Hodgkins and heart problems

[mclinda]

Thanks for taking my question. I am a 45yo female.  I am currently in remission from Hodgkins disease (2003). In 2004, I fainted at work.  Long story short, I went to the cath lab and was found to have 95% blockage in one artery which was stented.  That night the stent occluded (still inpatient) which caused a "major" MI. I was restented with 2 more stents.  I am left with an EF of 36%.  Meds include plavix, asprin, topral, captopril, norvasc, lipitor and lasix.  I continue to have SOB with any exertion. I am quite fatigued. Doc doesn't seem worried. I work full time and feel ok  but wonder is this as good as it gets for me? What else can I expect? Will other arteries become blocked as well? Docs blame ABVD and mantle field radiation on the heart problems.  Have you heard of these late effects?  I should mention that prior to 2003, I was very healthy. Am I considered to be at high risk for another MI?  Are the issues considered CHF and/or CAD? Thank you.  Linda

[CEllen]

Where do I begin?  First of all, I apologize for the lateness of my response.  I began looking through the web today as I've been told by two different cardiologists that I need a pacemaker.

And I don't want one.  I ran across this message board in my search.

To the original poster:  I'm living through what you did.  I am now 50 years old. At the age of 28, I had total nodal mantle radiation for Hodgkin's disease stage IIIb.  I had a small heart attack when I was 43.  No one knew at the time *why*, as I have no cardiac risk factors.  The cardiologists response was "You're just lucky, I guess."  !!! It took research on my own to discover it was from the radiation for Hodgkin's. I then went one with my life.

This is where it gets tricky.  I must say, I am so sorry, honestly, I am, and it is not my intent to  alarm you -- but last September I had a massive heart attack and a three-vessel bypass.  My family had to gather as they didn't expect me to live to the next morning. In other words, it was very bad.  By the grace of a higher power, I survived, and now I am back to working full time and exercising three hours a week.  It has been a struggle, no question about it. I have an ejection fraction of 40 -- when originally after the MI, it was 25.  I feel fine and can do whatever I want.  But, because of my age, the doctors want to put in a pacemaker or an AICD.  I do not want one. My occupation for the past 20 years has been a medical transcriptionist.  I type on pacemakers all the time -- they get recalled, they malfunction, they fire when they are not suppose to, and don't fire when they should. They get infected.  Is it any wonder I am against it?  

But -- getting back to your original post -- unfortunately, there doesn't seem to be any cardiologists out there who are well versed in our very unique situation.  We were the pioneers who survived cancer.  Hopefully, as yours was only a few years ago, you didn't get as much radiation as I did. And because there are so few of us, no one really knows how to best deal with us or what to expect.  From my  research, apparently, the radiation prematurely aged our hearts, even though mine was shielded -- like yours probably was too.  I also went into radiation induced menopause at 28 -- even though my ovaries were shielded.  I should have figured then that there were going to be problems in the future.   I have no words of wisdom for you -- I'm so sorry -- I wish I did.  I guess the reason I responded here is that I did go on to have another heart attack.  Maybe you won't.  No one when I was 43 knew or said anything about that possibility, basically, I'm sure, because they didn't know.  I'd be happy to correspond with you if I knew how to do it without leaving my email address to be spammed, as we have much in common.  

My best advice is to not take lightly any sort of chest or UPPER  ABDOMINAL PAIN.  I had had upper abdominal pain for about a year and I choose to ignore it.  Exercise, stop smoking if you do (I never smoked) lose weight, watch your diet.  Cut down on your stress (that was a big one for me).  

The best of luck to you.

[Emmaj]

Hi McLinda,

You might want to check Amazon for a book called (I think) Arrow through the heart: One woman's story... by Deborah Daw Heffernan (I think). Hopefully, I'm close enough so that if you looked, you'd find it. The used copies cost only a dollar or two. She had an MI at 43 and wrote about her experience -- I also had MI at that age, and it was interesting to read her (even though we are really different), and unlike she, I also have to work ft. Also, in this forum, you might be interested to read the posts by Konopka 55 and Dotticece. Konopka (Marilyn) also had an MI in her early 40's and some other problems. She has a pacer -- I think biventricular icd. She is really upbeat and encouraging -- and a runner! I really recommend cardiac rehab,like the doc suggested, or if it is too expensive (insurance covered mine after pacer insertion and, actually, a valve replacement -- since my mv was going as well), then just walking might help. Your heart put to a little work out might develop some more collateral circulation? Just a theory of mine, not sure how sound! It took me quite some time to recover from the MI, but exercise did really seem to help. I wish you luck -- how unfortunate to achieve remission, then find yourself a cardiac kid, so to speak. Good luck!

[CCF-M.D.-MJM]

Hi Linda.

You have had a tough few years.

I work full time and feel ok but wonder is this as good as it gets for me?

It is hard to say.  Sometimes cardiac rehab programs help improve post MI fatigue and also help psychologically by reassuring you that you can exert yourself without putting your self at risk.  There is often a mental and physical component to post MI fatigue.

What else can I expect?

You are on the right medications, hopefully you are on the right doses -- that is, make sure your blood pressure is as low as possible without causing symptoms of lightheadedness when you stand up.  Ejection fractions less than 36% (35% and below) are often candidates for defibrillators.  This one make you feel better but it will decrease the risk of dying from a heart arrhythmia.  You should talk to your doctor about this.


Will other arteries become blocked as well?
Docs blame ABVD and mantle field radiation on the heart problems. Have you heard of these late effects?

I wish I could answer this one.  Yes radiation is known to cause proximal coronary artery disease, but usually many years after radiation (more than 10 years).  Cancers themselves increase the risk of clotting and risk of MI's, but you were in remission at the time of the MI.  It is difficult to say if the CAD will progress.  The key is staying on your medications that are proven to decrease your risks -- you are on the right medications as long as your blood pressure is controlled.


Am I considered to be at high risk for another MI? Are the issues considered CHF and/or CAD?

There are different types of MI's.  It sounds like you had acute stent thrombosis.  While this is an MI, it doesn't sound like the classic MI that is caused by a spontaneous ruptured plaque.  This was related to the procedure.  It is difficult to categorize people as high or low risk without knowing all the details.  My best guess is that you are not high risk for another MI, but I am not sure what the mechanism of your CAD is -- radiation related or not.  You should continue to follow up with your cardiologist and report any symptoms should they occur.

By definition have CAD and heart failure.

I would encourage you to ask your doctor these same questions.  There is no way to know for sure about most of your questions.

I did my best to answer your questions but also want to add that answer questions like this without meeting you is very difficult.  It is very easy to misinterpret my answer or even your questions.  This is where face to face interactions are very important and I am sorry can't off that here.

Good luck and thanks for posting.