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I have cardiac sarc

Woody2
1 Recommendation

Hello all,

I have been posting lately about chest pains and palpitations. Well, it has been confirmed via two types of cardiac PET scans that I do in fact have sarcoidosis in the heart. The next step is a cardiac MRI when I see my pulmonologist tomorrow. Then I see a cardiologist who may do an electrophysiology study to determine if I need to have a defib pacemaker. Of course I will now have to start therapy tomorrow. Wish me luck and thank you to those that have been very helpful so far!

Explore topics in this discussion:

Toprol XL Pulmonary sarcoidosis Arthritis Imuran Cardiac sarcoidosis Back pain Syncope Beta blockers Pain Prednisone Pacemaker Sarcoidosis Methotrexate Stress

28 replies

eboneegirl

Hi Woody 2,

I'm sorry to hear that you have Sarcoidosis of the heart I too have chest pains and heart palpitations.

Today, I had a 2 Dimensional echo ultrasound test performed on my heart and of course I'm hoping they won't find sarcoidosis.

The cardiology radiologist a very nice lady was performing the test on me she says "I'm not supposed to say and don't tell them I told you but I see the sarc and it's on your heart"......

Sarc has my eyes, nose (loss of taste and smell) my lungs and now possibly my heart it just keeps getting worse for me.....I found out I had sarcoidosis 3 weeks ago.

I haven't panicked yet, I'm waiting on the findings and impressions from the heart test.......please pray for me....

I wish you luck, and I may need your advice on next steps I should be taking...

Good Luck tomorrow...

ImaHouseEpisode

While I am sorry to hear about the dx... since its involved your heart its a good thing you know now. Do the tests and if you need the ICD, GET IT! It is scary, it is painful- both implant and shocks, but it is a life saver and the only thing that will save your life if you should suffer cardiac arrest. I did this the hard way, I died first. I have a saying, I died before I ever knew I needed help living. Now that I have my ICD I can deal with knowing something could happen with my heart at any time. It's saved my life already and I know it will do so again. =)

eboneegirl,
I am glad for you that you have had conclusive diagnoses in such a short period of time, I know that may not seem like such a great thing, but it beats not knowing whats going on! I sure hope that your radiologist saw something else, and will keep my fingers crossed for you.

TexasAngel

Wow Woody!! It sounds like you are being thoroughly tested! My first symptom of cardiac sarcoidosis was fainting. Are your EKG's normal? I agree with ImaHouse, if you need the ICD don't hesitate!! I know you are young and it is overwhelming. I actually have a CRT-D biventricular pacemaker/defibrillator combination. So I am covered if my heart goes too slow or too fast. I am completely dependent on the pacemaker part and have not needed (and hope I never do) the defibrillator part. I took prednisone for a year and methotrexate. I have been on the methotrexate almost 18 months. I now feel almost normal, like I did before all this started happening two+ years ago. Modern medicine is wonderful!! I hope you find something that works for you.

I hope you do too Eboneegirl!

It is important that all your doctors work together as a team to find out what is the best treatment for you!

There are a few on the boards (including ImAHouseEpisode and myself) that have traveled and are traveling the cardiac sarc road before you and have lots of advice if you need it. Everyone's experience is different, though. And what works for one may not work for another.

I wish you the best!!

TA

gonenatural

Hi Woody

just popping in to say i am sorry you received that dx and happy you found out what was wrong.

it appears you have a good dr, too bad you live so far away or i would maybe give him a try.

best of luck to you and your future drs and tests.
gn

tinaliny

Hi Woody2,

I'm so glad you found out about the cardiac sarc and can take the necessary precautions! Of course, I'm also sorry that you have it in your heart at all. It sounds like you have a good team of doctors, and that's a great thing! Keep us posted on your progress.

I'm also traveling this road of trying to find out if it's in my heart. It seems that all my tests so far haven't shown anything (or I'm guessing I wouldn't heard by now). I'm still wearing the heart monitor ("event" monitor). I am nervous already about having to ask for a pet scan of my heart, because this doctor isn't too happy that he doesn't have a slide with a tissue sample to prove that I have sarc (even though 2 of my doctors concur that it's definitely sarc). I am afraid he's just going to dismiss me. Did your doctor recommend the pet scan, or did you have to ask for it?

I wish you a pain free and blessed day!

Tina

Woody2

Hello Tina,
I was very pro-active in asking for the appropriate tests. It turned out that my general doctor didn't even notice that my echocardiogram was abnormal as compared the the echo I had a year ago. I found that by looking through my records because I was getting everything ready to make an appt with the sarcoidosis specialist at U of M, Dr. White. I had called Dr. White to ask if he thought the echo was significant since I had chest pains and palpitations since early July. He said yes and that was when I asked if I could have a 24 hr monitor and a cardiac PET scan. After I spoke with Dr. White, I literally sat in the general dr office in Lansing and insisted they put an EKG monitor on for 24 hours and that they order a PET scan before I leave their office. They had Dr. White's number and he had said yes to the monitor and PET scan. I sat in the office for 4 hours because I wanted to make sure my general dr took the right steps. See it was my general dr that has been following my care all along and really didn't know much about sarcoidosis. So I am fortunate to have Dr. White. I was very pushy because I was scared and knew there was something wrong. I had been to the ER twice and the general Dr. office 4 times before I went in and "protested" to have the monitor and PET scan. Once the general dr got the monitor results back they realized that I should be taken seriously because they were abnormal with many ventricular ectopic events. I believe that if it wasn't for my persistence I would not have this diagnosis right now. You have to be your own advocate. Get all of your records and ask lots of questions. Do not assume your dr knows everything. My dr. missed a very crucial piece of evidence. I feel that I honestly saved my own life by finding it on my own and being pushy.

I appreciate your advise texasangel and imahouseepisode. I will certainly not hesitate if I should have an ICD. I don't want to learn the hard way:) It's all pretty scary but I'm thankful to have this site and the connections with folks that have first hand experience and information.

Ebonee girl and tinaliny I hope and pray all goes well with you. Be strong and be pro-active this is not a diagnosis you want to find out about too late.

Hi gonenatural, it's nice to hear from you. I have a wonderful team of doctors so even if you do live far away it may be worth looking into to travel to U of M. I've also heard wonderful things about Cleveland clinic.
Take care.
Heather

Mc_D

Hi.

It's good that you are paying close attention to your mental care. The doctors mean well, but they are human and miss things that only an active and aggressive patient notices.

I have cardiac and pulmonary sarcoidosis. Keep paying attention to your body, keep fighting and keep me updated.

David

Farrow

Heather,
I'm so sorry to hear about your diagnosis. I was so wrapped up yesterday that I didn't get online to see any postings, so I'm sorry that I'm just now reading about it.

You're now officially above my skill level so to speak. But I'm very glad that there are others here for you that have cardiac sarc, too, and can help you navigate the new waters.

You are still in my prayers and you can always call whenever you need to talk. Keep me updated on your progress.

Hugs,
Loran : )

tinaliny

Heather,
Thank you so much for taking the time to respond to my question! I really apprecaite your input and advice. I'm keeping you in my prayers, and please keep us posted on your progress as you can! Take care!
Tina

Woody2

Thank you Farrow and tinaliny for your responses. I have definitely been praying for all of us to have doctors that have the knowledge to treat this disease.

I went to my pulmonologist yesterday. He prescribed Imuran, an immunosuppressant. I cannot tolerate steroids so he is trying this drug out by itself for now and I will be monitored closely. He scheduled me for a cardiac MRI this upcoming Wed. The cardiac dr that I am going to be seeing is an electrophysiologist specialist. He will be looking at the MRI to determine if he wants to go ahead and do an electrophysiology study. The electrophysiology study will determine if I will be needing a defibrillator. He called me because he couldn't see me but wanted to have me set up for an event monitor as well as a prescription for beta blockers to control the arrythmia to get me by until I see him. Both docs think that this has been caught early and they are both optimistic:) So needless to say my husband and I were feeling much much better after I left the dr yesterday. The radiologist that had read my PET scans was doom gloom about the whole thing but the pulm and cardiac doc said that they treat many patients such as myself (they both specialize in cardiac sarc) and so they were not doom gloom but upbeat about how early this was caught. I'm sure learning alot about this stuff:) I am a research scientist so I do fortunately understand what they are talking about when they get into the details. BUT take notes anyway even if you think you know exactly what they are talking about. The stress will make the information go in one ear and out the other. My husband takes notes too. Its best to have someone else with you at your appts too because they may catch something that you have missed. When my hubby can't go my best friend goes with me.

Take care!

AngrySarcoid

I too am inflicted with sarcoid of the heart. I am on my third "can" as they call them, since 2003. The first was just a pace maker, then a pacer and defibrillator and now I have the delux model, bi-ventricular pacer and defibrillator. Life is good. I have had some flare ups and the defrib has key. This may sound crazy but I hope you get one, an ICD that is and not a flare up. Check out the link on my profile for what happened to me about a year ago, if you want, I was a rather scary time. Good cardiologists/EP docs are essential! Best of luck

Kimlou

You are in my thoughts, Woody2. What a roller coaster ride you are on. Best of luck to you.

hfavorone

Hello Woody2,
I too was dx with cardiac sarcoid and I am being treated by a team at the Mayo Clinic in Rochester. MN. I take a small microcassette recorder with me to my appointments. It really helps because when their throwing all the information at you it does go in one ear then out the other. I pray that your results are far better that what the other doctors had suspected.
I will share my dx at another time. Strong healthy hearts to all

Woody2

Hi Mc_D I like your blog. I wish you lots of success. I hope your appt Sept 8th goes well!

Mc_D

Thank you, Woody2. I appreciate your message and hope all works out for you, too. Please keep me posted. I will do the same.

- David McClendon

crochet

Woody2,
What a joy that cardiac sarcoidosis is being caught early these days. And the more that we talk about the need for a close look at the heart when sarcoidosis is present...the more cardiac sarc will be caught early.
*My profile explains what happened to my husband*
Thank you, Woody2, for encouraging everyone to #1 take a "note-taker" along with you to all appointments and #2 get copies of all your doctor's notes, test results and lab work.
Thank you for taking so much time on this site sharing your life with us. It helps me to have this connection to others with cardiac sarcoidosis.

Abazar911

Hello TexasAngel, I had syncope 3 weeks ago and had a brutal fall down stairs which gave me one heck of a concussion and a broken wrist. Everything done in the hospital came out negative, but the cardiologist has a high suspicion for cardiac sarc so I am having a cardiac MRI this month at a major university teaching hsopital where i am followed for my sarcoidosis. Do you know how accurate the MRI is? My doctor says it is more accurate than a PET scan. I have been having chest pain off and on since my dx. in March. Is chest pain part of cardiac sac? Any info would be appreciated. Thanks, Abazar911

Farina

Hello all,
Our cardiac stories are similar; it was the episode of syncope (ouch!) last summer that made doctors suspicious, but my GP dismissed everything when tests came out normal (echo, chest x-ray, ACE--and ACE is generally not elevated in cardiac sarc). I persisted, still feeling that something was amiss, and finally, I traveled to the University of Chicago where cardiac sarc was diagnosed by a cardiac MRI--and a knowledgeable, aggressive team of doctors. I've had my ICD now for 7 weeks and the peace of mind it gives me is incredible. There were too many nights over the last year when I worried I wouldn't wake up the next morning--palpitations, racing heart. As much as I hate the diagnosis, I'm grateful for the intervention that can save my life. For all of you struggling with finding a diagnosis, I hope you get answers soon. Now I begin the road of steroids and the hope that they will send the sarc into remission. SarcoidPrincess has posted about her trip to the Electrophysiologist over the last few days and there's a lot of info in there about cardiac sarc, too.

Farina

Woody2,
Good luck with your Cardiac MRI this Wednesday. You'll have so much more peace of mind when the results are in. I reread one of your posts and it mentions the pain that goes through to your back--I have a similar pain and have always wondered if it was my heart or lungs. Once I got my diagnosis, I was sure it was heart but the EP assured me it was not. It turns out that the Spinal MRI (part of a complete Sarc workup) revealed advanced arthritis of the cervical spine and moderate arth. of the thoracic spine; the rheumy believes that is where the back pain originates. It's been hard discerning where one condition ends and another begins. I sympathize with your distaste for gaining weight & getting crabby on steroids, but I kind of resolved that for myself--as I said in a post to SarcoidPrincess, fat & crabby girls go on vacation, dead girls don't. In her book "Model Patient: My Life As an Incurable Wise-ass" Karen Duffy did a lot to educate me about what one might have to go through to get well. It helped me enormously--and it was a funny book at the same time it was poignant. Again, good luck on Wed--I'll watch for your post about your results! Sharon

EinCO

I was dx with card sarcs it wil be two years in Feb and been through every scan and heart test you can think of . I was given a ICD as my Dr. said it is better to have and not need it than to need it and not have it.
God luck and do not worry about it if you get one you
will think everyone should have one it's like your own
personal Garurding Angel with you.

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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