Rich's Heart Valve Journal

I saw the cardiologist at Wake Forest Baptist Hospital that participates in the TAVR clinical trial for low risk patients. So far so good. He thought that TAVR and a stent were a good option for me. I have some heart discomfort from time to time, but he doesn't consider that angina, so I am still symptom free. Another echo scheduled for June and follow up appointment in August, unless I start having symptoms before that.

I've also got a CIMT (Carotid Intima Media Thickness) test scheduled for next week. This is something I did on my own. CIMT is an echo of the carotid artery to see how much plaque is in carotid artery and how much is "hot" plaque. There is a very high correlation between plaque in carotid and in heart arteries. It is often used to see if diet, lifestyle, and medical treatments are controlling and/or reversing plaque buildup.

Note: I learned in January I had 70%-80% blockage in a couple of heart arteries. I am trying to get that under control before having my aortic valve replace. I think the heart rate is increased during tavr, so there is likely extra pressure on arteries during the procedure.

When I had my cardiac cath, they determined I had arterial blockage and would need either stents or bypass surgery in addition to a new aortic valve. My current cardiologist is not of any help in trying to reduce blockage through diet.

On my own I have taken the Cleveland heart Labs inflammation panel, oral glucose tolerance test, and an advanced lipid panel. So far, all tests are coming back saying low risk for cardiac disease. I'm going to schedule a calcium heart scan, but other than that I am out of ideas.

I have about 3 months before my next appointment. Can anyone recommend a cardiologist that has been willing to work with them on diet and lifestyle changes? I realize the valve has to be replaced, but I do not want to have either stents or bypass surgery if at all possible.

Stents don't seem to be a good long term option and I am hoping to have TAVR, which is out if I have bypass.

Thanks

I woke up with my heart trying to pound out of my chest (3 times last night). The 1st 2 times, as soon as I woke up, my heart starting returning to normal. The 3rd time, about 5 am, it took about 5 minutes for the pounding to stop, but my heart rate wouldn't come down.

So I went to ER. They ran blood tests, did EKG, did chest x-ray, examination and then 3 hours later repeated everything but x-ray. All the tests came back normal, so after 6 hours they released me. Makes me kind of worried about going to sleep tonight.

I am in a wait state for valve replacement. They found some blockage during cath, but don't think it is urgent, so scheduled me for follow-up in 5 months. I feel abandoned,

I think I finally understand these parameters.

Aortic valve area - I'm assuming this is the opening. The larger the better, and the smaller the worse.
Aortic Jet velocity (or Maximum velocity) - the speed of the blood through the aortic valve. As the AVA gets smaller, it's likely the velocity will increase to try to get the same volume of blood through the valve.
Mean aortic gradient - in general this just means it is going to take more pressure to force the volume of blood through the valve.

"How do you determine whether your patient’s aortic stenosis is deemed severe? Severe aortic stenosis is defined as valve area < 1.0cm2, mean gradient > 40mmHg or jet velocity > 4.0 m/s. Symptoms of severe aortic stenosis include shortness of breath, syncope, presyncope, angina, fatigue, difficulty when exercising, swollen ankles and feet, and heart palpitations.2"

My recent echo uses the term aortic valve max velocity (m/s).

Is this the same as Aortic Jet velocity (m/s)?

Does anyone know of any good sites for arterial calcification/blockage? I'm trying to find current info on reducing blockage through diet, exercise, etc. and would like to find a live message board with lots of participation. So far, I haven't been able to find anything.

I wonder why they don't send us to cardiac rehab if we have arterial calcification before we get to the point we need surgery?

I had my cardiac cath on Wednesday and my cardiologist and cardiologist that did the cath told me I needed either stents or bypass surgery plus aortic valve replacement. My cardiologist then sent me for an echo.

I just got a message from my cardiologist that they discussed my case at the Friday meeting (today) and decided:

"Because you do not have any heart symptoms presently, we advise no surgery or procedure for your aortic stenosis and coronary artery disease."

They want to wait until I have symptoms before going further.

That works out great for me because I hope to enroll in the UNDO IT program https://www.ornish.com/undo-it/
It won't reverse valve calcification but it might enable me to skip the stents or bypass surgery. The program is covered by some insurance policies and by Medicare.

My Trip to Duke for Cardiac Cath

My sister drove 5 hours to babysit me and provide support, and then make sure I got home OK. She was a trooper.

We planned to leave my home about 4:45 am to make sure we arrived at Duke by 6:45. This gave us an extra 30 minutes in case of any problems. That was good, because the day started with a big problem.

We were taking my sister's car, so I walked out of the house without my wallet or keys. That meant I was locked out of the house and had no ID or Medicare card for registration. I tried calling the Duke cath lab after hours number to see if I would be turned away if I didn't have ID. Someone did answer, but when she transferred me to someone who could answer the question, the phone just rang and rang.

I neglected to say I went to get my spare key from it's hiding place and it wasn't there. I must have used it in the past and forgot to put it back.

I keep the house locked up, so I knew there was no possibility of a window being unlocked. I finally decided to break out a window and picked my bedroom window. I used my flashlight to try to break the glass and was able to break the storm window, but not the inside window. My sister had a small hammer in her car and that smashed the window easily.

I removed as much glass as I could and tried to get through the window. It was a little too high for me to leverage myself through, so I flipped my wheel barrow upside down and used that as a step. Remember it is completely dark and we are just using a flashlight.

I had a leather jacket on, so I felt reasonable protected from the glass pieces that were still in the frame, and my adrenalin was pumping. I got partially through the window and the night stand was in my way. I tried to push it out of the way and as it moved, so did I. I slid face first through the window onto the floor.

Once inside, I was able to lower the top storm window to the bottom and provide fairly good protection from the elements.The top window was still whole and sliding the storm window down gave me a window pane on both the top and bottom. I got my keys and wallet and we hit the road.

I had checked my heart rate and BP before leaving the house and both were quite elevated. Even though I don't feel nervous or anxious when seeing a doctor, I always get white coat hypertension. I had a finger monitor for heart rate so I put that on to see how bad my HR was on the drive. My HR stayed around 100 for most of the trip. An interesting thing I learned was getting stuck behind a truck raised my HR by about 5 points. Really interesting to see how dynamic HR is while driving.

We get to Duke about 6:30, so 15 minutes to spare – at least I thought we had 15 minutes. The circle in front of the hospital where you drop off the car for valet parking was jammed. I parked in a no parking space and went to the valet booth. I was told they didn't have any drivers available right then and they would get to me as soon as possible.

We decided to park in the parking garage and walk to the hospital. We got to registration right on time. The extra 30 minutes worked out perfectly. Within just a few minutes we were in the cath prep area and a nurse was with us. Normal prep for a couple of hours, I was in good spirits and felt good.

In my previous post I went over the cath. No surprises or problems there.

Back to the prep area, which I guess now is considered recovery. I was told to lay still for 2 hours, keep my legs straight and not lift my head. Here's where things starting going bad.

I had to pee, at least I thought I did. I made it for an hour, but then I told the nurse I needed to use the bathroom. She wouldn't let me out of bed, so I got a urine bottle. I moved my legs and raised my head and did my best. Unfortunately, this was an urge rather than the real deal.

What I think happened is the cath caused enough inflammation in my bladder and prostate to block the uretha. I had the urge to go every 15 minutes, so every 15 minutes everyone left the room so I could try to go.

About this same time my BP and HR starting going up. During the cath, both had come down considerable from what they had been earlier in the day, and for the 1st hour in recovery they were OK. Eventually the nurse noticed how high BP and HR rate were and we discussed it. I have seen these type of numbers before and in the past, they always came down after a few hours. I took a half dose of BP med to see if that would bring it down.

At 12 noon, my 2 hours were up and I could walk to bathroom. I still had to go every 15 minutes, but had little luck voiding my bladder. Since I have had this happen before, I didn't even think to tell the nurse I was unable to void my bladder.

My cardiologist and cath cardiologist both came to talk to me. They found blockage during the cath they said needed to be addressed with either stents or bypass. My options were either bypass and valve replacement (SAVR) or to continue to try to qualify for TAVR trial preceded by stents.

When I tried to discuss this with them, I realized my brain wasn't working very well. It was like I had been sedated, but I hadn't. The discussion didn't go very well. They scheduled me for an echo that afternoon. So I was ready to be released about noon from cath, but they kept me until about 2 pm when I was wheeled to echo.

I explained to tech doing the echo that I had to pee every 15 minutes, so could she accommodate me? She was great. She got me another urine bottle and just said to tell her when I needed a break. At least now I was only having to go every 20-25 minutes. I have had 4 echos previously and this one was by far the best. I don't know if it was equipment or training or both, but the detail was far beyond any of the other echos.

I forgot to say I “borrowed” the urine bottle from cath recovery area, because I thought it might come in handy on the drive home!

After waiting what seemed a long time, probably about 15 minutes, someone showed up with a wheel chair to take me to patient pickup. I had tried explaining I had already been released by cath, hadn't had any sedation, and there was no reason I couldn't walk out, but they said no. I was within about 2 minutes of walking out when they showed up with wheel chair.

Made a pit stop and waited for my sister to pick me up. The entrance/exit to the hospital is a circle. The circle was completely jammed so that cars trying to get into the hospital were backed up into the road and blocking the cars that were trying to get out. Finally my sister was able to get to the pickup area.

I climbed into the front seat and we just sat there, traffic totally stopped. We moved maybe 10 feet and stopped again. I already had to pee again. I got out of the front seat and got in the back set. I was wearing sweat pants, so I was able to work the urine bottle into the leg of the sweat pants. I threw my coat over my lap and attempted to go. It was the attempt to go that gave me relief for about 15 minutes.

We eventually got out of the circle and the drive home was uneventful. I left the urine bottle in my sweats, so I could go whenever I had the urge.

I hadn't eaten anything all day, wasn't hungryl, and had only a few sips of water. Since I still couldn't empty my bladder I was reluctant to drink anything when I got home. I was miserable and told my sister if I didn't feel better in an hour we might have to go to ER.

I took some supplements that help with BP and a couple that help with prostate. I took a Flowmax which is a med guys take for urinary problems. I have a prescription, but rarely need it. I also took my nightly BP med. I also decided I needed to drink some water so had a bottle of spring water.

I had no pain at all from the cath, but worried that maybe I was having a reaction to the dye used in the cath or the stuff they used in the echo. My entire lower abdomen/groin area was swollen and felt like it would explode. I even failed an enema.

About 45 minutes to an hour after taking the meds and supplements, I felt a little better. My HR when we left the hospital was about 120 and on the drive home it dropped to about 110. After 3 hours at home, I was finally able to pee and my heart rate was in the high 90's. I drank more water and some juice and went to bed.

Rechecked HR and it was now in high 80's. Lots of urgent bathroom trips during the night, but no problem voiding. By morning I felt good, urination was back to normal, and HR was in high 70's.

Didn't check BP until late in the day, but it was just a tad high at about 130/80, so no problem there.

I'm pretty sure what caused this was the trauma from the cath procedure including the pressure applied to stop the bleeding at the end of the cath. When the cath is done through the leg, they are working fairly close to the prostate and bladder. I have an enlarged prostate and when it gets inflamed it pinches the urethra causing urinary blockage. If I have another similar procedure, I will ask if it is OK to take a Flowmax and supplements for prostate before hand.

Just had my cardiac cath yesterday. This entry is just about the procedure and I will make another that is about my day.

Got to Duke and registered at 6:45 am as scheduled. The next 2 hours were dressing in hospital gown, having IV line installed, answering questions, signing a couple of papers. I met with PA and doctor who was performing cath. Then into cath room.

I had decided my preference was for wrist entry and no sedation, but made clear this was my preference but I would leave it to the doctor to make the call. He was fine with no sedation but said that leg entry would be better in my case. I am also hoping for TAVR so this would allow him to make sure leg entry was adequate for TAVR.

For the procedure, you lie flat on the table and your view of the procedure is blocked. I was able to see the monitor, so I could see how my blood pressure and heart rate were during the procedure.

I chose not to have sedation, so there was just the numbing agent to deaden pain in the leg. I experienced 2 or 3 sharp pains, but they were each less than 1 second in duration, so no big deal. I think one was when he inserted the catheter into the leg. I tensed up without even noticing and the doctor said to relax, which I did, and he continued with no more pain. Again, this was a quick pain that was over immediately, so nothing to be concerned about.

A few times the doctor asked me to hold my breath. It was never more than 10 seconds, so this shouldn't be a problem for most people.

I tried several times to see if I could feel the catheter going up my artery into my heart and felt nothing. The only pain or pressure I felt was at the insertion point and none of it was scary.

At the end of the procedure the doctor will apply pressure at the insertion point to help the blood clot. I found this somewhat uncomfortable more than painful. After a few minutes he turned that job over to one of the assistants.

At the very end was the most painful part of the procedure - removing the adhesive pad off my stomach. After a few tries at using something to break down the adhesive and me grabbing his arm because it was painful, he pulled it off in one shot. I thanked him. I don't know why they hadn't shaved this area.

Since I hadn't had sedation, they were ready to release me 2 hours after the procedure, so 12 noon. I have had no pain at all from the procedure and haven't needed to take Tylenol or anything else. Right now it is 24 hours since the procedure and except for the bandage, which I am about to remove, nothing that indicates I just had the cath.

I did have some problems that I think were related, at least somewhat, to the procedure, and I will discuss them in a separate post. These were specific to me and wouldn't effect most people.

Getting my cardiac cath done next Wednesday. My brain seems to have disengaged from my body - like my brain is one person and my body is another. My body is getting the cath and my brain doesn't seem very concerned. Strange, but it keeps my from worrying.

Getting closer to being accepted into TAVR trial. Next step is cardiac catheterization.

Can someone walk me through the recovery process after catheterization? About how many hours in hospital before being released and could I drive myself home?

I may have been too quick to celebrate my blood pressure going down after I switched to a whole plant diet. I didn't realize that worsening aortic stenosis also can cause systolic pressure to go down. I've had a couple of light headed spells in the last couple of days when systolic dropped to near or under 100. From what I have read, having a dramatic drop in BP is common when switching to a plant based diet, so I think that is what is causing it, but I still need to watch it.

Expect to learn this week if I have been accepted into TAVR trial. I think my biggest problem is that some of the measurements from echo indicate severe AS and some moderate. I just had the TAVR CT scan so I think my cardiologist must think I am a good candidate.

One problem, at least it seems to me to be a problem, is that once you start down the road with one heart hospital, it's hard to change. I'm willing to go anywhere in the country to have TAVR, but since I am considered a low risk for surgery, I have to get accepted into a trial. Medicare only pays for intermediate and above risk levels.

So there is the possibility that one heart hospital turns me down, but another may be participating in a different trial where I might qualify or use different criteria to select patients for the trial.

That would be a nice service to add to this site, but it would take a few volunteers to manage it. I recently had 2 heart centers give me different info on the same trial. I emailed the trial coordinator who replied back and it turns out both centers had given me incorrect info.

Over the last few years, I have moved from a low carb, high fat (lchf) diet to a low fat diet that still included eggs, some low fat dairy, and some fish and seafood. I saw some improvements in health, but not as much as I hoped for.

A little over a week ago I went all plant based, whole foods. No more dairy including eggs, no more oils including olive oil, no more fish or seafood, and no more salt. It has been much easier than I expected.

My blood pressure (systolic) dropped about 10 points. Yesterday it averaged about 110/75. I also get an evening spike in BP in the winter. This hasn't happened since going WFPB.

This improvement really surprised me. Over the last year, I occasionally felt my heart. It wasn't painful, but I would feel a slight sensation in my heart. As stenosis got worse, the sensation occurred more and more often, until a couple of weeks ago it was constant. About 5 days after starting WFPB, I was feeling good and realized the heart sensation was gone. My guess is that this diet increases the production of nitric oxide and caused blood vessels to dilate. It may only be temporary, but still a nice surprise.

There are scientific studies that show this type of diet can stop and even reverse most heart disease (but not aortic stenosis). I decided to change to WFPB for 2 reasons:
1) Arterial calcification usually occurs along with aortic valve calcification. Hopefully the diet will stabilize and possibly reverse current arterial calcification.
2) There is the possibility of the new valve becoming calcified. I'm hoping WFPB may at least slow that process down.

This isn't meant to try to influence anyone else. I use my journal to try to keep track of questions and answers as well as actions I take and why I take them. If new scientific studies show a better diet for heart health, I have no problem going where science points me.

Do you think valve calcification is a different process than arterial calcification?

I thought they would be the same process, but rarely do I see anyone here who has valve calcification mention that they also have arterial calcification.

I've seen 4 different cardiologists over the last 2+ years and not one even mentioned if I had any arterial risk or scheduled a calcium heart scan or other test for arterial damage.

I'm curious to know others experience.

Has anyone with a bicuspid aortic valve (BAV) had TAVR? If so, please share how it went and any complications.
Thanks

Note: I have severe aortic stenosis and am asymptomatic.

Had my exercise stress test yesterday. I seem to have severe white coat hypertension, even though I usually don't feel anxious about seeing a doctor. My normal BP is under 120/80 (with medication), but at the doctor it is usually around 180/110. I have taken my own BP monitor with me a few times, so I know my monitor is fairly accurate.

Yesterday, after 1 1/2 hour drive I arrived for stress test. I purposely arrived 1/2 hour early so I could take a walk and do some relaxation exercises to see if I could bring my BP down a little. It did come down a little, but was still extremely high.

I go to check in and the woman says I'm not scheduled for a stress test. I had several emails, had checked the web site, plus I had been verbally told it was in this building. They had changed the location and left me a voice mail last night. I check my voice mail once a day, so I didn't know they had changed the location.

I'm at the wrong location at the right time, so I asked the registration person to please call and let them know why I was going to be late. I had about a 30 minute drive to get to the hospital where the stress test was now scheduled. Of course, I'm stressing the entire time, even telling myself it wasn't my fault.

I pull into the parking garage and see a height warning sign, but didn't think I would have a problem, even though I was driving my van which has solar panels mounted on top. As I drive under the sign, I hear WHAM. An attendant comes running out and says to take it slow and I should be OK. There was about 2" between the solar panels and the ceiling, so I had to just creep my way around looking for an empty space. After about 15 minutes, I still hadn't found a space, then I see 4 empty spaces.

I pull in and the same attendant comes out and says those were reserved spaces. She takes pity on me and lets me park and says she will leave word that she gave me permission to park there. I expected to be back in about 45 minutes.

I was in a major hospital and hadn't been given a floor or room number, or even the department I was supposed to go to. I found a waiting room that had 2 men in it and asked them if they knew where I could find a real person to help me. They gave me directions that got me back to the elevators, but no person.

I wandered into the cardiac patient area and found a nurses station. Someone was kind enough to walk me to the place I needed to be. It's now 12:00, so only about 1 hour late for my appointment.

My BP is obviously still sky high, but they OK me for the stress test.
They started at an incline for 3 minutes, no problem. Then a steeper incline for 3 minutes, no problem for about 2 1/2 minutes, but knew I couldn't handle the next jump in speed and incline.

The tech asked if I wanted to go to the next level and I said yes, but I couldn't do full 3 minutes. She said let's try 15 seconds, I said OK, and the next thing I know I am jogging. The last time I ran was when my riding lawn mower caught on fire and I had to run to the house to get a fire extinguisher. The 15 seconds were up and so was I.

By now, it was about 12:45 and I was scheduled for a CT scan at 1:30, but the tech said she thought they were going to get me in early. Back to the 1st floor and a nice lady told me how to get to radiology.

They got me out of the main waiting room into the CT waiting room by 1:15 and had the ct scan around 1:45. The only problem I had was when you are laying down, you have to keep your arms extended above your head. I have a slightly pinched nerve in my shoulder and knew I couldn't keep my arms in that position for 20 minutes. They were very helpful with a slightly altered positioning and gave me several breaks to move my arms around and relieve the stress.

By 2:30 I was done and returned to my van, hoping it was still there. It was. I saw a couple of attendants and explained to them the problem I had earlier and one attendant had allowed me to park there, and would they tell her I said thanks the next time they saw her.

Then a nice, relaxing 1 1/2 hour drive home. Hopefully I will know results early next week.

My cardiologist said they use minimally invasive surgery for aortic valve replacement. I see long scars on many people here, so I guess that means they had a sternotomy and not minimally invasive surgery.

So my question is, which type of surgery did you have (minimally invasive or sternotomy)?

If sternotomy, what was the reason?
If aortic valve relacement, did you have bi or tricuspid valve?
How many days in hospital?
How many days before you could drive?

Thanks.

I asked a similar question on another board (not heart related) because I knew a few people there had heart surgery. I got a few good ideas: 1) Say a short prayer on every breath, 2) hum meditation, and 3) (this one I came up with myself) be the best patient they have ever seen and do my best to maintain a positive attitude throughout time in hospital. I am a control freak and I can't be in charge of the operation, but I can be in control of how I act and react.

What did you do to relax and keep your emotions in check?

ETA: I'm also making a day of music playlist, some motivational, some calming, some just because I like them.

Cardiologist recommended a BMP and Pro-Brain Natriuretic Peptide, N-terminal (NT-Pro-BNP).

BMP (Basic Metabolic Panel) showed blood chemistry and kidney function were normal.

Pro-Brain Natriuretic Peptide, N-terminal (NT-Pro-BNP) is used to show if the left ventricle of the heart is stretched. The good news was I had a low value which is good (77 pg/mL with standard range <=225 pg/mL). Doc said that was why I don't have symptoms.

Next on agenda is a stress exercise test and a CT TAVR PROTOCOL INC CTA CHEST HEART ...

For the stress test, I'm hoping to get a lot of walking in during the 3 weeks before the test. Going to include hills and see how I do.

After 3 echos, I still don't know if my aortic valve is bicuspid or tricuspid, so the CT scan should clear that up.

I'm hoping after these 2 labs that the doc and I will have enough info to come up with a plan.

I decided to make an appointment at Duke as I wanted a cardiologist from a top hospital that was up on the latest and greatest techniques and procedures. I called and explained what I was looking for and they scheduled me with Dr Wang. Had my 1st appointment and was totally satisfied with him.

I have had to manage my own healthcare for the last 10+ years, so I still am in that mode. I look at my healthcare as a partnership, not the physician dictating the plan.

My last echo showed a couple of markers as moderate, but ava=.79 cm2 (severe). Dr Wang recommended an exercise stress test to get a better picture of how severe the stenosis is and how big the window is for valve replacement.

I wanted to know if I had a bicuspid or tricuspid valve. I have had 3 echos and all were inconclusive. One cardiologist thought is was bicuspid, 1 thought tricuspid, and 1 didn't say. So Dr Wang recommended a CT scan. They scheduled it so I can do the stress test in the morning and CT scan in afternoon.

Dr Wang said he thought I could put off surgery for a year or 2 as I am asymptomatic, but if I started having symptoms I would probably need surgery sooner. I asked that if it was definite I needed a valve replacement, why put it off. He agreed with not putting it off, but I guess many people need the urgency of serious symptoms to accept having surgery. I can understand that, but I think I would rather get it over at age 70 rather than worry for the next year or 2 about where I go and what I do. I'm single, so I can't count on someone being around to call 911 if something happens. I was planning on selling my house and traveling the country in my RV for a year or 2, but I need to postpone until I get the valve replaced.

The thing that stops me from saying "I'm ready, set it up ASAP" is that I don't know if it is bicuspid requiring heart surgery or tricuspid which hopefully can be done by TAVR. He said I wouldn't qualify for TAVR because I would be considered a good risk for surgery. This appears to me to be based on financial and not medical requirements. I believe TAVR costs more than OHS because the cost of the TAVR valves are so expensive. In my mind, patients and their doctors should make the decision, not the insurance company or Medicare. The good news was Dr Wang thought he could get me in a TAVR trial. I didn't think to ask him if everyone in trial got TAVR or did some get TAVR and some OHS.