Convinced My Tissue Valve has FAILED

[Luana]

Jackie,
I wouldn't give the echos too much weight; however, I would want more answers, and what really concerns me is your blood pressure. Your systolic (top number) is in the 50s? 50s? Um, I don't know why any of your docs would not be concerned about that especially when you're feeling light headed.

If I were you I'd get copies of all medical records and see a new cardiologist.

I think you've been incredibly strong and brave through your whole ordeal. You're a young gal and you should be feeling good. Someone needs to fix this.

 

[ALCapshaw2]

thanks again everyone!

i put in a call to all of my cardiologists and the surgeons on friday, and today my local cardiologist called back. he was in the hospital and able to look up my echo's. he said my lightheadedness wouldn't be caused by my valve not functioning correctly. which is hard to believe but whatever.

he did say something about the gradient being a 2 and now a 3 which i dont know what number he was talking about. anyhow it concerned him so he is having me schedule an echo at his office (they have a large practice) and he will be at the echo to look at everything in depth and closely.

still waiting for the surgeons office to call me back from northwestern.

al, thats the mistake i fear i made. i could have gone with mccarthy, but instead i went with his partner who i was told specializes in the aneurysm repair.

i have an edwards life sciences 23mm pericardial tissue valve with that TFX stuff.

I'm a little confused about your multiple cardiologists. The woman cardiologist who dismissed your echo results certainly didn't do you any favors. I'm glad that your "local cardiologist" is taking your situation seriously and ordering another echo under his supervision. That's the place to begin.

Allow me to pose some questions that come to my mind that you may want to ask your local cardio before the echo.

1 - Can he determine if the valve is deteriorating structually?
2 - Can he determine if the valve is "well seated", or if the valve stitching is coming loose?

I feel your concern. You made what appear to be good informed decisions yet something appears to have gone awry. It makes me wonder how much experience this surgeon has had with weak and/or defective tissue that could be caused by a connective tissue disorder. A related question would be to ask if your aneurysm was caused (or exacerbated) by a connective tissue disorder.

I'm thinking the answers to these questions would be useful in deciding what needs to be done next and what surgeons you would want to interview about further intervention.

You were wise to review your Echo Reports. Keep up that inquisitive and pro-active mindset.
It will serve you well in plotting your course, one step at a time.

Best Wishes,

'AL Capshaw'

 

[OldManEmu]

You may be young at 28 however even at this age there should be no deterioration of the valve, why bother offering you a tissue valve if it can’t even last the duration of a pregnancy.
I would be asking for an explanation of why the mean gradient had gone from 8mmHG to 26mmHG in 6 months, if the cardio cant give you a realistic answer to the question or offer to do further investigation, best start looking for a new cardio who takes your health more seriously.

 

[malibu82]

thanks again everyone for all of your thoughts. i'm so grateful for this site. i don't know what i would do without you all!

al, great questions to ask. i will write those down for sure.

luana, its the bottom number the "dia" that is in the 50's but i do believe that still is low and not "normal"...maybe not though!

thanks again for all of your thoughts and prayers. i really need them!

 

[yotphix]

"its the bottom number the "dia" that is in the 50's but i do believe that still is low and not "normal"...maybe not though!"
It is low. 'Normal' or benchmark diastolic pressure is 80. This is the pressure in the system between ventricular beats. Mine was in the 50's to low 60's prior to my AVR. If you think about how the valve works, this could be an indication that it is not closing properly, and of regurgitation as it was in my case. With my new valve I am mid 70's to low 80's.
I think that one would normally expect a systolic (during the ventricular contraction) pressure to be higher when there is severe regurgitation as the heart tries to compensate. 120 is the benchmark systolic and, pre-surgery mine was 140-150. Post surgery it is generally 120-125. This is my understanding of things anyway.

Good that you are getting looked at though. Trust that you will get to the bottom of this as long as you continue to advocate for yourself. I strongly believe that the best results are available to those who educate themselves about their conditions. This way we can treat the Docs as our partners in our ongoing care. Best of luck to you, and thanks for telling the story.

 

[New Guy]

Malibu,

I don't know how to read your echo reports, but I do know you're doing the right thing by getting some other professional opinions. I would hope your Cardio knows what she's doing though. Is it possible your BP is too low due to some of the drugs you're on? That happens to be my case. That may also result in you being light headed (like me and sleepy too)

It's not time to panic yet, but that's easier said than done. Try looking up your drugs side effects at a wibesite like this one; drugs.com

Maybe you've already done that, and remember that usually the most simple explanation is the correct one.

Sorry you have to go through this confusion.

 

[DebbyA]

I'm also among those with no answers, but hope you get some solutions soon. No matter what your true gradients turn out to be, those symptoms need attention. I'm sorry you are having to expend energy you don't have to get your answers.

Best wishes.
Debby

 

[malibu82]

thanks again ! you are all so sweet to offer ideas and thoughts.

 

[Jkm7]

I've just now seen this thread as we were traveling and want to add you are in my thoughts. I hope you get some good answers soon.

 

[Guest]

Malibu,

No additional advice/words of wisdom from me ... but ... thoughts/prayers coming your way....



Cort | 37.m.IL.pigValve.pacemaker | 5 Monte Carlos + 1 Caprice Classic |* Chicagoland Meets, 2011?
** RadioShow.CDshowcase.HOLIDAY | Friday | 12.24.2010 | noon-4p.CENTRAL = www.WRMN1410.com **
"No store bought gifts to open, but there'll be Christmas just the same" ... Kenny Rogers ... 'Kentucky Homemade Christmas'

 

[malibu82]

thanks everybody.

just a small update.

i was able to talk to the surgeons nurse on tuesday. she informed that she spoke with the cardiologist and the reason why the cardio wasn't too concerned was because she didn't feel the echo report was accurate in all areas.

she said has there been some change, yes

would it be causing my lightheadness, no

is it something to be worried about, she will speak to the surgeon after i have another echo performed

i asked her why this would happen so soon, she said as much as she hates to say it, "bad luck"

i asked her if i can have children with my valve in this condition, she said that will be something she will need to discuss with the surgeon after seeing my new echo.

so, i called the cardiologist and made an echo appt for the 23rd, and office visit for the 27th to go over the results.

with my blood pressure still LOW with the dialostic number in the 50s, i am assuming that could obviously be causing my lighthead! so why won't they correlate the two things? why do i have to do the research?

oh well. i guess i will just wait and see.

 

[Superbob]

Malibu,

I wish you the best as you go forward -- hoping for a good report after docs look at the total picture.

Just wanted to throw in a couple of thoughts: From my own recent experience, I know that echos can be misleading, and sometimes a more exact test, in my case a CT-Scan, is needed to show the true picture.

My doctor told me my meds purposefully keep my bp low in order to protect my heart devices. Readings like 90/60 are not uncommon for me. Of course light-headedness can occur with low bp. Doesn't happen often with me but I keep a bp monitor handy so I can check what's going on.

All best to you...

 

[scott.eitman]

Al has some great questions to ask.

My cardios have always put a lot of weight in the EF. Yours looks great! Mine was around 45 as my homograft was failing. Probably even lower by the time I had it replaced.

Are you on any other meds besides Asprin? I ask because I have found some to make me lightheaded. Don;t forget that your Cardio could be right and that it could be something entirely different.

I wish you the best.

 

[njean]

Keeping my fingers crossed for you and hope that you get better readings with your upcoming Echo. We will be watching this thread for your updates.

Keep the faith!

 

[nngbwh]

Wishing you the best next week with your echo test. Looking forward to hearing good news. Keep us posted.

 

[Lily]

Malibu, how seriously have they taken your low bp? I have no experience with pacemakers but I have read that sometimes they're needed for a low heart rate, or low blood pressure, etcetera.

I hope you will be okay. Please let us know what you find out. Best wishes

 

[BAVD John]

Malibu

I haven't been visiting the site for a while and just came across your post. I don't have any words of wisdom to add other than wishing you the best as you tackle this new challenge.

 

[Enudely]

Hey Malibu!
I'm so sorry to be reading this thread! This must be so scary for you! All I can think of to say is trust your instincts. I saved my own life by INSISTING that they keep looking for the cause of my month of fevers. The doctors were about to give up, saying "Maybe you just have a bad flu or something", but I KNEW beyond a doubt, that something was very wrong. Soon enough (thank GOD!) they found the bacteria that was munching away at my Aortic Valve. Trust your intuition and advocate for yourself. I'll keep checking back! Kiss those babies!

 

[Lily]

Here's her encouraging update: http://www.valvereplacement.org/forums/showthread.php?37087-Update-on-me!

 

[malibu82]

Hey Malibu!
I'm so sorry to be reading this thread! This must be so scary for you! All I can think of to say is trust your instincts. I saved my own life by INSISTING that they keep looking for the cause of my month of fevers. The doctors were about to give up, saying "Maybe you just have a bad flu or something", but I KNEW beyond a doubt, that something was very wrong. Soon enough (thank GOD!) they found the bacteria that was munching away at my Aortic Valve. Trust your intuition and advocate for yourself. I'll keep checking back! Kiss those babies!

that is interesting......like i said, my echos after surgery were great. when i went home i had a straight month of a fever. now this crappy echo? i wonder if there is a connection there..........