On X trial

[JodyC]

Hi everyone I am new to this group although I did visit last year when I was first diagnosed. Since then I have had a year of living in denial and trying to ignore my condition in the hopes that it would heal itself. I have severe aortic stenosis as a result of radiation to the chest to kill the cancer I had as a child. Now I need a new valve with a root patch of some kind, today was the first day I had heard that I needed that so I haven't had a chance to research it beyond what the surgeon told me. I met with my surgeon this morning and talked with him for an hour or so on what type of valve I want and what to expect from my surgery. I am only 35 but with the radiation I have had and the destruction that has resulted from my cancer I know I don't want to go through another surgery if I can possibly avoid it. I have chosen a mechanical valve and after today I am very confident with my surgeon as well. He said my valve was really small to begin with and he would like to put in a slightly larger valve so I needed this patch for the new valve to work. I have already had my sternum broken once from my cancer surgery so I am nervous about having it done again. My surgeon doesn?t think it will pose any more of a problem for me than someone who has never had theirs cracked. I also only have one lung that functions but it is strong enough that it would compare with someone with two lungs functioning at 80%.
We discussed heart valves and I told him that as a computer tech it seems to me that although the St. Jude is a great valve that after all these years there should be something better out there. He said he was already going to approach me about the ON-X valve once I decided for sure that I wanted a mechanical. I have read about the ON-X valve already and thought it sounded like a good choice for me. He then said that their surgeons group was going to be one of the first in the US to do trials on using aspirin instead of coumadin. He said he would look into my being in the trial if it were something that I wanted to do. I think it is great that we are going to have trials in the US and that overseas they have already had success with the aspirin instead of a blood thinner. I doubt that I would be able to take part in the trial because of my other conditions but I am excited to hear we are getting closer. I still want the on-x with the hope that later I too can go off of blood thinners.
I just wanted to introduce myself and I will be joining the pre-surgery group as soon as I call the surgeon back and pick my date. I need to go have some work done at the dentist first and get all my ducks in a row. Fun insurance paperwork to fill out, leave of absence from work....etc. I am so glad I found this group, I feel better already.


Jody

Mom of Morgan (age 7)
Aortic Stenosis, asthma, thyroid cancer (removed), Neuroblastoma survivor.

 

[Hot Rod Harry]

Let me be the first to say good luck to you, & I hope that all goes well with you. It certainly sounds like you have been through enough already..

I've also been asking about the onX valve (see other thread) & it sounds very promising. Let us know how it goes. I had my valve "repaired" so I wont need it right away, but I'm staying on top of this valve. Welcome.

 

[marie]

Sounds like you've got it together. Welcome and good luck. Keep us posted and be sure and ask any questions you may have. Lots of knowledge and support here. A few laughs as well.
Earline

 

[ctyguy]

Welcome to the forum ! Sounds like you have been through alot already but you have a good handle on what your going to do. I have an On-X valve (aortic) and Im pleased that I do. The Coumadin trials have actually been going on for a while in the US (im not in it as of yet) but I've read that it will be 2015 before they have any firm results. That didn't factor into my choice however it was more a bonus if it comes to fruition. The flow dynamics of the valve was the big selling points to me, seems its the next generation and is rapidly becoming the valve of choice. My surgeon said if he needed a mechanical valve that this was the one he would choose. I've read there are about 60,000 that have been installed in the US, about 1/2 million for the St Jude. Both seem to be great choices.

If you have any other questions please ask away, there are a ton of folks here with lots of great info and experience.

 

[ALCapshaw2]

Welcome to our world Jody.

As a fellow Radiation Therapy Survivor and AVR recipient I can assure you it is Best NOT to have to replace your valve a second time therefore your choice of a mechanical valve is appropriate. There are over a dozen Radiation Survivors on VR.com who all have Mechanical Valves. (You can find their stories by doing a SEARCH for keyword "radiation" or "Hodgkins").

When it comes to the On-X valve, I concur, it seems to offer significant technological advantages over the older mechanical valve designs. The Low / NO anti-coagulation trials are a bonus, but to my mind it is the Reason for those trials (i.e. Lower Clot Formation Risk and Less Damage to Blood Cells) that convinced me to want the On-X for my next valve when the time comes.

SOME Radiation Survivors have required replacement of a second valve several years after their first valve replacement. SOME surgeons are beginning to re-think the standard recommendation of only replacing the one valve that meets the recommendations for replacement, and offering to replace two diseased valves at one time in order to avoid having to do a second surgery in a few years. This would be something to discuss with your surgeon.

By the Way, my AVR was my second OHS, having had Bypass Surgery a few years earlier and I came through OK. A third surgery gets a little more 'dicey'.

A surgeon who is familiar with Re-do's and Radiation Damage is a definite PLUS.

 

[andrewg]

Hi Jody,

I had an On-X installed last June, and I'm in the FDA trail also.

I was selected to be in the Plavix / low dose aspirin group, and started that drug therapy last September.

So far no problems, everything is going fine...

 

[AngelaR]

Hi Jody.

Welcome. Wow you sure have over come some hurdles already! What an inspiration.

My hubby, Ray, will be having his AV replaced on 1 May with an On-X. He has no other history of health problems and he is still asymptomatic. We are having our surgery done at VCU in Richmond as they are participating in the FDA clinical trial study. Ray signed up for it, however, we won't know which control group we are in until 3 months post op.

This week he is doing the PLAVIX and aspirin load to do his blood work on the 14th to see if he is sensitive and even a candidate to participate in that control group.

Like Scott (ctyguy) our decision is based on the design of the On-X and the study is just an added bonus. We are just waiting now and that is the worst part. I just want to get this in the past and start the next journey.

I love coming here and and it really helps read what others have been through and helps give you insight as to what it will be like post surgery.

Keep us posted on your journey and good luck!

Angela

 

[Gail K]

SOME Radiation Survivors have required replacement of a second valve several years after their first valve replacement.

Hello Al,

Thank you for this comment as I was unaware of this. I will need AVR within a few years as a result of radiation therapy. My doctors said there is minor damage to a second valve, as well, but that it can be repaired. (They never told me the name of the second valve.) Your comments make me wonder if the second valve may also need replacement after some time. I have been thinking of getting the ON-X for my AVR for reasons that include the hope of not having to take coumadin after some years. Do you know if there are ON-X valves that can be used to replace other valves besides the aortic valve or could I end up having to get a different type of mechanical valve for the second valve and then end up having to take coumadin for life anyway?

Thanks,
Gail

 

[ALCapshaw2]

Hello Al,

Thank you for this comment as I was unaware of this. I will need AVR within a few years as a result of radiation therapy. My doctors said there is minor damage to a second valve, as well, but that it can be repaired. (They never told me the name of the second valve.) Your comments make me wonder if the second valve may also need replacement after some time. I have been thinking of getting the ON-X for my AVR for reasons that include the hope of not having to take coumadin after some years. Do you know if there are ON-X valves that can be used to replace other valves besides the aortic valve or could I end up having to get a different type of mechanical valve for the second valve and then end up having to take coumadin for life anyway?

Thanks,
Gail

Gail - you may want to go to the STORIES section (from the Home Page) and read Johnny Stephens story. He had both his Aortic and Mitral Valves Replaced at the same time.

The 'old theory' about Mitral Stenosis is that it progresses Slowly and does not need to be replaced until it meets 'surgical guidelines'. As I said before, some surgeons are beginning to re-think that position. It can be a tough call, especially if the MV is not severely diseased. I would *guess* that Mitral Valve Repair is not likely, at least not if it is a valve with severe Stenosis and Calcification. The Repair Option would be a good question to ask if the MV is still in the 'early stages' of disease.

Dr. Lytle at the Cleveland Clinic is their 'Radiation Damage Guru'. He presented a statement last year that Radiation Damage typically begins to show up 20 years after treatment. It seems like Radiation Damaged Valves are only now beginning to be recognized as a growing problem. Dr. Gosta Pettersson at CC has the most experience of the CC surgeons with placing On-X valves.

Yes, On-X makes Both Aortic and Mitral Valves. See www.onxvalves.com and www.heartvalvechoice.com

You may want to contact the On-X Manager of Education and Promotion, Catheran Burnett, via e-mail at [email protected] Her Toll Free Number (in the USA) is 1-888-339-8000 ext. 265 or direct at Area Code 512-339-8000 ext 265. She is a former Surgical Nurse and can probably answer all (or most) of your questions. She can also direct you to Hospitals / Surgeons who have experience with their valves.

'AL Capshaw'

 

[Gail K]

Yes, On-X makes Both Aortic and Mitral Valves. See www.onxvalves.com and www.heartvalvechoice.com

'AL Capshaw'

Hi Al,

Thank you for your quick reply! It's a real relief to learn ON-X also makes mitral valves because I kinda had my heart set on ON-X. Thanks also for the other info. I'll look into it all. This is at least the second time you've helped me with questions and I really appreciate it.

Gail

 

[JodyC]

on-x and radiation

on-x and radiation

Thanks for the welcome and all the great info. I didn't know there were so many other people out there getting valve replacements due to radiation damage. I feel like the women at the end of the movie 'I am legend' when she gets to the gate on the mountain and finds out she is not the last human.
I asked my surgeon about any of my other valves suffering damage and he said none of my tests showed any cause for him to worry about my other valves. He showed me on a plastic heart model where the aortic valve is and how it sticks out and that is why it tends to suffer the damage from radiation as compared to the mitral which is more inside and protected. I am going to schedule my surgery for about five weeks from now so I have time to get to the dentist and get my last two wisdom teeth removed. Thanks again for all the info, everyone here seems very kind.

 

[Kathy McCain]

Onx trial

Onx trial

Hello Jody, I am fairly new myself. Yes, you have definitely found the right place! The people here are incredibly supportive, and loyal. I had been following this group for quiet awhile, when I was diognosed with severe aortic stenosis,due to a calcified bicuspid valve. The night before my surgery I decided to send a post. Well within 20 minutes I could not believe the heartfelt responses! I was extremely nervous, and to think that total strangers could be so kind! It not only gave me more courage to face my surgery, but it was one of the most touching experiences I have had!

Good luck to you, and God bless! Kathy

 

[TBurg18]

Hello, I will be having an AVR and probably a MVR next week. It's looking like double mechanical and my doc will be using the St. Jude on both. He doesn't have that warm and fuzzy feeling yet with the ON-X. He claims the St. Jude has been modified over the years to add improvements. I'll report back how my double valve replacement goes. Also, as Al points out, my doc did say the mitral could possibly be repaired but he is concerned about continual raditaion damage down the road so I suspect he'll want to replace it. best regards and God bless. ted

 

[Gail K]

Hello, I will be having an AVR and probably a MVR next week. It's looking like double mechanical and my doc will be using the St. Jude on both. He doesn't have that warm and fuzzy feeling yet with the ON-X. He claims the St. Jude has been modified over the years to add improvements. I'll report back how my double valve replacement goes. Also, as Al points out, my doc did say the mitral could possibly be repaired but he is concerned about continual raditaion damage down the road so I suspect he'll want to replace it. best regards and God bless. ted

Best wishes for your upcoming surgery! Yes, please do let us know how your double replacement goes. I hope your recovery goes well. God bless!