Treatment concerns -need your input

Hi! I'm diagnosed with heart disease/problems - some probably related to sarcoidosis - the cardiologist suspects that some is related. I was diagnosed with pulmonary sarcoid back in 2005, but probably had it since the early 90's. I also was previously diagnosed with neuro-cardio-syncope and was treated with 25 mgm metoprolol twice a day. When I was diagnosed with the sarcoid I had a bronchoscopy - biopsy and then my lung collapsed. I was discharged after one night and the next night I was back in with the lung collapsed again and supra ventricular tachycardia. Then I wound up on 100 mgm twice a day, along with dilitiazem 125 mgm. Then my new cardiologist started me on aspirin. I had pnumonia in January and about 2 weeks after I was discharged I went into afib for 10 hours before they were able to get me in normal sinus rhythm. I've had a nuclear stress test (non-treadmill) and an echo. Then I had a trans esophageal echo. My Dr. didn't like the results of the echo and the TEE so referred me for a cardiac catherization. I was also started on coumadin. The results of the TEE and cath did not agree. With the TEE the mitral valve was leaking more than what was seen in the cardiac cath. Dr. is taking a wait and see and has now added simivastatin 20 mgm and lisinopril 10 mgm. My B/P systolic ranges in the mid to upper 80's and low 90's up to a max of 150's. My concern is that my B/P will go too low since it "bounces" around a lot. I used to get severe, almost constant episodes of the afib before the sarcoid diagnosis - my old heart doctor said I just wasn't physically fit - this was a month before I went into the tachycardia. I would just turn around and my heart would feel like it was somersalting. I do not have a pacemaker or defibrillator. I also have CAD - a moderate build up of placque. I am now scheduled for a treadmill stress test on May 6th, and the doctor stated something about working on getting my heart stronger. I'm starting the simvastatin tonight and will start the lisinopril in a few days. That way if I have any difficulty I'll know which medication is causing it. I also have left bundle branch block, and angina symptoms. The atria are also mildly enlarged. Sorry I'm prolific, but I would like to have some opinions on this re the meds; treatment options for both the sarcoid and the heart.
I know surgery is possible down the road, but after my husband had the surgery I'm not crazy about having it. God bless you all! Great-gram

By lkay
Posted April 20, 2009 at 10:16 pm
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Hi Great-gram,
wow! You sure got the short straw by having CAD and Sarc, didn't you? I really can't address your heart questions, but I know someone else here will be very helpful.

Are you a member of the Sarcodoisis community here too? They are a great community - smart, funny, and willing to help out with anything.

Sorting out your problems - it may even be possible that your have cardiac sarc - will be quite the task. I hope you have great doctors to work with.

my heartfelt best,
Laura

By gracie62
Posted April 20, 2009 at 10:32 pm
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Great-Gram:
Don't know a thing about about sarc, but my heart goes out to you for all you have gone through and are going through. I have some experience with Lisinopril that I thought I would share. One of the main side effects to be on the look out for is the development of a chronic cough. I thought I had bronchitis for the first few weeks after I started it. For me, it was worth staying on, since it gave me the least side effects of meds I had tried before. After about 3 weeks, the cough went away. It has few sides effects other than that and for, most people, it subsides or goes away entirely after your body adjusts to it.

Take care -
Dianna

By kk_stl
Posted April 21, 2009 at 3:12 pm
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Great-gram
I don't speak as a heart patient but an advocate and caregiver for my mother who has done alot of research for aortic valve stenosis--a different type of valve problem you are having. Here is what I learned...

The cardiac cath test in the gold standard of tests to figure out what's going on. TEE is supposed to provide a better view than a regular doplar echo. Echos are often used to diagnose valve problems.

Leaky mitral valve can be "repaired" with minimally invasive procedures...you just have to find a surgeon that will operate this way vs. the full sternotomy. I don't kow how they determine when to operate for leaky mitral valve but I am sure there are many women on this website that can assist you.

If you already had a nuclear adenosine stress test, I'm not sure why you have to do a treadmill stress test again. A stress test will give them an idea of where to begin your cardiac rehab so maybe too much time has elapsed since your other stress test?

If you don't need surgery right away and there is no risk to your heart when exherting yourself with exercise, then it is best to recondition your heart to make it stronger before you have the surgery. It will also keep your CAD at bay with diet and exercise.

I've met someone at my Mended Hearts group that was given a pacemaker and defibrillator for his leaky mitral valve. The hospital he prefers didn't want to do open heart if he also didn't have significant blocked arteries. They also didn't offer the minimally invasive surgeries either. I don't know what the criteria is for getting these devices implanted but I know that there are others who have walked this journey and can tell you how they were treated.

You have alot of other illnesses going on at the same time. I am glad your doctors seem to be treating you aggressively. The more complex a case you have the better I feel when I goto a group of doctors affiliated with a major teaching hospital.

Since none of us are doctors on this website, your best bet in getting your comfort level up about your doctors is to ask for copies of your medical file and read up on your conditions to be able to ask questions and to seek a second opinion if you don't feel like they are addressing everything.

Best of luck!

KK

By Great-gram
Posted April 21, 2009 at 9:27 pm
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Greetings! Thanks for the info and reminders. I do need to be more assertive with the doctors - I also need to go beyond my immediate family for history of heart disease and strokes, as I'm an only child; my father died of tuberculosis, but it was actually due to severe alcoholism. My mother didn't have heart problems until after she was well into ahlzhiemers. I have new insurance this year, so I have more choices in treatment facilities, including some very good teaching hospitals. The local hospital only does the invasive surgery, which my husband had; I really don't want to go there. I'm ok with waiting, because I know the doctor will keep a close eye on me. My last stress test was in September, and they didn't have me use the treadmill. She (my cardiologist) told me they should not decide when to shut the treadmill down. I need to tell them when enough is enough. We'll see what happens. I'm a 21 year breast cancer survivor. God answered my prayers - I asked to live long enough to know my grandchildren and them to know me. God has a sense of humor -- He started sending the families back home. Now I have the pleasure of occasionally seeing and holding our precious 5 week old great-grandson. Blessings! Great-Gram

By Great-gram
Posted April 21, 2009 at 9:33 pm
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Greetings -- thanks for the reply. My main concern with the lisinipril is my blood pressure gets very low sometimes, as I am also on metoprolol and dilitiazem. One thing I know is to be careful not to get dehydrated, because that can put my blood pressure as low as 85/40, and that's without the lisinipril. My husband had problems with coughing with one of his meds, but when he switched to diovan, it was much less. Blessings! Great-Gram

By gracie62
Posted April 21, 2009 at 9:48 pm
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Gram:
I have to pass something along, although I do so as a consideration. I am in no way recommending or advising anyone on any medications! I take diltiazem for Prinzmetal's/aka coronary artery spasms. Is that why you are taking it? I was placed on Metoprolol several years ago before being diagnosed with Prinzmetal's. A pharmacist noticed I was taking both and asked if I knew that Metoprolol could lead to and/or worsen artery spasms. I asked my familly doctor who had prescribed it and was told not to worry. He did not agree. Switched to a caridiologist he referred me to who immediately noticed the combination and switched the Metoprolol over to Lisinopril. He said it contributes to spasms. Hospitalized for bypass surgery by a new cardiologist and placed back on Metoprolol. Had a heart attack 18 days later caused by the combination of a blood clot and spasm in one of my new bypasses. The spasm could be seen during the cath to clear the clot. I have made a personal choice to avoid Metoprolol in the future since other medications work for me.

Again, I AM NOT GIVING MEDICAL ADVICE. I am sharing an experience with a prescription medication that you might want to take into consideration and ask your own doctor about if the situation might apply to you. Any time I see someone taking Metoprolol who has coronary artery spasms or takes one of the medications used to treat them, I try to share something that might help them in their decisions in managing and/or treating their condition(s).

I am truly blessed. My first gandchild was born in Aug., 2007. My bypass surgery was 12/07. I count each day as a gift that I get to share the life of this amazing little human. I can't even imagine the sheer joy you are getting out of inhaling that precious 5 week old.

Take care-
Dianna

By Great-gram
Posted April 21, 2009 at 9:53 pm
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Greetings! I don't usually repspond to each individual, but all of you have been so helpful. I believe that the more information we have, the more empowered we become. The cardiologist believes that I do have the cardiac sarc; they eye doctor believes the sarc may have caused the dry eyes, and I believe it's the reason I had early onset cataracts. My PCP believes it's the reason for the sking leasions, but only the lungs were confirmed, and I've received no treatment. Looking at the choices, I don't even know if I want to go there. I just ask the Lord for wisdom alot. I believe finding this site, was part of the answer to my prayers. My pastor has MS, and I've done some research for him. I'm the only employee at church; the rest are all volunteers. Blessings! Great Gram

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