NOT asking medical device - talk to me about aortic valve replacement

[csziggy]

Last November at my wellness check they heard a heart murmur. Ever since then I have been on a slowly accelerating series of tests to narrow down what it is - echocardiogram, cardio-MRI with contrast, stress echocardiogram, and today a cardio caterization to measure blood flow in the heart

I have a severely stenotic aortic valve. The doctor's comment to my husband was that he is surprised I am doing as well as I am. He could not get the cath through the valve to measure the pressure inside the chamber. I will be getting a replacement valve.

My choices are a bioprosthetic valve (pig valve) or a mechanical valve. The bioprosthetic lasts 10-15 years, a mechanical one about 30 years. I am 65 with a life expectancy of 25 to 30 years or more (my Dad died at 90, Mom is still going at 96 WITH the same kind of valve problem I have that she has refused to have treated) so the first choice might seem to be a mechanical valve.

The bioprosthetic valve can - in medium to high risk patients - be inserted with a trans arterial valve replacement (TAVR) procedure. They go through a vein or artery from the groin, stick the valve in and it pops in place like a stent. Most patients can go home in a day or two.

The mechanical valve has to be placed with open heart surgery, cracking open the chest to place it. Plus with it I would have to take blood thinners the rest of my life - with the bioprosthetic I should only have to take them for a short time after the surgery or procedure.

BUT - there is good news! The local hospital is doing a clinical trial of using the TAVR procedure on low risk patients. I am a good candidate for getting in and that will give me a 50% chance of getting the TAVR procedure since half are control patients getting the regular open heart surgery.

So, has anyone here had a valve replacement? What was your experience like? Anyone with medical knowledge have anything to say? Do I have my information correct?

Thanks!

[Turbineguy]

1. The first thing

is that the people who do these, do it all the time, they are familiar with the procedure. There is some comfort in that.

My understanding is that in the mechanical valve you would likely be on blood thinners.

That said, I am not a life-sciences guy, I am an engineering type.

Please keep us up to date!

And All the Best!

[csziggy]

5. Thank you

The local hospital is pretty cutting edge in heart medicine. That is why Medtronics is letting them in on the clinical trials for the TAVR for low risk patients.

Thanks!

[Thor_MN]

15. I've never understood why people pluralize Medtronic...

There is no s in Medtronic.

Another another note, my 96 year old 1st cousin once removed just had his existing, failing bioprosthetic valve replaced via TAVR. He said the new valve was bovine so he was strong, like bull. His heart function is much better now. He said getting up in the middle of the night, he can just get up and walk to the bathroom, not have to wait to regain his balance and have to grab onto to things to walk.

[csziggy]

16. Bad habit picked up from others!

Excellent news about your cousin! I've been assuming the bioprostethic valve is porcine - but did not see anything specified on the Medtronic site.

One of the indications that my valve has been bad for most of my life is that even as a kid my feet would swell while sitting with them hanging down. I am too short legged for most chairs so they cut me off at the back of the knees and my feet don't touch the ground so I blamed it on that - but my cardiologist does not think so!

For over twenty five years any time I need to stand from a prone position I have to pause once sitting to make sure my balance is OK. I blamed that on the series of injuries I had about that time, culminating with a severe shoulder injury. I guess it could have been my heart then, too.

[Thor_MN]

17. Fortunately, other than high blood pressure and a too fast pulse, I haven't had any issues.

I did have a GI bleed after a colonoscopy, they gave me a transfusion after running in 3 liters of saline. My blood pressure at its lowest was 80 something over 50 something and they were amazed that I could still stand and walk. They wanted to walk me to the bathroom when I was still bleeding, and were slightly flustered that I went back to the room they parked me in in the ER and hooked myself to the EEG, BP monitor and pulse-ox. The connections are all idiot proof, they only fit one way. Fortunately, I had good insurance, max $2500 out of pocket, otherwise it would have been north of $15,000 for ER, a night in the ICU and another day and night for observation.

I don't know if it was the low oxygenation, that they were hand selecting the nurses or the hiring manager, but every single one of my nurses was drop dead beautiful...

Hopefully, your replacement valve will have you doing handsprings...

[TexasProgresive]

2. Went through this February with my dearest.

She was fainting and was finally diagnosed with intermittent bradycardia, her heart rate would drastically slow.Before inserting a pacemaker they did a cath, finding 2 partially blocked arteries and a severely stenotic aortic valve. She had open heart surgery to bypass the 2 arteries and replace the valve- I believe it was a bovine valve. It is true with the metallic valve that one must be on heavy duty blood thinners, my wife is on Plavics (sic) which is not so harsh. She did get the pacemaker a couple of days after surgery as the bradycardia was getting worse.

She is fully recovered now and is feeling better than she has in years. You may be amazed. I hope they can do the TAVR. That seems like a picnic compared to having your sternum cut and wired back together.

[csziggy]

6. I'm glad your dearest is doing better

According to everything I have read, once the defective valve is replaced the increased blood flow makes you feel MUCH better.

I definitely am signing up for the trial if I meet the criteria. I'm tired of being cut open - had it done for a shoulder and both knees.

[MuseRider]

3. My husband had that done

and at the last minute they discovered he needed 6 inches of his aorta done too. He was 65 and recovered quickly and is as fit as can be turning 70 in a few weeks. His recovery was not bad just go to do the rehab after and you will be glad that you did. He still does the recommended exercises every day.

If you have questions it is always best to ask your doctor but I could always ask my husband as long as it is not medical advice.

[csziggy]

7. It's good to hear that your husband has recovered nicely

And I do know how important physical therapy is. After two shoulder surgeries, four knee operations, and both arms (carpal tunnel), I really appreciate physical therapists and how much their work helps get us patients to fully functioning!

Today my husband and I had a good conversation with the physician's assistant, one of the cardiothoracic surgeons, and the PA who is in charge of the clinical trial. I had talked over the possibilities with my cardiologist before this last round of tests. Monday I talk to another of the cardiothoracic surgeons to make the final choice. No matter whether or not I get into the clinical trial I will have to decide which kind of valve. The trial would let me have the possibility of a much quicker recovery.

[Demsrule86]

4. My Dad has the pig one...he did fine with it...and this was in the 90's.

[csziggy]

8. Oh good! Glad your Dad is doing great.

I've talked to a few people with friends who had the pig valves put in about twenty years ago. Two had those replaced with mechanical valves once the pig ones failed - both hate the mechanical valves but at the time that was the only choice.

Now with the new bioprosthetic valves, if the original begins to fail they can go in, pop another valve inside the original and you're back in business! That is pretty amazing!

[roamer65]

9. Generally, the less invasive the better.

Faster recovery and less risk of infection. I chose less invasive for colon resection surgery and was back at work in 3 weeks. Glad I made that choice.

Not having to take blood thinners for the rest of your life is also another big plus.

Just my humble 2c

[csziggy]

12. Yes, that is why getting into the clinical trial would be good

That is the only way right now to get TAVR since I am a low risk patient. Even if I get in, half the patients in the trial will be controls and get the older style open heart surgery.

[Ms. Toad]

10. I'm confused.

It sounds from your description as if the TAVR procedure is only available to medium-high risk patients, outside of a trial.

Why would a lower risk procedure (TAVR procedure) only be available as an alternative to higher risk procedure (open heart surgery) only for medium to high risk patients?

I would have expected lower risk procedure to be available first to low risk patients (to minimize the overall additional medically induce risk).


Have you explored what happens at the end of life of the bioprosthetic? How is it removed and replaced? Remember, yu'll be around 80 then. I'd want to explore what is likely to happen - and how easy it might be to recover from the replacement process.

Are there any rejection concerns with a bioprosthetic? (With a human material, you buy into a life of anti-rejection medications that are often far harder to cope with than blood thinners - having experienced the latter and knowing a lot of people living with the former.)

[csziggy]

13. I don't understand why the less invasive technique is only approved for higher risk patients

But right now that is the way it is. Unless I can get into the trial I will not be able to get TAVR.

A few years ago this hospital began doing valve within a valve replacements - they leave the first bioprosthetic in place and insert a new bioprosthetic inside it. Generally this second procedure is the TAVR since the patient is older and the failure of the bioprothetic can be catastrophic. So that means the patient is higher risk and they can do the less invasive procedure as of now. Hopefully in 10-20 years techniques will be even better and less invasive.

I'm waiting for them to figure out how to beam a new valve in place!

Nothing I have found mentions rejection possibilities and there has been no mention to me about having to take anti-rejection drugs.

[AngryAmish]

11. Never go on a heart/lung machine unless you will die otherwise

Look up "pump head"...you can lose a lot of IQ.

On edit:. You also want a specialist, no a general cardiac surgeon, a cardiac surgeon who does ten of these (whatever specific procedure you want) a week. Experience means speed which means less rooting around your thoracic cavity.

If you have any surgeons in your social circle ask them. They always know the butchers.

[csziggy]

14. I am losing a lot of capability - the valve is failing

I cannot walk any distance without panting and running out of breath. So far I have not felt light headed, but my cardiologist seems surprised by that. I am beginning to notice my heart racing from while sitting activities. Today they could not get the catheter through the valve to measure the pressure inside the heart - that is how tight it is and how little blood can get through.

The cardiothoracic partnership here locally is highly regarded - that is one of the reasons they have been selected y Medtronics for the TAVR low risk trial. They were among the early groups that did TAVR originally. One of the partners is the doctor who did the cardio cath today - he performed a TAVR this morning. Another is the surgeon I am scheduled to meet with on Monday - he generally performs the open heart surgeries. Both will be in the operating room no matter which procedure I get.

The Wikipedia article on postperfusion syndrome, also known as "pumphead," indicates that it is worse in patients with coronary artery disease which I do not have. It also indicates that over time "the deficits are transient with no permanent neurological impairment." I noticed deficits after I got total knee replacement on both knees within three months, but after a few months I was back to normal.

If I do not get the valve replaced I will die. Maybe not immediately but soon as my heart becomes less and less able to pump enough blood to supply oxygen.

My mother had the same defect and she was told her heart could stop at any point or she might go to sleep and just not wake up. At 86 she elected to not do anything - although she has lasted another ten years, she is not doing very good. I would like to get closer to her age before I give up.