What now?

[queenie]

I just got the results of my 1yr post-op echo after my 2nd OHS. I had my aortic valve replaced for the second time at the Cleveland Clinic last July. My echo says my new valve is fine but, I have moderate pulmonary hypertension and moderate tricuspid regurgitation. What's going on? I have read this can happen after mitral valve replacement but, aortic? Have any of you heard of this before?

 

[Nancy]

My husband had severe PH. He had aortic and mitral valve replacements. I can't say what could have caused the PH, he had many medical problems.

 

[Mickey]

Please keep us informed! What kind of valve did you get last year? Will you go back to the CC for more surgery? I am going in for my first aortic valve replacement at the Cleveland Clinic in 2 weeks. Thanks for any information. I wish you well.

 

[queenie]

I had hoped to never look for another surgeon again, who is doing yours? I used Dr. Bruce Lytle and he is now the head of the heart and vascular institute at Cleveland Clinic. When I need surgery again, I don't know if he will still operate. I was hoping to find some others who knew something about my issues. This journey is full of twists and turns and who knows what's next? I wish you success on your surgery and don't expect too much from yourself and your recovery. It takes a lot longer than you think it will to get better. Just remember it is a big deal and cut yourself some slack.

 

[Nancy]

Here are some sites to help you with the PH. This one gives a good description of PH and the treatments and acronyms associated with it.

http://www.chfpatients.com/ph.htm

The following are from the Pulmonary Hypertension Association website.

The first is general information, and the second is the Discussion Forum like VR.com

http://www.phassociation.org/

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[COLLEEN S]

Hi, I had my St Jude and aneurysm repair Aug. 08. I remember the surgeon telling me my numbers would even out...I had an echo done March of 09 when I got a new cardio, and results were like yours.

 

[Mickey]

My doctor is Dr. Lars Svensson, at the Cleveland Clinic. I am supposed to have surgery, aortic valve replacement, in the middle of August. I am basically asymptomatic, but my echo indicates a need for the replacement. Queenie, have you had your aortic valve replaced twice? Have you contacted your surgeon or cardiologist? What does he say? I wish I could offer advice. Hopefully someone can. Your comments concern me.

 

[queenie]

Mickey, I don't want to scare you. What happened to me is very rare. My body created pannus (scar tissue) under and on the mechanical valve and closed it off. I have connective tissue disorder which may have contributed to this happening. I was under the impression that once my valve was replaced the first time I was home free. However, my experience brings home the importance of keeping your follow up appointments for the rest of your life. The fact is we are more likely to have other heart problems too. I am 48 years old an have had 2 OHS. There is another in my future even if the scar tissue doesn't grow back because the tissue valve will not last the rest of my life unless I get hit by a bus!! HA ha! For the majority of you all one surgery is all you'll ever need. I hope this is the case for you Mickey. your Doctor has an excellend reputation and I know he'll do a great job for you. Take care.

 

[Mickey]

Queenie, thank you for taking the time to reply to my letter. I wish you the very best, and thanks again for putting my mind at ease. 2 weeks to go! Mickey

 

[njean]

Mickey, I don't want to scare you. What happened to me is very rare. My body created pannus (scar tissue) under and on the mechanical valve and closed it off. I have connective tissue disorder which may have contributed to this happening. I was under the impression that once my valve was replaced the first time I was home free. However, my experience brings home the importance of keeping your follow up appointments for the rest of your life. The fact is we are more likely to have other heart problems too. I am 48 years old an have had 2 OHS. There is another in my future even if the scar tissue doesn't grow back because the tissue valve will not last the rest of my life unless I get hit by a bus!! HA ha! For the majority of you all one surgery is all you'll ever need. I hope this is the case for you Mickey. your Doctor has an excellend reputation and I know he'll do a great job for you. Take care.

Hi Queenie,

I know you & I have talked privately about our very similar circumstances before.

I too have the pannus growth in & around my 34-year old mechanical mitral valve which is impeding the normal flow of blood thru the valve. Therefore, my left atrium is "severely enlarged" according to Echo's & TEE's & have now developed high pulmonary pressure.

I was put on revatio in February of this year but found out I can only tolerate 20mg per day rather than the 60mg they (cardio) wanted me on. I am scheduled to go see a Pulmonary Specialist this coming month for an assessment.

As you know, I have had 3 OHS already & they really are trying everything they can to keep me from having to have a 4th because it would be extremely risky so I just keep praying that the meds they have me on now, will buy me some more time.

Ask your dr about revatio & whether it might work for you or have him recommend a good PH specialist for you. Even though I am on a rather low dose of the revatio my pulmonary pressures have dropped; from 88mm to 60mm at the present.

Good luck Queenie & please pm me if you wish!