Sarcoid Specialists

I am needing a heart/lung sarcoid specialists. The docs here are looking for one that I can get to. I had a lung bi-op 8 weeks ago and it is there. It has been in my eyes and they are assumming that it is the cause of my heart problems. Two different cardio docs have told me go to one and they are both looking. I thought this was the best way to find one that would get real people reviews and not just a name on paper. I don't get on here very offten, but this time I am needing help and would appreciate any one you can recommend....Thanks

2 Comments

Sarcoid Specialists

by lena0579 - 2009-05-02 06:05:44

Hello, I have had sacooidosis of the heart for at least the last 21 years. I was diagnosed when I was 34, shortly after I had my last child who is now 23 years old. In the beginning I had lung involvement and was seen at Harvard Vanguard Medical Associates in Boston, MA (Kenmore Branch) My cardiologist then was Dr. Stockman. I no longer have lung involvement. I was put on Prednisone for 7 years but the symptoms went away so they took me off of it. I still do have heart involvement. At one time, I was a candidate for heart/lung transplant but again I must've gotten better with medication at the time since I no longer am on the list. Besides the sarcoidosis of the heart, I have left ventricular hypertrophy, cardiomyopathy, ventricular tachycardia and mitral valve prolapse. I have been living with the sarcoidsis all this time. Of course, I had to get a defibrillator years ago. I just got my 2nd replacement on January 22, 2009. My battery has been changed several times(2x). In the beginning I got hits all the time but I haven't had a hit in at least 12 years. I took a turn for the worse 2 years ago when water built up in my lungs and heart. I got last rights from my preacher and they told my kids I would not make it but that was back in March 2007. I am on digoxin, lisinopril, magnesium, metroprolol, coumadin, iron suppl,spiradactone,aspirin,Isosobide, and an anti-cholesterol medicine, forgot the name. Anyways, you get the idea, I am on a lot of meds which can make you tired but take those at night before going to bed. I hope that I have been of some help. Feel free to email me at anytime since I am not working and I am now 56 and retired. You must stay positive. I forgot, my cruuent cardiologist is Dr.Lampert - Brigham & Women's Hospital, Boston, MA (617-421-6050). He can in turn recommend you to a sarcoid specialist.

sarcoidosis

by Silversmith - 2009-05-02 07:05:36

Hi Rattle Box,

Seems that the specialist you need are not real common. There are none to be found in several states. If you will go to the web site
www.sarcoidosisonlinesites.com and click on Dr. Database. You may find one in your area. Also, there is lots of information on sarcoidosis on this site should you need anymore.

My mother was diagnosed with sarcoidosis 8 to 10 years befor she passed away at age 86. She was treated by her cardiologist as there was no speaciallist in our state.

Good luck,

SS

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