New & Confused

[Sheila2old]

Hello to all of you in this wonderful place that I've found. I have been lurking around here for about a week and gathering information from all of you by reading your posts. Alot of you know so much that it's mind boggling to me as I'm new to this 'heart problems' stuff. My history is more cancer/lung orientated so I'm a bit lost with the heart terminology.

I got some copies of my records/referrals this morning and I'm so confused! Is it possible that some of you could tell me what you think it means?? All I really know is that my cardio/thoracic surgeon doesn't want to touch my heart. (He did my 2 lung surgeries in the past) But he says I really need valve replacement ASAP cause my heart is only working at about 50%!?

Quick history on me is that I've had Hodgkin's at 16 with 6 weeks of Radiation Therapy, Thyroid Cancer at 38, COPD (smoker & radiation burn scars) and numerous other surgeries, -3.2 Osteoporosis........uggh!

What does it mean when Dr report says:
1. Right Ventricle is dilated? (swollen right?)
2. Biatrial enlargement with Mitral valve sclerosis with severe Mitral valve insufficiency? (No clue here)
3. Aortic valve was tri-leaflet with sclerosis and moderate insuffeciency? (or here!)
4. Moderate Tricuspid insufficiency with pulmonary hypertension? (high blood pressure?)
5. Small Pericardial effusion? (that's fluid build up?)
6. Right dominant system & mildly dialated left ventricle with global hypokinesis?? (one side bigger than the other?)

I should be thrilled that they say my arteries looked good right?
Anything that any of you can tell me will help ease my mind a bit cause honestly right now I feel a bit lost and definitely scared out of my mind! Thank you in advance for your help & knowledge!

 

[Ross]

1. I do beleive so.
2.Inflamed and severly leaking Mitral Valve
3.Inflamed moderately leaking Aortic Valve
4.Moderate Tricuspid leakage with pulmonary hypertension-High blood pressure in the arteries that supply the lungs
5.Fluid in the sack surrounding the heart
6.Hypokinesis refers to decreased contractile function of the left ventricle

You've got a very complex set of problems that no one but a top surgeon specializing in high risk surgery should attempt. I know that's not doing anything to make you feel better, but that's about the way this reads.

The question would be, if the Mitral Valve is replaced, how will it affect the leakage of the Aortic and Tricuspid valves. It may improve them quite a bit. Maybe not also. Alot of what your showing is consistent with lung disease, so what we have is combined problems of which you know about. I'm just not sure how much correction will occur with the valve fixed.

 

[marky]

Ross is right on (as usaul )
Sheila.. you should try to search out a Top surgeon in your area..or if possible travel elsewhere
I am not familiar with the surgeons across the country..but I am sure if you ask..others will be able to give you some names in your region.

Good names have a way of making themselves known..
Hope you find the answers you need.

 

[ILoVeNY25]

Hi Sheila and welcome to this wonderful site. You really do have your plate full and a complex history to go along. There are a lot of options out there in the way of valves and so on. So, Go make a consultation with a surgeon who has experience. I'm sure some of our valvers in your area will be along shortly to tell you where they had their replacements done and then after that go see someone else and get a second opinion. Take advantage of this site, read personal stories, do searches, ask questions and someone will always be along with some advice or kind words. Keep us updated. Good luck and Take care.

 

[Mary]

Welcome Sheila,

and don't let the "working at only about 50%" scare you. Many people on the forum have EF's (ejection fraction) lower than that, and numbers above 65% aren't considered necessarily good either!
The fact that your arteries are clear is also a big PLUS!
Has your surgeon recommended your seeing someone else? Ask him if he will get you a referral to a topnotch cardiothoracic surgeon who deals with complex cases.
We'll be here when you need us!

 

[ALCapshaw2]

Hello Sheila,

I'm glad you decided to 'come out and check in'.
You are not alone (do a SEARCH for "Hodgkins"
and you will find several other survivors).

Regarding your Questions:
1. A dilated Right Ventricle means that it has become enlarged because the heart is working harder to overcome the effect of your damaged valves.
2. Mitral Valve Insufficiency means that your MV is "leaking", i.e. not closing fully and blood flows back into the Right Atrium when the Right Ventricle contracts. In a healthy heart, 55 to 65% of the blood in the RV should go out to the rest of your body on each contraction and none back into the atrium.
3. Tri-Leaflet is the normal configuration in 'most' people's hearts. (Bi-Leaflet valves often need replacing sometime in one's life). Sclerosis means the tissues have become STIFF, most likely from the Radiation Treatment (and damage). Moderate Insufficiency - Leaking, but not severely.
4. & 5. Better ask your doctor. I'm not sure I fully understand these.

The statement about your heart only working at 50% needs clarifying. IF he means your Ejection Fraction, then you need to know that 55 65% is NORMAL so 50% is 'Not Bad' for a diseased heart.

Bottom Line: Your Heart HAS been damaged but I would expect an experienced surgeon (who has fixed Radiation Damaged Hearts) will know how to fix YOUR Heart.

You might want to go to the "Personal Stories" section (see the Main Page - click on ValveReplacement.com at the top of the page) and look for Johnny Stephens under Two Valves.

MY (non-professional) impression is that your Mitral Valve is the Main Problem but with the other issues, you may want to have Both the Mitral Valve and Aortic Valve Replaced at the same time, assuming the Aortic Valve is likely to get worse over time. That would save having yet another Open Heart Surgery. Something to discuss when you interview your next surgeon candidate.

I would also recommend Mechanical Valve(s) for their durability. The third generation On-X valve is very appealing because of it's improved fluid dynamics and lower likelihood of producing clots. The (older) St. Jude Valve is the 'Gold Standard' for durability since it's been around for decades with reliable performance.

In my earlier Private Mail, I gave you the names of two of the most experienced Surgeons at UAB (University of Alabama at Birmingham) which is rated as the #13 ranked Heart Hospital in the USA. One is the head of the Transplant Team and I believe both have experience with Radiation Damaged Hearts.

I hope you will be able to get a referal to a 'Radiation Knowledgable' Surgeon at one of the Major Heart Hospitals. They should be able to 'fix you up'!

'AL Capshaw'

 

[geebee]

Can't add anything to these great posts but I just wanted to welcome you. This is the best place in the world for information, advice and support.

 

[Sheila2old]

More info...

More info...

Hello again! You all are wonderful for sharing your knowledge with me and pointing me in the right directions!

I looked back through the paperwork and my Ejection Fraction is 44%? Not bad but not good right? The cardiac/thoracic surgeon is referring me to Emory Hospital in Atlanta or some place of 'more considerable extensive cardiac care'.

I am an Active Duty military wife so every choice depends on what the military insurance (TriCare) will allow me to do so I'm not sure how many choices I will get to make on my own at this point. They usually send the more difficult medical cases to Walter Reed in Washington DC.....all I can do at this time is hurry up and wait and try to gather as much info as I can before I lose my mind hopefully!

Thanks again to all of you!!

 

[Ross]

I'm not sure how military procedure goes, but you have complex problems requiring complex care. I would think that they would have some sort of program in place for such instances. Fight for the best possible surgeon and facility, I guess that's all you can do.

 

[ALCapshaw2]

Since the surgeon you saw in Georgia mentioned possible Heart Transplant, I would ASK for a referal to UAB. I've noticed a surprising number of patients from Georgia go to UAB for their surgery!

ONE of the surgeons I mentioned in my PM co-authored a book on Heart Transplantation along with a surgeon from the Cleveland Clinic (#1 rated Heart Hospital) and is the Head of the Transplantation Team at UAB. Maybe that can help 'grease the wheels' for a referal...

You might also start a new thread asking for the names of the TOP Surgeons at Emory and / or military affiliated hospitals.

'AL Capshaw'

 

[tobagotwo]

Ross and Al have done a great job of explaining these, but I'm going to toss in my non-professional two cents' worth also, as sometimes different wording aids understanding. If it confuses things instead, then just forget I said anything...

What does it mean when Dr report says:
1. Right Ventricle is dilated? (swollen right?)

Enlarged is probably a better word than swollen. Ventricles are muscular chambers that pump blood. Because both valves in your left heart are leaking, your right heart is picking up some of the load. Your right ventricle is working extra hard, so it had enlarged in the same way any other muscle enlarges with exercise. If the doctor meant it in a somewhat different way, it may also not be closing as tightly as would be expected.

2. Biatrial enlargement with Mitral valve sclerosis with severe Mitral valve insufficiency? (No clue here)

This is two separate things.

Biatrial enlargement: The atriums are the chambers at the top of the heart, where the blood comes into the heart after it's been in different parts of the body. In the case of the right atrium, it's blood with little oxygen left coming in from the rest of the body. It will go to the right ventricle to be pumped into the lungs for oxygenation. In the case of the left atrium, it's freshly oxygenated blood that has come from the lungs. It will go to the left ventricle to be pumped out to the rest of the body and to feed the heart itself.

When incoming blood is met by blood leaking back into the atrium through the tricuspid (right heart) valve or the mitral (left heart) valve, there's a lot of pressure generated in each atrium. This pressure causes the atria to expand in size over time.

Mitral valve sclerosis: This is a term sometimes used to describle calcification of the valve tissue. It's a bit misleading, as it doesn't mean that there is any significant arteriosclerosis in the arteries leading to the heart, and because the material on the valve tissue is not the same as that found in conventional blockage of arteries. Many people with valve disease also have very clean arteries. Go figure...

Anyway, it's more often referred to as calcification. A mineral called apatitie, mostly made up of calcium and phosphorus, begins to coat the valve leaflets, making them less flexible, It also forms small, hard chunks in the immediately surrounding tissue. This interferes with the valve being able to close fully. In the case of the mitral valve, it then leaks blood back into the left atrium when the left ventricle pumps. The leakage is called regurgitation or insufficiency. Yours has been described as severe. All of us have had a "severe" condition before surgery. In your case, the leakage is probably exacerbated by the enlargement of your atria and ventricles.

3. Aortic valve was tri-leaflet with sclerosis and moderate insuffeciency? (or here!)

The aortic valve normally has three leaflets (which yours does). They were checking to see if it had only two leaflets, which is a fairly common issue for people with aortic valve problems.

The aortic valve is in the left heart. The blood goes from the lungs to the left atrium, through the mitral valve into the left ventricle, which then pumps it through the aortic valve into the aorta and the rest of the body. Your aortic valve is calcified (sclerotic), and is leaking (insufficient) like the mitral valve, but moderately, rather than severely. The enlargement of your heart may also be affecting the leakage of this valve.

4. Moderate Tricuspid insufficiency with pulmonary hypertension? (high blood pressure?)

The tricuspid valve is in the right heart. The blood comes into the right atrium, through the tricuspid valve into the right ventricle. Then the ventricle pumps it through the pulmonary valve and out to the lungs. Your tricuspid valve is leaking (insufficient). As there is no mention of calcification, it may be due to uneven enlargement of your heart or the unusual amount of pressure being applied by your right heart.

The pulmonary hypertension is also at least partially caused by the right heart taking over so much of the load. As it pumps to the lungs, it is producing extra pressure there by trying to push the blood through the lungs and through the left heart.

5. Small Pericardial effusion? (that's fluid build up?)

Yes. That's fluid buildup around the heart.

6. Right dominant system & mildly dialated left ventricle with global hypokinesis?? (one side bigger than the other?)

As you can see, both of your left-heart valves are leaking. This has caused the left ventricle to enlarge from trying to pump in spite of its leaky plumbing. It's only been somewhat successful. The left heart normally does most of the work, but this leakage has forced the right heart to try to pick up much of the load. Thus, in your case, the right heart is doing most of the work, and is described as dominant.

The mention of dilated here probably refers to the type of enlargement I just described. However, it can also meant that the heart isn't squeezing as tightly as it should, and the ventricles are remaining more open during the heartbeat than they should. Terms are not universal for this type of descriptions, and it's difficult to know exactly how the doctor meant that word to be read.

Global hypokinesis means that there isn't as strong a pumping action as they would expect to see in a normal heart. Global means the entire thing, and hypokinesis comes from hypo (under or less than) and kinesis (movement).

You dont mention your EF (ejection fraction) measurement, but I expect it would be under 40%.

The good thing here is that replacing the mitral and aortic valves will take a great deal of load off of the entire system, and make it work much better. It shoud also reduce some of the pulmonary hypertension and improve the COPD to some extent. That should make it a bit easier for you to catch your breath.

In your case, I would agree with Al that mechanical valves would make sense for you, although I am less specific about the brand in your case. With the general enlargement of your particular heart, carbon valves (mechanicals) can help ensure that closure will remain complete even as the heart remodels (shrinks back toward normal) after surgery. They're all good, and the surgeon can pick the one that best suits your heart situation.

The difficulty may be finding a good sureon who will work on you. A lot of surgeons will balk at doing valve work on someone with COPD. You have COPD and PH. However, the valve replacements should improve those conditions quite noticeably for you. And you need the replacements very soon. Search until you find a surgeon with a lot of experience and a desire to help that overrides his COPD concerns.

Best wishes,

 

[ALCapshaw2]

Emory Hospital

Emory Hospital

Very thorough explanation (as usual) Bob !

I did a Google Search on "Emory Hospital" and "Emory Hospital Cardiology". The Cardiology Unit has ranked in the Top Ten for several years so that is certainly a Good Hospital.

Unfortunately, I was unable to find the Names of their Heart Surgeons (my 'dialup' connection probably just bogged down.

Since the Surgeon you saw wants to refer you to Emory, that seems like a good path to pursue. Just be sure to ask about experience with Radiation Damage to the Heart. Hopefully someone will know who has the most experience in that area.

Good Luck !

'AL Capshaw'

 

[gijanet]

Hi!

Hi!

Our VR know-it-alls have already given you some really good info, so I will have to just settle for welcoming you to the group. I am sorry to hear that you are having such a rough go of it. Please keep us posted. Hugs. j.

 

[hensylee]

you have happened upon a site that truly is all you say - knowledgeable - and soon you will know all this, too. Welcome to VR.

 

[gadgetman]

I am an Active Duty military wife so every choice depends on what the military insurance (TriCare) will allow me to do so I'm not sure how many choices I will get to make on my own at this point. They usually send the more difficult medical cases to Walter Reed in Washington DC.....

Mary turned me on-----well, that?s another story-----to your post about TRICARE. Get thee to your local TRICARE Counselor NOW. They will try to ?FARM? you out to a cardiac military hospital (Walter Reed usually). Normally that is not a bad thing but with the unique problems you may be facing I would echo the others say. You want someone that has dealt with your specific problems to be involved. You don?t want a surgeon to be ?surprised? by what he/she may find once they get in there.

They mentioned Walter Reed to me at first. I have good insurance thru my wife so I wasn?t too concerned but I had my Cardio write a letter to the Counselor outlining my special problems and his recommended surgeon (a UAB alumni also). Tell him to be specific about the special problems that exist.

At first they still wanted to drag their feet until my primary care Doc got involved. That coupled with the urgency (EF less than 30) got me sent to UAB.

My experience with TRICARE is you have to sometimes get aggressive (to the point of being obnoxious) to get them to move.

Good luck on your choices and hope you get ?fixed? soon.

May God Bless,

Danny

 

[rbl1999]

Hi, I also just want to say HELLO, as you can see, there are many knowledgeable forum members. I, as always, am very impressed with the info they have already given you. It sounds like you have a rough time ahead of you, just know that we are all here for you... Rose

 

[mtkayak]

My Cards reside at the Emory Clinic. If you PM me I can give you their names and more information. I'm not sure about Radiation Damage but they can defintely point you in the right direction. Yes, Emory refers a lot patients to UAB being the "closer to home" option with a high level of care and surgical expertise. But they will refer you to CCF and Mayo Clinic as well. I would at least give them a call and possible meet with a Card at Emory. I was not impressed with the surgeon that I interviewed with in Atlanta.

 

[temp69]

Sheila:

I'm no doctor, just a screenwriter, so I can't really help you, except to say you need to see a really good surgeon! Dr. Laks at UCLA is great, as is Dr. Trento at Cedars, both in Los Angeles.

Good luck to you!

 

[sue943]

I thought I was seeing things, I now realise this thread was 'brought up' from September and in fact Sheila2old had her double valve replacement last month. Ah, confusion over.

 

[lcwhitney]

You have gotten A lot of good information and advice here so far so... I will only add thisYour heart problems stemfrom damage to your heart caused by the radiationused to treat your Hodgkins disease. AND WELCOME TO VALVEREPLACEMENT.COM !! People with hodgkins always seem to get the trade off of heart damage for the cure of their cancer.

Lettitia