What should I do?

[susieq14]

I saw my cardio for my 6 month check-up for mitral regurgitation and am in need of some guidance please. Basically I?m worried whether I should be worrying or not?

My cardio does not think so. As a matter of fact in the letter he sent to my Primary Care Physician he actually wrote: ?as always, she remains quite concerned over the fact that her mitral valve is leaking? ? Since she remains so concerned about this lesion, I could not quite convince her that watchful waiting is the appropriate course of action.?

My concern is that the latest echo showed my MR had changed quite dramatically - for the better - which seems great but I?ve never seen anyone post that scenario here. My first echo in July 04 showed it was moderate-to-severe, then in Dec 04 it was moderate and now in Nov 05 it is mild. My Ejection Fraction in July was 60% and on both the second and third echos 60-65%. The mitral valve was mildly thickened on all three reports. The cardio?s response to my questions about this was that ?MR is hard to quantify?.

I?m also concerned that all the measurements of the cardiac chamber had increased.
Here?s what they are from July 04 ? Dec 04 ? Nov 05 Echos
(the first reading is in mm but the last two readings are in cm. does anyone know how to convert the mm readings to cm so I can see the difference? I?ve forgotten my 7th grade math!)
Left Atrium: 37mm ? 3.2 ? 3.8
Aortic Root: 24mm ? 2.6 ? 3.0
LV Diastolic Dimension: 49mm ? 4.5 ? 4.6
LV Systolic Dimension: 27mm ? 2.1 ? 3.0
LV Septal Thickness: 7mm ? 0.8 ? 0.9
LV Posterior Wall Thickness: 7mm ? 0.8 ? 0.9

I asked him what numbers he was watching and he said the LV Diastolic Dimension and LV Systolic Dimension. Well as you can see both of these went up! He said that he wouldn?t worry until the Systolic dimension was over 3.5 and that 4.0 would indicate surgery was needed. Well mine went from 2.1 to 3.0 in one year ? Seems like a fast increase to me?

Also the pericardium was normal on the first 2 echos but on this last one it showed ?trivial effusion?. When I asked if he was concerned there was fluid he said no it was trivial.

When I asked if there was a more definitive test that I could have he talked about cardiac MRI?s but said that could possibly give other conflicting data something about a forward effective EF ? I?m not sure he lost me. Ironically in the letter to my PCP last May he wrote: She needs to have a follow-up echo in 6 months to re-evaluate her left ventricular size and severity of MR and if there is an enlargement in size then I would proceed to a MRI for a forward effective EF. She likely will require surgical repair of the mitral valve, but hopefully this can be delayed for several more years.?

Anyway he did try very hard to convince me not to worry but to no avail. He finally suggested that one of the other docs in the group was doing research and if I wanted I could have the MRI before my next visit in May. I agreed.

What would you do? Do I need the MRI now? Or do I need to see another cardiologist to get a second opinion? Or do I need to just chill out?

Sorry this is so long! I appreciate your input!

Thanks!
Sue

 

[ALCapshaw2]

Sue -

WHOA ! Take a few deep breaths and RELAX.

It sounds like your cardiologist is doing the right thing in monitoring you on a regular (and proper) basis. Somewhere down the road you may want to get a surgical opinion, especially when it comes to determining the time to have surgery. I don't think you are at that point yet.

Basic Metrics:

1 cm (centimeter) = 1/100 m (meter) = 0.01m

1 mm (millimeter) = 1/1000 m = 0.001m

OR, 1m = 100 cm = 1000 mm

Therefore, 1 cm = 10 mm = 0.4 inch (approximately)

(alternatively, 1 inch = 2.54 cm)

Divide your mm numbers by 10 to get cm.

Your LV Systolic dimension went from 2.7 to 2.1 to 3.0 cm. To me, this suggests that your second reading may be erroneous. Instead of thinking that you went from 2.1 to 3.0 in one year, it appears that you really may have only gone from 2.7 to 3.0 in TWO years.

If you don't already know, Echocardiogram readings have a HIGH variability, especially if the readings are done by different technicians. A TransEsophageal Echocardiogram (TEE) provides better pictures but is more invasive. This requires that a transducer be placed down your throat right behind your heart. Some people don't care much for that procedure. With enough Versed and Demoral, you won't feel or remember a thing! (Been there, done that a few times).

Hope this helps.

'AL Capshaw'

 

[susieq14]

Al,

thank you so much for your reply and advice. I'm sorry if I sound a little paranoid but the fact of the matter is I am! LOL I know I need to calm down but this diagnosis of MR hit me totally out of the blue last year and I'm having a hard time coming to grips with it. Actually the last 12 months have been my worse in terms of medical issues in my whole life. Combined with the MR I had to have a surgical biopsy for a benign breast lump, was diagnosed with GERD and erosive esophagitis and am being watched for an indeterminate mass on my liver. I've had more doctor appointments and procedures than I can count or would ever want.

I have been reading this board lots and I did know that an echo is very subjective so that was why I asked if there was a more definitive test to determine the actual condition of my MR. Also from reading this board I have discovered that folks don't often get a lot of warning when it is time to have surgery and that is just so unsettling for me - somehow who likes to be in control of my life. I'm especially struck by Marguerite53's recent post that it is time for her to meet a surgeon and set a date. I also know first-hand of two people that this happened to this year and it really makes me nervous.

So anyway sorry for the venting... back to the facts and a a few questions-

According to your calculations (and by the way thanks for the math lesson!)
I guess it proves that echos are not definitive and doctors interpret things differently - especially when the first cardiologist said it was "moderate to severe" and now my new cardiologist is saying it went from moderate last December to mild this November. Aren't there standards that should be used instead of leaving it up to interpretation?
You mentiond the TEE but not the MRI. Do you think the TEE is better than the MRI? I know I'm reading more in to this but if my cardio really doesn't think I need the MRI why did he finally say okay? I would think an MRI has to be justified to the insurance company and who knows maybe it won't even be approved but if it is do you think I should have the MRI done in the spring?
Or do I just leave well enough alone and stick to the 6 month check-up with the cardio and an echo once a year or should they be done every 6 months.

Thanks so much for listening and for your input. It is much appreciated!

 

[ALCapshaw2]

I'm afraid I can't help you with your questions about having an MRI as I've never had one of my heart. I just don't know.

I DO know about GERD and have had many endoscopies. Have you had an upper endoscopy? That is a procedure where a GastroEnterologist places a scope down your throat which sends a picture back to a monitor for him to see. If you have not had one, that is a good idea. How is your Doc treating your GERD? The usual treatment is with Prilosec or Nexium (which is quite a bit more expensive).

Since you have been diagnosed with "erosive esophagitis", it may also be a good idea to have a biopsy taken to check for "Barret's (sp?) Esophagus", just to be safe.

Assuming your Doc can get your GERD under control, your esophagus 'should' heal on it's own with time.

Regarding your heart, six month checkups should be adequate, especially if you have an echo each time. IF you become more symptomatic (shortness of breath with exertion, rapid or erratic heart beats, etc.), then you should see your Cardiologist ASAP. Be sure to ask for copies of ALL of your lab work and test results. I like to plot my echo results on a spread sheet for comparison (something the Doc's tend NOT to do!).

After a while, you get used to the idea of being a "patient" and take things in stride. I've lost count of the number of 'invasive procedures' I've had.

We (on VR.com) tend to bash the cardio's for taking a "wait and see" approach, but in the early stages (which you appear to be in), that IS the appropriate action. Just keep an eye on your heart dimensions. "Enlargement and/or Thichening" may mean that it's time to be interviewing surgeons to get one lined up for when the time comes. IMHO, it is also best to let the SURGEON decide when that time is since he/they like to operate BEFORE you suffer permanent damage to your heart muscles/walls.

I know it's a lot to take in all at once, but try not to 'freak out' just yet. It looks like your doc's really are watching your situation. Just be sure to keep all of your appointments and check out any changes in your symptoms.

Best wishes,

'AL Capshaw'

 

[ALCapshaw2]

MORE on GERD:

My GI Doc has a nice one page handout of things to do or avoid for GERD patients:

o Raise the head of your bed by 6 to 8 inches

o Reduce or ELIMINATE Caffeine (coffee, cokes, chocolate )

o Minimize tomato based foods or use only low acid tomatoes

o Avoid Peppermint

o Keep your clothing LOOSE around your waist

o Minimize bending over

That's all I remember.

'AL Capshaw'

 

[maka]

Sue
I realized that not everyone is the same. I had a "heart murmur" since I was very young, and was told I had a with mitral valve prolapse during many. many years. Then in 1999 a cardiologist told me that I had developed "severe regurgitation" and should consider an operation. This took me as a shock and surprised but decided to wait and see. with 6 months check ups Something that the cardiologist always told me....if you are out of breath, dont' wait and get to the hospital.
Well, after several years of being more or less withouth mayor symptons I decided to have the mitral valve repaired in August of this year....almost 6 years after the "severe regurgitation" diagnostic.
So, don't panic.....listen to you body and a get doctor that you feel comfortable with and can trust.
Marta.

 

[OldManEmu]

Sue it sounds like the last year has been one rather not repeated. There are set definitions as to what is Mild and Moderate, it is just that the heart doesn't come with a good set of instruments attached like your car does, that measures it performance (exact speed). The cardio can only estimate what the performance is from looking at the tests performed. This estimation is then used to determine if it falls within the specific definition. Echo?s and MRI/CT Scans are good for different things. Echo?s because they are a motion study are good at determining the flow characteristics of the heart that is the amount of blood pumped per beat and the amount of leakage back. MRI/CT Scans are good at determining the shape and structure of the heart.

 

[susieq14]

Al: Thanks again for all your input and advice! I did have two endoscopies with biopsies and the second one shows the esophagus is healing so for that I am very grateful. I'm taking protonix before breakfast and supper and prescription pepcid at bedtime. We have our bed elevated and I have lost 50 pounds and really changed my eating habits so that is helping with the GERD and also my high blood pressure which is good for my heart!

I just created a notebook and it is filled with copies of every letter any of my specialists wrote to my Primary Care Physician and all my test results (i.e. CT, ultrasound, MRI, 24 hour PH acid test, blood tests and biopsies), and of course my echos. This big fat notebook only contains stuff from within the last 18 months since prior to that I was going through life pretty "happy-go-luckily". I like that suggestion of creating a spreadsheet to track my echo results. I'll have to give it a try.

Hello Marta - it was very nice to hear from you. I have a very slight murmur that the cardio had to struggle to hear the first time he examined me. He also said I did not have MVP. Like you did I have no symptons yet; although i have asthma and as you can guess I'm always second guessing whether it is my asthma that is making me wheeze and feel short f breath or is it my heart. Also with the GERD came very bad indigestion with upper chest pains that at tmies made me worry if it was my heart. See why I'm crazed! LOL Anyway it was interesting to hear that it took 6 years before your surgery was needed.


Hi OldManEmu - nice to meet you as well all the way from Australia! Your right I don't wish to repeat the past year or have another one like it anytime too soon. I found your analogy of our body and our cars to be an interesting one. And your explanation of the echo vs the MRI very helpful.

Thanks to all of you again for your helpfulness! I know I need to relax and will try to give it the old college try - though that is easier said than done. I will also ask my cardiologist for 6 month echos instead of yearly ones.

Take Care!
Sue