Getting out of the "waiting room"

[DebbyA]

Barbara,

You express so well the value of this site.

I haven't posted much either because my experience was so uncomplicated--I hope yours is the same!

Best wishes,

Debby

 

[ALCapshaw2]

Greetings Barbara,

As you probably know, I am also a Radiation Treatment Survivor (and Victim!).

The KEY issues for Radiation Damaged Heart Patients are Scar Tissue in the Heart and Aorta, Cardiomyopathy of the heart muscles, and bleeding / slow healing issues due to Radiation Damage. Obviously my surgeon was able to deal with all of those issues successfully. Have you discussed these issues with your surgeon?

I am intrigued by your surgeon’s recommendation of a Tissue Valve as his First Choice. Did he say what kind? Or his reason(s) for recommending a Tissue Valve as his first choice?

My First Choice was for a Bovine Pericardial Tissue Valve which my surgeon agreed to use. Once he ‘got in there’, he discovered a LOT of Scar Tissue (others have mentioned Ceramic Aorta or some such implication). He then decided that a St. Jude Master’s Series Mechanical Valve would be more appropriate due to the High Risk of replacing a prosthetic aortic valve with such a damaged aorta. (Note that ON-X had only recently been approved for use in the USA at that time).

Some of our fellow Radiation Treatment Survivors have mentioned that their surgeons told them up-front that they would ONLY consider mechanical valves for Radiation Damaged Hearts in the hope that a mechanical valve would never need replacing.

ONE (more elderly) lady received a pair of Bovine Pericardial Tissue Valves that would probably last for her expected lifetime. As you also probably know, I am impressed by the technological improvements and benefits of the relatively new ON-X Valves compared with the 30-year old designs of their predecessors.

I’m glad that you will be at Brigham and Women’s Hospital which is one of the Top Rated Heart Hospitals in the country. Their Doctors and Staff should know how to recognize and treat any post-op complications that may arise.

You have my Best Wishes for a Successful Surgery and Recuperation.

‘AL Capshaw’

 

[brd]

Hi Al, Yes, we have discussed all of the radiation implications and then some........ effusion tendency due to stiff pericardial sac and pleural lining, thoracic duct drainage issues etc. He has a wide experience in radiated hearts, knows Bruce Lytle's work at CC, and makes his final decision when he sees how things look. But his preference is for tissue IF it is right for the actual situation he finds. THe CT scan last week looked clear of calcium in the aorta itself. I have yet to have the cardiac cath so we do not know about the coronaries. I will have the cath the morning before surgery.

I have seen and talked to many CV physicians both at Ma General, Mayo Clinic and the Brigham about the radiation implications (I work in healthcare and have pretty good access) over these past three years. There is one camp that, as you say, will consider nothing but mechanical but there are many experienced in valves and radiation who support tissue. Please remember this is my research only however and relatively narrow at that.

My surgeon has found in his experience that those furthest away from the radiation event appear to have less damage. This is the first time I have ever heard that particular point but I am 44 years from it with no other "known" effects.

The only thing holding me back on the On X is the track record compared with the St Jude. I will probably choose On X anyway, however.

I will of coure keep you posted.

Barbara

 

[Bina]

I also waited for years before OHS, that was not fun at all.....now it's just a few days left before your new life!

 

[ALCapshaw2]

Hi Al, Yes, we have discussed all of the radiation implications and then some........ effusion tendency due to stiff pericardial sac and pleural lining, thoracic duct drainage issues etc. He has a wide experience in radiated hearts, knows Bruce Lytle's work at CC, and makes his final decision when he sees how things look. But his preference is for tissue IF it is right for the actual situation he finds. THe CT scan last week looked clear of calcium in the aorta itself. I have yet to have the cardiac cath so we do not know about the coronaries. I will have the cath the morning before surgery.

I have seen and talked to many CV physicians both at Ma General, Mayo Clinic and the Brigham about the radiation implications (I work in healthcare and have pretty good access) over these past three years. There is one camp that, as you say, will consider nothing but mechanical but there are many experienced in valves and radiation who support tissue. Please remember this is my research only however and relatively narrow at that.

My surgeon has found in his experience that those furthest away from the radiation event appear to have less damage. This is the first time I have ever heard that particular point but I am 44 years from it with no other "known" effects.

The only thing holding me back on the On X is the track record compared with the St Jude. I will probably choose On X anyway, however.

I will of coure keep you posted.

Barbara

VERY Interesting Research Barbara. You've clearly done your 'home work' and found a skilled and knowledgable surgeon. (I hope Robin H in NH reads your post!) I have also found that I've learned something new from every Surgeon I've talked to. I'm glad to see you are well prepared.

For patients over age 60, the Bovine Pericardial Tissue Valve seems very appealing, especially if your family history doesn't include many octogenarians.

I'm thinking that "those furthest from the event" showing the least damage is consistent since I *assume* less damage would take longer to materialize (and those with more damage would need intervention sooner).

I'll be interested in your Cath results. Localized Blockages and "Diffused Stenosis" are possible 'after effects'. The fact that you haven't had an issue in these 44 years is a Good Sign.

Bon Voyage!

'AL Capshaw'

 

[katie1234]

Hi Barbara,

I am thinking of you and sending you hugs and prayers for a smooth surgery and a great recovery. My mom has two tissue valves and they are working great. She does deal with other problems, but I think the consensus is that these are actually probably from her radiated lung issues and an underlying immune system problem and not from her heart valves (every post-op test she has had confirms that they are working wonderfully). She had lung problems before her surgery as well.

It's also great that you have discussed all of the radiation implications with your surgeon, including the thoracic duct stuff. That one was a surprise for us, and a cardio who didn't know that radiation can cause slowing of the drainage kept freaking out on my mom and saying it was a "medical mystery" eek Thankfully her current cardio is up to date on this stuff and reassured my mom that it was no mystery, just an annoying little side-effect of radiation that will go away.

It sounds like you are way ahead of the game and will do great!

Thinking of you,
Katie

 

[azpam]

Well Barbara, I too am getting closer to writing "the notification letter". I have stalled for over 12 yrs now and surgery is getting closer. I can't stall forever! Know that we all will be thinking and praying for you during your "heart fixing time" and helping you get through the rough spots along the way. Good vibes,health, and prayers your way........

 

[zipper2]

Barbara,
Waiting is not easy,been there ,done that like so many
of us here.
Wishing you all the best on Aug 6th ,were all in it together


zipper2

 

[RobinH]

Hi Barbara! I am thinking of you and wish you the best next week! Best wishes for an uncomplicated surgery with a quick and painless recovery!

Robin

 

[Superbob]

Just catching up with this thread. Wishing you the best next week, Barbara, and a smooth recovery thereafter. Look forward to hearing good news about you.

 

[susieq14]

Barbara,

Best Wishes for a very successful surgery and uneventful recovery. Yopu have my prayers and best wishes.

Godspeed!

 

[witzkeyman]

actually, I wanted it done as soon and quickly as possible. (presurgery)I constantly felt like fainting and the doc that did my angioplasty said my valve was smaller then a pinhole.
I felt A heck of A LOT better once it was done. post-surgery was awesome except getting up out of bed the day after surgery. when able, walk around.

 

[ctyguy]

Best of luck....will look for your post from the other side

 

[Dale]

Barbara,
I want to send my best wishes too. Surgery will soon be behind you and you can focus on recovery. Stay positive!


from another Barbara
a newbie for aortic valve replacement
-- who may start getting symptoms this year - so far I can't tell if I am!

 

[Curtsmum]

We also had a long wait 8 years and now Curtis is recovery brilliantly. Curtis had more problems with the things they did afterwards he just wanted the nurses to leave him alone and go home. Glad you have finally got a date so you can get it over and start your recovery, all the best.

 

[TBurg18]

Barbara, best of luck. You'll do great. My surgery will be on 8/21 for double valve and a bypass. My doc is suggesting a mechancial aortic valve due to my age of 52. He says the tissue has a life of 12-15 years. I brought up the ON-X and he isn't a fan yet. Although the St. Jude technology is 30 years old, he claims the valve has been modified over the years to add improved features. You seem well informed so I'm certain you'll make the correct choice. God bless. Ted

 

[ALCapshaw2]

My doc is suggesting a mechancial aortic valve due to my age of 52. He says the tissue has a life of 12-15 years. I brought up the ON-X and he isn't a fan yet. Although the St. Jude technology is 30 years old, he claims the valve has been modified over the years to add improved features.
Ted

I hate it when Doc's raise an objection but do NOT clarify / substantiate their objection.

That raises several questions in my mind, such as:

Is he familiar with the (On-X) product?
i.e. Technological improvements over older designs -
1 - harder, smoother, stronger pyrolytic carbon > reduced clot formation
2 - leaflets open a full 90 degrees for less turbulence >reduce potential for clot formation
3 - pivots redesigned for reduced damage to blood cells(hemolysis)
4 - barrier to retard Pannus Tissue growth which can block or impinge leaflet motion

Does he know it's history? (time on market - On-X since 1996, number implanted - approaching 70,000, stats,

Or is he simply biased in favor of his preferred valve?
(or the valves that won the Bidding War at his hospital)

Note that surgeons who do not perform the Ross Procedure usually don't have much good to say about that option either.

IF you have a valve preference, it often comes down to finding a Surgeon that is familiar with your desired valve / procedure (which is something we don't hear often from our cardiologists or refering Doctors).

I suspect there may be similar issues with Surgeons when it comes to the latest developments in Tissue Valves as well.

 

[Sharon4495]

Hi Barbara,

Well, your post has inspired me! I learned about my Heart Valve Disease eight years ago and at that time my Cardiologist told me that surgery was most likely somewhere in my future. On July 31st after my TEE I was finally told that I needed to think about a surgeon. The first surgeon says wait six months and see..the second got my info on Monday and we hope to have his conclusion by the end of the week. This site has helped me tremendously in the last week or so (that's is when I found it). While I am not looking forward to surgery I am looking VERY forward to feeling "normal." I will keep you in my thoughts and prayers.