Too muddled

[Jane E]

Hi-
I joined up last winter when a BF (he's history) was having OHS (bypass) and that caused everyone but him to encourage me to look at MYSELF!

Well I finally had a second opinion, echo and MRA. I am so confused with competing numbers that I read here and then sign off. I think my anxiety is making the numbers swim. So if there are some rules of thumb, let me know.

I went for the second opinion because I was getting chicken-egged about my fatigue versus deconditioning. It has become this losing battle trying to get myself to do cardio when I usually tired and get more so when I exercise. I started planning my life around fatigue. No I am not stress free and there are lots of reasons I could be tired but it did seem to change about a year ago. My echo last June and September were fairly stable with BAV with moderate to severe A Regurgitation and various mild leaky ones. The ascending aorta was at 4.0 cm.

Now the echo says the AA is 4.4 and the MRA says 4.5. So that's .5 in 8 months. I think they want to do a graft on the aorta and a new AV. They say it's not an emergency but they don't think I would have an entire year to wait. BUT they wanted to see the MRA first. I work on a school schedule so I would have the time off to recuperate in the summer. For some reason the MRA tests have been taking over a week to wend their way from the MRA facility to the surgeon/cardio I have chosen. So the docs have not read it. A nurse took pity on me and told me the AA size last night so I could have something to chew on for the weekend.

I worry about getting the surgery too soon. I worry about being tired from single parenthood and a really stressful work year and yadda yadda not having to do with the BAV/AA.

And finally I can't seem to study all these numbers anymore. Could someone help me with the fog. Thanks so much. Jane

 

[ALCapshaw2]

Since you have BAV and an Aortic Aneurism, the first thing I would want to know if I had your symptoms is how much experience the Surgeon(s) you interview have doing Surgery of the Aorta and how well they believe they can recognize symptoms of Connective Tissue Disorder.

When it comes to timing, I could see waiting until school is out but see NO benefit in waiting longer. You KNOW your Valve and Aorta need to be 'fixed or replaced' so why not do it Sooner rather than Later to minimize further damage and give you time to recuperate before the next school year begins. Note that it takes 12 weeks for the sternum to Fully Heal and it takes time to 'recondition' your body after surgery and pre-surgery deconditioning.

FWIW, we could possibly tell you more about your echo results if you would be willing to share those numbers (with units, e.g. mm, cm sq., %, and mmHg) and comments.

'AL Capshaw'

 

[Jane E]

thanks Al

thanks Al

Thanks Al. I will sort that out and get back on here later. I can't read all the abbreviations on the new guy's stuff. He has is own valve center at a hospital in suburban Phila but I am surprised since my numbers seem lower than most. Til later, Thanks for being there.
Jane

 

[bugchucker]

.5 cm in 8 months is quite a bit. My surgeon's magic number was 5 cm. I got to 4.7 and said let's get this over with. Due to some issues with my colon I had to go with a tissue valve and I'm only 37 so I will be back under the knife at some point. Best of luck! I would recomend having friends and family if possible to help out for the first couple of weeks, especially with the children.

 

[tobagotwo]

The notion that there is a "right" time for valve replacement is a medical illusion, created by the members of various cardiological fraternal organizations, with rules of play agreed upon to bring some pretense of order out of chaos.

No numbers, no agendas, this is it: There are only two timings for OHS: in time and too late. Too late is defined as when there is permanent damage to the heart.

All the rest of this is about numbers and reasons, so you may cease to read with no fear of embarrassment, especially if you feel a queasiness coming on from being presented with excessive information...

Doctors and cardiologists tend to hold off on surgery because there is always a small chance of death or permanent damage from OHS. Physicians are constrained by a duty to measure the possibilities of damage from surgery vis-a-vis the possibility of damage to the patient from not acting. In the case of valves, the concern often felt by members of VR.com (myself incuded) is that the inertia of not acting, not moving sometimes seems to overwhelm the logic that the person must eventually have the surgery anyway, or he or she will perish.

To help make the decision point more universal, in the rules of cardiological etiquette, the replacement of a stenotic aortic valve is usually witheld until the valve opening is estimated to be less than one centimeter squared, or the cross-valve pressure gradient is equivalvent to it, particularly in the presence of other symptoms. In severe aortic regurgitation (insufficiency), it's mostly dependent on either the severity of left ventricular hypertrophy (a form of heart enlargement), an ejection fraction lower than 50%, or the severity of the symptoms (usually shortness of breath, dizzyness, angina). Generally there is a combination of both misfunction and symptoms.

Symptoms are extremely important in both cases. They mean that the stakes of inaction have been raised for the patient, and begin to tip the scales to make the surgical odds the more favorable value. To steal from the American Academy of Family Physicians http://www.aafp.org/afp/20011115/1709.html

In patients with asymptomatic chronic aortic regurgitation and left ventricular dysfunction, the rate of progression to symptoms is higher than 25 percent per year. In symptomatic patients, the mortality rate is greater than 10 percent per year.8

For aortic aneurysms, anything above a 4cm size has some potential to dissect. In terms of surgery, aortic aneurysms are usually kept from surgery at least until they hit the 4.5 cm mark. At 5 cm, they are generally considered fair game for any thoracic surgeon, no lead time required.

Your doctor has you on 6-month watch, which sounds very reasonable for your situation. He may then move you to three-month watch. This is in preparation for sending your issue to a surgeon. He needs to gather evidence to make a case that surgery will serve you better than waiting, and (I think) he believes your heart or your aneurysm will provide that evidence in fairly short order. He doesn't appear to be rushing you. He appears to be watching out for your interests very appropriately.

It's a lot to take in, but you've got some time to adjust. Consider what it might be like without the constant fatigue, and the annoying palpitations you are probably experiencing. You may not only warm up to the idea, you may begin to look forward to it.

Best wishes,

 

[Jane E]

HI all.
Thanks for all of your response. I am having difficulty here. I just wrote a HUGE post with all kinds of info and somehow became signed out and lost it all. Then I tried to post ANOTHER and that was eaten. I have to go do some things but I will try again later...maybe write it in word and then copy/paste.
Jane

 

[Ross]

HI all.
Thanks for all of your response. I am having difficulty here. I just wrote a HUGE post with all kinds of info and somehow became signed out and lost it all. Then I tried to post ANOTHER and that was eaten. I have to go do some things but I will try again later...maybe write it in word and then copy/paste.
Jane

Jane I'm going to switch you to a different style. For some reason, that damn glass style does that.

 

[ALCapshaw2]

It is VERY Frustrating to lose a long post!

Composing in a Word Processor and copying is probably the safest solution.

I've learned to recognize when my (ancient) computer is 'slowing down' or may have other 'issues' and I do an immediate Copy and Paste into an E-mail which I then put in the Send Later folder. It's a little less intimidating that the Copy and Paste composure for Every Post and has saved the day on a number of posts.

Bottom Line: It is wise to use some sort of backup / copy feature to protect Long Posts.

'AL Capshaw'

 

[tobagotwo]

I usually do a right-click-select-all-right-click-copy just before I submit. Then, if something were to happen, I can just paste the copied post to a new reply, an email, or a Word document.

However, I don't always think of it. I lost a couple on the Glass Style, including one with a lot of quotes and URLs. That hurts a lot.

One way to fix it:

- go to the upper blue bar on this page and click on USER CP (it's way over on the left, just above "Post Reply")

- when the User CP page comes up, page down to the very bottom of the page

- on the bottom is another blue line, and to the very left of it is a place where it says, "-- Glass Style." There is a down arrow just to the right it.

- click on the down arrow to display the menu of choices

- click on "--ValveReplacement"

This will reset your style. It should always come up in the ValveReplacement style after that.

 

[Jane E]

Thanks all. Looks like Ross fixed that up for me. Let's try again.

BAV shows thickening. AV leaflets are calcified. AV peak pressure – 21 mm Hg. Mean pressure =14mm. Mild AV stenosis. Moderate to severe AR. An “eccentric jet of aortic insuffieciency directed against the anterior mitral leaflet.” (love that I have an eccentric jet among other eccentricities.)

LV mildly dilated. LV systolic function low normal. EF estimated 50-55%. (Spet


A root is normal. Ascending aorta 4.4 on echo, 4.5 on MRA (Sept. 08=4.0)

I think these measurements correspond even though the abbreviations are different from each office. They did say they noticed on the echo that the overall heart size increased but I don’t know where to look for that number. I’ll wing it with the ones that look comparable, first Sept, then now.

LV cavity, diastolic 5.2 now LVIDs 5.8
LV cavity, systolic 3.7 nowLVIDs 4.3
Aortic root 3.6 now Ao root diam: 3.0

It seems that the changes and the fatigue were important to them. I thought like so many that “size matters” but they don’t seem to think that way

The docs are at a suburban Philly hospital. I know UPenn is considered the best around here but going into the city just poses more difficulty and that place may be more like a factory. They didn’t impress this forum’s Bill who has kept in touch with me since we are local. The group I went to have been really human—every single one of them. Abington Memorial Hospital, V. Paul Addonizio, Pilla Heart Center- Porter Center for Valvular yadda yadda. Addonizio has been doing some wild things like aortic bypass for frail patients. He was willing to do minimally invasive AVR but not if I need the aortic graft. He also primarily does biological valves and was okay with me doing that at 51. I am just too uneasy about Coumadin.

They were ready to roll with the AVR but wanted a better look (MRA) at the ascending aorta. They will see it tomorrow. I got the measurement as I said from the nurse practitioner late on Friday.

I have been on Coreg 12.5 bid and Mavik 1.0 for years. Actually reduced the Mavik a year ago because BP too low.

I have been doing less and less cardio because it seemed like diminishing returns. I budget my energy and that started getting frustrating. 2 summers ago I rode my bike a lot but would get really woozy at stop signs and I get that way after a half hour of no resistance on an elliptical. I was getting dizzy in yoga so they reduced the Mavik last spring but that is when I noticed yoga got more difficult during the strength poses. I went for the second opinion because of the frustration. I figured if they told me to stop whining and really hit the gym, I would. They said they want to go ahead soon, meaning under a year. As I said before I could fit in summer surgery because I work for a school agency.

Other stuff, as I said I am 51, 5’8”, 160 llbs. Good BP, low cholesterol.

My big worry is that my numbers don’t look that dramatic and am I going into this too fast considering that I will go with a bio valve? But on the other hand the possibility of more energy sounds like the grail. Even in junior high I figured out on the hockey field that I was much better as a goal tender than running around on the field breathing heavy. It was always chalked up to low moral character and so perhaps that’s lingering. DIdn’t know about BAV til about 8 years ago.

Okay. I hope this helps you help me befuddleness. Appreciate your company.
Jane

 

[Lisa in Katy]

To hell with the numbers. There is no right time. Do it when it fits best in your schedule. I'm assuming that at 51 your kids aren't real young and could help out lots if you give them clear instructions. The moral of the story is that you definitely need the surgery, and although it could be delayed, why wait until it's an emergency?

 

[Jane E]

Thanks to you too Katy.

It's me, my 16 year old son who doesn't drive and my 17 year old cat who also doesn't drive. I am trying to schedule this so a friend can fly in to help out for a few days. My exhusband is a good egg and will help too but that can be awkward.

I was told to make sure: I can reach my important stretchy clothing without reaching, to buy extra laundry detergent, kitty litter and all those heavy necessities. I am not far from supermarkets so I should be able to have stuff here as needed and some deliver. My drug store will deliver too. The hospital is about 40 minutes away but once I have a date I will try to get those rides worked out.

I am pretty scarce on local friends and my mother is 85-- pretty healthy but a bit dotty. I think careful planning will be my best bet so advice for this kind of thing would be helpful. My son will be great but I don't want to overwhelm him with too much.

Jane

 

[Jane E]

Oh boy when I reread my own post I thought-- this would be terrible if I waited for an emergency. Turns out I have "work friends" who seem interested in helping with driving too. I work further from home but the hospital is in the work region so maybe work friends are going to be just plain good friends.
jane

 

[ALCapshaw2]

Jane -

I see what you are saying about your numbers. Your Stenosis does not appear to be of great concern - yet -.

I don't have a good 'feel' for the numbers / triggers for regurgitation, BUT symptoms are also important.

Your most Critical Issue would appear to be the aneurism, followed by your symptoms.

It's not clear to me whether your opinions came from Cardiologists or Surgeons. Surgeons look at Numbers, Symptoms, and 'what needs to be done' to make you healthy again. At this point, I think you need to be talking with Surgeons, and MAKE SURE they have lots of experience doing Surgery of the Aorta and can recognize signs of Connective Tissue Disorder. You want to get Everything Fixed the First Time!

You may want to meet personally with an Aorta Surgeon from the University of Pittsburg or see if you can get into Cleveland Clinic.

After Surgery, you will definitely need help at home for at least one week, preferably two. Planning for surgery early in the summer vacation seems to have the most merit from my perspective.

Regarding Coumadin, you might want to read the "stickys" at the top of the list of threads in the Anti-Coagulation Forum. Most of us find that it is NOT a 'big deal' and we get along just fine. There are a LOT of myths and horror stories from 'days of olde' before the creation on INR testing. That said, if you want to reconsider a mechanical valve, the On-X Valves have greatly improved technological features that are worth considering. See www.heartvalvechoice.com and www.onxvalves.com

That may complicate your Surgeon Search if your local surgeons don't use On-X or aren't willing to sew on an aortic graft vs. using a valve with an attached aortic graft. I know, 'Too Much Information' to digest at one time...

'AL Capshaw'

 

[Jane E]

Thanks Al-
It is lots of information but I can always read and reread.

I will have to take a look at those Stickies again. I have already hit the really sleepy part of my day and so it was rough driving home from an afternoon meeting. I have to splash some water and keep going for one more errand.

As for Pittsburgh and Cleveland that's clear across PA and over 400 miles. We are a big state for the northeast. Philly has a great guy at UPenn but logistics are already a bit tough. Thanks though for the thought.

The people I just saw are a team that only does valves and related stuff. So I saw the surgeon, the cardiologist he works with and everyone including the professional hugger as I called her. So they do seem to have lots of experience. I think they are concerned about the change. Don't know. They surprised me so I didn't have plan B.

This is a good time describe the most annoying symptom: it is when I just get sooooo sleepy. It feels like the middle of the night, my eyes are all droopy and my alertness goes waaaaaaay down. I have trouble thinking. I hate it and I can't fake it in conversation. People just think I'm rude or stupid.

When I had the MRA I think they were piping the tube full of oxygen. I was in there doing all that breathing and breath holding for an hour and 45 minutes. That night I felt clearer than I had in FOREVER. I swear it was the oxygen. Does that make sense to anyone?

Jane

 

[Jane E]

on-x

on-x

And this guy let me play with a whole tackle box of valves on his desk including the On-X.
Jane

 

[ALCapshaw2]

Low Oxygen could very well be a factor in your symptoms.

Have you had your Blood Oxygen level checked with the simple device that clips over a fingernail? If not, ask one of your Docs to check that. Actually, any Nurse could check it if they have access to one of those devices. We even had one at our Cardiac Rehab facility.

You just may have pin-pointed a Major Factor in your symptoms!

OOPS! I guess I got confused about your location. Yes, UPenn seems to be a Big Heart Hospital if I remember right.

One more time, make sure that your surgeon does lots of Surgery of the AORTA, not just Aortic (and Mitral) Valves. Surgery of the Aorta is a BIG STEP beyond 'mere' valve surgery.

'AL Capshaw'

 

[Jane E]

Oh my, thanks Al.
I am sitting at work...not working. Trying to figure out how to get a...third opinion? I have been seeing a local cardio for years and getting frustrated with the tiredness etc that I saw discussed on the thread about fatigue. I can relate to most of those posts. Is it me or my heart? (You know what I mean.) Also, I read about the opthalmic migraines which have been on my plate FOREVER. So perhaps I am more symptomatic.

So you think I need to go to a second surgeon? I am not enjoying going through this decision alone. Anybody?
Jane

 

[ottagal]

Hi Jane,

A few days ago, I posted a thread asking for input on exhaustion/fatigue as a symptom and the answer was a resounding yes! I am not sure if you read it, but might be worth reading the replies. I plan to revisit this 'symptom' with my cardio next appt. In my case, the self-doubt is the hardest.

I would look into Al's suggestion of getting your O2 tested ! Most would agree that a second opinion is helpful if you are not comfortable with the first. Good luck and keep us posted!

 

[escargome]

Jane,
First you are not alone. We will give you our thoughts to help you come to some type of informed decision. Next, you know how you feel. Trust your body, it is trying to tell you something. Find a second opinion from a surgeon if you feel it necessary. You gut will tell you who to trust. I hated my first cardio, but then found another and fell in love (not literally) with him and my surgeon. So take that leap and find the help you heart and body needs.