Heart echo starting to show problems!!

Hi everyone!
Feeling concerned, anxious and very disappointed ...got my heart echo results back this week .... And it is one number out of range and states also there is mild mitral annular calcinosis now. This was not the case on my echo last year. Feeling like this is the beginning of the end despite all of my efforts to keep this horrible disease at bay. Any feedback or advice would be greatly appreciated. Trying not to loose hope or stop the fight.

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What's one number out of range? If your pressure was one number too high unless you have symptoms of PAH nothing needs to happen right now. Dr. Chung says if over 35 in a sclero patient then you should do a right heart cath. Mine is 39 and I am waiting to hear from Stanford. They are waiting on my last echo results then they were going to run some blood work before ordering a rhc since my pft last spring (when the echo was done) was fine.

I think you need to talk to your doctor about both findings. The information on MAC, on the internet, was not exactly clear. I would imagine they would put you on heart medicine and a heart healthy diet. Do you know the number for the pressure in your heart?

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Just starting with inspire today. No PAH for me but I have had heart problems, the worst being pericardial effusion. The buildup of fluid in the sac surrounding the heart can be critical if left there. I had to have an operation to remove as much of my pericardial sac as possible and the process was made very difficult because of my systemic scleroderma. Healing has been a challenge. This was 10 months ago and I ended up with other problems, but the surgeon was able to get 60% removed. Has anyone else had this experience?

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@Meow...I see Dr. Chung too. Are you in the Bay Area.

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No. North of Sac. It's a long drive.

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I am at 36 ... Doctors here in Canada say no medications needed until 40 ....talked with dr F in Riverside CA and he said 39-40.

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@meow: I'm moving to Sac this summer :)

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Dr F as in UCLA? He is a good one! Dr Chung is too.... The 40 number is for healthy individuals with no symptoms according to Chung. If you have symptoms, you would need a rhc by those rules. PAH is nothing to fool around with. I hope you will have follow up echos and if you get symptoms, please don't wait if you are offered a rhc. You can read up on it at pulmonary hypertension association and pubmed. I do hope someday it can be diagnose easily.

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Dr F in Riverside CA. I believe I am starting to get some symptoms. Yes I too have read 40 is the number but for healthy individuals. I just don't understand why everything is such an effort with the doctors here in Canada with regards to tests, knowledge about sclero and actually believing me and my complaints and listening to info and research I take to them. So very very frustrating.

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I totally understand and same here. I have had symptoms for 4 years and it wasn't until the spring of this year after I took the initiative that I got the echo. 7 months later and still waiting for someone to order a cath. I kept going to doctors saying something is wrong. I can't do certain exercises because I get sick. Now I can't do any exercise and limited walking. The test scares me, but I just want to get on with the rest of my life. I am in the US btw. Hope they start listening to you.

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My echo shows 36mm and I'm not symptommatic so roc is not yet necessary according to my doctor. Also told that we will do a rhc when it gets to about 40.

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That is not the case with ALL doctors in Canada. In Nova Scotia we have a Scleroderma Specialist/Researcher and I was referred to her in a manner of days....not weeks, months or years. I also have a Cardiologist, and 2 Respirologists on my team and they all share information with each other as they are located in the same facility. They are also in touch with my Family Physician as well as my Internist. They all get copies of my reports, including my monthly blood work. I never have to fill anyone in with what the other one said or did.

As soon as I went to my Family Physician with my symptoms, the wheels were in motion and I was diagnosed in a matter of weeks after having multiple tests etc. during that time. So, not all areas are equal in what they have to offer.

I do consider myself to be very fortunate indeed, and am very grateful to be able to access such excellent care.

I have Limited Systemic Scleroderma and Pulmonary Arterial Hypertension.

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My echo estimated right side pressure at 44, but heart cath showed normal pressures. The heart cath is the only way to be sure what the pressure really is. Problem with a heart cath? Dollar$! Mine was about 12 grand up here in Alaska. Not a heart doc, but mild calcinosis of a valve I think would cause a backwards leak on the pump phase in the heart making it less efficient. Do you get breathless climbing stairs, walking?

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