View Full Version : Post Myectomy diagnosis of Sarcoidosis...Cardiac Granulomas
08-27-2003, 03:21 PM
Well today I visited my HCM docs and got new bad news. 5 weeks post Myectomy they told me the pathology report came in from my septal tissue and in it they found granulomas. They suspect I also have Sarcoidosis which can affect the heart but is usually found first in the lungs. I have had many x-rays of my chest and they never showed up there. Interestingly, as I read up on this disease I find that some of the symptoms can be similar to symptoms with HCM. After the surgery I am still experiencing lung problems. My question here and the reason I am posting this is to ask if there is anyone out there who has had a similar diagnosis. I was obstructed with 100 mmHg gradient now it is 1.2 mmHg. I went from 2.6 cm septum to 1.0 cm septum, so the myectomy was a complete success but now I have a new one to deal with. Thanks again.
08-27-2003, 05:03 PM
I have no idea about your question, but I sure hope that you get some answers soon.
08-27-2003, 06:56 PM
This is very interesting to me because I am sort of in the opposite, but similar, situation. I have granulomas in my lungs with progression toward plural thickening. Since I have been thoroughly tested for TB, one of the most likely diagnoses is sarcoidosis. In fact, several doctors, when hearing of these, simply concluded that I do have sarcoidosis. Thus, when I began having severe arrythymias and fainting (I had had some arrythymia for years, but only fainted in the last year and a half a couple ot times) and looked on the web, I concluded that I had heart involvement of sarcoidosis. I also have erythema nodosum, which is often associated with sarcoid, so that made the heart involvement more likely. Studies show that people who find that they have lung involvement alone through a chest xray for work or other random test, rarely have other organ involvement. But people who find they have lung involvement as a result of another condition (I discovered it because of the erythema nodosum) are likely to have other organs involved. Therefore, I was surprised to get the HCM diagnosis. No one has followed up on the sarcoid or lung issue other than semiannual chest xrays. I do know that cases of sarcoid without lung granulomas are very rare from what I have read. So, I would definitely ask lots of questions and I'd love to keep in touch with what you find out. I will be praying that you have the self-limiting form of sarcoid, which usually goes away spontaneously in two years, although I doubt that since yours was found in your heart rather than your lungs.
Keep in touch.
09-02-2003, 06:55 PM
This is what I found about this diagnosis... Past this I can not add anymore at this time as I am not knowledgeable on this condition I will say that you have asked an interesting question that I will follow up on in the future.
Anyone can get sarcoidosis. It occurs in all races and in both sexes. Nevertheless, the risk is greater if you are a young black adult, especially a black woman, or of Scandinavian, German, Irish, or Puerto Rican origin. No one knows why.
Because sarcoidosis can escape diagnosis or be mistaken for several other diseases, we can only guess at how many people are affected. The best estimate today is that about 5 in 100,000 white people in the United States have sarcoidosis. Among black people, it occurs more frequently, in probably 40 out of 100,000 people.
Overall, there appear to be 20 cases per 100,000 in cities on the east coast and somewhat fewer in rural locations. Some scientists, however, believe that these figures greatly underestimated the percentage of the U.S. population with sarcoidosis.
Sarcoidosis mainly affects people between 20 to 40 years of age. White women are just as likely as white men to get sarcoidosis, but the black female gets sarcoidosis two times as often as the black male.
No one knows what causes sarcoidosis.
Sarcoidosis also appears to be more common and more severe incertain geographic areas. It has long been recognized as a common disease in Scandinavian countries, where it is estimated to affect 64 out of 100,000 people. But it was not until the mid-1940's--when a large number of cases were identified during mass chest x-ray screening for the Armed Forces--that its high prevalence was recognized in North America.
09-14-2003, 12:28 PM
Doug Iam very sorry to here about the pathology report that you received . I hear that there can be many concerns with this diagnosis. I heard of it a long time ago when a former high school friend was diagnosed with it after they thought she had pneumonia . They found the nodules on her legs as well. As I have lost track with her over the years I'm not sure how she has done or if it progressed. I've read that usually if one has the skin nodules then it is often the more benign . Further exray at the time showed 1or 2 sarcoids in her lungs. Keep in mind this was all done at a local hospital that a lot of my problems have been overlooked and it was about 17 years ago. It is a small world and I think I would hear if she progressed in this disease . So there appear to be many variables. Now for the next bit of info. While I was waiting for my heart cath on 9/12 at NEMC ,the 41 year old man across from me and I chatted. He was having his 1 year post transplant cath. He and his wife told me that he was initially thought to have HCM , through testing they found sarcoidosis in his lungs . They said his heart was tested and it was not there. He was informed that it might just remain isolated in his lungs. Unfortunately he became ill and they believed he had pneumonia. His wife said he got real bad with this event and as it turned out his heart failed . He got a AICD then a ventricular assist devise and waited 5 months for the transplant in hospital for the last 2 months of it. The pathology of his failed heart revealed sarcoids all over the outsideof it. His new heart is doing great but he appeared and sounded depressed his wife agreed and we talked while he was having his cath. She said he doesn't handle all this well and it appears to effect his overall wellness/tolerance. They are a strong couple together and I know she pulls him along . When we were both back and trying to get my son to change the hands on the clock behind th e nurses back (only kidding ,but we thought about it) (I got the angio seal plug but he couldn't so I left before him), we were able to talk about the grief process involved and the overall loss and uncertainties about life as compared to what we had thought and hoped life would offer each of us when there was no hint of heart or health problems. Having said those few things we were able to move on laugh about the Maury Povrich show guests and how they REALLY should GETa life and we talked about our common interest FISHING. He became animated and the fish tales began to role . Hopefully he'll be able to fish soon and that could happen for me too. I think in the back of his mind he is thinking that the sarcoidosis might invade his new heart , he may have been told that but that would have been far too intrusive on my part to ask either of them after only knowing them a few hours. So Doug I believe you are still at the right place and they must be going to hook you up with some one for more tests . Good luck with that and let us know if you want to share. I am pulling for you as I know everyone on the board is . I will hope and pray yours remains without further advancement. Take Care . Pam
09-17-2003, 05:05 PM
Pam, thank you for your response and concern. I appreciate it and have been thinking about you and your impending procedure. I go by NEMC regularly and would like to know when you do go in. If you would like a visitor I would like to meet you if you are up to it. After the first few days of course. I like the guys at NEMC and have through time grown to trust Dr. Rastigar very much. His work on me was superior and I am sure you will have an excellent outcome. It seems hard the first couple weeks but really gets better fast.
Regarding the Sarcoidosis. Bad news. It has been determined I indeed have it in my lungs as well as pulmonary fibrosis. That is why I still have what SEEM like symptoms of HCM even though my myectomy relieved my obstruction and brought my gradient to almost zero. Where do I go from here...I am told they would like to wait a few months until I am about 6 months out of surgery since some of the breathing problems could be some artifact of the HCM and will subside a little over time. Then they will biopsy my lungs and determine to what extent the fibrosis has taken hold. I wish I had better news...believe me, I was planning to feel like a teenager again after all this but for some reason I am getting yet one more life test. I escaped all health problems except for the occasional cold for 36 years but in the last 2 years have had enough to make up for it.
The bottom line, I keep a positive attitude and am lucky to have what I do have. According to the doctors I am a very rare case and the only case of HCM AND sarcoidosis simultaneously they have ever seen, so I think I am going to start playing the lottery.
Good luck Pam, I will be waiting to hear how things progress and let me know when they are going to get started.
09-18-2003, 03:25 PM
I know you have a great deal of issues that you must be dealing with and I know you will keep up your wonderful attitude!
Please know we are always here for you and are happy to lend whatever support we can.
As for the lotterty...what the heck seems like your working the odds...and who knows what good may come :wink: oh and if you hit it big...remember your friends at the HCMA :wink: :wink: :roll:
09-24-2003, 08:13 PM
Hi Doug , I am sorry it has taken a bit to get back to you . I have just been diving into everything imaginable trying to get as much in order as I can . I realize I have also been blocking . I venture to use the term disassociate as from early childhood, at age three, when I experienced a most traumatic event , I was able to go to my secret place where no harm or no pain could come to me, (no thinking or dealing was allowed.) I realize over the years that I still go there and I don't usually know that I am until something hurls me back into reality .... I went to see Dr. Rastigar on 9/23 and also had all the pre-op testing done . The date is 10/15. Reality is setting in and I am present. I realized I must stop feeding off the fears of my family members who are not in agreement so I can stay present and stop my fleeing. I have decided to finally put ME as first priority and stop worrying about them for now. They're never going to be ready ,I have to be ready ,I am the one going through this . It is just very difficult for me to let go. I also realize I am doing this for them as well because I can't help them in the future if this disease is not slowed down and I continue to decline in health. Given that little bit of psycho nuts scenario you probably wish you didn't offer to meet me post surgery. I am really not certifiable just too in touch with life, my life and the lives of those around me. If your offer still stands and you are up to it I would welcome your visit and meeting you. You can inspire my recovery through the trials you have already encountered and the ones you continue to face. I will aim for that 2-3 day post -op visit from you if you give me the affirmative. Remember I am 50 so I might not bounce back as quick as you "youngins", but I am going to try real hard. I told Dr. Rastigar that I will surprise him , as "I am strong like bull." He laughed and shook his head. My mom told him he has his work cut out for him because I am a character. I don't think I am but I quess a mother knows these things. Doug you trully are facing a lot these days and you do it ,yet you continue to be generous and reach out. Thank you. Keep up that great positive, inspiring attitude of yours . I hold positive thoughts and images for your continued healing and improved health as you recover. Talk with you soon . Pam
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