Uneasy feeling about pace of appointments

[gregjohnsondsm]

Hello,
I have a Bicuspid aortic valve with aortic stenosis. We have been following it for 40 years and they have always told me that there would be plenty of time to get prepared for the surgery, if necessary. In Oct. my doctor said that we had 1 - 3 years before needing surgery. (AV effective area was 1.1 cm^2 Mean gradient 40, peak gradient around 68). These last few months I have been feeling 'odd' and I went to see my heart doctor. He wasn't available so I saw another guy. He said again that I had plenty of time. Good so far. But I requested another ECHO test, they wanted to wait until May, but I needed the data for FAA flight certification. After the ECHO, the next morning they called me and said I should see the valve doctor. But that appointment is 2 1/2 weeks out. My new ECHO data is: 1.0cm^2 Mean 62, peak 99.. This was four days ago. I have been feeling very strange, tingling hands and feat. Hands fall asleep when trying to sleep. Belching after eating, general heavyness on the chest, and a rather numb feeling all over the body. So I went so see the doctor (I never did see any doctor after the ECHO) and only was allowed to see the Nurse. She said that if I didn't have chest pain or palpitations that they couldn't move the appt forward. I want to get appointments at Northwestern or Cleveland but the are a Month out.
I really don't want to go to the emergency room and have to have this operation as a 'last minute' thing. Is there more I should be doing to get this resolved? My appt. with the valve doctor is still 1 week away. I am able to walk, stand, work (at a desk) without issues other than the constant feelings of the heaviness and general numbness all over. I really don't want to keel over and have and either "thats all folks" or have an emergency valve replacement without being able to discuss valve types etc...
Question:
How have other felt the weeks / months before surgery?
Did you feel normal and the ECHO tests were what signaled time for the operation?
Or did you feel sore, heavy, pain, etc??
I am very concerned that my medical doctors are not as pro-active as I would like them to be. By the way it is Iowa Heart Center in Des Moines Iowa.
Should I be having some other tests? Like MRI or CAT scan or ?
Any help would be appreciated.
Is there a chance of immediate failure of the valve? Is my concern valid or am I just over stressed?
Thanks,
Greg J.

 

[skeptic49]

If I were you i would press hard for answers. Symptoms can be very subtle. Your mean gradient is clearly in the severe range. Why not talk to a surgeon ASAP?

 

[Paleowoman]

Hi Greg - When I was referred for surgery my mean gradient was 38 and peak 68, valve area size 0.9. I was absolutley symptomless. Like skeptic49 say, you need answers soon. Have you researched cardiac surgeons ? I started researching surgeons two and a half years before referral when the cardiologist told me surgery would be approx two years away - he actually advised me to do that. I would also take things easy now or maybe see your GP and talk to him if you can becasue the stress of waiting till your appointment cannot be good…I mean several people in the end stages of the 'waiting room' get prescribed something to help them relax. Being stressed is definitley a normal reaction. All the best.

 

[neil]

Hi Greg. Agree with skeptic on this mate

 

[knotguilty]

I would suggest you start taking 81mg (baby aspirin) daily, if you don't already. I know for me, when I found out it was time for surgery, the symptoms all of a sudden got worse. I am sure it was more in my head. But I would stay on top of the doctors and keep calling to see if there are any cancellations that you could your appointment up. No one knows if you have anything to worry about but if you are uncomfortable, the sooner the better, at least for your own peace of mind.

 

[gregjohnsondsm]

Skeptic, I agree with you guys. So, I went to my cardiologist to see my doctor. He was out for 1 month in Hawaii. I tried to see the other doctor who setup the ECHO I had on Monday, but they would not let me. They did let me see a nurse practitioner. She was helpful but basically prescribed me some lasik and said that would reduce the load on my heart . I specifically asked to move up my appointment with the surgeon but she said that until I have severe symptoms (chest pain - not just heaviness - or dizziness, or fainting or significant swelling in my feet and hands) that she could not move up the appointment.
I have started to research doctors - over two years ago. I am scheduled to see Dr. McCarthy at Northwestern and Dr. Marc Gillinov in Cleveland. But these guys take time to get in to see.
So to answer your question directly, I have tried and the only other method I can think of is to enter the emergency room. But I am not feeling like an emergency yet. But I don't know...
So
Back to my other question: what types and severity have other people had pre-surgery and how long did it last? Do people just rapidly fall apart and die before getting to the surgeon?
Of course now every little bit of indigestion makes me think that this is the big one... And of course they are not.

KnotGuilty, I do take an aspirin every day. Full strength and have been doing that for a number of years. I have had two very good surgeons / neurologist tell me that that is the single best thing a healthy person can do to help themselves from having a stroke.

 

[Eva]

Greg,

My only thoughts/advice are:

1- if you love/eat salty food, try to stay away from it. I swell and my arm gets numb sometimes due to salt.
2- the symptom I had for a few months before my cardio informed me I needed surgery was I was getting out of breath while talking on the phone, taking stairs up, even sitting watching TV! Still I had my surgery six months after the news.
3- the other symptom was extreme fatigue! I i stopped shopping, going for walks, or cooking!

At this stage, you better stick with cardio's or doctors who know your medical history. You may seek another opinion, but do not make decisions on your own.

Good luck.

 

[AZ Don]

I agree with the advise to go talk to a surgeon. Assuming the surgeon thinks you're ready for surgery then you can start that process without waiting for your Cardiologist.

 

[harrietW]

My question is how do you just go to see a surgeon. Do you not need a referral. ?

 

[gregjohnsondsm]

I did not need a referral to see the surgeons at Northwestern or at Cleveland. I did have to send them tons of test data and other information before they would setup the appointment.

 

[Paleowoman]

You certainly need a referral to see a surgeon in the UK. I don't know about the US, but in the UK you always need a referrl to see any kind of specialist or consultant, a referral either from your GP or from another consultant. In this instance a referral would be from the cardiologist to a cardiac surgeon. That doesn't mean you haven't any choice in the matter of which surgeon but it does mean you need your cardiologist to refer you to him/her.

 

[harrietW]

Ok thank you Paleogirl and Greg john,
Thankyou so it is different everywhere then. There isn't a chance to see one here without a referral. You can't even change family doctors without one and then you have what they call a meet and great. I see my my cardiologist Monday and l am sure she will all have a couple of surgeons in mind. My family doc whom l loved retired in June and unfortunately l am not crazy about his replacement. But l left the everything alone thinking because my file was there already it was just easier. I will also make that decision to find a new one on Monday providing l still have a few weeks before surgery. Thx

 

[Eva]

My question is how do you just go to see a surgeon. Do you not need a referral. ?

HarrietW,

ability to see a surgeon or any doctor without referral depends on your insurance company and the premiums you pay!

 

[harrietW]

Eva thank you. Makes sense, I live in the Province of Alberta, Canada where we no longer pay Alberta Health Care primiums now for a few years. I am hoping to hat my cardiologist offers up at least a choice but that will also depend on if the send me to Calgary or Edmonton. The discussion will be had on Monday. Thank you again.

 

[MrsBray]

You are your own best advocate. When my HMO told me (mistakenly!) that my cardiologist and surgeon were not on the approved list, I called the insurance company in tears. My employer also has a "patient advocate" who helps employees navigate the health-care maze. I truly believe if i had not spoken up and demanded to see my established doctors that I would have received a greatly different level of care than I did. My point is, nobody else is going to go to bat for you. If the nurse says you can't change an appointment without chest pains or palpitations, then say you have chest pains or palpitations! There's no test they can do to prove you *don't* have chest pain or palpitations! A few years ago the cardio doc asked if I had any chest pressure. I said sometimes it felt like a fat squirrel sitting on my chest. He laughed, and said, "Call me when it feels like German Shepherd." Also, if you don't need a referral to see a surgeon, and you have copies of your test results (which everyone should have, for their records!) GO SEE A SURGEON if that's what you think needs to happen next!

Once my AVA went below .8, things started moving pretty quick. I was 1.1 in February 2013, then .89 in August, and at surgery time March 2014 I was at .77. Palpitations, shortness of breath, extreme fatigue, muscle weakness, and a nagging little cough in the bottom of my throat.

be your own health-care manager, you can do it!

 

[gregjohnsondsm]

MrsBray, Thank you for the response. I agree with you. Here is a link a friend sent me showing a study that indicates an correlation between active engagement with the hospital and successful outcomes.
I have also found that you can research hospital infection rates etc at the Medicare website. I think all of this is useful in preparing for OHS and selecting your local / distant hospital.

http://www.consumerreports.org/cro/...ng-way-to-stay-safe-in-the-hospital/index.htm

 

[epstns]

Greg - I cannot say enough good things about Dr. McCarthy, both from my own experience and from the experience of the late Ross, one of our early and long-term members. Dr. McCarthy usually starts out by telling you "I may not be the #1 man in the country for this procedure, but I AM #2." I think he really is that good. Maybe not the warmest of bedside manners, but a great surgeon supported by a great and wonderful team and a great hospital. You wouldn't go wrong by going to Northwestern.

As some of the others have noted, sometimes when we are told of a new development in our heart condition, symptoms seem to appear "out of nowhere." This may be all in our minds, but it also may be a new realization that something we had been feeling for a while was, in reality, a symptom. I was, for the most part, asymptomatic right up until my surgery, BUT I did have occasional bouts of minor shortness of breath ("short" compared to my normal, probably great for most guys my age), hands and arms falling asleep while I was asleep, and other weird things. Most of that has gone away since surgery, but lots of things change after such a major surgery, and you will likely define a "new normal" after it is all said and done.

 

[Northernlights]

I do agree that you are your own best advocate, but I do want to suggest that your symptoms and echo do not suggest an immediately urgent problem. While prompt valve replacement is recommended after symptoms develop,this doesn't actually mean emergency replacement. It's also uncertain whether your symptoms are actually due to your aortic stenosis rather than understandable anxiety - they aren't the classic triad of breathlessness, angina and fainting. Since you've got an appointment next week it seems fine to wait for that: even if you went to the emergency room I really don't think anyone would whip out your valve: though obviously go if you have symptoms that worry you. I see Eva's point, and we should never underplay our symptoms but I think we should be honest about them also for our own sakes - otherwise our doctors are acting on the wrong information.

Your valve area has gone since october from 1.1cm to 1 cm - not a big change, and only just on the cusp of severe, and though your gradient has increased to severe, gradients are very flow dependent, and it could well be that anxiety meant your heart was beating faster during the second echo. I don't want to dismiss your symptoms or stenosis, but I can't see anything which means surgery needs to be anything other than planned.
I had stenosis with a valve area of .6cm and a mean/ peak gradient of 68/99: for various reasons it took 9 months to arrange my surgery after that , though I must admit I was not happy about the wait and my increasing symptoms. On the other hand it gave me time to change my mind about both operation and surgeon! Sudden death is rare, almost always preceded by a history of fainting, and generally due to sudden strong exertion. Your risk is extremely low, but keep calm and take things easy! You've known this day was coming for the last few years so I expect you have thought about the type of valve you want and where to go, if not, use the time for this.

An MRI or Cat scan seem unlikely to be necessary unless ordered by your doctors but people get an angiogram before surgery to see if bypass is needed too. I would query the diuretic though, as diuretics need to be used very cautiously in aortic stenosis. Do you have any other cardiac problems?
Good luck with your appointment!

 

[gregjohnsondsm]

Thank you Northernlights for taking the time to respond with specific information. I do not think that I have any other cardiac problems, had a carotid artery scan 2 years ago and fine, and a calcium scoring test done and that was normal. I will keep this post up to date with progress. Still trying to get an appointment at Cleveland.

 

[tjay]

I really like the response from Northernlights above. It's a different kind of response than what we get most of the time. Generally speaking (not this particular post), while everyone is good intended, kind-hearted and helpful, and checking back with your doctor on any symptom is a great idea, folks like gregjohnsondsm are also looking for some assurance IF it's warranted based on someone like Northernlights' first-hand experience. What patients like us are looking on forums like VR.com is "crowd" opinion from other fellow patients, as doctors are already being consulted (I hope). Already anxious person can only handle so much more of unknowns and anxiety
I really hope the above response provides some assurance to gregjohnsondsm, and take away some of tingling and numb symptoms overnight And let you properly plan your surgery more positively.