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Forum Name: Valvular Heart Diseases
|roundsgirl - Thu Dec 13, 2007 10:10 pm|
39 year old female. I've posted here before but never gotten a response. Hopefully someone can help me with my latest echo report. I am a 39 year old female.
In 2005 I found out that my aortic valve leaked mildly,
also had grade 2 dystolic dysfunction. Thicken aortic valve. EF 55 60%
Moderate aortic regurgitation
Grade 3 to 4 diastolic dysfunction
Boderline dilated right ventricle
Other 3 valves leak mildly
Mildly elevated pulmonary atery systolic pressure.
2007 last week (after experiencing chest pain and shortness of breath, blood pressure goes very low 96/44 then can shoot up to 180/100.
Moderate-Severe Aortic regurgitation
Aortic sclorosis without evidence of stenosis.
Aortic valve is thickened.
Other 3 valves still leak mildly.
Under diastolic function, now says normal inflow pattern. But it is noted in the aortic valve section, there is reverse flow in the ascending aorta during diastole.
Right ventricle non-dilated.
My question is can the diastolic dysfunction goes away, like I mentioned from grade 3 to 4 dysfunction, to normal inflow pattern.
I also wonered about the right ventricle being boderline dilated to non-dilated.
Also can these things going on in my heart cause the symptoms I've been experiencing?
Medications : Hydralazine and Clonidine
|roundsgirl - Wed Dec 26, 2007 12:36 am|
I just wanted to update, since I could not get any response on this site. After I visted my cardio. He ordered a heart cath., this verified the moderate-severe regurtitation, and told me that the only thing to fix it was surgery. I am meeting with the heart surgeon tomorrow, and needless to say I am scared to death. Does it sould like a sure thing that surgery will be recommended at this point? Maybe I can get a response. To recap I am a 39 year old female.
Thanks if I get any input.
|John Kenyon, CNA - Wed Jul 16, 2008 8:18 pm|
Hello Roundsgirl -
We now know the outcome of all this was surgery, and I hope that by now you've fully recovered from that and are back to living full-tilt. From looking at the report above I would have guessed surgery would have been a sure thing also, mainly because of the progression of aortic valve dysfunction.
You raised a very important question early on: can this dysfunction go away? For the sake of possible interested readers who my visit this thread, it is unlikely (as I'm sure you now know) that any degree of valve dysfunction will go away on its own, especially aortic valve dysfunction. We sometimes may see an apparent reversal or disappearance of borderling regurgitation in the mitral or pulmonary valves, simply because (especially where the mitral valve is concerned) there is a certain degree of flexibility of the apparatus. This mild degree of regurgitation is often seen and as the mitral valve in particular is dependent on the behavior of the wall of the left ventricle, the strength or weakness of that muscle area, on a given day, can vary enough to permit a tiny but notable degree of regurgitation. The aortic valve is very different, and once there is a certain degree of malfunction it is unlikely to ever go away on its own, although it may not progress as yours did.
I hope this finds you well and fully recovered. Perhaps you could update us on how you're doing.
|roundsgirl - Thu Jul 17, 2008 10:54 am|
Thanks for your response. Yes I had the surgery in Jan. the recovery has been slow. I wanted to ask you about my first echo post op. It came back showing moderate aortic stenosis, which I never had on any echos pre surgery, why is this? Could it be scar tissue? I asked my Cardio. about it, but he just basically said lets see what it shows in 6 months. It also showed that I still have diastolic dysfunction with pseudonormalized inflow pattern; any thoughts about that?
The last note on echo said Normal function of aortic bioprosthesis. Mild to moderate residual gradient. What does that mean?
I still feel as fatigued as before my surgery, also still have shortness of breath, could this be due to the moderate stenosis? As a matter of fact after sending me for a work performance evaluation test, my Cardio deemed my 100% disabled.
I do have other health issues also.
Thanks and I look forward to your response.
|John Kenyon, CNA - Fri Jul 25, 2008 10:51 pm|
Hello and thanks for checking back in -
Sometimes after a prosthetic valve is placed there is some mild scar tissue growth or just plain irritated tissue around the opening, which can on occasion cause a bit of stenosis. Often this resolves with time, as the heart gets used to having the foreign object in place. This will need to be checked in the future, as per your doctor's suggestion, to see if it has resolved or if it has progressed, which is rare, but sometimes happens. When it does, sometimes microsurgery can be performed to remove the intruding tissue, but this is rarely necessary.
The "mild to moderate residual gradient" would be the product of the slight stenosis, and while it normally wouldn't be noticed, your continuing symptoms could possibly be due to this. With this in mind, did your doctor have you go through a comprehensive cardiac rehab program after the surgery? This is not always thought of with valve replacement, but is every bit as important as after bypass or other coronary surgery or event.
If you have other health issues going on also, these may be contributing to the slowed recovery. Hopefully things will improve before too long.
Thanks again for getting back to us here. Please do stay in touch.
|roundsgirl - Sun Aug 24, 2008 3:52 pm|
It's me again, looking for some more answers. I went to the ER last week with chest pains that radiated to the back, very uncomfortable. I also still have the shortness of breath, fatigue etc.
I have some questions about the Echo they did. It also said I have moderate aortic stenosis as did the one they performed in May of this year.
My question is about gradients again.
In May my mean gradient was 18.2mmHG
Last week mean gradient was 33mHG
Peak gradient in May 31.4mmHG
Last week peak gradient 59mmHG
What would cause such a jump in these numbers would it explain the chest pain I've been having?
|John Kenyon, CNA - Mon Aug 25, 2008 11:28 am|
I'm sorry to hear you've been having these symptoms, and I have to say the ER's echo results do show a significant increase in the aortic valve gradient. It was already somewhat problematic before, but if this is accurate then something, most likely scar tissue, is continuing to increase the resistance across the opening of the valve. Did the report once again state the prothesis to be working normally? It would be both rare and odd to find it wasn't, given the reliability of modern replacement valves. The fact that the gradient has appeared and/or increased over time also suggests continued scar tissue growth as a likely cause for the change, and also the likely cause of your symptoms. While this is a rare sequal to aortic valve replacement, I am aware of a few cases where it has happened. Follow-up with your cardiologist and/or surgeon would be urgent at this point, to try and determine just what is causing the new stenosis and how best to manage it.
There is always the possibility, too, of an aberrant reading in the ER setting. Once can hope this is the case, and part of your follow-up should, of course, be a quietly deliberate echocardiogram. If it confirms the increased gradient the problem will probably require aggressive management, especially since there are corollary symptoms which match the findings.
Please stay in touch with us here and let us know what you learn. I wish I could tell you something more (and more positive) but for the moment all we can know for certain is that it appears the stenosis is increasing post-surgery, which is rather unusual.
|roundsgirl - Thu Sep 04, 2008 1:36 pm|
Hello again and thanks for your taking the time to respond to my postings.
Here goes the latest. Both my Cardio. and Surgeon want me to have some type of weight loss surgery. Both letters I received from them state a valve/body mismatch as the problem. I am confused as we never discussed this as being an issue before the surgery when we we going over the things that could go wrong. I also have a hernia right between the breast, which is quite painful in and of itself. Anyway, the valve/body mismatch is the reason I am getting from my doctors about the stenosis and gradients levels, does this sound right to you???
I am so confused right now, and really the thought of another surgery is not sounding so appealing to me.
What are the dangers of body/valve mismatch, is it very serious?
|John Kenyon, CNA - Fri Sep 05, 2008 10:26 am|
Hello and you're very welcome -
The "valve/body mismatch" is another way of expressing that all of us are either one of three basic body types or a combination of two of them, and some of them are not capable of carrying excess weight as well as others. The heart itself is smaller, and the aortic valve, which experiences the largest amount of applied strain because the left ventricle is the hardest-working part of the heart, often suffers (and consequently so does the patient) when the body mass index far outstrips the basic body design.
Because of this, the weight-loss surgery would have to be considered as possibly life-saving, which is usually the only time it should be considered anyway, and it does make sense. I can well understand your reluctance to undergo another surgery, but given the facts as I understand them, this surgery could be life-saving and certain would be life-changing in a positive way. At the very least the reasoning all fits together.
I hope you'll give this the most serious consideration. Please do stay in touch with us here. Best of luck to you.
|roundsgirl - Tue Nov 18, 2008 3:23 am|
I hope this finds you doing well. I just wanted to update the gradient levels since I had another Echo done last week and they have gone up again.
This time the gradients were"
Peak gradient 66 mmHg
Mean gradient 37 mmHg
So....they are still rising, this is over a 3 month period. I am wondering should this be of great concern to me? I have an appt. with Cardio Thurs. What should I be asking about this? Is it still a wait and see kind of situation? How high do these numbers need to go before it is dangerous?
Thanks for your help, comments
|John Kenyon, CNA - Tue Nov 18, 2008 12:25 pm|
Hi there -
It's honestly difficult to assess the level of concern warranted by this, but it is worrisome, at least, since it appears to be progressing rather regularly. I supposed the next question becomes: How should that be treated medically, while waiting for a surgical solution to the weight disparity? I would think beta blocker therapy might be a useful short-term help prior to any surgery, but won't make the problem go away. Most likely you'll be advised to curtail, somewhat, your physical activity, at least the most extreme forms, although sometimes this needn't apply. I think the fact that the gradient continues to rise is suggestive of a certain urgency to correct the underlying problem, but would advise against becoming inordinately anxious, as the problem at least seems to be understood and there is at least a tentative plan to correct it. This probably should be done while the valve is still able to function adequately during surgery, so the progress of the situation does apply a little bit of time pressure, I would think. Your cardiologist will certainly be able to shed more light on this and please let us know what he has to say after that visit.
Hang in there! Help is on the way.
|roundsgirl - Tue Nov 18, 2008 12:47 pm|
Thanks for your prompt response. You are great. I will update you after my visit Thurs. I am currently taking Exforge 5/160 1 a day, Indereal 80mg, and 325mg of asprin. Do you think any of these med.'s should be helping?
I tell you I honestly feel like giving up sometimes. It's not only the heart thing, but in the last few months, I've found out I have esophegeal ulcers, gastris erosions, hiatal hernia and gerd. I will have the light ran back down my throat on Dec. 3rd to check all of that. Then about a month after that I started bleeding with bowel movements for 5 weeks. I had a colonoscopy done they removed a polyop (sp), seen where diverticulia had been bleeding along with internal and external hemhorroids. I was told I need to see a surgeon for the hemhorroids, (just great another surgery) I feel like a medical freak and without insurance I've put that whole scene on hold. All this along with my other health issues, I feel terrible all the time, just keep looking for the light at the end of the tunnel.
I am still waiting on a court date for my disability, after my Cardio has twice filled out paper work stating I am totally disabled along with my PCP also filled out the same paperwork. I can't help but feel all this stress is not helping my heart, but how can I avoid it at this point? You didn't even have to mention slowing down on physical activity as I have no energy anyway. Sorry to go on, but thanks for letting me vent.
|John Kenyon, CNA - Fri Nov 21, 2008 11:17 pm|
You're very welcome.
The Exforge combined with the Inderal should manage any blood pressure issues, and Inderal (a beta blocker) is often used to reduce the stiffness of the left ventricle's free wall and the ventricular septum, either/or which can sometimes cause a narrowing of the outflow tract leading into the aortic valve, and which could possibly be causing your problem. In those cases the Inderal is sometimes pushed to pretty high doses (yours is a moderately high dose, but I've seen higher ones). That may be a useful approach, although it won't cure the underlying problem; it can sometimes make it manageable.
You have a remarkable number of upper and lower GI issues. This is interesting, in a clinical sense, and I can't help but wonder if there might be some sort of obscure connection between this and the heart problem (even though on the surface it would seem to make no sense).
I'll be very interested in what you find out during your Thursday appointment. Meanwhile please feel free to vent if it helps. You have to be feeling a great deal of frustration, and sometimes just talking -- or writing -- about it can help relieve some of the stress of dealing with issues that sometimes seem positively crazy. I'm sure there is an underlying cause and that it will be found out sooner than later. Hang in there.
|roundsgirl - Sat Nov 22, 2008 12:17 am|
I sometimes also wonder if there is some connection to all of this . My appt. yesterday was actually pretty uneventful. I didn't see my regular Cardio, but another one. It was basically, you know this valve is failing, you know the road ahead will involve another valve replacement, but you can't change that; so try to work on your anxiety. About the numbers he acknowledge them, but didn't seem overly concerned, he said about that " the increase wasn't drastic"... but my point is they are going up every few months. I'm also not sure what 's the magic number that I should worry??? I honestly don't know. It seems to me, they are taking the approach of let's wait and see what happens.
FYI I have an appointment to have the light ran back down my throat on Dec.3rd. It's just never ending.
My mom tells me I should make the medical books pretty soon. I think I mention the disability I am trying to get, to give you a little more background about me; I always had problems with cysts, one removed from breast, one from neck, several bartholin gland cysts, finally had to have the glands removed. Not fun. As I type right now I have an Arachnoid Cyst in the middle cranial fossa, a thornwalt cyst, one cyst on right ovary and three on thyroid. Why are some people prone to cyst??? I also have spinal issues that along with my heart issues don't allow me to exercise. Spinal stenosis, spinal arthritis, facet joint hypertrophy, a bulging disk laying on nerve root.
I guess when you combine all of this it's no wonder I'm stressed and not handling it well.
Take care and Thanks again.
|John Kenyon, CNA - Sat Nov 22, 2008 10:50 pm|
Hi again, Lisa,
Well, what often happens when there is a slowly progressive negative change such as with the valve in your case, there isn't necessarily a strict cutoff point where numbers are concerned, but rather these are corellated with symptoms to determine the overall need for intervention. Sometimes certain people can have pretty "unsatisfactory" numbers but for some reason (often remodeling of the heart and blood vessels, a natural accomodation), things work well enough for a longer time than one might expect if looking at test numbers alone. Hopefully this will be a sufficiently gradual process, and your doctor will work with you to determine when the time is right to do the next surgery. Of course that's probably cold comfort, given that no one especially wants to have that to look forward to. I think that part's a given, but it sometimes helps in that the patient is able to become more philosophical about the problem and realizes there is a lot of reserve built into us to deal with these things, physically as well as emotionally.
I wouldn't be surprised if you do wind up being written up in medical journals, especially if someone finds a common thread connecting all these disparate problems. I can't help but suspect there may be one, too. Meanwhile, though, you'll have to attack them separately and I hope the endoscopy winds up yielding some useful and helpful information.
You have every reason to feel stressed and frustrated. What's truly remarkable is how well, overall, you really are doing at dealing with all this! You may be a lot stronger than you think. Just try and hang on to that sense of humor. It'll take you a long way.
Take care and please stay in touch.
|roundsgirl - Sun Nov 23, 2008 12:32 am|
"It's me again Margaret"
I actually just got the copy of my echo in the mail today and wouldn't you know it I have another question for you. I would have asked my Cardio, but I didn't have the report yet and since I knew I had one on the way I didn't ask him for a copy of it. I knew what the gradient numbers were before I went because a nurse at my PCP told me. They are good to me there, they say they see me so much I'm like family.
Anyway for my question; it's concerning the AV Area:
5/2008 it was 1.36 cm2
8/2008 it was 1.49 cm2
11/2008 it was 0.95 cm2
So is that bad? Or is it just confirmation of the aortic stenosis? I promise I'll try and give you a break after this.
Thanks again for everything. I wish I knew you in person. I find the medical community now a days is all about the money with little to no compassion.
Oh, I have one more question for you, now after my OHS, I have noticed when I am in pain or mad my blood pressue and heart rate go through the roof. An example was one night in the ER in Sept. 08, the night before I had the first test of the light down the throat, ( I can never remember the abbrev. for that procedure) anyway I was hurting like crazy, chest pain, upper abdominal pain shooting through to my back. I also found out I have a fatty liver and don't drink alochol I will be follow up with the Gastro. on Dec. 3rd about this, but I'm thinking that it's probably due to all the med's I take. Sorry I got off track, so anyway, one cocky resident doc. who would be admitting me; after he was called in by the ER doc., they have to come in and give you the once over and they make the final call on wheather or not you'll be admitted. He came into my room and was so cocky as I already mentioned and had absolutely no compassion and he says to me and I quote "I don't think you're in the pain you say you are in", well I lost it. I lit into him like there was no tomorrow, I was laying there thinking and telling him at 40 years I've been through more pain than your young but can even imagine etc, I screamed at him to leave my room. The next thing I know 6 nurses and some aids were standing over me screaming at me to calm down, my blood pressure had shot up to 161/140 and they were saying your heart is in v-tach. I remember somebody saying she is about to go into a lethal rhythm, my heart rate maxed out at 171 before they got me calmed down and I think it was the word "lethal" that got my attention, they were saying he's not worth this, as they could hear our conversation as it did get rather loud. Anyway needless to say after this there was no longer a question of my being admitted. So I was put on a heart monitor and the next morning had the light ran down and found all the ulers etc.
So now I'm like don't upset me all the time kidding with my family, I tell them you know my heart will freak out. Is or should this be a real concern for me? I guess it may have done that before the OHS and I never knew it, but now that I do know what it will do should I worry? Thanks again and sorry it turned out to be so long.
|roundsgirl - Fri Jan 09, 2009 12:29 pm|
I had posted here again, but never got a response.
I am writing now because as you are familar with my situation, now I am feeling generally just "not good", I am even more tired than usual, hard to just bathe and get dressed, no energy to do anything. I feel like I'm beating a dead horse, but I just want so bad to feel better. Do you think it could be due to the heart problems with my tissue valve, stenosis and gradient numbers etc. Given the information I have previously given I am also now really concerned about just how long this valve will last, I feel like it's a no brainer I won't make it the "10" years they love to tell you, what do you think? I know it's just an opinion and that's fine by me.
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