"The smell of hospitals in winter..."
Wednesday, December 31, 2008
If the aortic valve is narrowed, the left ventricle has to work harder to pump a sufficient amount of blood into the aorta and onward to the rest of your body. In response, the left ventricle may thicken and enlarge. At first these adaptations help the left ventricle pump blood with more force. But eventually these changes weaken the left ventricle — and your heart overall.
I'm going to look today for the technical description of what happens. It has something to do with blood supply to the heart which becomes disrupted or irregular as the heart enlarges in an attempt to compensate for the narrowed valve. This results in ischemia of the heart...which is defined as a localized anemia of living tissue. In other words, parts of your heart begin to suffer from lack of blood supply...therefore, lack of oxygen, as I understand it.
So this is why you don't want to wait to long to have valve surgery if you need it. This sort of damage is NOT reversible, according to what I've read.
Tuesday, December 30, 2008
I'm not anxious to have the surgery on the one hand. On the other hand I want it if it's time, and before there is permanent damage to the heart, and before I blow a gasket and have an aortic dissection or rupture. I want this for myself, and for those I love and who care about me.
Monday, December 29, 2008
I have a friend who I met through our shared interest in toy train collecting. He's an anesthesiologist. He found out about my heart condition and kindly wrote to me. Turns out he was in training to be a cardiothoracic surgeon before changing career paths. He wanted to know about my condition and offered advice.
So I told him about the BAV diagnosis and the aortic aneurysm or dilation (some people like my GP don't seem to be up on the current literature that lists anything over 4 cm as "aneurysmal.) I also explained that I would not agree to surgery unless the battle plan also addressed the aneurysm. He wrote back saying that my surgeon might not want to repair the aorta because the dilation was probably due to stenosis of the AV.
Of course, my friend has probably not read the current literature on BAV disease and the studies that indicate that aortic dilation is separate from BAV stenosis, happens due to causes other than BAV stenosis, and will progress in a significant number of patients even after BVAVR.
Through all of this I'm trying to keep my eye on the ball because I was to have a clear head when I meet my surgeon on January 6. This is what I have to keep front and center:
In patients with bicuspid valves undergoing AVR because of severe AS or AR (see Sections 3.1.7 and 188.8.131.52), repair of the aortic root or replacement of the ascending aorta is indicated if the diameter of the aortic root or ascending aorta is greater than 4.5 cm.* (Level of Evidence: C)
This is from the 2008 Focused Update Incorporated Into the ACC/AHA 2006 Guidelines for the Management of Patients With Valvular Heart Disease, the very lastest practice guidelines. My ascending aorta is a 4.3 cm as of the lats measurement in November. If the surgeon "pulls the trigger" when I see him on January 6, the plan has to include tackling the aortic aneurysm because I'm only 2/10ths of a CM under the trip point in the guidelines. If not, then would not agree to surgery because of the risk that I would have to undergo a second OHS in a few years. So we'll see next Tuesday after I get the CT scan and meet with Joe Bavaria.
In the meantime, I'm walking four miles a day usually, and trying desperately not to consume too much of this tasty food that is all to readily available around the holidays. I made a meal for seven on Christmas day and the leftovers are delicious. Yesterday Dan made a turkey pie and we had some of it for dinner. It is really wonderful. I made holiday cookies last week, Viennese Crescents, and they're yummy too. How do you not put on a few pounds at this time of the year with all of this good food around?
Sunday, December 28, 2008
My story seems quite common here: an asymptomatic, fit and otherwise healthy person suddenly finding out they have heart disease which needs fixing soon. Life is turned upside down; mortality suddenly becomes very tangible. I’m 42 and have exercised virtually daily for many years (gym, swimming, cycling, walking etc). In August 2008 I fainted while swimming (at the end of a final lap, sprinting as fast as I could). The fainting episode must have been brief as I didn’t take in much water (or drown for that matter!). While passed out as I was having a nice little dream (I can’t recall the details now but it was pleasant). It was thus something of a shock to come to underwater, out of breath and unable to breathe, rather than waking up warm in my bed. Even though I’d not fainted before I put off seeing a doctor for a month or so; he soon identified a murmur with the stethoscope and sent me off for an echocardiogram. I didn’t get the result until some weeks later, but the news relayed by the GP was grim: ‘I’m sorry to tell you this on your birthday, but I’ve spoken to the cardiologist and we think that you’ll need mitral valve surgery; don’t do any strenuous exercise’ (he knew that I went to the gym regularly).
That feeling of "this can't be happening to me" is quite common, especially in asymptomatic people who exercise regularly and stay healthy. That's why valve disease is sort of a cruel diagnosis. I'm lucky to have made it to 60 with a BAV. Many people don't make it that long before they need surgery. Still, while I consider myself lucky in one respect, I'm not happy about it. However, eventually everybody has some medical problem to deal with...so at least I may be able to get a fix that will buy me some time.
Friday, December 26, 2008
Here's a cute story about cats and sleeping post-op in a recliner or in bed from one of the VR.com members:
While I used the recliner a lot during the day, I couldn't sleep in it due to being visited by cats (some rather more than 10 lbs.), I slept mostly in bed. Back sleeping resulted in snoring loud enough to wake me up, so Laura used various wedges of blankets, towels, and pillows to position me for comfort--about halfway between back and side. On cold nights she would also microwave a buckwheat pillow for me, and I would use it as necessary for warmth (heat lasted for hours).Strangely, it was a heart-related incident that forced me to use a recliner. Back up in Anchorage in 1996, shortly after I noticed a rather abundant number of PVCs during our very stressful move and drive to Anchorage from Idaho, I wore a Holter monitor for 24 hours to record my heart action awake and asleep. I couldn't lay down in bed, since the device was too cumbersome, so I wore a bathrobe, placed the main monitor into one of its pockets, covered up in my Lazy Boy recliner, and managed to get a reasonably good night's sleep. There were cats then, too, but I could take a nighttime 'visitor' or two--just shoved him or her off when too warm or heavy. Amazingly enough, three of the six cats we had then are still alive, including one that's now 18--and she's in great health. Of course after the OHS, circumstances wouldn't allow me to free myself of heavy cats, so I couldn't take the risk. Anyway, Laura made the bed nice and comfortable, and it made her feel a lot better to be beside me in bed--and me, too.
Systemic hypertension is not rare in patients with symptomatic aortic stenosis (32% in our series). Left ventricular remodeling patterns are quite similar in hypertensive and normotensive aortic stenosis. Our results suggest that symptoms of aortic stenosis develop with larger valve area and lower stroke work loss in hypertensive patients, probably because of the additional overload due to hypertension itself. It could suggest that in patients with coexisting hypertension and aortic stenosis, hypertension should be treated more aggressively to delay the occurrence of symptoms, and these patients should be followed-up more closely.
For Christmas dinner I cooked a vegetarian entree: Tofuturkey. I've tried the stuffed tofu substitute poultry entrees that are available at our local Whole Foods and I like them. So we had something that didn't have to die available for those so inclined, in addition to the traditional "dead bird" that we're all used to. Three out of seven opted to go vegetarian, which is also heart healthy.
Thursday, December 25, 2008
I am an active 44yo male with AI diagnosed in childhood. I have enjoyed annual checkups and echos (until this year). Recently I visited my cardio for my exam and he now informs me I have progressed to "severe" and surgery is needed. I am going for a second opinion in early January. I have always known that surgery is immanent but now? I feel great exercise pretty regularly, and am very active with no limitations. I have always been told what symptoms to look for and I have none
It's amazing how you can walk around and do most anything even though your valve is in bad shape. If you are in good physical condition, the body adapts and this can fool you. I'm in the severe range myself with a bicuspid aortic valve and a 4.3cm ascending aortic aneurysm, yet I feel fine and can do most anything...well, I get winded and I can't push to hard or else I get chest tightness. But I don't feel like I need surgery even though I do.
Wednesday, December 24, 2008
Tuesday, December 23, 2008
Generally speaking, a slightly enlarged aorta in the presence of a bicuspid aortic valve (BAV) has a higher incidence of aneurysm formation and dissection. Unfortunately, there are no tests that can predict whether or not the aorta will continue to enlarge or be prone to dissection in the future. Because of this and the high mortality rate associated with acute ascending aortic dissection in those with bicuspid aortic valves, specialists in aortic surgery recommend that a slightly enlarged ascending aorta be replaced at the time of valve replacement.
On the CS website, the trip wire for surgery on an aortic aneurysm on someone with a bicuspid aortic valve is 4.5 cm. However, the above paragraph stipulates that for people with BAV, even a "slightly enlarged" aorta should be replaced at the time valve surgery is done. This is because people with bicuspid valve disease have a higher risk of aortic aneurysm rupture or dissection.
Now, my aorta was just measured at 4.3 cm, which is more than slightly enlarged, it's an aneurysm. Even if my aortic valve was just fine, which it isn't - it's moderately to severely stenotic - I would only be 2/10ths of a CM away from the surgery trip wire. So what's it gonna take for my surgeon to pull the trigger and schedule me for surgery? Not much, I don't think!
I go to get blood work done today in advance of my CT scan scheduled for January 6. So, it's two weeks from today until I meet again with the surgeon and find out what the battle plan is. In the meantime, I'm still walking twice a day for a total of about four miles, even in the cold. Yesterday my AM walk was interesting because the wind was really blowing strong from the Northwest off the river, and the wind chill must have been about zero degrees. It felt like that anyway. I wear my heaviest parka, hood, gloves and "Ninja" mask to cover my face. The only thing that was cold was my legs. I could benefit from some "Long Johns" but they are hard to come by to fit me because of my long legs.
Anyway, I'm feeling good and I'll continue the walks, and continue living life as normal as I can until Jan. 6. I have only minor symptoms, the palpitations, and getting winded easily on hills and steps. No dizziness yet, or swelling of the feet, etc. But why wait for that to occur? My condition is not going to get better, only worse. Also, aneurysms don't usually have symptoms...until they burst or dissect...and then you're in BIG trouble.
So, January 6 will be the day of reckoning. We'll see what happens then and we'll take it from there.
Monday, December 22, 2008
Here's an explanation of why patients undergoing open heart surgery require temporary pacemaker wires inserted during surgery:
After heart surgery or another life-threatening event involving the heart, it may be necessary to put in a temporary pacemaker to make your heart beat at a normal rate...One type of temporary pacemaker may be attached to the patient's heart during heart surgery. This type has wires which go from the heart through an incision in the lower chest to an external box that makes the heart beat normally.
As I understand it, while the wires are present after OHS, a pacemaker may not be needed if the heart beats regularly and the wires may be removed at some point during recovery, or a permanent pacemaker may be needed.
Sunday, December 21, 2008
Here's a paragraph from one paper in the Journal Of Cardiothoracic Surgery (Mar. 06) that addresses the BAV/aneurysm conundrum:
Another surgical approach suggested for the management of BAV, associated with a dilated ascending aorta less than 5.5cm is to carry out AVR with wrapping of the ascending aorta. This method has a low morbidity and mortality rate and was seen to decrease the risk of further dilatation, aneurysm formation and dissection [54,55]. More recently this procedure has been carried out using an external support made to fit the patient's aorta. This was done using digital information from magnetic resonance images to make a replica of the patient's aorta and then computer-aided design to produce the tailored graft .
Sounds interesting...a custom made aortic "wrap." I wonder if this will be an option for me?
Saturday, December 20, 2008
It gets depressing that every time I go in some doctor finds another problem. Sometimes I wonder if I will ever become normal again.
Seems like OHS is so traumatic...does so much damage to your body, that it takes months, even years to get over it, if you ever do. The "cure" is almost as bad as the disease, it seems. Well, that's just fine.
Friday, December 19, 2008
Patients are more likely to spend time researching a job change (on average, about 10 hours) or a new car (8 hours) than the operation they are about to submit to or the surgeon who wields the knife.
“Today, medicine and surgery are really team sports,” Dr. Russell continued, “and the patient, as the ultimate decision maker, is the most important member of the team. Mistakes can happen, and patients have to be educated and must understand what is going on.”
“If we are truly going to reform the health care system in the U.S.,” Dr. Russell said, “everybody has to participate actively and must educate themselves. That means doctors, nurses, other health care professionals, lawyers, pharmaceutical companies, and insurance companies. But most of all, it means the patient.”
Thursday, December 18, 2008
I had other patients trying to cheer me by saying "just think you'll be able to walk to the shops or walk the dog again with this surgery". That may have been the case for them but I could have climbed Everest a week ago ! Now I'm out of breath having pulled my socks on ! What happened ...What happened? You were hit by a truck, that's what!
The other thing is the aftermath of surgery. Yes, having a diseased heart valve and an aortic aneurysm replaced is life-saving and should buy me a number of years, but it's far from certain that the quality of my life post surgery will be any where near what I'm used to. That's because of the kinds of complications people have after OHS. Yesterday I was reading about "TIAs" ( transient ischemic attack), which is like a mini-stroke, and full blown strokes that people get even if they are taking their coumadin and they have their INRs "in-range." Not good. Then you have to worry about getting endocarditis and careful with any invasive procedures like dental visits, colonoscopies, anything that breaks the skin. I read about so many valve surgery patients who must return to the emergency rooms at their hospitals with a variety of problems with their heart. Getting the surgery is no panacea.
Wednesday, December 17, 2008
The majority of those with BAVD have labile hypertension. Often their blood pressure goes up quickly under stress or when exercising.
I've noticed this phenomenon for some time now. My systolic pressure (the top number) goes way up if I go up steps or get stressed, like at the doctor's office. It makes it more difficult to get accurate measurements of what my resting blood pressure actually is. But that really makes no difference, because the goal is to reduce the blood pressure number both at rest and under exercise and stress so as to protect the aorta. That's why blood pressure management is so important in the treatment of bicuspid valve disease. I take my blood pressure two or three times a day. It's higher than recommended for people with BAV disease, so I'm sure I'll be placed on blood pressure medication before long.
Tuesday, December 16, 2008
Scott's situation makes it very clear to me that I must have my aortic aneurysm addressed at the same time my bicuspid valve is replaced. I'm sure that this will be the battle plan that my surgeon will suggest on January 6.
Monday, December 15, 2008
As of Friday, I began to come off of the jittery, panicky, drive to find out as much as I could by doing on line research. I'm pretty much over it now. Even my blood pressure is looking better these last few days. Unfortunately, I caught a bad head cold over the weekend. I started to feel it Saturday morning. Last night it was tough to sleep with the cold symptoms. I did get a walk in yesterday afternoon, which made me feel better. Our house is right across the street from Fairmount Park, so we enjoy daily walks with our dog Bradley. I actually do two walks most days: 2 miles in the morning and two miles in the afternoon. I only feel symptoms on exertion - walking up hills, steps, etc. If I do heavy exertion, I feel it in my chest, so my surgeon considers this "symptomatic." I'll continue my walking though, because I'm determined to stay in the best shape I can.
Sunday, December 14, 2008
I can't get over the fact that if it wasn't for my determination to take care of myself, I might be walking around today and not know about my condition. The whole thing started when I was 50. I didn't have to go in for that initial colon cancer screening, but I did. I had a polyp removed and that put me on the five year schedule for re-screening. When I was 55 I went in for another colon cancer screening. At that time the medical practice required that I have an echocardiogram first because of a heart murmur. When I had the echo, that's when I was told for the first time that I had a valve problem.
So I've been going for heart checkups since that time. My yearly echo this year showed significant progression of the valve disease. So I took it upon myself to get a second opinion - from a surgeon. That lead to the discovery of my bicuspid valve and aneurysm. One thing lead to another, and another, and another. But if I hadn't been proactive (I love that word!) about my own well being, I could still be in the dark about all of this, or worse, I could have colon cancer from an untreated polyp or dead from a burst aneurysm.
I've known people my age who refuse to go to the doctor to get checkups, etc. Many of them are ticking time bombs. It's no wonder people die at a relatively young age from conditions that could have been addressed, and their lives saved.
Saturday, December 13, 2008
Bicuspid aortic valve disease is more than a bicuspid aortic valve... Not everything is understood today, but enough is known to identify several major characteristics of this condition. BAVD includes the following:• Bicuspid aortic valve• Thoracic aortic dilation, aneurysm, or dissection• Labile hypertension (high blood pressure which changes quickly with stress or exercise)It may also include:• Mitral valve leakage• Coarctation of the aorta• Kidney or liver cysts• Near-sighted vision• Musculoskeletal degenerative changes (scoliosis, degenerative spinal discs, flexible joints, flat feet, etc.)• Aneurysm of smaller arteries, including head vessels (berry aneurysms)Not everyone has all of the listed characteristics. However, those diagnosed with a bicuspid aortic valve, who may have wondered why they also have high blood pressure, a leaking mitral valve, or poor eye sight, will recognize themselves in the definition above.
Well, that helps explain my nearsightedness. I've worn glasses becuase I am nearsighted since I was a child. I'm also struggling to keep my blood pressure at safe levels, and of course, I have the aneurysm. I'm grateful that I don't have any of the other characteristics and I hope I don't develop them.
There is a ton of great information here, including a page full of stories of survivors and tributes to those who did not make it. Last night I read the story of one young man who died in his 30s, leaving a wife who was pregnant at the time. He had a bicuspid valve and died of a ruptured aneurysm. It's a heartbreaking story but it's a testament to how insidious BAV disease is and how important it is to get screened if you have others in your family known to have bicuspid valves, or if you or other close family members have experienced unexplained chest pain.
The aorta is prone to dilation in people with bicuspud valves, and the the danger is that it can rupture, or "dissect," which means the layers can come apart and fill with blood. The Foundation is doing a great job trying to get the word out about this not well known and not completely understood disease. I went to another website yesterday, the Adult Congenital Heart Disease site, and I was surprised that they don't even list BAV as a separate congenital defect! I wrote them about this, and their president acknowledged that they probably need to address the problem.
Friday, December 12, 2008
My aortic valve has a different primary problem: stenosis. This means that it is stiff and calcified, and the opening is reduced in size so the heart has to pump much harder to get the blood through the narrower opening. I do have severe level stenosis for my body size. This often happens with bicuspid valves. This will trip the surgery wire, I believe. My aneurysm, while significant, in and of itself would not be enough to warrant surgery at this time. What they would do if I had only the 4.3 mm aneurysm is to manage it with blood pressure meds and monitor it carefully with surgery only if it grew fast or larger.
But people with bicuspid valve disease usually end up having the valve replaced when it becomes severely stenotic. In my case, when surgery happens I will have the valve replaced as well as surgical repair of the anuerysm. This is complex surgery that really can only be done at a major thoracic surgery center like the U of P, and by an experienced surgical team, so I'm lucky. In order to do this surgery they not only have to use a heart lung bypass machine, but for a time, hopefully less than 40 minutes, they have to stop everything and there is no circulation of blood through the body. They can do this by inducing a state of hypothermia...cooling the body down drastically. When everything is stopped, they replace the part of the aorta that has the aneurysm with a sewn-in dacron graft. Then when they're done they put the patrient back on the machine or re-start the heart. It's amazing stuff and the survival rate is very good.
Thursday, December 11, 2008
CONCLUSION: Although the clinical course of patients with a dilated ascending aorta is unpredictable, aortic events may occur even in patients with a baseline aortic diameter of less than 50mm. Therefore, preventative aortic surgery at the time of AVR should be considered to prevent aortic dissection or rupture in patients with an even slightly dilated ascending aorta with a diameter of 40 to 50 mm, unless the patient has a high operative risk or older age.
Well, my aorta is at 43mm. So if the surgeon decides it's time to do an AVR, this would indicate that he would also do aortic surgery at the same time. This is actually a relief to me - to find this abstract. That's because I don't want to have AVR one year, then have to come back later for another round of OHS! Or worse, to suffer through an emergency or die from an aortic emergency.
I doubt I'll have to argue the point with the surgeon. However, I need to understand my situation, know what I want done in terms of management, and be prepared with questions.
It's normal and human to have an emotional response to this kind of news, and I'm just like anyone else in that respect. The other day I wrote to a friend who has been very supportive. I told her about our weekend trip to Florida. Some of my emotions came through in that email:
"I did my first ever snorkeling in Key Largo over 30 years ago. I was still married to my wife then. We were in Miami for some sort of convention that she was attending. She was, believe it or not, a surgical nurse and assisted in open heart surgeries! Poor woman, she used to come home a basket case because back then in the early 70s so many more patients died. Anyway, going back out on that reef once again more than 30 years after my first visit was something of an emotional homecoming for me, actually. Well, I'm more emotional these days as you can imagine, and the trip to the reef triggered a lot of strong feelings and memories. I felt like it was the other bookend to my adult life in some respects, if you know what I mean. That hour I spent out there in the crystal clear, warm water enjoying all the beautiful fish and corals was just an indescribably intense emotional experience for me. I was so relaxed as the waves gently washed over me. I hated to get back on the boat when the hour was over. I'm hoping I'll get another chance to do something similar in the future."
Wednesday, December 10, 2008
So, it will be interesting to see what the surgeon says on January 6. My "numbers" are borderline, I think. According to The American College Of Cardiology/American Heart Association Guidelines :
In patients with bicuspid valves undergoing AVR because of severe AS or AR (see Sections 3.1.7 and 184.108.40.206), repair of the aortic root or replacement of the ascending aorta is indicated if the diameter of the aortic root or ascending aorta is greater than
If patients with bicuspid valves and associated aortic root enlargement undergo AVR because of severe AS or AR (Sections 3.1.7. and 220.127.116.11.), it is recommended that repair of the aortic root or replacement of the ascending aorta be performed if the diameter of these structures is greater than 4.5 cm (366).
So mine is a complicated situation. My AS is technically still in the moderate range with a valve area of 1.3 cm2, but adjusted for my body size it falls in the "severe" range (VAI = <.6). So, by itself, my valve problem is borderline by the numbers. My symptoms do not include the most serious manifestations of AV disease (dizziness and fainting,) rather I do experience exertional dyspnea and angina.
However, I do have a BAV and an aneurysm. Surgery is recommended to repair an anuerysm if the maximum diameter is 5.0 cm or more, or 4.5 cm if valve surgery is also being performed. My aneurysm is 4.3 cm, just under the recommended size for repair during AVR. Well, it makes no sense to me to have valve replacement surgery and not correct the aneurysm. Who wants to have to undergo another OHS later on to correct an aneurysm, or worse yet, experience an emergency related to the aneurysm?
So, what will the surgeon's recommendation be on January 6? Should I wait until the aneurysm grows and/or the valve stenosis gets worse, or more likely, both problems worsen? I could do that but that doesn't make a whole lot of sense to me either. I think that the combination of moderate to severe AS AND a BAV/aneurysm will trip the "surgery now rather than later" wire.
Therefore, my hunch is that the surgeon will recommend immediate AVR and ascending aneurysm repair.
Let's see if I'm right.
Tuesday, December 9, 2008
Here's the bottom line in a nutshell:
In general, patients with mild-to-moderate valvular dysfunction and normal left ventricular (LV) dimensions and function should be monitored by echocardiography at regular intervals. Aortic valve replacement is indicated for severe valvular dysfunction, symptomatic patients, and/or those patients with evidence of abnormal LV dimensions and function (Table). Because many of these patients will require cardiac surgery during their lifetime, early referral to a surgeon with experience in aortic valve surgery is recommended.
Basically, once someone is diagnosed with BAV, then "early referral to a surgeon with experience in aortic valve surgery is recommended."
In my case the good news is that I believe the the disease was diagnosed before it has progressed too far but only because I elected to seek out a surgeon on my own. My "numbers" are borderline severe: valve area 1.3 cm2 (technically "moderate" but "severe" - when adjusted for my body size - valve area index = .55); aortic dilation of 4.3 cm - which is in the range that can trigger surgery:
Aortic dilation should be carefully monitored by echocardiography21 and aortic root replacement recommended more aggressively for patients with BAV24 with aortic dilation (ie, 4 to 5 cm) than for those of patients with tricuspid valve (ie, 5 to 6 cm).
So, there's the scoop. I'll have my CT angio chest and see the surgeon again on January 6. To me it looks like all that is left to be done is to the set the date for surgery and select the valve prosthesis. I'll have to ask the surgeon what his plan is to deal with the aortic aneurysm.
Monday, December 8, 2008
The nature of valve disease is such that it can cause frustration. Here I was in the water as active as anyone else on the boat, yet I have a condition that could kill me if left untreated, and will probably force me into the operating room early next year. It's a peculiar situation to live with. Basically, I can almost do anything I ever could, except for heavy exertion like running and heavy lifting. And I don't feel mortally ill. But I am.
Now added to the mix I find out that I have a bicuspid valve. Well, the literature is full of descriptions of the problems that causes. Mine is congenital, and what happens is that these malformed valves degenerate. I'm lucky to have made it to 60 with mine. Lots of people have to have surgery when they're a lot younger...in their 30s or 40s. One of the problems associated with bicuspid valve disease is aortic dilation (aneurysm,) a serious condition that is potentially fatal if not caught and treated. My aorta is dilated. So I have the double whammy: aortic valve disease plus an aortic aneurysm.
Yet, I'm still out there doing most everything including walking four miles a day, which is actually good for someone with my diagnosis. But the situation is mind boggling when you think of it.
My surgeon was right: I have a bicuspid aortic valve that the cardio missed, AND I have a dialated aorta.
And that is a horse of a different color, to say the least!
Sunday, December 7, 2008
Saturday, December 6, 2008
Friday, December 5, 2008
"There are several good reasons to start the Surgeon Selection Process early:
1 - To avoid having to select a surgeon from a gurney in an ER somewhere which will greatly limit your choices, i.e. to some surgeon who operates at whatever hospital you landed at and who has an opening in his schedule.
2 - You may want to interview more than one surgeon to find someone you 'feel comfortable with', i.e., so that you are 'prepared' when the time comes.
3 - To have the Timing and Type of Surgery defined by the guy who will actually be performing the operation. The job of your Cardiologist is to make a diagnosis and recommend a treatment plan. Medications can 'postpone' surgery (but may allow damage to progress). Only a Surgeon can FIX a valve problem (i.e. Repair or Replace a defective valve). IMO, Surgeons have a better perspective on WHEN to proceed for the Best Outcome.
4 - It would not be out-of-order for you to ask your Cardiologist for his recommendation of surgeon(s) for you to interview. Just tell him you want to "Be Prepared" beforehand. If he resists, you can do your own search. You will need copies of your Echocardiogram and Angiogram (Cath) Test Reports AND Films / CD's / DVD's. Doctors and Hospitals are required to provide those to patients by law. They may charge a copying fee, but usually waive such charges if it is going to another Doctor. You will need to sign a "Medical Release form"."
Thursday, December 4, 2008
I'm enjoying my walks still and yesterday afternoon I walked my two miles at a fairly quick pace. I am breathing harder than I should have to but except for that I feel pretty good. There's the rub. If I'm told the time has come for surgery and I'm still feeling pretty good that makes it tough in some ways. It would be easier to go into surgery if I had severe symptoms, but that would mean damage had already been done to the heart. So I'll listen to the recommendation of the surgeon when i see him on January 6.
Wednesday, December 3, 2008
So, is it time for surgery?
Here's one fellow's story as posted on heartvalvereplacement.com:
I had a murmur detected at about 13 years old. I remember AORTIC REGURG. being used as well as slightly enlarged. Then I was told "SOMEDAY" I would need AVR.That was 30 years ago. FF to April 08 when I was NOT OK'd for a police job because of SEVERE AS/AR. An echo said the area was 1,2cm2 but could be less. A cath said it was really .8-.9cm and I was handed a card for a surgeon and told I have an appointment. SOMEDAY was 07-09-08. I thought I was not symptomatic but I guess I really was. I'm NOT in that bad of shape to be "HUFFING AND PUFFING" on the hills I was walking up. Heck, I'm only 43! I had an ON-X Aortic Valve put in and, while I am not at any ball games, I do feel LOTS better. I started back to work yesterday and although I am not out chasing bad guys, I am back. I feel a bit more normal each day. It won't be long till I an 110%. That's about it. Don'twait too long. I hear that the best results come before patients are symptomatic.
Tuesday, December 2, 2008
I decided to swim out to the sand bar with my scuba mask and snorkel on. The swim out was slow and easy. There were jellyfish in the water but I could see them and avoid being stung. I got the sand bar and stood there briefly before heading back toward the beach. On the way back a couple of larger waves broke over me and flooded my snorkel. I cleared the snorkel and continued swimming but I began to get a little panicky, fearing that I would be unable to make it back to shore. My heart started racing. I felt the sting of a jellyfish brushing my arm. I began swimming harder, harder than I was used to.
Finally, I made it back to shore, but I was tired, out of breath, and I had chest tightness which extended into my left shoulder. I had angina. Rather than sit down and rest I thought I would feel better "walking it off." So I put Bradley on his leash and took a slow walk down the beach. After about 45 minutes the angina went away. But for the first time I realized that I now had significant physical limitations as a result of my aortic valve condition. The level of exertion that reached during my swim back to the beach had triggered angina. People with moderate to severe AS should not exercise at that level.
Monday, December 1, 2008
I knew even as a child that I had a heart murmur. No one seemed to think it was serious and no one ever recommended that it might be a good idea to keep an eye on my heart as I grew older. The other day I remembered going to a doctor maybe 15 years ago and complaining about the pounding in my chest. He didn't think there was anything wrong with me, and maybe there wasn't at the time. He just advised me to drink decaffeinated beverages. He didn't recommend any heart monitoring. Perhaps he should have.
When I found out in 2004 that I have AVD, I was still jogging. I remember I could jog for 20 or 25 minutes and then finish off with a sprint during the final minute. Even after I got the diagnosis I could still jog, and did so three times a week to prove to myself that I was all right in spite of the AVD. But by 2005 I found that I couldn't jog anymore. When I tried jogging I got an uncomfortable feeling in my upper chest - lower throat area, a tightness that felt like my head was going to blow off.
I saw a different cardio in January of 2006 for a second opinion, and I told him about this. We did a nuclear treadmill stress test then, but it was negative...at least the cardio made no diagnosis based upon the results of that test. My AS was still technically "mild" at that time, in all probability by the numbers, so he was probably looking for any evidence of CAD. However, I think the sensation I was experiencing at that time was related to my AVD. I may have been further along with the AS adjusted for my size even then, and he missed it.
So I now believe that this strange uncomfortable feeling, this tightness that I get is angina related to my AS. And I've been experiencing it since 2006. Angina, "chest pain," comes in many different flavors. It's not simply a sharp or dull pain. On of the best descriptions of angina I've ever read was posted by a fellow named Bob on the Heartvalvereplacement.com website with emphasis added by me:
Many people have angina and don't realize it. The classic is the left arm, left shoulder/back, or left-side-of-chest pain. However, it can also show up as a feeling at the top of your lungs like you've been breathing cold air, or a feeling like a lump in your throat, a tightness across the chest, or just a slight throat tightness. It can show up solely in your back, or be confused with heartburn issues. Or you can feel it as neck or jaw pain (this is especially common in women).It may well show up when (or just after) walking uphill or up stairs, although not necessarily every time you do it. It's often not the dramatic, agonizing pain that is portrayed on TV shows, but more of a lower level discomfort or an uncomfortable tightness. It can also show up at the end of the day, with you becoming aware of it when you first lie down (especially if you flop down after climbing stairs). You may also become aware of palpitations, which are misbeats or arrhythmias, in the evening when you are quiet. They tend to get worse as you approach surgery, and visit you in the darkness at night, when your spouse is asleep, and you are alone with the shadows on the ceiling. They tend to bring some sense of panic with them, which makes you more aware of them,and can generate a bad, endless-loop cycle when you most need sleep.
This is the most comprehensive description of angina that I have ever seen. Bob has it just exactly right. His comments on palpitations are spot on also. The bottom line is that I've had angina for a couple of years now, and palpitations for may years that have gotten worse particularly over the past year. During the past year, the palpitations have become so strong at night that I can't lie in bed on my left side or on my back for long. I have to sleep on my right side only.When you put this all together, symptoms for two years or more now, severe AS, adjusted for body size...well, I didn't get to the surgeon a minute too soon, it appears. It will be interesting to see what he recommends on January 6.
Your VAI is your valve area in cm2 divided by your body surface area. In my case, as of my echo in August my AVA was calculated at between 1.1 and 1.4 cm2. My current body surface area is 2.35 m2. Plugging these values into the formula I come up with a VAI of between .468 and .595. According to the guidelines, anything less than 0.6 indicates severe AS. Even if I was at my ideal weight of about 200 (I'm 226 now), my VAI would still be severe or borderline severe at between .49 and .625. I'm a little fuzzy on what the surgeon said exactly, but t was something like they want to do the surgery when the number goes below .5.
Where is that latest echo report copy from November 20th? I sure hope I get it this week.
Sunday, November 30, 2008
The other thing that is good for the heart is walking. I do two walks a day most days, 2 miles each. We're lucky to live right near Philadelphia's Fairmount Park. The park features beautiful walking paths along the Schuylkill River. On the lower path heading South, called the Schuylkill Banks, I get the added attraction of seeing real trains many days. The CSX freight train line also runs along the river, so I can get my train fix while I'm walking. All good for the heart.
This week I hope to get a copy of my latest echo, the one that was done the day I saw the surgeon. Needless to say, I am very anxious to get this report so that I can compare it to the one done last August to see if there has been any noticeable progression of the AS, and to see if the tech found anything else during his comprehensive exam.
Saturday, November 29, 2008
People manage their health (or don't manage it!) in all sorts of ways. I've always tried to be out in front of any potential health issues. I get regular annual checkups, and go for tests when needed no matter how "thrilling" they are. I've had a whole battery of tests related to kidney function because I have a condition called hematuria: blood in the urine. Turns out that this is something that is natural for me..."ideopathic." I've also had routine colonosopies since I had a benign polyp removed at age 50. So I'm the type of person that stays one or two steps ahead of any potential health problems.
However, the heart valve disease situation presents a new challenge for me, because the issue of when to have surgery, the "timing" is tough to determine. That's why I was so happy when my surgeon told me that he "knows when to pull the trigger." Obviously, you don't want to have surgery too soon because why risk a surgical procedure and suffer the pain if you don't have to. On the other hand, there are risks associated with waiting to have surgery to correct valve disease, including damaging the heart permanently, or even death. There's a continuum from one approach to the other; waiting vs. having the surgery. I went to see a surgeon to get help making this call.
The difficulty in assessing symptoms complicates making the call relative to when to have surgery. If a person has been diagnosed with severe AS and has fainted, been dizzy, short of breath, or has chest pain, then surgery is indicated, according the the AHA guidelines. However, in my case, what if the "numbers" are only in the moderate range (potentially severe adjusted for my size,) and I have not had any episodes of fainting or dizziness (yet,) only some chest tightness (angina) on heavy exertion and some shortness of breath when I exercise, climb a hill, or go up a flight of steps? Then the picture is murkier.
I gather that's why my surgeon has ordered a CT scan and chest X-Rays...to get a fuller, more accurate picture of what's happening than provided by just the echos alone. The CT scan will, I believe, provide information about the aorta, the valves and the coronary arteries. So when I go back to see the surgeon on January 6, we'll be armed with a lot of information and be in a better position to make a decision about surgery. That's my hope anyway.
It's pretty clear that I will need heart valve surgery. Only the question of when remains to be settled. This is the uncertainty that anyone who has been through this will tell you is worse than the surgery itself: the waiting. I was first diagnosed with AVD almost five years ago, but only this year did things get worse. However, there's an old saying in valve patient circles: "The worse things get; the faster things get worse." Again, that's why I went to the surgeon...to get his take on things.
I'm sort of making a defense, I guess, of my decision to seek a surgical consultation. I could have followed the cardio's advice: "See me in a year, unless," with the unless being if I developed severe symptoms. But there's the rub. I don't want to wait until I faint...are you kidding? Or, collapse like an acquaintance did on his sofa, nauseous, grey colored, and sweaty, ending up in the ER. I'm not made that way...I want help BEFORE I get to that stage.
Also, it's extremely difficult to convey your symptoms accurately to medical personnel because you don't really know whether what you are feeling is as a result of heart valve disease, being out of shape, etc. I tried like hell to be as accurate and honest as I could when I was interviewed by the surgeon's RNP, and in my responses to the surgeon himself. I believe he knows pretty well exactly where I am on the continuum. When he gets the CT scan results he'll be able to make the call, one way or the other. If I were a betting man...well, I wouldn't bet on this either way because there are just so many uncertainties. That's the nasty situation that I'll be living with at least until January 6.
Friday, November 28, 2008
"In large patients, a valve area of 1.0 cm2 may be severely stenotic,
whereas a valve area of 0.7 cm2 may be adequate for a smaller patient."
Large Patient? That's me..at 6'5" and 226 Lbs. My valve area in August was calculated at 1.1 to 1.4 cm2 and closing fast.
"studies indicate that some patients exhibit a decrease in valve area of 0.1 to 0.3 cm2 per year; the average rate of change is 0.12 cm2 per year."
I lost between .4 and .7 cm2 between 2007 and 2008...I'm on the express track!
"After onset of symptoms, average survival is less than 2 to 3 years"
I have symptoms...angina on exertion, occasional shortness of breath, palpitations all the time...I HAVE symptoms...even my surgeon says so. Evidently the clock is ticking...evidently.
"Sudden death is known to occur in patients with severe AS but has rarely been documented to occur without prior symptoms."
Well, I know about the possibility of sudden death, but my surgeon, Dr. Bavaria reassured me last week that I was not at much risk...yet.
"many physicians perform an annual history and physical examination on patients with mild AS. Those with moderate and severe AS should be examined more frequently."
Yes, that's what I figured when I found out in August that my AS had progressed to moderate. And that's one reason why I decided to seek out the opinion of a surgeon.
"Patients should be advised to promptly report the development of any exertional chest discomfort, dyspnea, lightheadedness, or syncope."
Of course, but you have to be shocked out of denial first and understand exactly what these symptoms are!
"If the clinical and echocardiographic data are typical of severe isolated AS, coronary angiography may be all that is needed"
And that's what Dr. Bavaria ordered for me.
AND THE WINNER IS:
"AVR is indicated in virtually all symptomatic patients with severe AS."
Thursday, November 27, 2008
When I got copies of my echocardiograms from 2007 and 2008, and looked at the numbers I realized that if the rate of progression of the stenosis continued unabated, I would quickly fall into the severe stenosis category. I could develop severe symptoms at any time. Not content to wait for the onset of severe category symptoms, I resolved to talk to a surgeon. My primary question would be about the timing of surgery: should I wait for the onset of severe category symptoms? I am fortunate to live near a major heart center, the University Of Pennsylvania Hospital. An acquaintance who had AVR had given me the name of his surgeon several years ago. My own research confirmed that this surgeon Dr. Joseph Bavaria, is a well known and highly respected practitioner, so I made an appointment to see him. Yesterday ( November 20) I finally met with Dr. Bavaria. I gave him copies of my echos. I was highly impressed with his “take charge” approach to my situation. He reassured me from the start: “We’ve got a handle on your situation,” and answered my primary question before I even had a chance to ask him: “We KNOW when to pull the trigger,” he said - and he actually used those words. Who in the waiting room doesn’t want to hear that? What a big relief already. He explained that although my “numbers” where technically still only in the “moderate” range, because I’m a “big guy” (I’m 6’5” and weigh 228) my stenosis could already be effectively severe. I had not encountered the whole body area factor in my own research. He did some valve area calculations with his nurse practitioner that I did not understand. The bottom line is that, with the recent quick rate of progression of the stenosis, it may be time for surgery already, especially if there is any coronary artery blockage requiring grafts. That would be a sure “trip,” meaning surgery immediately, he explained. He suspects that the valve is bicuspid, contrary to previous echos, and there is the possibility of an aortic aneurism. He ordered a series of tests: echo; CT Angio chest; chest X-rays; blood work including Coumadin and Heparin related tests; EKG, etc., and set a follow up for one month, so I’ll see him again in late December. I had the echo right after my visit with Dr. Bavaria. Echo techs aren’t supposed to tell you anything, but I did watch the screen and he was quite conversational. We both saw some sort of mass on one of my aortic valve leaflets. “Could that be calcium?” I asked. “Could be,” he responded. Seems like I did all this not a moment too soon!
So, for those in the waiting room, take note the stark difference in the two approaches here. My cardiologist advised me to come back in a year unless I developed severe symptoms. The surgeon is much more proactive, ordering additional tests and considering the possibility of surgery in the short term. It almost seems to me like once a cardiologist finds moderate or progressive stenosis, he ought to consider his job done and refer the patient to a surgeon. For those “in the waiting room,” the advice of Al Capshaw and others is spot on, it seems to me. Only a surgeon can cure valve disease. If you want to know when to “pull the trigger,” see a surgeon.
This morning I was doing some research on bicuspid aortic valves. If you have a bicuspid valve, usually that's a sign that you will have some heart issues at some point in your life. A lot of people don't know that they have one because it's not easy to detect. As of today I still don't know whether or not I have a bicuspid valve. My cardio wrote on an echo report at my valve is tricuspid. However, my surgeon told me that he thinks it is actually bicuspid and that this was "missed." The fact that I've always had a heart murmur is another indicator, it seems. It's important because if you have a bicuspid valve and you develop valve disease there is a likelihood of associated disorders, primarily problems with the aorta known as aneurysms. These can be deadly in and of themselves. In the literature you can read references to people dying of a "heart attack," while what they probably had was an aortic aneurysm. It's scary stuff, but no sense avoiding it, so I'm researching it.
I suspect that once I get a copy of the echocardiogram done at the hospital last week I'll have a much better idea where I stand. The tech was very thorough including using the transducer under my chin and throat to look down at the aorta. That echo report copy can't come soon enough!
Wednesday, November 26, 2008
“Any chest pain, dizziness, fainting, or shortness of breath?” This had been the first question the cardio asked me last August. “No, none.” I replied. But actually, in retrospect, that was an incorrect answer. What exactly is “shortness of breath” or “Dyspnea?” Here’s a medical definition: a feeling of difficult or labored breathing that is out of proportion to the patient's level of physical activity. I wish I had looked that up a long time ago. I’ve been huffing and puffing for a long time now. Climbing a few steps, or walking up a slight hill causes me to pant. That is labored breathing which is out of proportion to the level of activity. After all, until sometime in 2005 I had been jogging three times a week. I stopped, not because I wanted to but because I simply couldn’t do it anymore. I asked one cardio about this and he blamed it on my getting older and putting on weight. That was wrong. In retrospect, I now believe that the valve problem was the reason I couldn’t jog anymore. I was becoming symptomatic as a result of progressive aortic valve disease. But I needed help assessing my own symptoms – help that was not forthcoming.
We had just moved to Long Island in early 2004 when I found out about my AS (aortic stenosis.) The move went sour pretty quick. I hated Long Island. The winter of 2004 was one of worst they had seen in years…cold and wet. Moving to Long Island looked like a good idea on paper. We would be closer to New York City and right across the bay from our summer house on Fire Island. But it didn’t turn out well. The house was one problem, The basement flooded all the time when it rained. I couldn’t set up my toy trains or my workshop. The roof leaked one day. Living in suburbia was another shock. I really felt isolated. I had no idea I was such a city boy. I became seriously depressed. I started selling off prized trains from my collection in a panic.
Then I got the news about the heart problem. How on earth would I handle this with our medical care based back in Pennsylvania. I thought? I pleaded with Dan to move back to Philadelphia. He resisted this idea at first, but finally he came around and we decided to put the house up for sale less than six months after moving into it. We managed to find a buyer the day before the contract with the realtor was to expire. We made a few trips back to Philadelphia and finally found a nice house about a block from where we used to live. I felt like Dorothy in the Wizard after we moved in: “There’s no place like home.” In retrospect, the move was a mistake, but at least we tried it and don’t have to live with the burden of wondering “what if.”
Tuesday, November 25, 2008
“You have a problem with your aortic valve,” he said. It turns out that the murmur was no real concern. What was happening was that my aortic valve was becoming calcified. The condition was mild, the cardio told me. It happens to some people when they age. It might stay the same over time, get no worse, and present no problem, or it could get progressively worse. There was no way to predict what would happen. There was nothing much to be done, it wasn’t diet related, etc. It just happens to some people as they age. “Come back in a year,” the Doc said. So I left the office with a new problem that I didn’t have when I walked in.