEM TO FORGET THAT WE PAY THEIR SALARY IT IS THEIR PATIENTS WHO ARE DOING THE A FAVOR!!!!!!!

Lettitia

 

[terry40]

Hi Al

Hi Al

I'm with the rest in suggesting you seek another cardiologist, and since you still have confidence in your PCP I would ask her for a recommendation.

We all recover at a different pace, I was amazed at the "super recovery" of some on this sight, while my feet/heart seem to be dragging, but I think yours is not just a recovery issue, problems with fluid retention, SOB, having problems laying down and breathing, and having more bad days then good is an issue for a good cardiologist to help sort out.

Keep us updated, best of luck,

Terry40

 

[eekas]

I just wanted to add that I currently am under the care of a very well respected internist in my town b/c my cardiologist was not listening to me and was not doing anything for me even while I am newly symptomatic. For me it was the best situation to see an
internist and she has been just great in helping me. Only my thoughts, Erica

 

[medtronic of borg]

I know you want to get back to the place you were before.."normal". But that is simply imposible! Your heart and mind are now different then before. You are no more the person you were.

I walk to the corner of my land and back and that is a 1/2 mile walk. I feel that is pretty good. So I'm woundering what the &^%& you are complaining about? Some people cant even get out of bed nerviously waiting for a heart, and you complain about two miles?

For those of us that were born with CHD and began life struggling to survive..we learned that adaptation is the key.We all have to face the fact that the human body was not made to be cut into. Now that it has adapt!

Medtronic of Borg

 

[bvdr]

I personally think too many people settle for less than they have too. There certainly comes a time when one has to adapt and accept but there are avenues to be explored here!

Med, you have had to deal with so very much and are struggling to see light at the end of your tunnel. Other people are in different tunnels and I really wish that they not only see the light but totally get out! Med- please don't give up....................Betty

 

[ALCapshaw2]

"So I'm woundering what the &^%& you are complaining about? Some people cant even get out of bed nerviously waiting for a heart, and you complain about two miles?" - Medtronic of Borg

M.B.

If you go back to my original post you will note that on my GOOD days, I can walk 2 miles. On my NOT SO GOOD days, I get short of breath just walking around or going upstairs and sometimes even just laying down. Also, the number of NOT SO GOOD days seems to be increasing. THAT is what I am complaining about.

Even on my GOOD DAYS, I have to pace myself, but as you so eloquently pointed out, I'm NOT THE SAME as I was "before" and there's not much I can do about that other than to keep pushing my limits to maximize my stamina. You sound like my Cardiologist!

'AL'

 

[John Cochran]

Al and Ross,
I really sympathize. The different doctors don't seem to be well connected, and once you've had your surgery, any previous coordination seems to dissolve.

Al, I too have some mitral regurgitation and atrial hypertrophy, which my surgeon claims didn't show up when I had my pre-op angiogram. I also know a couple other AVR patients who now have leaky mitral valves. I wonder what the deal is with that?

Sounds like a new cardiologist is a good idea. My son, who had far worse problems than me, went through 3 cardiologists before he found a really good one. I met all of them at one time or another, and I'm convinced that something about being a cardiologist causes personality disorders.

I don't think you should settle for the symptoms you've described, and another independent work-up might be just the ticket...it sure worked for Nancy's husband Joe!

Good luck, and let us know what you find out!
--John

 

[Granbonny]

Al

Al

I sometimes feel like the weather can bring one down..We are in same zone North Alabama and North Georgia. We get the rain a few hours after you..I have not seen the sun since Mother's Day when I took age 10 year old grandson fishing, picnic, ect..Just dragging thru the muggy rainy days..They say we will have sun by weekend..Dud? Now I'll taxi Grandson around in rain for 4 days. Yikes The sun will shine again and I'll complain about the Southern heat Take care neighbor Bonnie

 

[Nancy]

Hi Al-

Remember a lot of parent's advice. Son, don't just "settle" for things as they are. Sometimes we have to go knocking on a few doors to get the answers we need. There are always reasons for feeling the way you do. It might take a lot more effort than your present doctor can put forth. Not everyone in the medical field has the "stick-to-it" attitude. Some conditions require a lot of testing and research. But there are actually docs that like to do that. Takes a little of investigation to find one, though.

Wishing luck to getting some answers for yourself.

 

[Zazzy]

Hi Al,
Boy talk about FRUSTRATION!!! I'm so sorry that you have to deal with this. If I were you, I would have a long talk with both your PCP and your cardio. Explain your fears, feelings, etc.

I was having a problem with my hospital/clinic here. Whenever I would go to the walk-in clinic, which is part of our ER, the docs were afraid to treat me. One doc even said that I had no business going to the walk-in... that I should be seen ONLY by my PCP. This left me feeling rather unwanted lol. A talk with our clinic's manager righted the situation. I found that the ER docs were afraid to prescribe anything for me because of interactions with my CML med, Gleevec.... so I now have a PCP and a back-up PCP when my regular PCP is unavailable.

Keep bugging the cardio... if he gives you trouble, ask him for the name of a new cardio and explain that you need a doc who will pay attention to you.

Take care,
Zazzy

 

[sylviayasgur]

hi al!
i 'm sorry to hear you are not feeling that great. must be very frightening, right?
i agree with all the others. you should definitely persist and either have a talk with the docs or seek new help.
whatever you do, DON'T GIVE UP! they always say we should 'listen to our bodies". your body seems to be saying that something may be wrong. please take care of yourself and let us know how it all turns out.
wishing you all the best, sylvia

 

[pegne]

Ali

Ali

I am with all of those who say "seek and you shall find." I was a 37 year old who nobody wanted to touch because my condition was too complicated. I had gone as far as Boston and almost went to Toronto. I was living in an abyss full of confusion and fear. I found the right place for me because I decided I needed to have quality of life along with quantity. I know I made the right decision. 41/2 years later I am doing great. I hope you seek out somebody who will be willing to help you. There are many cardios out there that do not have god complexes. Who are still in this because they want to help. I know there is one out there for you. Good Luck.

 

[Gisele]

Al

Al

I think it is time to start looking for a new cardiologist. I would first start asking around to my friends and family by asking them if they know nurses who work in the local hospital. Nurses who work side by side with these docs tend to know who the good ones are and who to avoid. Speak to more than one person. After you have made a choice, just send a written letter to release your medical records to Dr. XX and you won't have to deal with him again.

Al you must be so frustrated, but maybe this will be the push to get you to go to someone who will care for you properly without making you feel like a nuisance.

Good luck.

 

[ALCapshaw2]

I want to Thank You ALL for your thoughtful and constructive responses.

For starters, I have obtained copies of my Echo Reports for the last 4 years and found some interesting 'changes over time' that I want to get explained.

I would prefer to start locally and will pursue a referal to another Cardiologist who would be willing to answer my questions.

As much as I like my PCP, I suspect I may need to either change to, or at least add, a good Internist to my arsenal of medical providers.

If further expertise is required, I'm tempted to go back to the Kirklin Clinic which is a LARGE and respected multi-faceted Diagnostic Center at The University of Alabama in Birmingham. My surgery was performed at the University of Alabama Hospital in Birmingham. This facility is within 2 hours driving time from my home.

Thanks again to each of you for your consideration and support.

'AL'