“Anyone Like Me?” Asks Charlotte
As you can read below, Charlotte is dealing with a unique patient condition. In her email, Charlotte asks me whether or not I know of any patients with a similar diagnosis. Unfortunately, I don’t. That said, I thought it would be a good idea to post her email in my blog to see if anyone out there can help Charlotte. Here is what she wrote to me:
Adam,
I have a question because even my doctor’s can’t answer some of my questions.
I had lung cancer 13 years ago (hooray for overcoming lung cancer). I had the left lung completely removed, which is probably what save my life. I had surgery and radiation. I had one lymph node in the pulmonary artery area that had cancer so they gave me radiation directly on the heart.
Three years ago doctors found a leaking aortic valve. So I had aortic valve replacement surgery. Since I was only 51, my husband and I decided to go with the mechanical heart valve surgery because the mechanical valve is suppose to last longer than a bioprosthetic valve. I was in surgery 6 hours. At that time, there was a concern about getting me off of the ventilator because I only have one lung and they did have a little trouble getting me off of it.
When they went in to do surgery, they found that the heart had been burned by the radiation and the valve was starting to atrophy from the burned skin. The doctor said he had to cut out some of the heart because it was burned.
Now, three years after the aortic valve surgery, they have discovered that the other three valves (tricuspid, mitral, & pulmonic) are also leaking. The tricuspid valve is leaking severely, but the doctors tells me it is not a common procedure to replace the tricuspid valve and my outcome could be worse than what I am going through now. I have already had some heart damage and have an enlarged right side of the heart. I have also started retaining fluids.
The doctors said that they want to give me medication to try and control some of the symptoms for as long as possible because of the severity of the surgery for me. They have put me on lasix to try to pull some of the fluids off and giving me Diovan to try to slow my heart down some to lessen the strain on it.
Is there anyone out there that has these same problems?
My husband and I feel it would be best to do the surgery before me heart gets damaged anymore and before my lung capacity diminishes more. We don’t know where to turn or where to get more information.
I just would like to know if anyone else knows someone or has a similar problem. Surely, there are more lung cancer survivors that have gone through similar problems.
Charlotte
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September 5th, 2008 at 9:35 pm
Hi Charlotte,
Have you gone for second opinions?
Good luck, and keep us informed.
Winona Blake
September 6th, 2008 at 10:49 am
I am Charlotte. I have talked to both my Internal Medicine doctor and a cardiologist that the internal doctor consulted with about my situation. I will be going to see the cardiologist that recommended the previous heart surgery on September 17th and hoping he can give me more information.
I haven’t gone to see him yet because he is in another town.
I am also facing the dilemma of deciding whether to quit work or not. I still work full time and put in 50-60 hours a week as a Technical College Instructor and it is starting to drain me. Hopefully, I will find some answers soon.
September 6th, 2008 at 2:51 pm
Hello Charlotte. If your doctors are telling you that “it is not a common procedure to replace the tricuspid valve”, you will need to do research to locate a surgeon whose technical skills were honed doing tricuspid repairs and replacements. Sounds like you need to find the “uncommon” surgeon. For example, we all know that Ted Kennedy had a brain tumor. Instead of opting to have his surgery in Massachusetts General in the Kennedy wing of the hospital, he traveled to Duke University to have Dr. Allan Friedman remove his tumor. Dr. Fridman specializes in the specific region of the brain where Kennedy’s tumor was located. I’m hopeful that there is a valvular specialist, ‘reference surgeon’ out there who can help you. Go to www.mitralvalverepair.org as your first stop. That’s the website of the surgical team who performed my mitral and tricuspid valve repairs. Send them an email or call them. Hopefully that will be a good place for you to start. All the best Charlotte.