That Time Again

[pearjas]

It's that time of the year again (summer). I was diagnosed with Ehlers Danlos in 2012 but it didn't really matter that much until the summer of 2015. I had been the person to bring the issues up to my doctor, which was basically only hypermobility, which led to a diagnosis with two different primary care doctors in a short period of time. I can say that I'm one of the lucky ones though in that you'd never really guess I had Ehlers Danlos.

During the summer of 2015, I was going to the gym regularly, which I still do but I was doing a lot more weightlifting than before. I had big plans. I wanted to try Crossfit in 2016. I did get an echo in 2012 per request, which showed all to be normal though I never spoke with a doctor. In looking back at it, it appears my aortic root was on the high end of normal. Moving forward to 2015, I finally asked my doctor enough times for a follow-up echo that he agreed if I agreed to see a psychiatrist for my "anxiety".

The test would later show a dilation of my aortic root and change my life forever. An initial echo, then a CT scan were done to conclude my aortic root measured 3.9. The following year, it was 4.0. The following year was 3.9 again. I can't begin to describe how happy I was after that, knowing that perhaps I might not need open heart surgery one day. I'm 36 years old today.

Last year, I had a bit of a setback. It measured 4.1. I can't say I was devastated (a simple check of my posts you can clearly see at one time I was) but it was a huge setback. It's that time of the year again. August 29 I was approved for a CT scan.

 

[Duffey]

Good luck and best wishes.

 

[Protimenow]

Good Luck. Did you make your doctor see a psychiatrist instead of you? Resisting a patient's insistence on this test may be a sign that YOUR DOCTOR had a problem -- not you.

 

[pearjas]

Thank you. Actually, even though it was proven that I had a reason to be concerned, he held to his word... I had to see a psychiatrist afterwards. I will say he eventually left where I was going, and then I did thereafter...so I have a new, better doctor now (whew).

 

[Protimenow]

I'm sure that's a relief.

Did you find out which veterinary practice he went to?

 

[Duffey]

First off, happy birthday! Secondly, I went back and read many of your earlier threads after seeing that you are in Missouri and have had to tolerate a complete ***** for a doctor (I’m also in Missouri so I know how that can go. We grow ‘em big!) Finally, I understand the fear about your aorta dilation, because our grandson was born with an enlarged aorta and has been followed by a pediatric cardiologist based in STL since he was six months old. He is now 10. The anticipation leading up to his yearly check up is stressful, especially this last one because he underwent a huge growth spurt and we were afraid the added size and weight gain would be reflected by corresponding aortic growth. It had enlarged, but they look at it in relation to his overall size and so it is fine. I think you mentioned in an old post some concern you had about age increasing the size of your aorta? The pediatric cardiologist says for now our grandson can engage in whatever activities he wants to, both aerobic and anaerobic, but there might be limitations put upon him once he hits his late teens. I assume they mean anaerobic. From what I’ve read in replies to your earlier posts, controlling one’s blood pressure is key in preventing aorta enlargement. Hopefully you’ve heeded the advice given, and your upcoming CT will show nothing remarkable in the aorta’s growth.

 

[mecretired]

I also live in Missouri. I’ve had my share of “bad” doctors. I have decided that if my doctor doesn’t have time for me or won’t listen to me, then I will find s new doctor. I currently have a great group of doctors. My surgeon, cardiologist, orthopedist and preferred hospital are in Columbia. I have a great pcp closer to where I live. If one of my doctors told me I needed to see a psychiatrist, I would start looking for another doctor. But you do what you have to do.

 

[pearjas]

First off, happy birthday! Secondly, I went back and read many of your earlier threads after seeing that you are in Missouri and have had to tolerate a complete ***** for a doctor (I’m also in Missouri so I know how that can go. We grow ‘em big!) Finally, I understand the fear about your aorta dilation, because our grandson was born with an enlarged aorta and has been followed by a pediatric cardiologist based in STL since he was six months old. He is now 10. The anticipation leading up to his yearly check up is stressful, especially this last one because he underwent a huge growth spurt and we were afraid the added size and weight gain would be reflected by corresponding aortic growth. It had enlarged, but they look at it in relation to his overall size and so it is fine. I think you mentioned in an old post some concern you had about age increasing the size of your aorta? The pediatric cardiologist says for now our grandson can engage in whatever activities he wants to, both aerobic and anaerobic, but there might be limitations put upon him once he hits his late teens. I assume they mean anaerobic. From what I’ve read in replies to your earlier posts, controlling one’s blood pressure is key in preventing aorta enlargement. Hopefully you’ve heeded the advice given, and your upcoming CT will show nothing remarkable in the aorta’s growth.

Thank you for the responses. Yes, thankfully he is no longer my doctor (that recommended the psychiatrist). I feel I have a pretty good group of doctors right now. I have been going to KU Cardiology for a couple of years though I'll be getting the CT scan at St Luke's, which I don't really have any experience with. My primary doctor today is much better than the one I had previously, obviously.

I have definitely taken all the advice I've been given about blood pressure. Hoping for a positive result, like the one I had a couple of years ago.

I agree, Missouri seems to have their share of BAD doctors....it's a lot easier to find a bad doctor here than it is a decent/good one anyway...

 

[ddwheeler]

I also live in Missouri. I’ve had my share of “bad” doctors. I have decided that if my doctor doesn’t have time for me or won’t listen to me, then I will find s new doctor. I currently have a great group of doctors. My surgeon, cardiologist, orthopedist and preferred hospital are in Columbia. I have a great pcp closer to where I live. If one of my doctors told me I needed to see a psychiatrist, I would start looking for another doctor. But you do what you have to do.

I live in Georgia, in the metro-Atlanta area. I haven't yet had to undergo surgery (knock on wood). Since I was diagnosed as having a leaky valve about 6 or 7 years ago, my cardiologists (plural) have all told me that my condition has remained unchanged. I say "cardiologists" because I stopped going to my first one because I honestly felt like I was just being run through the cash register. In one year I had an echo-cardiogram, a CT scan, a TEE (trans esophogal echo-cardiogram). I was also being sent to see a surgeon, just so that they would be familiar with my file (I was told), even though the hospital has a team of surgeons who rotate and the likelihood of my seeing "that" surgeon if/when my time were to come was quite low. He kept seeing me.. every six months in the beginning, and eventually once per year. I had read that a condition such as mine, which is categorized as mild/moderate, should only require an echo-cardiogram every two years, not every year.

I lost confidence in my cardiologist and switched to another one who works in a completely different hospital system. I saw him once and he was also going to set me up for additional appointments, tests, etc., even though he had been provided with all of my previous test results, all of my records. I just never went back to him.

After a couple of years of seeing no cardiologist I went to a third cardiologist, and to be perfectly honest, I don't have full confidence in him, either. In the one year I have gone to him he ran an echo-cardiogram (which I fully expected and knew I needed), from which he told me that my condition was still unchanged. But six months later he ran a CT scan to look at the stub of my aorta, and from that he told me that my aorta measurement at the stub where it meets my heart had changed from previous measurements of 4.5 cm to 4.7 cm, and for that reason he wants to run an echo-cardiogram once per year. He only six months prior, when running the initial echo-cardiogram, had told me that my valve situation was unchanged. The "aneurysm" which they say I have at the base of my aorta, where it meets my heart, is caused by the exact same condition that has caused me to have a leaky valve. My valve is dilated, thus the "aneurysm", with the base of the aorta also being dilated with the valve dilation. My measurements have always been 4.5 cm since the day I had my first echo-cardiogram and my first CT scan. I became suspicious of this new cardiologist when he told me it is now 4.7 cm, especially him saying that the valve condition is unchanged. With that reading he says he wants to run an echo-cardiogram every year, which is what I think is unnecessary for my mild/moderate condition.

But, what do you say to these guys. You have to take their word for it... to some extent, at least. But, at the same time, the patient definitely has a say in the matter.

I have a fantastic PCP. I have 100% full trust and faith in him to be honest and not over-treat me for anything. Unfortunately, I cannot say that for either of the cardiologists that I have seen.

 

[mecretired]

I have been very fortunate in having found the team of doctors I have. I don’t think doctors can get used to their patients who are actually informed and intelligent. They prefer patients who just say——of course doctor. But we all know we have to be informed and proactive. Good luck on finding a cardiologist you feel comfortable with.

 

[Protimenow]

I had (may still have) a cardiologist. Unfortunately, my medical insurance won't cover 20%, I can't afford deductibles for testing or office visits, so I'll see if I can find a cardiologist who may waive deductible. Other than that, I'm on my own.

I don't know if my PCP will require a deductible - but he may help me find a cardiologist who is more flexible on billing.

This American health system is great. (Enough politics, I know, but there ARE lives in the mix - mine and millions of others)

 

[Stevebav]

I'm BAV with moderate stenosis so I know operation is inevitable and have basically been waiting (over the last 2 yrs) for cardio/surgeon to say when. Over the last 18 months I've had 2 ECG and a CT.
My aortic root was 4.8, then 5, then 4.8.again. Guess what - it's not a perfect circle!
So, if your measurement varies according to who looks at those blurry pic's it doesn't necessarily mean they're not good cardios.
My surgeon says 5 is intervention - so I'm pretty much there.
I want to delay as long as sensible without jeopardising recovery but know that it's for me to decide - but how?
At some point I'm going to have to 'jump' and put trust in surgeon and the best measure I can think of is to run up stairs once week and see how long it takes for pulse to recover. Am I mad?
Is waiting to operate worse than waiting for replacement?
My next echo is scheduled for October so will have 4 measurements in 2 years then.
Sorry for rambling..!

 

[Protimenow]

You didn't ramble.

I can't tell you what to do.

Today, it's been 28 years since my AVR -- before I got it, I asked the doctor 'how sick do I have to be?" and was told that it's time (I probably could have waited, but would inevitably have seen my heart wall expand). At the time, I was still young and pretty strong. I had a good job, and good medical insurance. The employer's insurance covered the entire surgery.

Nine months later, I lost the job and the insurance.

For me, the time was right to get the surgery - had I waited, it may have taken a LOT longer to get the necessary insurance. So - what I'm saying is that there may be other factors to consider in addition to the merely physical.

Good luck with your decision.

 

[LoveMyBraveHeart]

I want to delay as long as sensible without jeopardising recovery but know that it's for me to decide - but how?

No one can tell you when or what to decide. I will, however, tell you the experience of someone very close to me.

He discovered an aortic root aneurysm last September...it was already at the 4.8 mark (5.2 at the time of surgery, so quickly progressing) and surgery was recommended soon because of an accompanying BAV with moderate regurgitation causing LV dilation and associated symptoms (chest pain, shortness of breath etc). He got 3 different opinions, all the same recommendations. Ultimately, the surgeon tried to repair the valve at the time of the aortic graft, it was not successful, so they replaced it with a tissue valve (preference of the patient) in December of 2018. 2 months later, they discovered the tissue valve was already failing causing the same symptoms as before the surgery, only worse. Surgical correction was recommended. Patient elected to have a mechanical valve placed this time. 4 days into the second OSH recovery (August 2019), an emergency surfaced, and his only option was to be reopened yet again, this being the 3rd sternotomy in less than 8 months. After each, recovery was hard work for him, but is very possible and the outcome will be worth the several months of recovery. He is doing great and has had all the odds stacked against him, as I'm sure you'll find many on this forum have.

I guess what I'm trying to get across is that no one can choose when the surgery is right for you, what kind of fix is perfect or even what your recovery will be like. All we can do is tell you your options, arm you with knowledge, tell you our experiences, and be here for you as support. Regardless of when you chose to have surgery, you will be okay. OHS seems to be a pretty routine surgery anymore, and many of the folks here will tell you about their successes!

Best wishes to you. I hope you are getting the support you need.

 

[Duffey]

I'm BAV with moderate stenosis so I know operation is inevitable and have basically been waiting (over the last 2 yrs) for cardio/surgeon to say when. Over the last 18 months I've had 2 ECG and a CT.
My aortic root was 4.8, then 5, then 4.8.again. Guess what - it's not a perfect circle!
So, if your measurement varies according to who looks at those blurry pic's it doesn't necessarily mean they're not good cardios.
My surgeon says 5 is intervention - so I'm pretty much there.
I want to delay as long as sensible without jeopardising recovery but know that it's for me to decide - but how?
At some point I'm going to have to 'jump' and put trust in surgeon and the best measure I can think of is to run up stairs once week and see how long it takes for pulse to recover. Am I mad?
Is waiting to operate worse than waiting for replacement?
My next echo is scheduled for October so will have 4 measurements in 2 years then.
Sorry for rambling..!

I don’t think you rambled, but I am concerned about your proposal to run up stairs once a week and see how long it takes your pulse to recover. I don’t think that’s a good method of self diagnosing. I would trust your surgeon to make the call after the echo in October.

 

[pearjas]

DDwheeler: That's a shame you have not yet found a cardiologist you can trust. It does help to have a good primary though. It's too bad they can't recommend one. Are you by chance a Braves fan? (I am).

 

[ddwheeler]

DDwheeler: That's a shame you have not yet found a cardiologist you can trust. It does help to have a good primary though. It's too bad they can't recommend one. Are you by chance a Braves fan? (I am).

Hello, pearjas.

The second cardiologist I saw might actually be the one I am most comfortable with, as they, the individual. The problem, nowadays, is that so many doctors are part of these huge conglomerate medical systems, ie Piedmont Health, Wellstar, etc. These are corporations that are top-down driven and money is very much a key factor. I have been told things by people in the past which indicated that at least some of these health systems had gone so far as to instruct the doctors, nurses, etc., to basically generate revenue, as with the then-latest healthcare laws (the residual from the ACA) had cut earnings so slim that they were having problems meeting their bottom line. I have actually heard this from more than one source... one who claimed to previously have been employed by them, and that being the reason why they left.

That scenario is what I felt like I was going through, though, with my initial cardiologist. But it wasn't just them, it was through my then-PCP, also. I saw the same when I switched to my second cardiologist and a new PCP who was in their same health system. In my initial appointment with my PCP I got read a list of "Have you had this shot? Have you been tested for such-and such? They recommend that people over age 50 be tested for this. We can do that today. Have you been tested for blah blah blah?" Plus, anything at even the most remote level of what I will say is "interest" that they revealed through any/every test they ran, they wanted me to see another specialist. And it was literally stupid stuff. I never went back to either of them.

My current PCP is fantastic. He has an independent office and he is honest and he is fully aware of how these conglomerate systems are currently working. Granted, these systems haven't always functioned in this way. They've come under such huge demands and stresses by these unreasonable healthcare requirements, that somebody somewhere HAS to pay the cost for so many freebies that are woven throughout the new requirements. Hence the problem of socialized medical when there is a sizeable percentage of the population who rely so heavily on getting free care. There is no such thing as "free" healthcare. Somebody somewhere pays for it. If/when the population saps it dry, it will not stay afloat. Thing is, when you have an immense insurgence of illegal immigrants flooding the country (like we do... tens of millions) and specific political entities are giving them instructions as to how they can get free medical care by showing up at hospital emergency rooms, where by law they cannot be refused service, the system is literally being attacked, from within.

Concerning the Braves. I don't follow them like I used to. Back in the early 90s, especially that magical '91 season, when they went to the Series for the very first time, I was like everyone else in the entire region of the country. I was sleep deprived and struggled every day at work because I was up past eleventy-o'clock the previous night, watching the game. But, so was everybody else so nobody cared. In later years I further lost interest, especially with so many strikes and owner lockouts that took place. I don't know if you are aware, but in the 1994 season the Braves also had a very strong team and were playoff bound. But there was another contract dispute between the players' union and the owners and there was either a strike or a lockout right at the very end of the season, and there were no playoffs nor series championship, that season. Yes, the Braves finally won it all in '95. But, my interest began to wane right around that time. I still love sport, but for the most part it is down to college football and some high school sports. I like supporting the young folk who are out working hard and I enjoy seeing them make it to the next level.

 

[tom in MO]

I had (may still have) a cardiologist. Unfortunately, my medical insurance won't cover 20%, I can't afford deductibles for testing or office visits, so I'll see if I can find a cardiologist who may waive deductible. Other than that, I'm on my own.

I don't know if my PCP will require a deductible - but he may help me find a cardiologist who is more flexible on billing.

This American health system is great. (Enough politics, I know, but there ARE lives in the mix - mine and millions of others)

Be careful. Waiving the deductible is not really ethical and could be illegal, particularly if you receive federal insurance. Helping you find one who will waive the deductible is helping you commit fraud. If you ask your PCP they may drop you if they have a moralistic bent. You also may want to question the reliability and competence of a cardiologist who starts his relationship with you by committing an unethical or illegal act.

Some communities have free health clinics that can provide a referral to specialists that will provide service free or for a nominal fee.

 

[Stevebav]

You didn't ramble.

I can't tell you what to do.

Today, it's been 28 years since my AVR -- before I got it, I asked the doctor 'how sick do I have to be?" and was told that it's time (I probably could have waited, but would inevitably have seen my heart wall expand). At the time, I was still young and pretty strong. I had a good job, and good medical insurance. The employer's insurance covered the entire surgery.

Nine months later, I lost the job and the insurance.

For me, the time was right to get the surgery - had I waited, it may have taken a LOT longer to get the necessary insurance. So - what I'm saying is that there may be other factors to consider in addition to the merely physical.

Good luck with your decision.

very true - I was referred to surgeon 12 months ago (when I got the 5 measurement) at a time when I was out of work. I considered myself asymptomatic at that point and so that was very much a wake up call - I suspect my cardio's way of managing expectations. But I then worried about whether to tell subsequent employee, what to do about heath insurance etc.etc,. @Duffey - running up stairs was a bit of joke, but at present I can't say I really suffer from breathlessness etc. but am way less 'fit' than I was 18-24 mths ago. I think I need to convince myself with some physical evidence as well as Dr's advice in October.
@LoveMyBraveHeart - thank you so much for sharing your story. I found it scary and reassuring in equal measure and sincerely hope your other half continues to do well.

 

[LoveMyBraveHeart]

very true - I was referred to surgeon 12 months ago (when I got the 5 measurement) at a time when I was out of work. I considered myself asymptomatic at that point and so that was very much a wake up call - I suspect my cardio's way of managing expectations. But I then worried about whether to tell subsequent employee, what to do about heath insurance etc.etc,. @Duffey - running up stairs was a bit of joke, but at present I can't say I really suffer from breathlessness etc. but am way less 'fit' than I was 18-24 mths ago. I think I need to convince myself with some physical evidence as well as Dr's advice in October.
@LoveMyBraveHeart - thank you so much for sharing your story. I found it scary and reassuring in equal measure and sincerely hope your other half continues to do well.

I dont mean to scare you, I know being in the position you are in is deeply unsettling. I'm more sharing because watching someone go through this has made me realize how important it is to listen to yourself, trust modern medicine, and be amazed by how strong and resilient your body is. I feel like it's similar to watching a women give birth...our body's ability to adapt and overcome is awesome. Hold onto that.