I know many of you have 'electrical' type heart issues and have acquired pacemakers and defibrillators because of that.
Does anyone have sarc caused valve prolapses and leaks and pulmonary hypertension?
I had my first ever echo and it showed a mild mitral valve leak and a prolapsed, moderately regurgitating tricuspid valve, with mild pulmonary hypertension.
Of course, without a previous echo to compare with, I don't know whether this is something I've always had or something new and maybe sarc caused. I suspect newish (as in the past 2 years) as it fits in with a newer angina-like chest pain, especially on exertion and could explain my breathlessness despite normal lung function.
It would be good to have a previous PFT to compare with as my numbers are near 100%, except DLCO which is 86%. Would be good to know if that was nearer 100% to start with and was declining or the 86% is just my stable number.
Anybody know how high pulmonary hypertension is allowed to get before it's considered a problem?
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Heart Valves/Pulmonary Hypertension
Explore topics in this discussion:
High cholesterol Cancer Surgery Neurosarcoidosis Syncope Plavix Angina Stent Sarcoidosis Pulmonary hypertension Stress Heart disease Diabetes Hypertension Pain Diovan Memory Pacemaker Heart attack
16 replies
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- Newest first
- By ozealan
- Posted June 8, 2009 at 10:46 am
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Hi Tawney
So sorry to find that your problems have escalated. I have had diagnosis re lower leg oedema prolapses and valve leaks. I realise these two are probably not comparable, but Vit C 1000mg twice daily has helped until I developed acidosis.
Cheers,
Alan
- By ozealan
- Posted June 8, 2009 at 11:01 am
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Hi again
Just read post on Aortitis and Sarcoidosis concurrence by 'myhealth' (june06,09). It may be a good launching point for you.
cheers
- By lilyrose1953
- Posted June 8, 2009 at 11:22 am
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I just had a loop recorder implanted 5 days ago. Once doc gets info, I will get a pacemaker. I never had any heart problems until 1989 when I had supraventricular tachycardia. Now, I have a lot of problems, including mitral and tricuspid valve leaks and pulmonary hypertension. I get a fast heart rate and other times a slow heart rate. I get short of breath with just walking. I also have chest pain. The main reason for the loop is because I have started passing out due to my heart rhythm. I know my pulmonary hypertension has gone up, but I don't know how high it is. This all started in 2002 when I started getting sick. I have neurosarcoidosis and it has affected pretty much of my body, heart, lungs stomach, legs, arms, and brain. I had a TIA April 7 and I am now in a wheelchair and have lost part of my memory.
The best thing you can do is talk to a doctor that you trust. I ask my doctor everything and he tells me the truth. This disease has so many aspects to it that it is hard to tell if a symptom is from the diease or something else. Ask questions and keep asking until you get the answers you need.
- By JacobeanLily
- Posted June 8, 2009 at 7:22 pm
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I've got a mitral valve prolapse and slight regurgitation. Docs told me its very common, have it checked out via echo every year.
Best, JLily
- By Tawney
- Posted June 8, 2009 at 9:44 pm
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Thanks Ozealan...will go a-searching for that reference. Thanks for the tip!
- By Tawney
- Posted June 8, 2009 at 9:56 pm
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Hi Lilyrose
What you're describing is much like what has crept up on me. I started trying to differentiate between 2 types of chest pain about 2 years ago - the regular pleuritic inflammatory type and the newer angina type. I'm pretty sure that was the start of the heart issues for me. Even while already sick, between bouts of inflammatory pain, I could run without heart type pain and didn't have that awful breathfulness.
As Jacobeanlily says, the mitral regurgitation is common but from what I can gather the tricuspid issues, coupled with pulmonary hypertension, usually are symptoms of a heart or lung issue.
My memory is missing in action too. Don't know whether it's neuro effects of high D1,25, the neurosarc or some other issue but I'm going to have tag myself with my name and address before leaving the house soon! And write down where I'm going! Gave a fantastic display in a recent doctor's appointment where I couldn't finish anything I started saying because I kept forgetting the point of what I was saying. Think that doctor got the point!
- By Great-gram
- Posted July 3, 2009 at 8:53 pm
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Hi! Wow! Right now my cardiologist is following me for mitral regurgitation (leaky mirtral); also have a slight leak in the tricuspid valve. They haven't diagnosed me with pulmonary hypertension at this point. I also have left bundle branch block, supraventricular tachycardia and afib. Heart problems started back in the early 90's after a lesion was seen on my lung, but disappeared before the follow-up x-ray. I was getting routine x-rays because I had br cancer. I would go into tachycardia, and would pass out and come to. The heart dr then, said I had neuro cardio syncope. I think that was the beginning of sarc problems. He also said there was nothing wrong with me, except I wasn't physically fit. Less than a month later I was in cardiac care, diagnosed with sarcoidosis in the lungs and heart problems. Even my new cardiologist has not tested for the sarc - said it wouldn't make any difference in my treatment. She does suspect that sarc is the cause. We haven't discussed the cause of the mitral valve leak - actually the treatment will be the same for that - mitral valve repair or replacement. My husband doesn't have sarc, and has had mitral valve replacement. They followed him for 11 years before they did the surgery. My atria are slightly enlarged, so I don't think I'll be waiting for 11 years. It's just on the border, so now I have even more medication to take. I really don't want my heart to get worse, but sarc meds would be difficult for me to take, so I don't push. I would like to know, so that at least I would have a chance to try. My trust is in the Lord, and I just need to continue to rely on Him to carry me through. Blessings! Do let me know what you find out, You're in my prayers! Great-Gram
- By Tawney
- Posted July 8, 2009 at 6:26 am
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Hi Great-Gram
You have much more going on in the heart department than me. It's very hard to sort out what might be important and what's not. The cardiologist I saw didn't even mention my issues to me, so I gather he thought they were unimportant. I see 2 GPs...one looked taken aback that I wasn't told what was in the report and the other told me I need to see the cardiologist again and have six monthly echos. I mentioned all of this in passing to my neurologist and he said he'd never seen a normal echo and I'm the wrong build to have angina. One wonders should one even bother trying to get an understanding of whether one's issues may be dangerous or not! Good luck with keeping your own issues under control.
- By Great-gram
- Posted July 8, 2009 at 12:08 pm
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Hi! Wow! Your cardiologist should have beed the one to have told you what the results of the echo was, and what the follow-up would be. I have an additional frame of reference in that my husband had mitral regurgitation with no additional heart problems. His heart would sound like a washing machine when I laid my head on his chest. Thank God, he went for a physical on his own. The doctor was very thorough in his explanation. I was there for the initial and early visits. He was followed up with an echo approximately once a year, also had occasional stress tests, and was seen every 6 months. It was 11 years before he needed mitral valve replacement; he had the crack the chest open invasive kind. Also, during the years he was placed on low dose Diovan (his B/P and cholesterol levels were and still are what every one would wish for) and Plavix - to keep clots from forming and to keep the heart from working so hard. He had the invasive surgery because we were limited to the one hospital and it was the only kind that was available. He's 72 and is doing wonderfully well. Since my heart is not as well as his, I doubt that I will be waiting that long for surgery. We changed our insurance, and now I have the possible option of the less invasive surgery if it is possible. As far as having to have a certain build to be suffering from angina - not so. Your neurologist is not a cardiologist, so make a list of all the questions you have, whatever you need clarification on, and take it with you on the next visit. Also ask your GP for a print out of the report. If your visit is not going to be for awhile, phone your cardiologist, leave a message, and ask the questions over the phone. If your cardiologist doesn't become more informative, get a second opinion or else get a new cardiologist. Also, keeping a diary of when and what type symptoms occur, and what you were doing when they occur can be very helpful to your doctor and to you. I just had my blood work on Monday and will see the cardiologist on the17th; right now I'm seeing her every 3 months. I should be seeing the pulmonologist in August, unless before if I have to; and also need to schedule an appt. for the 1st rheum. visit and a complete physical. Like to get some time in to see the dentist, now that I have insurance that he will take. God bless and keep you strong and help you through the maze of doctors. Great-gram
- By Tawney
- Posted July 8, 2009 at 8:19 pm
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Great-Gram, what the cardiologist told me was that I had a healthy heart and was at very low risk for heart disease. He said I had a dropped shoulder and was most likely having muscle spasms causing chest pain because of bad posture.
He didn't mention the valve issues, regurgitation or the very mild pulmonary hypertension. I gather mitral valve leaks are commonplace, with 20% of the adult population having them but not so sure that's true of the tricuspid issues. I'm more concerned about the angina like pain and the mild pulmonary hypertension. While I can understand that healthy slim people would be less prone to heart disease and angina than obese healthy people, I don't think build counts when the person has a systemic condition.
My father is 79 and was always active and the right weight. He had a quadruple bypass 14 years ago and it was only by chance he had a heart test...he had NO symptoms. Like your husband, he's looked after his heart since, walked daily, eaten well but still needed a stent just a few weeks ago. He was also put on Plavix then.
I noticed on my own echo, there was a slight thickening of arteries starting...I guess that just happens with age because I'm a tiny build and eat a reasonably low fat diet.
Please keep us updated on how you get on with your doctors and what treatments they line up for you.
Take care!
- By priscurl
- Posted July 9, 2009 at 6:12 am
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Hi Tawney,
Your father is a prime example of apparently healthy clean living men getting heart disease. I think this business about build and weight issues is nonsense when it comes to heart disease. Yes, the heart works harder in an overweight person, but it does not necessarily follow that all obese people will get heart disease, nor that all healthy people of correct weight won't get it. There has been speculation that heart disease is caused by a bacteria which live on the teeth moving through the circulation to the heart and that antibiotics can help. The bacteria cause a heart blockage by building up as a plaque within the heart and we are more susceptible to this as we get older. My grandfather died of heart problems. He was a skinny little guy who worked on a farm. He possibly had high cholesterol levels because he ate eggs regularly as well as fresh milk.
Pris
- By Tawney
- Posted July 9, 2009 at 8:28 pm
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Hi Pris
As you know, my mother is even thinner than I am and she has high cholesterol and borderline diabetes. She doesn't fit the prototype for either condition.
I must admit that until cholesterol became 'big news' my mother cooked the Irish way...putting fat in the frypan to cook rashers! My father undoubtedly ate a little too much fat in that respect but weight-wise he was fine as he was very active. His diet was reformed after the bypass and he is now only allowed bacon for treats (cooked without added fat!).
- By priscurl
- Posted July 9, 2009 at 10:26 pm
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Hi Tawney,
Right, our grandparents never knew about these things. Heart attacks only became big news in the early 70s. It was everywhere. I was too young at the time to realise that most of this applied to older people. I became heart-fixated, but no longer. I think the medical profession are off the money when it comes to the cause of heart attack. As a nurse, my Mum says a lot of really, really thin people have high cholesterol and often get diabetes, which is, as you say against the stereotype. This usually runs in families and is genetic. Eating healthily may stave off death a few years but it will not prevent the person getting high cholesterol and diabetes, because it is written in the genes. The condition is called familial hypercholesterolemia. Many of these people are on really strict diets but the cholesterol continues to rise in spite of diet and does not alter much if they lapse for a while and eat high fat, for instance, if they go on a cruise. In fact, some of them actually return better figures. I have seen it myself in my work as a lab tech, because these people are monitored closely by their doctors.
Tawney, I have another couple of questions for you. Have you ever been to the USA or Sweden, Norway or Finland? I know you have been to Britain, Ireland and Egypt. Have you ever been bitten by unusual insects or ticks?
Pris
- By janemlr
- Posted July 10, 2009 at 10:47 am
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My husband developed "mild PH" 2 years ago but cardiologist thought it wasn't severe enough to treat altho his breathing got progressively worse. Pulmonologist tried remicade and no improvement. I found a PH specialist at UCDavis who scheduled him for a new right heart cath with their staff cardiologist and his mild PH turned into PH the minute they had him on the treadmill during the cath! He's been on PH medication for 2 months now & his breathing is greatly improved...no more stamina yet but he actually chased our puppy about 50 ft without chest pain & still able to breath! His sarcoid involvement is lungs, heart, neuro, sinus, joints.
- By Tawney
- Posted July 11, 2009 at 10:41 pm
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Hi Pris
The extent of my time in the US is a couple of weeks in Kansas, so I don't think that counts. Something that may count, however, is that just over a year after the car accident, when all the surgeries were complete and I was fed up with the world, I spent a few months in Ireland. Perhaps I put my genetically predisposed Irish self, in the process of recovering from surgery, in a "come and get me" situation for either sarc or non-pulmonary TB.
Here's a story to go with your cholesterol information. My brother-in-law seems to come from a family where the males may have some genetic heart issues. His father and uncle were twins and both died of heart attacks around age 50. My brother-in-law has regular cholesterol and heart checks because of that. Before Christmas, his cholesterol was quite elevated and the doctor gave him a medication to try. He was about to go overseas for a month with his family, so he didn't take the medication. He ate more garbage and drank more alcohol than he would in total the other 11 months of the year whilst away. When he came back, he had his cholesterol checked again and it had gone back down to normal! No medication, just junk food and alcohol!
- By Tawney
- Posted July 11, 2009 at 10:45 pm
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Janemlr, now yours is a story which convinces me that pushing for further testing is a good idea. What appears to be mild pulmonary hypertension at rest might not always be so mild upon exertion, as your husband's experience demonstrated. Glad to hear the medication is starting to help. Hope you both enjoy your new puppy. Pets are great medication in themselves, side effect free, apart from lots of laughs!
Help and information from FSR
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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