Back From Cardiologist....Frustrated As EVER!!!

[Harrybaby666]

Hi Gang,
I got back from the cardiologist's office and I am as frustrated as ever...I went in and told Dr. Cutler that I had seen Dr. Wirth(the PH specialist), and that Dr. Wirth had told me that it was my heart, and that he thought that I had Aortic Stenosis after he performed every lung function test on me and found nothing, and what strikes me funny is that he didn't even try and test me for the PH, he just looked over my last echo (Last August) and the Echo that indicated that I had PH and then told me that I didn't have it....So I went to Dr. Cutler and told him all this and Dr. Cutler, told me without even looking further into the issue that I didn't have Aortic Stenosis, but yet, he wouldn't explain to me what he thought it was, and put me back on an event monitor and I am schedualed for another Echocardiogram on 03/31/06 with a followup visit a week later...

Right now, I am just feeling that because I am on Medicaid and Medicare, that the doctors don't want to do thourough checking as opposed to those who have regular insurance...I know something is going on, but I don't think that either Dr. is all that enthused at really trying to find the problem, and here I am still having a hard time breathing, having chest pains and frustrated as ever....Sorry for venting...I am just soooooo disgusted....Harrybaby

 

[Nancy]

Your post frustrates me as well. I just don't understand your doctors, especially the cardiologist. But he IS doing further testing (event monitor and echo, and followup visit). You are going to get copies of your echo, right?

Have you tried writing a letter to him, spelling out all your symptoms? Nothing too threatening, just stating things as you are experiencing them. It might help for him to have it in writing. Keep a copy for yourself, and make sure you date it and sign it.

 

[Karlynn]

Maybe you should go to an OB/Gyn. Sounds like right now he/she'd probably be the one to dx your heart/lung issues!

Just trying to insert a little humor. I'm sorry you keep getting the run-around. Nancy gave you a good idea. At least the cardio is doing some testing.

 

[Ohiosweetheart16]

Maybe you should go to an OB/Gyn. Sounds like right now he/she'd probably be the one to dx your heart/lung issues!

Just trying to insert a little humor. I'm sorry you keep getting the run-around. Nancy gave you a good idea. At least the cardio is doing some testing.

hi harry i know the feeling about being on medicaid us folk and our health problem dont seem to matter i hope they find something out for you whatever it may be at least you ever us to vent too we listen and care it sucks when you dont feel well and doctors dont seem to care keep me posted and good luck

 

[twinmaker]

Hey Harry...I thought about you today and your appointment with the cardiologist. Sorry that they are giving you the runaround. I know that's frustrating and it just shouldn't be this way. I am glad that he has you on an event monitor and that you will be getting another echo and another visit. Hopefully, they will be able to tell what's going on so they can do something and you will feel better. I will continue to keep you in my thoughts and prayers. LINDA

 

[Wise]

Sorry for your frustrations there. Hopefully it all comes together in the end. If not, then try Karlynn's suggetion. A chiropractor is the first person to tell my late brother that he had serious heart problems and referred him to a cardiologist; my brother went to him for cluster headaches, which resulted ultimately in his BAV diagnosis and subsequent surgeries. So, an OB/GYN should atleast be able to match a chiropractor, huh? (That's was funny Karlynn). Take care.

 

[geebee]

Harry,
We are with you, my friend. We have all been through similar BS. Glad to hear that the cardio is "humoring" you with some tests but maybe they will yield some answers.
Like Nancy said, be sure and get the echo report so you can post it here. Then maybe WE can help figure out what is wrong.
Please take care.

 

[aussigal]

Hi Harry,


It really annoys me when you feel something you know is wrong and after seeing the Doc. you havent had any defining news...it feels like a wasted visit and like they didnt listen to you...

At least they have ordered a test or two and a repeat-visit...thats some consolation...

Come here and vent as much as you need to matey, we love you Harry.

hugs and prayers
ton

PS...I dont think its just because you dont have "proper-insurance" ,.. I have experienced this attitude before and its just not right, some Doctors do not have good people-skills.

~very intersting tip Wise !...it was an Osteopath who first hinted I had something "really seriously" wrong too!
worth a thought Harry!

 

[Harrybaby666]

You Know...I actually believe that they would pay more attention....LOL

You Know...I actually believe that they would pay more attention....LOL

Maybe you should go to an OB/Gyn. Sounds like right now he/she'd probably be the one to dx your heart/lung issues!

Just trying to insert a little humor. I'm sorry you keep getting the run-around. Nancy gave you a good idea. At least the cardio is doing some testing.

Yeah, I know that he is at least doing some testing, but, like with the PH Specialist, he did absolutely nothing but look at my past echo's and then said that I didn't have the PH, that it resolved itself, but I just feel that he should have done something else to make a definite yay or nay on the diagnosis....he did check my Pulmonary Function Tests though which delt more with my asthma and lung issues directly, and not the PH...As for the Cardio, I also feel that he could have taken more action on trying to figure out whats going on, such as doing a MUGA or a TEE, I mean, they have told me that echo's are not always accurate, so why not try something that they are sure is accurate?

I do think that the doc would have paid more attention if he were an OB/GYN Karlynn I wonder what he would say if I went back in to the office for my echo in 2 weeks in Drag? LOL Harrybaby

 

[Harrybaby666]

Thanks for your tip Nancy....I am just beside myself...

Thanks for your tip Nancy....I am just beside myself...

Your post frustrates me as well. I just don't understand your doctors, especially the cardiologist. But he IS doing further testing (event monitor and echo, and followup visit). You are going to get copies of your echo, right?

Have you tried writing a letter to him, spelling out all your symptoms? Nothing too threatening, just stating things as you are experiencing them. It might help for him to have it in writing. Keep a copy for yourself, and make sure you date it and sign it.

All I seem to get from him or my other doctors is that I am "deconditioned" and that I need to get out there and exercise, but then on the other hand, they tell me NOT to exercise...My PCP, and Cardiologist both are very wish washy...one minute they tell you one thing, then on the next visit, they tell you something totally different....THEY ARE NOT CONSISTANT by any means, and I think that this is THE most frustrating part of the whole thing...and again, I think it may be due to the fact that I am on Medicare/Medicaid...Go figure....anyway, thanks for the support Nancy...Harrybaby

 

[Marguerite53]

Grrr. I'm sorry you are so frustrated. But look, Harry. I think these people take an oath, you know. They are interested in helping you. If they use all their tried and true ways and aren't getting numbers or results to give them answers, imagine how frustrated they must be about not being able to help you.

I think that the event monitor might tell them something....who knows. Try to vary your experiences with it. Go out and do something abit more strenuous than usual and pop the thing on during and right after that. I don't know if yours works the same, where you phone in the event each time and describe what was going on. Tune into your habits and get those episodes down on the monitor for them. If your heart is struggling then there should be something showing up. Play around with it.

The deconditioning thing is a thorn in many of our backsides. How can you condition yourself if you're scared to bajeebers to push yourself because your body is screaming stop!! You have my sympathy on that one.

Just keep plugging away. Let us know how it goes! Hang in there!

Marguerite

 

[Mary]

Hi Gang,
I got back from the cardiologist's office and I am as frustrated as ever...I went in and told Dr. Cutler that I had seen Dr. Wirth(the PH specialist), and that Dr. Wirth had told me that it was my heart, and that he thought that I had Aortic Stenosis after he performed every lung function test on me and found nothing, and what strikes me funny is that he didn't even try and test me for the PH, he just looked over my last echo (Last August) and the Echo that indicated that I had PH and then told me that I didn't have it....So I went to Dr. Cutler and told him all this and Dr. Cutler, told me without even looking further into the issue that I didn't have Aortic Stenosis, but yet, he wouldn't explain to me what he thought it was, and put me back on an event monitor and I am schedualed for another Echocardiogram on 03/31/06 with a followup visit a week later...

Right now, I am just feeling that because I am on Medicaid and Medicare, that the doctors don't want to do thourough checking as opposed to those who have regular insurance...I know something is going on, but I don't think that either Dr. is all that enthused at really trying to find the problem, and here I am still having a hard time breathing, having chest pains and frustrated as ever....Sorry for venting...I am just soooooo disgusted....Harrybaby

Harry,
If the pulmonologist was going to do a thorough check for PH, he would probably want you to have another right side heart cath or use a pulmonary artery catheter to measure the pressures. An echo gives only a very basic reading of pulmonary pressures. If you've been using C-PAP, then it's possible that your values have improved.
I'm guessing that the pulmonologist wanted to throw it back to the cardiologist. If the cardiologist says that you don't have aortic stenosis, then what do the copies of your echo report say? Maybe he is waiting to get the results from the event monitor and the echo on the 31st before he gives you a definite diagnosis. I think you really should secure your echo reports so you can track any, and all, changes. We've learned around here that often we have to be our own best advocates. Hang in there and try not to stress over this.
Mary

 

[Harrybaby666]

I am going to get a copy of my Echo, but......

I am going to get a copy of my Echo, but......

Harry,
If the pulmonologist was going to do a thorough check for PH, he would probably want you to have another right side heart cath or use a pulmonary artery catheter to measure the pressures. An echo gives only a very basic reading of pulmonary pressures. If you've been using C-PAP, then it's possible that your values have improved.
I'm guessing that the pulmonologist wanted to throw it back to the cardiologist. If the cardiologist says that you don't have aortic stenosis, then what do the copies of your echo report say? Maybe he is waiting to get the results from the event monitor and the echo on the 31st before he gives you a definite diagnosis. I think you really should secure your echo reports so you can track any, and all, changes. We've learned around here that often we have to be our own best advocates. Hang in there and try not to stress over this.
Mary

This cardiology office doesn't like to give out records of any sort, and they try their darndest not to....I had the hardest time getting ahold of my last Echo, and they were getting very rude about my asking them for it, and they were trying to find every excuse in the book NOT to give it too me...soooooo......I am figuring that I am going to have another battle on my hands when it comes to getting a copy of this next echo....I just cannot believe that a person can have so much trouble like I am having...I am trying not to stress over it, but it's hard not to when you are short of breath from just climbing the stairs to go up to bed or when you get up and wash the kitchen floor....I guess all I can do is hold on and see what happens next. Thanks for all the encouragement from all of you....Harrybaby

 

[Nancy]

The "deconditioning" statements just make me so annoyed. Joe has heard them too, and from more than one doctor. Yes, it may be true, HOWEVER, he had some MAJOR, MAJOR underlying issues that were making him physically UNABLE to do any exercise.

This is a man who was a conditioned athlete in his healthier years and loves to exercise. He's done it all his life. But he just COULDN't, not that he WOULDN'T.

I say to myself, "guys, how about putting your collective thinking caps on and getting to the bottom of the problems and let's have some solutions instead of platitudes. Then, my man will feel well enough to get back into shape."

I usually just nod my head in agreement, because, yes Joe is deconditioned. But I keep right on forging ahead with pushing for actual answers. Am I annoying? Oh yes, I am. Do I expect that medical science can help? Yes, I do. Do I expect some cerebral activity in the answers we get? Yes, I do.

First things first. Put out the medical fires, then on to the gym.

 

[Nancy]

Oh, Harry, I just read your post about them not wanting to give you copies of your echoes. Just go in there and tell them that you want copies. Too bad that they don't want to give you copies. What is that all about??

You are entitled to copies. Tell them you want them, ask when they will be ready, and don't take any nonsense. They sound like a bunch of two year olds.

 

[hensylee]

Harry, if they get rude again about your records, just tell them your brother/uncle/aunt, the lawyer, said they have to give them to you.

You could also ask what they are hiding that they don't want you to see.

Sorry you are having such a hard time. Blessins, Harry.

 

[Yaps]

Thinking of you Harry, wishing for the best.

 

[MelissaM]

Harry,

One thing that I started to do when the docs got wishy-washy was type up a chronology of events for them to review. For example, on this date, on this time, I had these symptoms, saw this doctor and got this answer. The doc gets to see the pattern of events w/out having to review your chart (they rarely seem to do more than glance over this information anyway), and sees how often you came away with conflicting information. Bring supporting documentation to supplement your summary (echo results, etc), so if the doc pauses at a line item, s/he will have the info at his/her fingertips - otherwise, you are back at square one, the doc making assumptions based on lack of information.

Sometimes it takes putting the whole, conflicting story down in black and white for the docs to realize they have been playing "pass the patient." Basically, the more you can do to help your overworked, not-enough-time-in-the-day doc, the better off you will be.

Good luck.

 

[Nancy]

Agree with Melissa one hundred percent! I have a list of everything that Joe has had done and all his hospitalizations from his childhood. Right now it is four pages long in a small font. It goes with him to every appt. and all hospitalizations. I can't tell you how many thanks I have had from medical personnel. When they ask about prior history, etc., I just pull the sheets out of my wallet and let them copy it. I tried to keep it as short and concise as possible.

They usually don't have much time to wade through a huge file on a patient and the "cheat sheets" help a lot.

 

[rbl1999]

Hi, Harry, sorry for all you are going thru, we have certainly all been there on different issues. I think one of the problems with "MOST" doctors today is that they try to see way too many patients, with all the insurance issues they have to deal with , they have become like "ROBOTS" and very insensitive to our needs. I think we could all write a book about all of it!!!! Please take good care of yourself.. Rose