Echo NOT good news --- 4th OHS Imminent

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njean

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Location
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I need you guys to help me to my feet......:frown2:

Well, last Tuesday, Nov. 30th, my husband and I finally met with my new cardiologist to discuss the Echo that was done in October. The results were hard to hear but then, I had a feeling all was not good.

According to the Echo, both my right & left atriums are severely enlarged, pulmonary pressures are severely elevated again (upper 70's) even with the Revatio that I'm taking. The good thing, the AV that was replaced in 2006, is working good & the Pulmonary & Tricuspid valves are still functioning okay, with signs of mild regurgitation.

I was told by the doctors in Houston, in 2007, that the 35-year old mitral valve had also gone south and needed to be replaced then. I was angry, disgusted, saddened at these news because WHY in the world didn't they swap it out when they replaced the old Aortic valve in March of 2006??? How could that happen to me??

The explaination I got was that the mitral appeared to be working fine so they opted to leave well enough alone. They mentioned too that there was alot of scar tissue to deal with and the risks were extremely high. So, I just couldn't wrap my head around what they were telling me. Besides, I was still feeling crappy from the last OHS even after a year, so I chickened out! I told them I wanted to go home! They sent me home but they said that I'd be back. And they were right....the day is here.

In the last few months however, I have been noticing more symptoms but I've been downplaying them. There are moments I feel pressure in my chest, heart thumping loudly, dizziness, lightheadiness when trying to do chores like raking a few leaves or sweeping the patio. The inability to walk more than 1/2 mile now, frequent headaches, rubbery leg and PVC's. I have also had a constant pain & stiffness in my neck for months now, probably related to the high PH pressures. And if I didn't have to get up and take my medications, I could sleep all morning highly unlikely for me!

So, last week, I got my reports together, emailed Dr. Cooley's assistant and faxed them to her. She informed me that Dr. Cooley was out of the office all last week but was scheduled to be back today, Monday when he would review what I sent and then get back to me ASAP.

I also asked her about two surgeons there, Dr. Frazier and/or Dr. Duncan, who have trained under Dr. Cooley, their level of skill and experience with cases such as mine and/ or whether I should be looking at surgeons in CC?

She said that Dr. Cooley had the highest respect and confidence in either one of these men, if surgery was called for.

So now I just have to be patient and wait to hear from Houston. One thing is for certain.....I need to get something done soon or risk having a stroke or heart attack.

The possibility of being unable to care for myself or having to be placed on a list for a heart/lung transplant, too unbearable for me to think about! I'd rather take my chances with the surgery and if I die on the table, well, then that's the way it was meant to be. God's the driver and I'm the passenger so we'll see where this road goes....

I will get back to you once I have a date and/or more information.

Your prayers are greatly appreciated! Thank you & God Bless!
 
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So sorry to hear this. Since you are having possible symptoms, this is of particular concern.

I realize your situation and mine are very different, but just had to wonder if they are planning to confirm the echo results with a more exact test, such as a CT-Scan or MRI. I have had two consecutive echos that raised alarms that were subsequently knocked down by Ct-scans.

Sounds like you are under the care of some of the finest medical specialists around. I send you all best wishes and will be praying for you!
 
Sorry that your having to go through this again so soon. Please don't wait too long and let your symptoms get much worse, believe me it makes the re-do alot tougher. You'll be in my thought and prayers.
 
So sorry to hear this. Since you are having possible symptoms, this is of particular concern.

I realize your situation and mine are very different, but just had to wonder if they are planning to confirm the echo results with a more exact test, such as a CT-Scan or MRI. I have had two consecutive echos that raised alarms that were subsequently knocked down by Ct-scans.

Sounds like you are under the care of some of the finest medical specialists around. I send you all best wishes and will be praying for you!

My cardio here mention that they could go ahead & do an MRI or RH Cath but he said that if I'm going to Houston, they would probably want to conduct all the tests there. And too, I am extremely claustiphobic(?) and I could easily work myself into panic or heart attack with an MRI!
 
Norma hon, I know that you have had a really rough summer and this is just NOT FAIR.
You are an amazing and wonderful person and your time here is not done yet.
Don't tell Cooker, but I am sending you BIGGER (((hugs))) than his. :) :)
 
Norma, I hate to read your news. You've got a long road to travel before this is all resolved, but I'm confident you can do it. We're here to offer support and prayers from start to finish. Consider us your VR cheering section.:thumbup:
Hugs
 
WOW njean, I pray everything will be Ok, can I ask -who is your cardiologist, also I interviewed DR> Grogoric there And He does valves and transplants. He and Dr. ott were recomended to me as the two best at St. Lukes. The recomendation came by way of ONX valves. THINK POSITIVE!!!!!!!!!!!!!!!!!
 
Norma, You know that I'm thinking of you and am sure that you will do well. The biggest factor in all of this is making sure that you have a team of Drs. who have the experience to deal with your particular set of issues. I would talk to more than one surgeon if I were in your shoes. Let us know how we can support you.

Big hugs coming your way...

Kimmie
 
Thank you all so much! Your prayers, thoughts and support mean more to me than you could ever imagine!

I haven't heard a word from Houston yet but as soon as I do, I'll let you know.

Love you all !
 
Norma - being just a daughter of a patient in waiting, I don't have much to say on the technical side but I wanted to wish you the best as you go through this and let you know I'm thinking of you.
 
Norma you are certainly justified in feeling let down that the 30+ year old Mitral Valve wasn't replaced in 2006 and you now face surgery again.
I hope that the MVR redo will halt the progression of the atrium enlargement or even better still allow a remodelling of the heart.
My thoughts are with you at this difficult time.
 
Oh Norma,
I am sorry to read this post; however, please know that we (your VR family) will be with you in spirit and will walk the virtual walk beside you as you embark on this journey.
You have received some good suggestions rom other members.

I will keep you on the top of my prayer list.
Keep the faith,

We are here for you as you have been for so many of us.
 
I am so sorry to hear this news, it is just so sad. Life just isn't fair sometimes. I can only imagine your pain and worry. You need to be strong, energetic, and stay positive. If you need to vent, or scream we will be here for you. I am sending you loads of prayers. Take care of yourself and keep us in the loop.
 

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