Cardio appt. with frustrations!!

[Marguerite53]

Well, I was all revved up to go in and get ALL the info I wanted yesterday. HA! Got downtown/hospital with 15 minutes to spare and spent 35 minutes trying to find a place to park!!!! Never had that problem before. Why was everyone at the hospital yesterday??? Thank goodness for cell phones and Starbucks (phoned her office on time that I would be late. Eventually said screw it and parked in the nearest Starbucks lot!!) Very upset about being so late -- it's not me and I've only met with this woman once before (second opinion)

She comes in (she'd been waiting for me--when does that ever happen??) and says there's been no appreciable change in 6 months and she'll have a listen. Scolded me for not losing the weight I'd promised and reiterated how essential it was for me to be in better shape for the eventual surgery. I knew that the aortic valve diameter had dropped below the 1cm squared number (because I had quizzed the tech during the echo 3 wks ago) so I kind of figured she'd be ready to send me off to a surgeon. Nope. She really didn't see why. Thought I should wait until she really felt it was imminent so as not to have to make decisions about valves etc. twice. Why, if it?s another 5 years out, would I want to be making decisions now?? (5 years?? I thought I was much further along!!) I asked her what the diameter was and she said .95. Basically unchanged (is a .95 not different from a 1.2 ???) Said that was based on comparing all 3 echoes (6 months apart). The tech had at first mumbled .75 to me during the latest echo, but I had been pressing him with a lot of questions. He revised it, after reviewing the previous echoes, to the .95. This is all so confusing.

So I asked her when she would send me to a surgeon, at what measure. She said .7. Yikes. She said I want to hang on to my own parts for as long as I can. I querried about other damage to the heart while waiting and she said, well, that's why she listens and looks so carefully, to be sure that's not happening. There is something about a click after each beat that is loud and seems very important to her, meaning my heart is otherwise still quite healthy and functioning. And she must have had reason for the xray and EKG.

I asked whether the stenosis was increasing. She just said that the aortic measurement is what she watches the most closely. She wants to see me in 3 months, to get to know me better. (?? what was wrong with yesterday??) Then another echo in 6 months. I was not able to discuss symptoms with her at all. She thinks I'll feel alot better once I lose some weight and while I'm sure I will feel better (okay, like truly 40-50#'s lost wouldn't kill me -- I'm a pretty big girl) I REALLY KNOW that much of how I feel is not normal. Erggghhhhh!

I had so many questions to ask her and I was so kerflumoxed about being late that I barely got to any of them.

Sorry to go on for so long. Guess I?m just venting. And echoing Harrybaby?s recent frustrations too. And here I thought I had it all under control. I was so prepared. That?s what some of this is, isn?t it? Us not having the control we?re used to. It?s difficult to trust. That I trust this doctor is very important to her. She made that very clear to me. And well I should, she?s Stanford educated, an associate professor at OHSU, past chief of cardiology at one of Portland?s leading hospitals, and currently with dozens of affiliations and on a zillion boards, many regarding women?s health. She is amazing.

Oh. I just called her office about getting a copy of the echo I had done prior to the visit (3 weeks ago, as per her instructions). They can?t fax it to me because she hasn?t reviewed it yet!!!!! No wonder she was being so vague. So what was my appointment for?? Now I am perplexed!

Thanks for listening. Marguerite

 

[Shine_on_Syd]

cardios

cardios

Marg,
Yes as Harrybaby666 eloquently stated yesterday, I have no use for cardiologists when it comes to heart valve disease. Maybe someday I will find one I trust.
I agree with you 100%
As for me, when my left ventricle reached the upper parameter of dilation my cardio said '"we'll do another echo in six months unless you show symptoms". I said the hell with that, became self educated in aortic valve disease, demanded a copy of my echo tape and went shopping for a surgeon on my own. Best move I ever made.
James

 

[Harrybaby666]

Hi Margurite,

Hi Margurite,

You Poor Thing You....It's just not our week for Cardiologist visit's is it??? I have a thought...what about the next time she complains about waiting for you, you submit a bill to her for all the times you have had to wait on her??? This should quiet her complaints about your being late...being well known in dr's offices by now, they have learned that my time is just as valueable as theirs is. I can understand if it's an emergency, but when they just fudge around because they don't want to deal with you...well then...anyway, as far as the weight issue--Don't you just hate it when doctors automatically blame all the medical issues a person has on his or her weight? I mean really...we should force a few twinkies down their throught and see how they like it...LOL LOL (OH I AM SORRY...THE SENSE OF HUMOR IS KICKING IN...LOL). I went to a Nephrologist (Kidney specialist) today to see about my diabetes related kidney trouble and he strongly suggested that I go through Gastric Bypass Surgery (And I Stress: !!!!) and he told me that I would be headed towards a major catastrophic incedent if I didn't. So, needless to say, I am going to have to look into it...So I just wanted to let you know that I am right there with you, and I wish nothing but the best from hear on out for you...Take Care, God Bless, and all that jazz...LOL Harrybaby

 

[ALCapshaw2]

As I (and several others here on VR.com) have observed, many cardiologists like to postpone surgery as long as possible. Most surgeons prefer to operate BEFORE PERMANENT DAMAGE is done to the rest of the heart.

If I were in your place, I would start interviewing Surgeons - NOW. Take a copy of your echo with you.

While you wait for your appointment, read over the Pre-Surgery and Valve Selection Forums as much as you can.

For years, I took a small notebook to all of my doctor appointments with notes about 'issues' for the appointment. I now type up a single page sheet with all of my 'concerns' and 'questions' that I want to discuss during the appointment. It helps to expedite the exchange of information and helps to prevent 'forgetfulness'. My doctors seem to like the idea.

'AL'

 

[Shine_on_Syd]

I just can't understand this!!!!!!!! Folks I just visited with Harry on Monday and believe me he is not obese by any stretch of the imagination. He has lost weight and looks good. Gastric bypass surgery is a last resort for severe bariatric patients who are morbidly obese. It is not the safest of surgeries. There have been several publishsized deaths in Boston Hospitals from these surgeries. I think they even stopped them for a while at Brigham and Womens. The mortality rate for OHS is only 2 1/2 % and I think it has to be lower than gastric bypass.

 

[M&M]

Hi, I can't help but to sympathize with alot of your situations regarding 'some' cardiology care some of you have experienced. I can relate wholeheartedly as I had the same problem with my 'previous' cardiologist - he never stuck to the 'issues' because he didn't know what the issues were. He didn't know what he was doing - but he was sure it was all in my head.. I fired him..

Thereafter, I developed a new 'strategy' when I go to the doc's. My very first visit - I interview him and we discuss my future 'quality' of life. If I don't have the quality of life - I should be having - then we need to find out WHY !!! Always talk about your Quality of Life - that takes the personal issues out of the picture and makes it more professional medically. Several suggestions that I found work for me..

1. Do NOT make your visits a friendly visit. Its business - don't make your health situation a personal issue. Stick to the 'facts' and if you have to then bring out the copied reports of your records and 'ask' why it says this and 'why' it says that.. You have a right to know - its your health. They get paid to do a job and they need to do their job. Its not about if you 'lost' weight or if your 'stressed' or any other excuse. If you can't walk and breath or can't function. Then they need to run the 'proper' tests.. to find out why you don't feel good.

2. I always read the 'guidelines' that most doctors adhere to reguarding any symptoms - those guidelines are set by the American Heart Association - pertaining to your diagnosis.

3. Always get copies of your reports - bring them to the next appt if you have to - ask questions - you'd be surprised how many docs don't even read the reports from other doctors. Be nice and be professional - don't make it a personal issue - we are all human - they have a tremendous amount of patients - most are generally professional and want to make you feel better.

4. Bring a list of your questions. Don't be deterred from asking them and don't feel bad if its a long list. Its your visit and your health. Be confident.

5. Most important - and I mean if you're really tired of the Bull S--t and not getting the proper care that you need - I find if you bring another person with you to your doctors appt... it does wonders for your future care. You'd be surprised how much more respect you get when you ask questions and voice your concern. Any doctor who feels uncomfortable with two persons visiting him is an insecure doctor who doesn't know what he's doing and your questions are beyond his expertise. Which is 'fine' - only he should give you a referral to someone who can answer your questions. TWO persons asking questions.. is much more effective than any ONE person is..

I always talk about my quality of life and how important it is to me to achieve the best quality. If they can help me - great- if they can't - then we need another expert brought in. Cleveland Clinic has a great Q&A board - I actually got to post a question - ONCE - and liked the docs suggestion - sent it to my cardio doc and he was more than happy to assist me. If he hadn't been I would have gone to Cleveland Clinic and sought their opinion in person. The Cleveland Clinic Heart Forum is great place to ask medical questions. Those doctors are fantastic.. and I think my doc is fantastic - cause he listens to ME.. Thank god - I have a doc that listens to me.. But its never a friendly visit unless I feel great... I go for quality.. get what I want if I need anything. Most of the time - I feel great. So, I can be happy with visiting him - as I don't have to be feeling awful all the time to see him and get checked out. Those are my favorite visits - but unfortunately they can't all be like that. Its BUSINESS.. sorry to say - but its BUSINESS - bring a friend with you.

Good Luck
Hand in There
Marilyn (runner)

 

[Abbanabba]

I'm sure doctors (not just cardios) love to fall back on the ol "you just need to lose some weight" when they can't figure anything else out.

I've never been overweight, but over the last 2 years my physical endurance has been decreasing at an alarming rate and as a result I've gained about 8kg (..which I think is equivalent to about 20 pounds..). When I brought this up with my cardio he seemed to think I was upset that I had gained weight, which was exacerbating my "anxiety/depression" that is the alleged cause of my symptoms

I couldn't get it through his thick head that it wasn't the extra weight that was concerning me, but WHY I had gained the weight... MY INABILITY TO DO ANYTHING ANYMORE!!!!

I'm sure that even if I had always been overweight, I would have noticed an marked difference in what I COULD do to what I CAN do now. To repeat this yet again, we know our own bodies and what they are capable of under "normal" circumstances and we sure as hell can notice when things aren't working right.

I can appreciate that weight loss can help with energy levels and overall well being, but the sypmtoms we're all familiar with are not necessarily related to being overweight and shouldn't be treated as if they are.

OK...... getting off my soapbox now.

Hope things go better for you at your next appointment Marge.

All the best
Anna : )

 

[ALCapshaw2]

Marilyn's suggestion to "bring someone else along" to your Cardio appointments has a LOT of merit!

I've noticed that when I bring my S.O. along, the doc's who were always 'in a rush' seemed more polite and willing to answer questions. They seem less intimidating when there is a 'witness'. A partner can also back up your reports of reduced capability or SOB etc, which might keep them from dismissing your concerns so readily.

'AL'

 

[Marguerite53]

I so appreciate your responses!

I so appreciate your responses!

Thanks. You are all wonderful and I truly don't know how I would stay sane without this site and all the caring advice everyone gives to each other.

Harrybaby, you are just going through so much and I hope you can get it all squared away soon. I love the sympathy Thank you! In her defense, my cardio was not openly annoyed by my being so late, but I did sense that (could have been projecting my own frustration at the lack of parking). I was somewhat surprised about focus being on the losing weight thing. I'm not out of breath because of the weight. I've been carrying the same weight around for 10 years and used to be able to fly up and down stairs with a bounce and a whistle. Now I feel like I'm going to implode!

I do feel like I'm working myself up into somewhat of a dither about all this and I'm afraid my husband is more likely to say, trust the doctor,honey than come along with me and defend my somewhat pushy approach. (he is very professional in his own business dealings and I think he expects to be trusted. However, his business is radio, not medicine)

I do go in with a list each time I go to any doctor, but I rarely pull it out. I think that a typed list in hand is an Excellent idea (better than the chicken scratch I end up with while driving on the freeway to the appointment ).

Thank you Marilyn for your many suggestions, ALL of which I am going to explore. I know my husband will be totally willing to come along with me, I'm just not sure that he's the right person. I have a cousin locally who actually does angiograms at a different hospital. He's awfully busy and we're not very close, but I may just see if he can come along. He's not afraid of anyone! I'm definitely going to look into the Cleveland Clinic Heart Forum. Thank you.

I'm off to the coast with my hubby for the weekend. He just got a surprise promotion and I'm glad they are letting us keep our plans. It will give me time to digest everything. I'll check back in late Sunday.

Thanks again!!

Marguerite

 

[Marguerite53]

Oregon Coast

Oregon Coast

IS THIS SOMEONE WHO NEEDS TO LOSE 40 POUNDS ????

Oh, whoops!! This picture is of me at the Oregon Coast 25 years ago!!
Just checkin' to see who's paying attention out there!! I am not going to lose my sense of humor over all of this!

Maybe in 3 months when I've lost the first 20 pounds I'll brave a current photo!

See you Sunday!
Marguerite

 

[Karlynn]

Marge - you hottie you! I have to believe that 25 years later you are still one!

I was raised to believe that doctors were a step below God. They know what's best, they know what they talk about and because of that I was not a good one to question what a doctor said to me. If I felt like crap and the doctor said it was nothing, then it was nothing. It was when I ended up in the ER after passing out from arrhythmia and my doctor came in and wanted to prescribe Valium because I was "getting all carried away in my head" that I took charge and got a spine. It sounds like you already have one and are forging ahead - go get 'em girlfriend!

I will footnote this by saying that once I gave the above doctor the boot, it took me 4 more doctors before I found one that gave me the right answers. So keep the faith.

 

[tobagotwo]

I don't blame you for your disgruntlement. Sounds to me like you have a point, and the doctor's not listening.

I'm not a doctor, but .7cm² sounds too long to wait to me, unless you're an athelete. Especially when several of the people I've met here found out (as I did) that the reality was smaller (and more badly encrusted) than the echo - or even the cath - showed.

At below 1.0cm², you are entering the ballpark, depending on other changes in your heart and symptoms. It doesn't mean rush and have it done, but it means close monitoring. While your other numbers are unchanged, one must suspect that the anomaly relates more to different echo techs than reality.

I guess I'm starting to agree with Shine On Syd and HarryBaby666 that when it comes to valve disease, I have no use for cardiologists.

If possible, I would seriously consider a new, new cardiologist. You just started and it seems like this one is already worn out. She seems far too comfortable with an imaginary "safe" number (.7cm²). If it were that simple, we'd all have gone that way. Is it possible that, even as a female cardiologist, she is assuming you need less treatment because you're a woman?

She's right about one thing - you do want to keep your own equipment. Unfortunately, you don't want to permanently wreck the rest of your heart's equipment for the sake of a failing valve that's going to be replaced anyway. Heart valve surgery is a Return On Investment proposition.

Well, in my unabashed opinion, anyway...

Good luck on your quest, Marguerite.

Best wishes,

 

[Mary]

Bob,
Marguerite's cardiologist is giving her a reading of .95. I have been down this road myself, many times, and until she has a cath, no one is going to listen.
I had .7 myself in March, had it redone because the cardiologist didn't believe it, had another .7 so underwent a right/left catheterization. Numbers with it were 1.2.
Skip to late June when Shine On put me in touch with Dr. Stelzer who kindly viewed both the echo and heart cath films. Dr. Stelzer said the echo film was of very fine quality while the heart cath wasn't. His opinion is I have very heavy calcification and believes the opening is somewhere between .7 and 1.2
Nevertheless, he is willing to operate whenever I say when. My quality of life with symptoms is now appreciably less than it was even a year ago. Since the first diagnosis in 2001, I would conservatively estimate that I'm able to do about a quarter of what I was doing at that time.
So, Marguerite, I would be prepared to undergo a TEE or a heart cath to get an accurate idea of what size the valve opening actually is. Then I would go in search of a heart surgeon and have a discussion with him/her about when they think you should be having surgery.
Mary

 

[tobagotwo]

Great point, Mary. Maybe this one can be convinced to send Marguerite for a cath or a TEE. It sounds like she's content to wait for Marguerite to dwindle to .7cm² before she proceeds with anything, though. If the cardio won't listen, she will still need at least a second opinion doctor. I don't believe this one is taking Marguerite or her condition seriously.

After the cath-or-TEE, perhaps the cardio will come around. If not, find another (I know that's no easy task) for a second opinion, and go surgeon shopping on your own, if you have to, Marguerite. The worst they can say is that it's not time yet, and at least give you better reasons.

Marilyn (Runner) also gave some sage advice earlier. If they really don't listen, bring a friend. For a friend, I suggest a concerned husband with a #36 Louisville Slugger...

Best wishes,

 

[ALCapshaw2]

Margaurite, it's time to find a SURGEON.

You will need to make this selection some time anyway and IMHO, SOONER IS BETTER.

In my own case, there was a disparity between my cath and echo so we waited. Next time the numbers were 0.8 vs. 0.79 so my card sent me to the BIG UNIV Heart Center. It took 2 months to get a mutually agreeable date established. By the time that arrived, I was having chest pains and was sent to the Univ Hosp by Ambulance, a 100 mile trip, and put on a balloon heart pump THAT DAY. I firmly believe I got there JUST IN TIME.

After all I have been through and all I have seen from others on this board, I think it is best to let the SURGEON decide when is the best time to proceed. If your cardiologist won't give you a referal, start searching on your own!

Bottom Line: You DO NOT want to wait around to select your surgeon!

'AL'

 

[Marguerite53]

Thanks.

Thanks.

You guys are great. Thanks. Mary, you and I really sound like we're in similar circumstances (and I am a primary school substitue teacher!!) I think I will peruse the Cleveland Clinic Forum, email my cousin with a few questions and then call the cardio at the end of the week, see if she's actually read my latest echo herself yet, and ask her for a referral. She did say she would hook me up with a surgeon if I really wanted to but then proceded to calmly kind of talk me past the idea. I don't see that it would do any harm to see the surgeon! I will be all ready with Quality of Life lingo to get me through the patronizing. I guess I really thought that the relationship building was very important with the cardio. Now I sense that they are just the middle man and someone you have to maneuver past to get through to the real boss.

Just to throw a wrench into the process, I did just begin a diuretic (sprionolactane) to calm down my not that high 140/80 BP (like a gust, not the constant BP. That's more like 130/75). I have also discovered that I am solidly peri-menopausal and we've decided to start me on the lowest dose estrogen and progesterone patch (not birth control worthy. very low dose) After a week on diuretics I'm actually feeling much better. Symptoms still present, but not as threatening feeling. Will chime in with the PCP, though because I'm not "going" more, but much less frequently! (I think it's all about fluid balance, and I'm sure the 30 odd daily trips to the bathroom previously were not acceptable!!) I suspect I'll feel markedly better once on the hormones, too. I think that's good. If I feel better, I'll work harder to get in shape for all this. (I know, everyone is like about hormones, but my ob/gyn is completely trustworthy by me, and the studies had major falacies so I'm going along.)


Does the cardio or the surgeon order the cath? Is that the TTE ? the procedure that goes down the throat? Did I hear somewhere that people with a stenotic bicuspids should avoid an angiogram due to the risk of snagging something unsavory while in there, or something?

Thanks everyone. By the way, the new avatar is of Cannon Beach on the Oregon Coast. Haystack Rock and the Needles. We had a really good weekend.

Marguerite

 

[ALCapshaw2]

Marguerite (correct spelling this time ),

The TEE (TransEsophageal Echogram) is the test where they (usually a cardiologist) places an ultrasonic transducer down your throat. With enough Versed and Demerol you won't feel (or remember) a thing.

An angiogram is where a Cardiologist runs a catheter (usually through a large vein in your groin) into your heart and then injects contrast dye to show blood flow in and around your heart. With a little bit of local anesthesia, you shouldn't feel a thing. Many (most?) people are kept conscious but 'relaxed' on Versed and Demerol. You can actually watch the catheter being advanced on the monitor if you choose to do so. It's 'kinda cool' to see.

A surgeon (or PCP) could order these tests, but cardiologists generally perform them.

Hope this clarifies these testing procedures.
To my mind, they are NO BIG DEAL, and I've had several.

'AL'

 

[Marguerite53]

Thanks again!

Thanks again!

Al, how nice of you to notice and correct my name spelling! It's always been a doozie for people to learn to spell (and then I married a man with a really unusual name!!) so I can't let it get to me. But I DO appreciate it when it is gotten right!

Okay, well I started a different thread with my latest echo results and after letting it all simmer for a few days, I'm going to wait until my 3 month appointment with this same cardio to delve into the surgeon referral. I mean, she is keeping me on a pretty close watch. I want to keep this cardio because Portland is not the largest town and I know she is one of the best and her hospital is one of the best. I just have to learn to work with her. And she will learn to work with me!! That's my plan!

So, I guess I have been waffling abit (well, shoot, I'm a Democrat, isn't that what we do??) and I appreciate all the listeners!

Now it's time to relax, watch what I eat, build up an exercise routine and get back to the waiting game. I am not a patient person, so this is a good test and a real learning event for me!!

Thanks again. Oh, and Karlynn, thanks for the words . And, if I really start to feel worse, especially with all the little improvements I'm trying to make in my lifestyle, I'll be the first one on the phone. I don't want ANY drama attached to all this!!

Marguerite