Now I have heart failure and other issues... aaaahh!!

[KarenK]

I made my original post in Jan. about my first visit with a cardiologist who was sending me for an immediate heart cath. After the Cath, the dr. was too busy and wouldn’t see me for months. His office refused to provide a copy of the test results or any information what so ever! His nurse had some insane excuses such as, ”We don’t have the results, they are the property of the hospital and the dr. doesn’t need them, he has an incredible memory.” It took me weeks and repeated calls to get the results from the hospital. (Never had to buy my test results before.) I seriously considered walking out of the hospital and not having the Heart Cath as the hospital walls were so dirty and your feet literally stuck to the floor! But I thought I really needed this test.

When I finally got the test results, they were so poorly written and contradictory. No wonder he was the only cardiologist available in NW Arkansas. It had me stressing out about not having a local cardiologist. A Cardiologist’s office that didn’t anticipate taking new patients for quite some time called out of the blue. After that train wreck, I am extremely impressed with this new heart clinic and my new doctors! I met with the surgeon and a couple cardiologist two days ago and heard the results of their testing and I’m trying to sort it all out.

Good news, the aortic stenosis moderate, which is not as bad as originally thought! Bad news, “diastolic heart failure”. With my EF over 75% it’s actually Hypertrophic Cardiomyopathy. How do these two conditions work together and change the picture???

The surgeon then mentioned blood thinners! I was thinking a bovine valve in the future and I wouldn’t need blood thinners. On the advice of the Mayo Clinic, I’ve been avoiding anything that thins the blood since my surgery for a brain aneurysm. So now I’ve got a referral to the Neuroscience Institute for a cerebral angiogram which is a major procedure that’s not commonly done like a heart angiogram is… and carries greater, more serious risks… and scares me. They haven’t even had anyone in Arkansas that does this procedure until now… how experienced can he be? I wouldn’t expect an honest answer if I ask.

Then they found another problem. I don’t remember what she called it but its a thickening of the esophagus, and it accounts for some of my symptoms. And its another referral to a GI specialist.

Then my head started swimming when he started talking about surgery. I’m not sure if he was talking about surgery for the valve or the cardiomyopathy.

I started taking my blood pressure as they want me to keep a detailed record and start taking Metoprolol 50mg. Now I’m afraid to start as in the last couple days when exercising my heart rate has suddenly jumped from 120 to 253 and at times my blood pressure dropping very low. Maybe just stress?

There is one other person that I know of on this forum that has a high EF like mine. I don’t recall who and couldn’t locate her. Anyone else have this?

 

[pellicle]

Karen

the levels of poor communication are as worrying as the hospital cleanliness

As to the metoprolol it will also act to keep your HR down, so of all the things to be worried about I wouldn't put that in the list. I'd be taking it. Heck I do take it to keep my HR from sitting on 150

Best Wishes

 

[Paleowoman]

There is one other person that I know of on this forum that has a high EF like mine. I don’t recall who and couldn’t locate her. Anyone else have this?

Hi Karen - I used to have high EF of 75%, I just looked back at some echocardiograms and found one EF at 79% ! It was called "hyperdynamic left ventricular function". No one ever explained exactly what that meant but at the same time alway said it was okay. No one ever called it Hypertrophic Cardiomyopathy. I didn't have heart failure. Following aortic valve replacement my EF still stayed around 75% but over the years it has lowered and is now around 65%. My blood pressure has always been in the normal range. I would guess you need more information from your cardiologist.

 

[carolinemc]

I made my original post in Jan. about my first visit with a cardiologist who was sending me for an immediate heart cath. After the Cath, the dr. was too busy and wouldn’t see me for months. His office refused to provide a copy of the test results or any information what so ever! His nurse had some insane excuses such as, ”We don’t have the results, they are the property of the hospital and the dr. doesn’t need them, he has an incredible memory.” It took me weeks and repeated calls to get the results from the hospital. (Never had to buy my test results before.) I seriously considered walking out of the hospital and not having the Heart Cath as the hospital walls were so dirty and your feet literally stuck to the floor! But I thought I really needed this test.

When I finally got the test results, they were so poorly written and contradictory. No wonder he was the only cardiologist available in NW Arkansas. It had me stressing out about not having a local cardiologist. A Cardiologist’s office that didn’t anticipate taking new patients for quite some time called out of the blue. After that train wreck, I am extremely impressed with this new heart clinic and my new doctors! I met with the surgeon and a couple cardiologist two days ago and heard the results of their testing and I’m trying to sort it all out.

Good news, the aortic stenosis moderate, which is not as bad as originally thought! Bad news, “diastolic heart failure”. With my EF over 75% it’s actually Hypertrophic Cardiomyopathy. How do these two conditions work together and change the picture???

The surgeon then mentioned blood thinners! I was thinking a bovine valve in the future and I wouldn’t need blood thinners. On the advice of the Mayo Clinic, I’ve been avoiding anything that thins the blood since my surgery for a brain aneurysm. So now I’ve got a referral to the Neuroscience Institute for a cerebral angiogram which is a major procedure that’s not commonly done like a heart angiogram is… and carries greater, more serious risks… and scares me. They haven’t even had anyone in Arkansas that does this procedure until now… how experienced can he be? I wouldn’t expect an honest answer if I ask.

Then they found another problem. I don’t remember what she called it but its a thickening of the esophagus, and it accounts for some of my symptoms. And its another referral to a GI specialist.

Then my head started swimming when he started talking about surgery. I’m not sure if he was talking about surgery for the valve or the cardiomyopathy.

I started taking my blood pressure as they want me to keep a detailed record and start taking Metoprolol 50mg. Now I’m afraid to start as in the last couple days when exercising my heart rate has suddenly jumped from 120 to 253 and at times my blood pressure dropping very low. Maybe just stress?

There is one other person that I know of on this forum that has a high EF like mine. I don’t recall who and couldn’t locate her. Anyone else have this?

I developed HF while waiting to have my Aortic Valve replaced with a St. Jude's leaflet valve, which requires us to be on blood thinners.
On your BP, it will go up as you stress about everything. You need to learn the relaxing techniques, such as slow breathing and relax, which takes practice. So sorry about your other health issues. Do not fret over the heart rate. It will accelerate as you stress also. Learn to mediate so that you can relax as much as you can. Another thing if you are a coffee and soda drinker, go decaf, for it will be better on your heart. And good you are careful about aspirin and other blood thinning medications over the counter. You should wait till the doctor give you an okay, if needed for pain or fever.
So sorry also you had a heck of a time with the cardio, for I have heard there are issues with medical care down there, my brother lives in Jonesboro. He does not take good care of himself anyway. Sad to say.
I will pray for you to get better care during this time, it is not easy to have other issues and looking towards OHS(Open Heart Surgery). Good luck that it gets better. And Welcome.

 

[vitdoc]

I made my original post in Jan. about my first visit with a cardiologist who was sending me for an immediate heart cath. After the Cath, the dr. was too busy and wouldn’t see me for months. His office refused to provide a copy of the test results or any information what so ever! His nurse had some insane excuses such as, ”We don’t have the results, they are the property of the hospital and the dr. doesn’t need them, he has an incredible memory.” It took me weeks and repeated calls to get the results from the hospital. (Never had to buy my test results before.) I seriously considered walking out of the hospital and not having the Heart Cath as the hospital walls were so dirty and your feet literally stuck to the floor! But I thought I really needed this test.

When I finally got the test results, they were so poorly written and contradictory. No wonder he was the only cardiologist available in NW Arkansas. It had me stressing out about not having a local cardiologist. A Cardiologist’s office that didn’t anticipate taking new patients for quite some time called out of the blue. After that train wreck, I am extremely impressed with this new heart clinic and my new doctors! I met with the surgeon and a couple cardiologist two days ago and heard the results of their testing and I’m trying to sort it all out.

Good news, the aortic stenosis moderate, which is not as bad as originally thought! Bad news, “diastolic heart failure”. With my EF over 75% it’s actually Hypertrophic Cardiomyopathy. How do these two conditions work together and change the picture???

The surgeon then mentioned blood thinners! I was thinking a bovine valve in the future and I wouldn’t need blood thinners. On the advice of the Mayo Clinic, I’ve been avoiding anything that thins the blood since my surgery for a brain aneurysm. So now I’ve got a referral to the Neuroscience Institute for a cerebral angiogram which is a major procedure that’s not commonly done like a heart angiogram is… and carries greater, more serious risks… and scares me. They haven’t even had anyone in Arkansas that does this procedure until now… how experienced can he be? I wouldn’t expect an honest answer if I ask.

Then they found another problem. I don’t remember what she called it but its a thickening of the esophagus, and it accounts for some of my symptoms. And its another referral to a GI specialist.

Then my head started swimming when he started talking about surgery. I’m not sure if he was talking about surgery for the valve or the cardiomyopathy.

I started taking my blood pressure as they want me to keep a detailed record and start taking Metoprolol 50mg. Now I’m afraid to start as in the last couple days when exercising my heart rate has suddenly jumped from 120 to 253 and at times my blood pressure dropping very low. Maybe just stress?

There is one other person that I know of on this forum that has a high EF like mine. I don’t recall who and couldn’t locate her. Anyone else have this?

Sounds like medical care in your neck of the woods may be a bit sketchy. It may behoove you to get evaluated somewhere else. Check into the Mayo Clinic or something similar to get your problems properly sorted out.

 

[Croooser]

Sooner rather than later.

 

[KarenK]

Hi Karen - I used to have high EF of 75%, I just looked back at some echocardiograms and found one EF at 79% ! It was called "hyperdynamic left ventricular function". No one ever explained exactly what that meant but at the same time alway said it was okay. No one ever called it Hypertrophic Cardiomyopathy. I didn't have heart failure. Following aortic valve replacement my EF still stayed around 75% but over the years it has lowered and is now around 65%. My blood pressure has always been in the normal range. I would guess you need more information from your cardiologist.

Thank you! Your response is most helpful to hear. The dr. described it as the muscle was overworking, hence enlarging and stiffening, and compared it to a weight lifter's muscles. He said the ventricle wasn't able to relax, fill fully and pump an adequate amount of blood. Your situation tells me it's not necessarily a progressive thing and improvements are possible to a degree! Knowing this, perhaps this is the reason why the your drs. never called it out? Originally I was told my AS was moderate-severe. This dr. is saying its at a moderate level. Were you at a severe level when you had the valve replaced? I'm kinda wondering if waiting will negatively affect this ventricle situation. From what I read, "hyperdynamic left ventricular" is often used in place of "heart failure" or in situations of like infections impacting the heart. I definitely need more info. from my cardiologist. They have such limited time to explain things and Googling often leads to wrongful conclusions.

 

[KarenK]

Sounds like medical care in your neck of the woods may be a bit sketchy. It may behoove you to get evaluated somewhere else. Check into the Mayo Clinic or something similar to get your problems properly sorted out.

Wow, you have been through the mill. That's quite a history you have. My father had 3rd degree heart block with no residual beat. I've wondered if it could be related in any way but I guess I'll never know. I've been thinking about being evaluated elsewhere. I have a history with the Mayo Clinic but I'm now on Medicare and when I checked they take Medicare from only 3 states. So I guess it'll be the Cleveland Clinic and I suppose I do need a relationship with a local cardiologist.

 

[Paleowoman]

Thank you! Your response is most helpful to hear. The dr. described it as the muscle was overworking, hence enlarging and stiffening, and compared it to a weight lifter's muscles. .........Were you at a severe level when you had the valve replaced?

Hi Karen - I was doing heavy weight lifting at the time and the echo technician asked me if I did weight lifting - weight lifter's heart muscles can get a bit larger but it's not necessarily a problem: read this Enlarged Heart and Athletes: Is It Serious? I had "severe stenosis" coming up to valve replacement so my left ventricle was presumably working very hard to pump blood through the stenotic bicuspid valve but usually you'll read here that many forum members get too low an EF when their aortic valve becomes severely stenotic ! Despite having "severe stenosis" though I had absolutely no symptoms and I was at my fittest - and strongest - ever ! (I never got back to that level of fitness following aortic valve replacement)

 

[vitdoc]

Does Mayo Clinic accept Medicare?​

• Yes, Mayo Clinic is a participating Medicare facility in Arizona, in Florida, in Rochester, Minn. and at all Mayo Clinic Health System locations.

From the Mayo website. I think they are saying that they take Medicare at their three main campuses but not necessarily just from the residents of those states. Give them a call to make sure.

 

[jeffp]

What @vitdoc said. Medicare is a federal program. If you’re a participating provider, it’s for all states; you can’t pick and choose. Now Medicaid on the other hand….

 

[KarenK]

Does Mayo Clinic accept Medicare?​

• Yes, Mayo Clinic is a participating Medicare facility in Arizona, in Florida, in Rochester, Minn. and at all Mayo Clinic Health System locations.

From the Mayo website. I think they are saying that they take Medicare at their three main campuses but not necessarily just from the residents of those states. Give them a call to make sure.

You are correct. I think I was confusing it with Medicaid. I haven't given medical travel any serious consideration at this point. Just thinking about it I can feel my blood pressure rise. It brings back a very stressful time in my life, a divorce, my only child having a massive brain tumor, and me with a leaking brain aneurysm that could rupture at any moment. We were both recovering from brain surgery at the same time. When it rains... Neither of our surgeries went smoothly, we both had issues to deal with and very lengthy recoveries.

 

[pellicle]

When it rains...

hugs mate ... its all I can say

 

[KarenK]

Hi Karen - I was doing heavy weight lifting at the time and the echo technician asked me if I did weight lifting - weight lifter's heart muscles can get a bit larger but it's not necessarily a problem: read this Enlarged Heart and Athletes: Is It Serious? I had "severe stenosis" coming up to valve replacement so my left ventricle was presumably working very hard to pump blood through the stenotic bicuspid valve but usually you'll read here that many forum members get too low an EF when their aortic valve becomes severely stenotic ! Despite having "severe stenosis" though I had absolutely no symptoms and I was at my fittest - and strongest - ever ! (I never got back to that level of fitness following aortic valve replacement)

Hi, That article was a very interesting read. I'm by no means an athlete. An elevated EF can mean such different things. The genetic component jumped out at me. Some in my immediate family had heart issues but they're gone now so I'll never know if it's related. I'll have to see if my son should be tested.

 

[Paleowoman]

I would never have called myself an athlete either, I was 60 at the time and had started weight lifting a few years earlier to help with osteoporosis, so it was amazing to me that the echo technician asked me if I did weight lifting, but it must have showed in the echo because it's not the kind of question asked of a 60 year old woman ! I did do what's called 'high intensity' super slow weight lifting.

 

[Chuck C]

When my aortic stenosis was first discovered, I had an ejection fraction of about 73%. Over the next 18 months I would get 5 echos and each time it was in the range of 71% to 74%. They diagnosed it as hyperdynamic. I also had a mildly enlarged heart, with LV wall thickness just above the range for normal. I was initially diagnosed as LVH, left ventricular hypertrophy. I was somewhat of an extreme athlete at the time, on my gyms MMA team and doing intense boxing and grappling. I had done a lot of reading about athletes heart and how that can make the heart enlarged. But, I also had moderate aortic stenosis, which can make the heart enlarged as well. Also, high blood pressure can cause it, and mine was borderline high. I suspected that all 3 factors might be working together to cause the enlargement and my cardiologist said this was very much possible.

I decided that I was going to try to see if making some changes would make a difference. I stopped the intense workouts, and just did brisk walking for exercise for several months. I also started losing weight- dropped from 190 down to 160 over the course of about 6 months. My blood pressure dropped from borderline high to ideal, at about 115/75. I did succeed in reversing my LVH, and the echos over the next 12 months showed a gradual return to the normal range, although it was the high end of normal- still normal.

One thing that is very different about my situation and yours is your diagnosis with diastolic heart failure and also your diagnosis of cardiomyopathy. Both of these are very serious and could very well indicate you for surgery soon. From what you describe, it sounds like you are in one of those cardiology deserts, unable to find a good local cardiologist and have been treated as if they don't care much about your situation. You are on the right track to seek another opinion. You have mentioned Mayo Clinic and Cleveland Clinic, both good choices. I want to stress the importance of getting this consult as soon as possible. Cleveland Clinic is very popular, being ranked #1 in the nation, but the downside of that is that it can take awhile to be seen or to get surgery. You really want to get your consult within weeks, not months, so if one of the clinics you mentioned can't fit you in soon, I would keep trying among top clinics until you find one that can see you soon. In California, I had my surgery at UCLA and was also impressed with Cedar Sinai, in terms of both clinics ability to schedule timely consults and surgery when needed. There are many other top clinics, but you really want to get seen by one of the top and not delay. Heart failure is a very serious thing and at some point the damage will be irreversible if not taken care of in time.

Wishing you the best of luck and please keep us posted.

 

[KarenK]

I would never have called myself an athlete either, I was 60 at the time and had started weight lifting a few years earlier to help with osteoporosis, so it was amazing to me that the echo technician asked me if I did weight lifting, but it must have showed in the echo because it's not the kind of question asked of a 60 year old woman ! I did do what's called 'high intensity' super slow weight lifting.

Are you currently working out with weights? I'm still trying to figure out what I should be doing in the way of exercise. In the mean time I have been limiting it to moderate intensity aerobic exercise. However I'm concerned with these sudden jumps in pulse rates from 120 to as much as 253 though it doesn't last long. It's all confusing and I'm learning new things and about new specialist every day. I have an appointment next week with an Interventional Neuroradiologist. Never heard of this specialist, even with my extensive research and previous aneurysm surgery.

 

[Paleowoman]

Are you currently working out with weights? I'm still trying to figure out what I should be doing in the way of exercise. In the mean time I have been limiting it to moderate intensity aerobic exercise. However I'm concerned with these sudden jumps in pulse rates from 120 to as much as 253 though it doesn't last long. It's all confusing and I'm learning new things and about new specialist every day. I have an appointment next week with an Interventional Neuroradiologist. Never heard of this specialist, even with my extensive research and previous aneurysm surgery.

I only do a bit of weight lifting now as my left sternoclavicular joint was, to a degree, ‘damaged’ during surgery and, although I recovered after many months I was finding that I was getting a lot of pain from that joint and my sternum and referred pain in my left shoulder. I had an MRI three years post surgery which revealed the problem. The only weight lifting I do now are biceps curls and chest press, but I do a lot of walking, around 5 or 6 miles a day. I don’t have a problem with my pulse rate like you do, I never have. I see several specialists for different things - they all cc their reports to each other as well as to my GP and me - I think it's important that each specialist knows what’s going on.

 

[KarenK]

When my aortic stenosis was first discovered, I had an ejection fraction of about 73%. Over the next 18 months I would get 5 echos and each time it was in the range of 71% to 74%. They diagnosed it as hyperdynamic. I also had a mildly enlarged heart, with LV wall thickness just above the range for normal. I was initially diagnosed as LVH, left ventricular hypertrophy. I was somewhat of an extreme athlete at the time, on my gyms MMA team and doing intense boxing and grappling. I had done a lot of reading about athletes heart and how that can make the heart enlarged. But, I also had moderate aortic stenosis, which can make the heart enlarged as well. Also, high blood pressure can cause it, and mine was borderline high. I suspected that all 3 factors might be working together to cause the enlargement and my cardiologist said this was very much possible.

I decided that I was going to try to see if making some changes would make a difference. I stopped the intense workouts, and just did brisk walking for exercise for several months. I also started losing weight- dropped from 190 down to 160 over the course of about 6 months. My blood pressure dropped from borderline high to ideal, at about 115/75. I did succeed in reversing my LVH, and the echos over the next 12 months showed a gradual return to the normal range, although it was the high end of normal- still normal.

One thing that is very different about my situation and yours is your diagnosis with diastolic heart failure and also your diagnosis of cardiomyopathy. Both of these are very serious and could very well indicate you for surgery soon. From what you describe, it sounds like you are in one of those cardiology deserts, unable to find a good local cardiologist and have been treated as if they don't care much about your situation. You are on the right track to seek another opinion. You have mentioned Mayo Clinic and Cleveland Clinic, both good choices. I want to stress the importance of getting this consult as soon as possible. Cleveland Clinic is very popular, being ranked #1 in the nation, but the downside of that is that it can take awhile to be seen or to get surgery. You really want to get your consult within weeks, not months, so if one of the clinics you mentioned can't fit you in soon, I would keep trying among top clinics until you find one that can see you soon. In California, I had my surgery at UCLA and was also impressed with Cedar Sinai, in terms of both clinics ability to schedule timely consults and surgery when needed. There are many other top clinics, but you really want to get seen by one of the top and not delay. Heart failure is a very serious thing and at some point the damage will be irreversible if not taken care of in time.

Wishing you the best of luck and please keep us posted.

Hi Chuck,
Your response is greatly appreciated! And perhaps a wake up call for me as I've been in denial somewhat and have been resistant to fully dealing with this. I'm not overweight but I haven't been physically active enough which will certainly change now. Blood pressure and cholesterol have always been an issue with everyone in my family. My blood pressure had been borderline high and I never gave it much thought. My Dr. did my BP checks done every 3 months for years and said it was fine. Since my new Cardiologist asked me to keep a log, I'm seeing my BP isn't borderline anymore but has dropped to approx. 108/68 and often borderline low 92/62. This is puzzling, it seems the higher blood pressure would be the norm in this situation.

As a former Californian, I know you do have some great resources there. You are right, I need get moving on this. With a leaking brain aneurysm, that could rupture at anytime, I had to wait a month before I could get the surgery anywhere! It was the Mayo Clinic that had the earliest surgery date for me. Something that critical you wouldn't think it would take that long. I really was blessed to come out relatively unscathed. So, no more delaying on this!

 

[KarenK]

I only do a bit of weight lifting now as my left sternoclavicular joint was, to a degree, ‘damaged’ during surgery and, although I recovered after many months I was finding that I was getting a lot of pain from that joint and my sternum and referred pain in my left shoulder. I had an MRI three years post surgery which revealed the problem. The only weight lifting I do now are biceps curls and chest press, but I do a lot of walking, around 5 or 6 miles a day. I don’t have a problem with my pulse rate like you do, I never have. I see several specialists for different things - they all cc their reports to each other as well as to my GP and me - I think it's important that each specialist knows what’s going on.