Experienced/Educated Insight Needed

[KimC]

Hi, VR.com ...

First, Happy St. Patrick's Day! Second, please bare with my long, candid post. (No blushing allowed).

I'm feeling increasingly over my head and concerned about health. I don't know if I'm overreacting. Your experienced insights are welcome as I decide what to do, if anything.

To recap, I've been trying different vasodilators to treat vasospasms and mild symptoms of chronic aortic regurgitation. I have a very mildly dilated left ventricle. My right atrium is high but still within normal limits. (I have mildly leaking mitral and tricuspid valves).

I had a recent abnormal thallium stress test while hospitalized for unstable angina. The radiologist suggested that the ischemia or "perfusion defects" were due to breast attenuation, i.e., ruptured breast implants. (Aack! Now you know everything about me).

The hospital recommended a follow-up mammogram which was NORMAL, i.e., no ruptures. I shared this info with my cardio who said not to worry. He also did not recommend a cath or TEE at this time, but said meds were indicated and scheduled a follow-up appt. in six months.

Meanwhile, I'm not debilitated but continue to have all the symptoms of typical, (not atypical) chest pain after stress and prolonged exertion. I recently woke up with profound pressure in my lower sternum, left wrist and upper arm but had been taking Norvasc, so my father suggested that I had an early AM drop in BP related to the drug. I felt the pressure all morning, but at non-sustained intervals of a few minutes. Leading up to this "event," I felt mildly nauseated and extremely fatigued which is not like me.

I called my cardio who said that angina would be rare in someone my age with such low risk factors for CAD and no loss of LV function. (My EF after stress was 77%).

To complicate matters, I was recently misdiagnosed with chronic bronchitis, then after pulmonary function tests was diagnosed with asthma.

My cardio thinks the latter is cardiac-related and that I may have some mild pulmonary hypertension that's causing the chest pain.

My PCP thinks I have early, partially reversible COPD, even though I've never smoked. He's no idiot -- he graduated from the Univ. of Chicago Med School. But my cardio is from the Cleveland Clinic and I tend to trust him more. Sometimes I feel like my PCP is more intent on alleviating my fears. (Although COPD is no cakewalk either).

For those who are familiar with my "story," it took me over a year to be diagnosed with pulmonary/heart disease, and I'm still not confident that all the pieces of the puzzle have been put together which causes anxiety, especially given my symptoms. Initially, I was misdiagnosed with MVP.

At times I wonder if I would be in better shape today had I been diagnosed properly and treated with some kind of drug to reduce the pressure on my heart/lungs during my recent pregnancy. Again, I'm not debilitated, but I'm also not the same person I was before the pregnancy.

Then again, I think about the potential impact drugs would've had on my young son.

More than anything, I feel like the results of my thallium test were inconclusive and concerning. Am I overreacting? My cardio said I have "normal maximal perfusion," which is the most important thing to remember.

Is it? Why do I continue to have angina and SOB upon heavy exertion? Is this acceptable or a sign that I'm not being treated agressively enough?

When do you draw the line?

I started taking Imdur, a long-acting form of nitro which seems to help. I definitely feel better, but would that be an expected outcome for anyone over age 30 taking a drug that improves circulation?

Thanks.

 

[Birky]

COPD

COPD

What is this? I saw this on my diagnosis from the surgeon and really don't know what it is all about. Sounds like you are having some really serious problems and maybe you should get a 2nd opinion. Everyone knows their own body then you should persue it further. I am glad that I did since I feel so much better since the surgery. Good luck and I sure hope you feel better.

 

[Guest]

Hi Kim!

I sent you a PM on your post.
Take Care!

 

[Nancy]

Hi Kim-

Sorry to hear that your problems are still so distressing.

Have you delved into the world of pulmonary hypertension at all? In the mild stages, it can be confused with so many things. It has some peculiar symptoms, some of which you have.

Joe had severe PH (mild-moderate now thanks to Tracleer), and he had it for a long time. It showed up in his echoes for several years and even showed up as severe. And it was still ignored by his doctors, just mentioned in passing, and never treated. He almost died from it.

It is a disease that is not well understood by doctors who do not specialize in it, because it is a rare disease, 1-2 in a million. Many cardiologists, pulmonologists and other doctors never see a case of it. That is why the PH organizations urge those with PH to have a PH specialist following their case, even in the mild stages.

It is a disease that used to have a poor prognosis. There are now several good treatments for it which diminish the symptoms, and prolong life, giving some patients back their normal lifespan.

However, most doctors and indeed most hospitals don't deal with these treatments. It is the specialists who have the knowledge in this case.

The medications which are used for moderate and severe PH are Flolan, Remodulin, Tracleer, and there are people who are using Viagra (in a higher dose and more frequently than is used for ED). It is the vasodilation in Viagra which helps PH patients. There are also specific treatments for mild-moderate PH.

Echocardiography is not a good diagnostic tool for PH. It is only a rough estimate. It is used, but only because it is non-invasive. To get a clear picture of the severity of PH, one needs to have a right heart cath. That is the proper diagnostic tool.

I would strongly urge you to get a true evaluation of the severity of your PH, and see if this is a big player in your overall condition.

It is a disease that will progress without treatment and it affects many other organs, the heart, lungs, liver and kidneys.

I know that you have an excellent cardiologist, but you should still pursue the PH with a PH specialist and rule it in or rule it out.

Here is a link for the PHA (Pulmonary Hypertension Assoc.) websites:

http://www.phassociation.org/Message_Boards/main.asp?board=1
(Dscussion board)

http://www.phassociation.org/
(Main site, where you can find lists of PH specialists and other info.)

 

[Harpoon]

Angina and SOB upon heavy exertion....



Ummm.... Define "heavy" exertion... =)

I mean, I get that, have gotten it all my life. ANYONE gets it if they work hard enough, that's a normal response to pushing your body so hard. What's abnormal is if your symptoms don't go away within a few minutes of resting.

If you're still SOB twenty minutes after running a marathon then there's a problem.


It sounds like you have a lot of complex "behaviors" going on all at once that isn't going to take just one test or diagnosis to sort out. Check the hypertention thing. Is the asthma diagnosis confirmed?


Before I fell of the deepend last year I kinda felt like you did. I had so much going wrong with me and it was very hard to come up with a simple answer.

For the longest time I had edema, but no SOB or difficulty laying on my back or sleeping or loss of appetite, all symptoms of CHF. It was there, but it was "atypical" and that made treatment pretty difficult.

We missed a lot of things, like the kidney failure. No one thought to check on that. No one thought to check on my adrenals or my pituitary glands which were REALLY screwed up when I got to Cleveland Clinic.

I had two seperate kinds of coughing. One was a side-effect ofthe ace inhibitor, the other was CHF. Now I have a different cough, that seems to be sinus related. The CHF is gone, that's been confirmed a few times by different doctors. There's no fluid in my lungs, hasn't been since I left CCF but I'm still coughing, go figure...


Heart conditions like these are SO VERY complex and I know very well where you're at right now. It's overwhelming. There's so much to understand and consider, so much that you have to try and handle all at once...

The misdiagnosis stuff doesn't help either, like you're finally on track with something that can be treated, then it turns out to be wrong.

Takes a lot of patience, and some humor too.


Kinda funny they thought the implants might be part of the problem.... An easy scapegoat for medical problems. =)


Hang in there.

 

[medtronic of borg]

Smile

Smile

I don't believe your physical condtion has much to do with your anxiety. A. is caused by an unknown factor. Fear is when you know what is upsetting you. You may want to address old issues that may have a contention with the current one. For example, when you were a child did either of your parents have heart troubles? How did they seem to handle it via your eyes at that time? How did it make you feel. If not your parents any family member that you were close with as a child ever get sick? Did you worry ?

Another good ? to ask yourself is, would I say that the house I grew up in was full of anxiety? Were my parents type A personnalities?

Reflection was very usefull for me perhaps you too.

Med

 

[bethanne]

Hi Kim,
sorry you are going through all of this.... I am curious if during the time you were on the calcium channel blockers if they helped your symptoms of angina & sob.

It has taken almost two weeks to acclimate to my calcium channel blocker about 7-10 days into it I thought I was going to have to stop, because i was feeling very daffy and strange emotionally... the reason i ask is my understanding of how they work is they block the calcium ions from crossing the membrane resulting in a more relaxed heart muscle that is more oxyegenated. I know you posted that you were taking them for a short time and I forget why you stopped, but if they were helping the chest pains/spasms I would think that would tell you they were helping your heart that needed help.... They are helping me to the level of not experiencing any chest pains/ spasms at night or at least I am sleeping through them

I have a sense that your system is sensitive to medication and with the many changes it may take some time to settle down...

Being fearful about symptoms that you do not have a clear understanding of the source is not unreasonable.

I would like to reitterate what looks to be good advice from posts above:

1. Back to basics: Lab work up to look at kidney function, electolytes, thryoid function, etc. (Has your pcp or cardio done this for you lately)

2. Check with specialist regarding PH

3. I have to agree with med on some level. Although anxiety is not the cause of my symptoms, etc. Just knowing that I am facing a AVR, etc. has stirred up issues as well. journaling is a great way to make a connection to emotions that are running in the background so to speak.

3. have you invested in a polar heart monitor? I have found this a great tool to watch my heart rate related to physical activity. I have found that even with a short walk my heart rate does not return to my resting for up to 10 hrs afterwards... all this just gives me the ability to give my cardio concrete info regarding symptoms, etc.

I am also curious about your aortic regurgitation... I am fairly new to this but I thought this was caused by a aortic valve issue which you did not mention?

Thanks for letting me share. ...

I have much confidence you will get to the bottom of this soon.

 

[Nancy]

In addition to the sites I already mentioned, this one has a very concise explanation of PH.

http://www.chfpatients.com/ph.htm

 

[KimC]

Thanks for the GREAT info, Nancy! I hope you're wrong but have wondered about PH ever since I tried the calcium channel blocker, Norvasc and could breathe normally. Unfortunately, the drug eventually caused hypotension.

I'm meeting w/ my pulmo on Thurs. Do you have any suggested questions?

Harpoon, when I start to feel sorry for myself, I conjure up images from my recent hospital stay: a bobbing 100-year-old man holding the printout of a severely abnormal EKG; an emaciated drug addict who was in renal failure, throwing up allover herself; and an alcoholic with cardiomyopathy. The latter case blew away the hospital staff ? he was a transplant candidate who arrived for his thallium stress test inebriated.

Those images help me feel healthy.

As far as the SOB goes, it?s hard to describe and ranges from a mild "full" feeling that takes away my appetite to an unprecedented shut down of my airways which goes away quickly if I rest for a few minutes. This will sound weird, but I can't eat standing because I lose my appetite. I have either asthma or one of her lovely, lethal cousins. This much was confirmed via PFT?s last January.

I don?t know if early COPD or PH would show up on non-invasive tests but I plan to ask my pulmo on Thurs., as well as mention my experience with the vasodilator.

As far as the angina goes, it?s NOT normal to have recurring chest pain although many people live with it. From what you said, it sounds like you dealt with it for a long time, God bless you! I hope you?re feeling relief post-surgery. (Even if you aren?t, tell me that you are).

Thanks, Bethanne ? I appreciate your bullet points! I had thyroiditis postpartum and am due back for a recheck this month.

Med, I have no doubt that I am who I am because of many things, some unconscious, some not. I?m doing some journaling, exercising and just BEING. In fact, I?m getting into my Yoga pose now. Here we go ? deep breath IN through the nose ?

Marcia, COPD = Chronic Obstructive Pulmonary Disease. I would ask your cardio why this term was on your test results. It may be an acronym for something else, (if you?re not in the Colorado Police Department).

Good night y'all!

 

[Harpoon]

I was in a hospital ward full of very sick little children, the oldest was probably no more than 8.

With the one exception of a guy about my age who spent a night after having a cath, I was the oldest patient on the floor by 20 years or more.


Somehow I felt more like I belonged there more than those kids did. Was kind of weird. A few times classmates of one of the kids on the floor came cruising through for a visit of one patient or another. These were kids who had a life, who had friends and families and teachers and were missing all of it because of a heart condition they were born with. They just didn't deserve to be there...


Just some strange, mixed feelings about that place. There were times when I'd be moved off the floor for various tests. I saw a lot of patients that probably had some form of cancer and were undergowing chemotherapy, lots of people with severe hair loss. Almost everyone I saw off the floor was elderly. A lot of very sick people.

I think about that once in a while, about all the crap I went through and all the stuff I saw. I saw a mother of a child who had just received a new heart after a nearly year long wait, she was less than three years old at the time, standing on the curb outside the children's hospital lobby when I left the hospital. She was smoking a cigarette.

That poor kid got a brand new heart, spent most of her life inside a hospital and now she gets to go home, to a house of smokers....


I think about that and then kick myself for not putting more effort into eatin healthier. I'm doing OK, but I have room for improvement. Same with exercise. I was doing kung-fu but broke it off in part because of some kind of injury in my back and in part because my work schedule has changed. I have to get back into it some how. Plus I learned I can go back to rehab and use their exercise machines, "off monitors" for a very small per visit fee. They'll check my BP and pulse as I come in and I can check my weight, but they won't hook me up to a heart monitor for the exercise which I don't need at this point. I can use any of the equipment, though their regular patients have first dibs.

I guess we all could be "doing better" for ourselves. What's more important though is that you recognize it, that you're not that idiot with cardiomyopathy who walked in for a stress test after tossing back a few drinks for the occassion....

 

[Nancy]

Hi Kim-

After having spent many hours reading the posts on the PHA website, it has become abundantly clear that almost UNIVERSALLY, everyone there has either been misdiagnosed or have had their PH ignored. And this isn't usually from some mailciousness on the part of their doctors. It is because of the rarity of the disease and the fact that most doctors have never known anyone who has had it and don't know how to treat it. It mimics many other heart and lung problems. Those folks have had to be enormously proactive to get a diagnosis for themselves and to get treatment.

Many of them have been told it was all in their heads, that they had asthma, that they were just lazy (due to the fatigue and weakness they had), that they had anxiety attacks, etc. Some, in the later stages of PH, have just been told to go home and get their affairs in order, since there was no help for them. That is just not true.

Ph involves things like CHF and right-sided heart failure, angina, fatigue, muscle weakness. Other symptoms include dyspnea on exertion, syncope, hemoptysis, Raynaud's syndrome. And many people also note that they have jugular vein distention and their doctors might notice that they have, prominent right ventricular impulse, accentuated pulmonic valve component (P2), Right-sided third heart sound (S3), tricuspid insufficiency murmur, hepatomegaly, peripheral edema.

It is a disease of exclusion and requires a long and very meticulous workup by a specialist.

So my advice to you is to insist on getting to the bottom of your problems and having this kind of workup from a PH specialist. Not every cardiologist or pulmonologist is a PH "specialist". If it turns out that you are more and more convinced that you are suffering from PH, you should get in to see a specialist. They see PH patients exclusively, know how to diagnose the disease, and know all of the cutting edge treatments for it. It used to be considered a fatal disease. That is not true any more. With the most recent treatments available, and agressive and early intervention, most people can have a very good outcome.

Getting treatment early is important. So if that's where the path is leading, get a referral to the best PH specialist you can find. They are usually booked up for several months and many of them require that you send all of your records ahead for their initial review prior to setting an appointment.

 

[Abbanabba]

Hi Kim,

It's so frustrating when you're not feeling well and no-one can give you definitive answers. I'm kinda going through the same things myself at the moment. You know when you're not feeling right - don't stop until you can find the answers you're looking for.

Keep us posted on how you go.

Best wishes
Anna :