CoreValve Bioprosthesis?

[Ranae1221]

I'm a newbie here, and I hope its ok I am posting here when its not about myself, and I apologize this may be long.

I take care of my grandparents, and we recently found out, like a few days ago, that my grandpa has severe aortic stenosis. He was hospitalized for having a low BP and heart rate. While there, an echocardiogram was done. We were told he had this, and the doctor then pulled me aside and told me that when someone has aortic stenosis and begins to exhibit symptoms (the shortness of breath, syncope) it shortens the life span. She said they couldn't be sure if his symptoms were related to the heart stenosis, or his other diagnosis (CHF, COPD). But if related to the stenosis, he may have only 3-6 months.

A local heart doc was consulted (his heart doc is 3 hours away) and they said he is too high risk to do the surgery here locally (his age and history of renal failure).

They contacted the heart doc in Phoenix, and Grandpa is scheduled for an angiogram on 07/06/10. The doc office called me today to say that the heart doc reviewed the echo and agrees a valve replacement would likely be needed, but he wanted to concentrate on putting the 2 stents in his legs and doing the angiogram for now. I told them that Grandpa wants the surgery and doesn't want to wait (he says he doesn't want to stay alive the way he is now, he is willing to take the risk of surgery if it means he will feel better). She was going to talk to the doctor, and mentioned that when Grandpa does have surgery, it would likely be a CoreValve device. I don't understand why the doc would want to wait if it is as bad as they are making it sound, unless he is thinking of not doing the surgery or thinking it would be too much at once for him.

I've been trying to find some information on this, and everything I've found so for is very technical. Does anyone maybe know anything about this type of device? My grandpa can't take coumadin; he has in the past when he was in A-Fib and both times he ended up being hospitalized for adverse reactions. He now refuses to take it, and I don't want him taking it either.

My grandpa looks to me to help explain things to him, as well as the various family members. I do better as well knowing what to expect. I'm actually not very worried about the procedure or possible surgery; I worry what will happen if he doesn't get it. Right now he seems to get a little worse every day, and I grow more anxious every day. He came home Sunday from the hospital on oxygen (O2 levels drop to 75 to 86% without it), he is much more tired and has spent much of the last 2 days in bed. This is very unlike him. I don't know how much of all of this is related to the stenosis and how much is related to him needing stents in the legs as well as his other diagnosis. I also wonder why the stenosis wasn't found on previous tests, but that's a question I guess for the doc.

Warned you this would be long. I just don't have anywhere else or anyone else to ask right now. Thank you

 

[Ross]

This is a case that this particular procedure is used for. Someone to sick to endure full blown open heart surgery, but would likely die if nothing is done. It's still isn't very common and I only know of a handful of places that do them. As for information, I'm afraid all I have to offer is what can be found on the internet. No one I know, has had it done in here.

Perhaps someone around here is keeping up with the studies on it, but it's not me. Give it a little time and we'll find out.

As for the Coumadin, I'd be interested in knowing what the issue was with Coumadin regardless of what's happening now. It's usually poor management.

 

[ALCapshaw2]

I'm not familiar with the term "CoreValve". Is that a Catheter placed Valve?
The primary recipients for catheter placed valves (a.k.a. Percutaneous? Placed Valves) are high risk patients who might not survive conventional Open Heart Surgery.

With your grandpa's risk factors, I would recommend that he go to a Major Heart Center where they have surgeons who know how to deal with High Risk Patients. I'm not familiar with the Major Heart Hospitals in Arizona. UCLA, Standford in SF, Texas Heart Institue in Houston, are some of the Big ones in the West.

Do you have a Medical Power of Attorney so that you can obtain copies of his records and discuss his condition with his doctors? If not, I recommend getting one.

After you obtain the Medical Power of Attorney, then request copies of ALL of his Test Results. You will learn much more than most Doctors reveal during a typical (short) Office Visit. In particular, a copy of his EchoCardiogram Results will reveal significant information on the condition of his valves. We can help you understand the terminology.

I'd be interested in knowing what kind of reactions your Grandpa had to Coumadin. Adverse reactions to the medication are RARE. OTOH, Poor Results are unfortunately more common and due to POOR Management, usually by medical providers who have NOT kept up with the latest techniques and guidelines.

At his age, Tissue Valves are a good way to avoid the need for anticoagulation (Coumadin/Warfarin) due to his valve choice.
How are his Doctors treating his Atrial Fibrilation without Coumadin?

Best Wishes in finding proper care for your Grandpa.

'AL Capshaw'

 

[Lynlw]

Hi, Welcome, Both my son (now 22) and Mom are the pones that had a few heart surgeries, so I know how it can feel helping a loved one thru this and trying to answer the questions all the family members have.

Corevalve, I'm not sure the way you are talking about going thru surgery, the doctor explained it well. But the Corevalve is Medtronic valve that is put in the patient in the cath lab (thru the groin or artery in the chest area, usually the groin. it is basically like the stents your Grandpa will be getting, but this has the valve leafelets sewn into it. Percutaneous valve replacements in the US, are still experimental, right now only can be used in high risks pateints like your Grandfather. BUT I'm surprised they said the Corevalve specifically, because I thought that valve was still trying to get approval to start clinical trials in the US. All the listed trials are for Europe/ect http://clinicaltrials.gov/ct2/results?term=corevalve IF it has been approved, it is SOO new in the US, that I doubt any doctor has much experience.

IF they feel your Grandpa should have his valve replaced in the cath lab, there is another percutaneous valve that has been in trials longer,(a couple years in the US, longer in Europe) the Edwards Sapien. IF I or a loved one was going to get either of these valve, or even consider it. I would lean toward the Sapien, because almost every major heart Center in the US, have been using them as part of the clinical trials (with very good results) and so have done quite a few of them. (The trials started around 07) Here is a link to the PARTNER trials and at the bottom, is a list of all the centers that currently are part of the trial. http://clinicaltrials.gov/ct2/show/study/NCT00530894?term=sapien&rank=2&show_locs=Y#locn

 

[Ranae1221]

First, thank you so much for the replies!

Correcting the valve via a procedure similar to putting in stents sounds much better to me than open heart surgery. For the most part, other than going into renal failure, he has always tolerated the stent procedure ok.

I do have Medicare POA, and have gotten copies of some records, not all. I want to get the records from this last hospital visit but haven't had a chance (the day after he got out of the hospital, my grandma-who is blind- fell and fractured her ankle in 2 places. She was hospitalized for a few days and is home, but grandpa can't care for her and she requires almost total care).

The hospital we are going to is Banner Good Samaritan. We've been happy with this hospital and it is apparently one of the best in America for heart care.

For the A-Fib, they had tried cardioversion twice. The first time it lasted about 6-9 months. The second time it last a month or 2. They had him on Amiodarone, and we were scheduled to see another heart doc about Cardiac Abalation. Before that appointment, he was in the hospital and they said he was out of A-Fib. They stopped the Amiodarone because they felt it was a cause for his low BP and heart rate. He is on Plavix and 2 baby aspirin as well. (I know it works differently or a different type of blood thinner than the coumadin.) I'm not sure if/when the A-Fib will return or if there is something else causing it.

As for the coumadin, I wouldn't be surprised if the complications or reaction was indeed from poor management. Regardless, grandpa will not take it again. The 1st time, he was in the hospital and just diagnosed with A-Fib. They started him on the Coumadin, and right away he began to complain of what seemed like a knot right behind his knee. We showed the doc who said it was some type of Bakers Cyst and nothing to worry about. Grandpa came home, and over the next 2 days began to have pain. By the second day, his leg was yellow, painful and swollen. he couldn't put any weight on it. I thought he had a blood clot. I took him to the ER and he was admitted again to the hospital where it was found his leg was swollen with blood. He was on bed rest for a few days while they monitored it. The blood began to settle and the underside of his leg looked like a big bruise for awhile. He still, 2 years later, says the leg has never been the same.

The second time it caused a GI Bleed and another hospital admit. He tended to be sensitive to the Coumadin, and took a low dose, maybe 1mg a day. I would call the labs to get the results cause I didn't want to wait for the doc office to call.

I'm not sure why the office specifically mentioned a CoreValve, but I wrote it down when she told me so I could look it up at home. I am wondering if the reason the doc doesn't want to just do the surgery right away is because if it is still in trials and he has to make sure grandpa wants to particpate? I don't know........

I am home on lunch break and grandpa has an appt now with his PCP, but I am going to look at the information for that other type of replacement valve that has been around a bit longer. I am also going to work on getting more of the records and will most definitely be back with questions.

I am soooooooooo glad I found this place!

 

[Ross]

It sounds like they really screwed the pooch on his Coumadin management. Oh well, water under the bridge now.

Are they talking of doing the CoreValve at Banner or sending him elsewhere? I'm just trying to figure out why they aren't listed as one of the facilities doing these procedures. For the fraility of his conditions, I would think The Cleveland Clinic would be the place of choice.

 

[Lynlw]

It sounds like they really screwed the pooch on his Coumadin management. Oh well, water under the bridge now.

Are they talking of doing the CoreValve at Banner or sending him elsewhere? I'm just trying to figure out why they aren't listed as one of the facilities doing these procedures. For the fraility of his conditions, I would think The Cleveland Clinic would be the place of choice.

I'm glad we were able to help. I know what a relief it can be to just talk to others that have gone thru what you are going thru.
If there are any question we can help with just ask. FWIW, as far as "One of the best heart hospitals", you have to be careful, because many of the "best" do tons of CABGS and are very good at them, but don't have alot of experience with Valves or Aorta surgery, which is something else. You need to find out how much experience they have with what you need done, not just heart surgery in general.

Now this next bit is just MY opinion, and I don't know if insurance plays a role in where your Grandfather has to go but,
I don't know anything about Banner, but when looking saw they were "one of the best" so I looked to see what their scores are at the US news. They came in #40 for heart hospitals and got pretty average or low average "grades", http://health.usnews.com/best-hospi...edical-center-6860250/heart-and-heart-surgery which would be fine for a pretty routine, healthy person, BUT for someone that is high risk to start with IF it were My loved on, I would probably at least get opinions from some of the larger major Heart Hospitals


Corevalve hasn't even started any trials in the US. They HOPE to before the end of the year, thats why I don't know why they suggested that valve. But even the Sapien doesn't have any hospitals in Arizona taking part in the trials, unless they are just starting to. There are some really good Hospitals in California and Texas that are part of the Sapien trials, If you think your Grandfather would be interested in trying to avoid open heart surgery (IF he is even eligble to be part of the trials)and wants to try percutaneous replacement. If you didn't want to travel as far. I know a few people that live in Az, but go to California for complex surgery.

Ps I am sorry to hear about your Grandmother too. You really do have your plate full. Do you have help that can stay with your Grandmother, while your grandfather is in the hospital?

 

[Ranae1221]

After doing a bit more looking, it appears that this particular device isn't being tested in the US just as Lynlw mentioned. So I am confused (lol not a surprise) as to why that was specifically mentioned. Regardless, we see the heart doc Tuesday, and Grandpa will receive the 2 stents in his legs and the angiogram to get a better look at his heart.

Lynlw- I looked at that link to see some of the other options and it looks like that there is a trial be done at Scripps Green Hospital in La Jolla, CA. Grandpa (and Grandma) have actually been at that hospital a few times for back surgeries, and its about 3 hours away. After they do the angiogram here in Phx, I'm seriously considering taking him up to that hospital and/or seeing what I need to do to get him seen. I just worry that it won't all be done in enough time; the first doc made it sound like he had only a few months.

He has Medicare and AARP, so he is not limited to just remaining in AZ.

As for my grandma- there have been family members down this week and they've been helping with her. She requires 24 hour care right now. This morning she was admitted to an inpatient rehab hospital for physical therapy; she will be there 1-3 weeks. This way Grandpa can know she is being taken care of and is in a safe place while we are in Phoenix, and give him a chance to recoup.

Thanks again for all the information! I would be at a total loss without it. I will let you know what they tell us on Tuesday.

 

[Lynlw]

After doing a bit more looking, it appears that this particular device isn't being tested in the US just as Lynlw mentioned. So I am confused (lol not a surprise) as to why that was specifically mentioned. Regardless, we see the heart doc Tuesday, and Grandpa will receive the 2 stents in his legs and the angiogram to get a better look at his heart.

Lynlw- I looked at that link to see some of the other options and it looks like that there is a trial be done at Scripps Green Hospital in La Jolla, CA. Grandpa (and Grandma) have actually been at that hospital a few times for back surgeries, and its about 3 hours away. After they do the angiogram here in Phx, I'm seriously considering taking him up to that hospital and/or seeing what I need to do to get him seen. I just worry that it won't all be done in enough time; the first doc made it sound like he had only a few months.

He has Medicare and AARP, so he is not limited to just remaining in AZ.

As for my grandma- there have been family members down this week and they've been helping with her. She requires 24 hour care right now. This morning she was admitted to an inpatient rehab hospital for physical therapy; she will be there 1-3 weeks. This way Grandpa can know she is being taken care of and is in a safe place while we are in Phoenix, and give him a chance to recoup.

Thanks again for all the information! I would be at a total loss without it. I will let you know what they tell us on Tuesday.

If you and Grandpa are interested in finding out about going to Scrpps, you don't have to drag him there in the beginning. What I would do (and have done many times with Justin) is call the contact people at Scrippts, explain the situation, tell them you are interested in finding out about the trials and ask what they need to evaluate and see if they can help your Grandfather. Most likely they will want a copy of his records and actually CDs of his most recent testing, (the angigram this week, included) and they can give their opinon from all of that. When you are at the hospital Tuesday, go to Medical Records and ask for all forms you will need to have records sent to another doctor, that way when you find out what Scripps (or any other center you want opinions from) needs as far as records , you will have the form already. Also you can just ask his cardiologist office if they will send the records to another doctor, or if you have to go thru Medical records. (Justin's doctors are pretty good about letting us pick things up from one doctor/hospital and sending or taking if it is close enough, them ourselves to another)
Since you are in a hurry, sometimes it takes a while to get the actuall written report from something like the angio,( first the doctor has to review it, then make his report usually in an audio tape and then the tape goes to someone to type the report) and the other doctors really care more about what they see looking at the disks than the written report, It might be quicker to tell them they don't have to wait for the written report to send the CD with it, You would like the CD of the cath and any records sent ASAP and they can send the written report up when it is done. Sometimes we've done it that way and have our 2nd opinions before the written report of the last test is even sent to them) not always, but depending, it can take a while.

ps you can call me Lyn

 

[ALCapshaw2]

Ranae -

Given your Grandpa's age and co-morbidities, you might want to consider some of the Major Heart Hospitals such as UCLA in Los Angeles or The Texas Heart Institute in Houston where there are more likely to be Surgeons who have considerable experience dealing with High Risk Patients. Typically, the More Experience a Surgeon has doing what his patient needs, the better the outcome.

'AL Capshaw'

 

[Luana]

USC University Hospital is another one you might consider in SoCal (Dr. Vaughn Starnes). And Lyn made a really good point about the good heart hospitals. Bypass and valve stuff are quite different, and since bypass stuff is so much more common, it's what is usually used to draw attention as a "good heart hospital." Also, Lyn made another excellent point in sending the medical records first rather than taking grandpa in. Should be easier that way for all of you! You've got a lot on your plate. Take care, Ranae.

 

[Ranae1221]

So grandpa had his angiogram today. The heart doc came out and said that it was much better than he thought, based off the echocardiogram. He said that based on the echocardiogram it was "55" but the angiogram it is really "10". Not too sure what the measurements mean, but basically he doesn't need a valve replacement and he doesn't have severe stenosis. The doc said in a way he was a little disappointed because he had just gotten approval to begin using this new procedure, the "CoreValve". LOL, I told him I had done reading on that. I have to say, not sure I would have been too comfortable my grandpa being his first test patient.....Anyhow, he is now having some breathing issues, but that's not related to his heart. I guess good news is that docs will soon be using this type of procedure in the US.

Thanks again everyone for taking the time to answer my questions!!

 

[Lynlw]

What great news. I'm sorry they had your family so worried for what turned out to be nothing, but so happy they were wrong and he doesn't have to go thru anything else.