Re: heart Palpataions

[Guest guest]

Ruth,

For me, my heart goes into atrial fib where the heart beats are real shallow --the ekg looks like the "tilde" line on the computer--(this one ~~~~~~~~) instead of the nice deep beats. Needless to say, I get real dizzy and feel like I'm falling down. (Probably am.)

Abnormal heartbeats can be from the granulomas on the heart muscle, but it can also be from my "d" word-- dehydration, it can be from thyroid dysfunction -so if you have thyroid or pituatary involvement heart beats get goofy, it can be from stress or anxiety-- so a heart workup is a great idea.

With the Stage III pulmonary sarcoidosis, the right side of the heart has to work harder and enlarges. As this happens -and it happens because the lungs aren't getting enough blood out to the body to carry all the oxygen that we need- then the artery coming back into the heart thickens to handle extra pressure and in doing so we develop pulmonary hypertension. The problem here is serious, as the higher the blood pressure to this artery, the thicker the artery gets, which narrows the artery, and the blood backs up-- and we throw a clot either in the lungs or in the heart.

At this point it's probably not gonna matter- because we may not survive this one. This is actually one of the rarest problems, but it is the most life-threatening.

I don't want to worry anyone, but if you do have heart or advanced pulmonary fibrosis-- be aware that this is a complication, and make sure that one of the tests will include checking for pulmonary hypertension.

Do take care,

TRacie

NS Co-owner/moderator

[Guest guest]

Ruth and all,I have cardiac sarcoid. Took a long time to have it diagnosed. The sensation of feeling your heart pounding is called palpitations. It is wise to have this checked out. In the past when my heart would act up I had holter monitors but the best way to catch an abnormality such as this or irregular heartbeats is a 30 day event monitor. The holter is worn only for 24 hours (usually) but the event monitor has much more time to see what's going on (30 days). With me, I sometimes would also have a low potassium so would get KCL (potassium) in the ER and the doctor would think that was the problem since either a low or high potassium can cause arrythmias (as can being either hypo or hyperthyroid). I would be really careful and make sure I was eating a diet with potassium included: bananas, etc. It would still happen. Sometimes I would get a quivery, funny feeling in my chest (now I know that feeling was a-fib since had it diagnosed one night in 2006 when I woke up

and hit the buttom to catch the ekg strip on the monitor I was wearing...it was the same feeling I had experienced in the past but would be gone by the time I got to the ER). I had PVC's which would be picked up but the doctors' would say were "benign". Home I would go feeling tired and washed out. Then for a long time nothing (doctor had put me on atenolol for the fast and sometimes irregular heartbeats). Finally, in 2004 (was dx in 1994 with lung and liver sarcoid) when my sarcoid came back and raised its ugly head, my heart starting acting up again. Still no one recognized it at first. In Nov 2005 I went to s Hopkins Sarcoidosis Clinic and was told it looked highly suspicious for cardiac sarcoid. I had previously had a cardiac stress test (my cardio told me was fine so I told my JH doctor this). In April/May 2006 wore another 30 day event monitor and as they were trying to slowly taper me down on the prednisone my monitor picked up the a-fib and other irregular

beats. Still my cardiologist said all was ok and told me my event recording was fine. I didn't feel fine so went back to him before going back for my follow-up trip to JH in July 2006.He knew I was going back to JH in a few days and told me "I don't want you to be an experiment". I asked his staff for my event recordings from the 30 day monitor as well as reports from the cardiac stress tests over the past couple of years and echos, etc. When I opened the envelope at home when was sent to me I was shocked to see with my own eyes that my event monitor was NOT fine and neither were my other tests. My cardiologist had even signed off on these tests so I know he saw them plus the stress tests were all done in his office with him interpreting. My stress test was a thallium one and showed a patchy uptake in the exercise part and most importantly during the rest part. This was HIGHLY suggestive of sarcoid involvement (could be inflammation or granulomas in those areas). Coronary

artery disease doesn't present in the way mine did. Since it was known I had sarcoid it was a given. My JH specialist took one look at what I brought him and said you need an AICD (defib) b/c you might be fine one minute and gone the next. He had mentioned it before but b/c I never was given the stress tests reports and hadn't had my event monitor report for him in Nov, we were going to pursue other tests (MRI). He could only go by what I was telling him plus only had incomplete reports that said nothing like what I mentioned above until July 2006. When I returned to Florida from Baltimore I immediately changed cardiologists and my new one said I had cardiac sarcoid. Referred me to an EP cardiologist who does AICD's. This Thursday at 8am (Jan 25) I will have a pacemaker and a defib put in me. I know this had been long but wanted to stress the importance of getting a cardiac workup to anyone who has any signs of heart problems. Sure, it could be related to something else

but certain tests could save a persons life. The Sarcoidosis Research Foundation (FSR) can be found online (is a great site for info on any type of sarcoid) and will send anyone free a brochure on cardiac sarcoid. It was funded by the family of Ken Felts who suddenly died from undiagnosed cardiac sarcoid. I'm in no way trying to scare you or anyone else but I wish I had known all this info back in the beginning. It's important to get treatment started with cardiac sarcoid to get the inflammation down and prevent granulomas which can interfere with the electrical impulses in the heart. I know in my heart that I would not be here but for the Grace of God. Blessings,Beckyolehomepla wrote: Well, folks I spent most of the afternoon today in the ER. I have been having some feeling of hard beating in my heart I tried to get into my primary..but they insisted I had to go to the ER. I am now wearing a heart monitor. For those who have had heart problems ..can your heart really feel like it is going to pound right out your chest...and you still not have any heart problem?? Sarcoid does get blamed for everything doesn't it. Hospital staff were really nice and didn't get the "oh here comes another trainwreck" atitude. I hope you are are doing well Tracie hope you are doing well also... Ruth

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