TAVI report

[don6170]

Last week, I had AVR via TAVR/TAVI. While it was nothing compared to OHS, it was not a pain-free experience (although I have a low pain tolerance threshold). For others that may have TAVR, here are notes about my experience.

I am about 25 years younger than the typical TAVR patient. Stenosis of the aorta and other related issues, most likely due to radiation for Hodgkins made OHS a high risk for me, thus the recommendation for TAVR, going in through the right femoral artery.

I checked into the hospital on a Monday afternoon. After going through admissions, I went to a private pre-surgery room. I had a chest X-ray, EKG, blood work and pre-op IVs placed. Since they wanted to be ready in case they had to open the chest in an emergency, I was also prepped for that, which included being shaved from the neck to mid-thigh. That evening, I was asked to take a scrub wash, which consisted of special sponges with soap that I soaked in a basin of water and then “rinsed” with wash cloths.

Early Tuesday morning, I was awakened and asked to take a second scrub wash. I was told they would do a third in the operating room. I’m guessing it was about 6:00AM when they wheeled me in there. I remember being asked to move from the transport bed to the operating table and commenting that will all the TV/monitors in the room that it looked like a sports bar. The next thing I remember is waking up in ICU.

During surgery, they had tubes/IVs in
- right groin. Main cath for heart valve insertion
- Foley cath
- left groin. 2nd cath used to help position valve
- down throat - breathing tube
- down throat - TEE/echocardiagram to help positioning
- right side neck - big tube as "emergency" port in case they needed to get drugs/etc into system fast
- right hand - IV to insert drugs, etc
- right hand - IV to insert drugs, etc (not sure why they needed another one)
- nose - oxygen tube

After surgery, all came out except Foley, neck, hand IVs and oxygen. They also added a five-lead mini-EKG monitor that stayed connected until I was released.

Tuesday afternoon, I was up and took a short walk down the hall and back.

On Wednesday, they removed the Foley cath and the A-line in the neck. I was asked to walk three laps around ward, three times that day, which I did.

On Thursday, they removed the dressings from where the various cath lines and IVs were. At least three more sets of laps was needed. While I felt like I could be released, they wanted to keep me until Friday.

On Friday morning, I was released. I feel good, but weak and sore in a couple places where the caths were.

 

[Hodgkins survivor]

Thanks don for posting this. I too, (hodgkins survivor 24 yrs ago and high risk) was trying to hold off for the tavr but couldn't make it and had OHS 1.5 years ago. I would love to chat with you a bit more about your experience and your decision, since i am assuming i will have that in the future, and the technology is certainly advancing fast. If you are up to handling a phone call in the next few weeks, id love to chat.

 

[enkaynj]

Thanks Don. Good post. You are probably one of the first ones with TAVI done in this country. I am pretty sure such surgeries will become routine in the next decade.
Keep us posted of your recovery. Many of us may be opting for this procedure the second time around sometime in future and will be eagerly following stories such as yours.

 

[epstns]

Thanks for the update, Don. We will be eagerly awaiting further reports on your recovery. Some of us may be following you some years down the pike.

 

[kenkahle]

Thanks Don for sharing your story. I am 53 years old and am a hodgkins survivor of 30 years. 6 months ago I had AVR (aortic valve stenosis) and went with the Edwards Lifesciences Magna Ease valve (Bovine valve). I opted for a tissue valve over mechanical for numerous reasons one of them being that TAVI/TAVR may be an option for me when I need my next AVR surgery.

I am currious what you meant when you stated that you were at high risk for OHS due to the radiation treatment for your hodgkins. Was this a general statement made based off your history of hodgkins and having aortic stenosis? Or was this a statement made specifically for your individual condition. I ask because I was never told that I was at high risk for OHS. Perhaps I was at high risk and was just never told as it didn't matter since TAVI/TAVR was not an option at the time of my AVR - even for patients at high risk for OHS.

The surgeon did say that I was a "tough case" as he had a tough time suturing the valve to my aorta as my aorta would just "crumble" when trying to tighten up the sutures. The curosity that I have is whether I now would be considered a high risk patient for OHS and thus be a candidate for TAVI/TAVR... Probably a moot point as TAVI/TAVR will be an option for most all patients and not just high risk ones when I need my next valve surgery.

Congrats on beating hodgkins and on making it through the new TAVI/TAVR procedure! Keep us posted.

 

[don6170]

I am currious what you meant when you stated that you were at high risk for OHS due to the radiation treatment for your hodgkins. Was this a general statement made based off your history of hodgkins and having aortic stenosis?

A couple of the issues mentioned were related to the calcification of the aorta. During OHS, it would be clamped, which could result in damage, which could be difficult to repair. It also made the sewing of the sew ring of the new valve more difficult.

I'm 10 days out from the TAVI and feel very good.

 

[DebbyA]

Don,

Thanks for such a thorough report. It's very encouraging. It's good to read you're doing so well with it.

 

[enkaynj]

Ken,
I am around your age; I too went with a bovine tissue valve hoping that the next valve change will be using TAVR. Don's report is very encouraging indeed.

 

[ferguson]

I've been trying to find TAVR patients but haven't (til right now) had any luck. Got my aortic valve replaced by TAVR procedure on 1/16/14. As of today I can almost walk as long as I hang on to stuff. I have a lot of side effects, the most prominent seems to be a deficit in short term memory. But maybe that's age trelated...I'm 72 . Im having trouble typing this. Trouble seeing. Maybe I'm up too late. TAVR is supposed to be the grooviest thing since sliced bread. I haven't found it so and am starting to voice my dismay on several sites. Evidently I'm doing well. Can't prove it by me. Recuperation has been a bit of a new experience...I never now how I'll feel from day to day. On some days I awake short of breath. Scares the hell out of me. To say I don't like it...it just plain pisses me off. I like breathing normally. I have become a mean old cuss. I mean, give me a break, people (family members) don't seem to realize that I'm not the same. Angry all the time despite myself. I just am not thoroughly enamored of facing challenges every day. I have not learned to love my diuretics nor my wet underwear. It might be nice to taste food again. All my energy during the day seems to be used to fight off going back to sleep, and at night I can't. Used to be an avid reader now I avoid reading. And I'm tired of having fun bitching an moaning about all this crap. I've got to learn to love my bovine valve...hey maybe I can get another one that would provide more blood flow than I am now getting. I'll tell that to my legs which don't seem to want to work too hard any more. Maybe in the next six months I'll further recover but so far this year has marked a long, often strange trip.

 

[Agian]

Sometimes it's one thing after another. My dad has had an unpleasant year as well, for different reasons. He hasn't been able to do much either. Things are starting to improve for him, though. Don't suffer in silence, Sir. Let others know how you feel. I wish you a speedy recovery.

 

[ferguson]

I wish me a speedier recovery than I'm now experiencing. Perhaps it's not the new valve at all...maybe I reacted badly to anesthesia. I don't know. Lately it seems to me that my mind is slipping some gears...I seem to be making what I feel are inappropriate remarks. As if I've gotten a little bit daffy. Maybe it's age. I can't seem to speak seriously. I suspect I may be trying to mask my fear of being really sick rather than greatly inconvenienced. I don't like being 72 but considering the alternative I guess II'm very lucky to be here at all. Still my legs are a concern. Weeping edema, really painful knees, foot neuropathy. The result is that I have trouble getting around unless I'm in my wheelchair. I feel bad complaining but I'd feel better if I didn't have to worry about falling. Woke up this AM by falling out of bed. No harm but the effort of getting back left me out of breath. Too much weight though I now eat much less than I have in the past. I'd like to walk but I really can't. Sunday I almost fell outdoors; stumbled around trying not to hit the ground but couldn't get balanced until my wife steadied me. Lurching is not walking and it was preceding a great fall. Usually I laugh such an occurrence. This time I didn't. I was scared. Never mind em-barased But the hell with this stuff, I'll make a pb sandwich and watch some TV

 

[pellicle]

Hi

I wish me a speedier recovery than I'm now experiencing. Perhaps it's not the new valve at all...maybe I reacted badly to anesthesia. I don't know. Lately it seems to me that my mind is slipping some gears..

sounds like "pump head" to me ... I had never heard about it, but (not being on here for the first year after my surgery) when I did hear of it it cleared up what the hell was happening to my brain (or at least gave me a hook to hang blame on)

http://heartdisease.about.com/cs/byp...a/pumphead.htm

This talks about bypass surgery, but I expect that valve replacement is similar in many aspects, but this is more general

http://www.scientificamerican.com/ar...-lung-machine/



FWIW it took about a year or so before I was doing what I think of as normal.

 

[Paleowoman]

Hi Ferguson - this may not be related to you and I didn't have TAVR. I had OHS to replace my aortic vlave in Januray this year. I have been complaining for months about the fact that I am not nearly so fit as I was before surgery and that I get breathless. One of my consultants, the endocrinologist, is very good at thinking outside the box, he is a very good generalist, and he thought my problem might actually be related to my lungs. I saw respiratory consultant yesterday and YES I have air trapping in my lungs which leads to breathlessness and loss of fitness etc. Wait till my cardiologist reads the report as I'm sure he thoguht I was just all in my head.

So don't feel bad about complaining !!!! Complain until they find a reason for how you're feeling !

I don't think you would have been on a heart lung machine so it wouldn't be pump head, but when I read about TAVR it said something about stroke being more common after that procedure. Not that you might have had a small stroke, but maybe you should see a neurologist - if you haven't already, and if you have go back to him and complain !

Hope you find an answer soon and can get help.