New guy with bad valve and questions

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C

CJoelHenry

Active member
Joined
Jun 15, 2008
Messages
26
Location
Orlando FL
Hi my name is C.J. and thanks to all of you here who have made such a wonderful community. Glad to have found you and that I am not alone with this dreaded OHS and AVR stuff. The information I have found here has greatly put my mind at ease, it has helped me to focus on my questions, and to have new questions, and to learn from other member?s fears and victories.

I had started with a Google search and became consumed with things like mortality rates, and making my last will and testament??. The reality of reading the posts on this site has me realize I am ?lucky?? since I have been told since I was a kid that my valve was bad. Though I never took any of it very seriously until recently my cardio guy said he wanted me to meet the surgeon??.. I am 49 1/2 and also have gotten over a lot of self pity reading about guys and gals doing this a lot earlier than me.

One thing I have not seen is any information posted on the financial aspect of OHS. Besides not working I mean, insurance, my doctor said the average cost for AVR is 180K, and that most insurance pays 80% or so. Well that is almost 40K they will be looking for, minimum. Hmmmmmmm.

I got onto my wife?s insurance in January of 2007, there was a pre existing clause that requires 17 months to satisfy, that brings us to June of this year, I have a call into the finance office at my heart doctor, they said they will get back to me so I can go ahead and schedule a cath test and then the AVR.

I have questions about:

Advantage/Disadvantage of minimal invasive Procedure for AVR.

Advantage/Disadvantage of travel to Boston or Cleveland ( I am in Orlando)

Advantage/Disadvantage of Valve consideration On-X ?

I read a post by Al that Bicuspid valves also have a high chance of aneurism I imagine that would be discovered with the cath and not by echo.

I guess at a place like Cleveland clinic great numbers are posted on the front door. At Orlando General the data is very scary over 2.5% Mortality, my cardio guy said surgeons do the procedure a lot here but there is a higher percentage of high risk ?old people? here I would still like to consider the best venue for this event??I should be fine, I am young and strong, well, a little pale when I climb the stairs.

Thank you in advance for any help or advice you can offer.

C.J.
 
Welcome C.J.! I'm glad you found us.

Most/many insurance companies have a stop loss amount for your out-of-pocket expenses. Our insurance has $2000 stop-loss for in-network care and I don't know what the out of network care is. In other words - we pay a 10% deductible on our medical costs. Once our 10% out-of-pocket deductible total reaches $2000, everything after that is covered 100%.
 
Welcome CJ.

You have a lot of questions and I am sure you will get some answers that might help in your decisions.

First off, most insurance plans have a maximum out of pocket each year. That can be up to a few thousand dollars but, once you reach that cap, you will not pay anything else. Check with the HR department or call the insurance company and I think your mind might be put at rest regarding cost.

Where you go might also depend on your insurance company. I looked into the Cleveland Clinic for my last OHS but my insurance would not allow it. I chose a local Cincinnati hospital and am very glad I did because the care was wonderful and the surgeon managed to get me through a tough surgery.

Try to find out where your insurance will let you go and then do your homework. Talk to nurses at the hospitals - they have the most information.

The cath or a TEE should help diagnose any aneurysm.

What all needs to be done will decide whether minimal invasive will work for you. If you find a surgeon you can trust then I am sure he/she will do what is safest for your situation.

The On-X seems to be a great valve. I have a St. Jude (since 1994) and it is going great also. Again, your surgeon can help with the type/brand of valve that will best fit your needs.

I am sure you will hear from others and may end up with a bit of overload so take one step at a time and ask all the questions you want.
 
My heart surgery 2 months ago at the Mayo clinic cost around $120000 which included a cardiac cath the day before and 8 days in the hospital. I think we've had a thread like this before and I want to say most people reported their surgery to be in this same area. I travelled from NC to MN for my surgery and didn't really find it to be that big of a hassle. However, there obviously more costs involved with out of state surgery including travel and hotel costs. I can't help much with the different advantages/disadvantages regarding AVR since I had a tissue replacement for my tricuspid. I'm sure someone will come along who can answer those questions for you.

Good luck to you whatever you decide.

Kim
 
Do not rely on an angiogram/cath to adequately image the aorta. The test has a different purpose, primarily to check the coronary arteries for any blockage prior to surgery. The pressure gradient across the valve is also measured.

Also do not rely on the surgeon's eyes accurately assessing the enlargement of the aorta during surgery. Enlarged aortas have been left behind that could/should have been taken out along with the valve.

I suggest you consult with a center that has a specialized surgeon/program focused on thoracic aortic disease, including BAVs. More centers are starting to do this.

An alternative to a cath is a 64 slice CTA, which will show the coronary arteries as well as the entire aorta in detail. Another option is MRI/MRA, which will show the entire aorta beautifully but cannot detect blockage in the coronary arteries.

Best wishes,
Arlyss
 
Actually, there are several ways in which aneurysms can be found, echo being one, MRA (an MRI for the heart and associated arteries), certain types of CAT scans, and, for a limited scope, cardiac catheterization.

There are several areas to scan for aneurysms. You're used to hearing about the asceding aorta (where the aorta leaves the heart in an upward arch and sends out arteries to the heart, brain and its other major upper-body destinations). There is also the descending aorta, which is the aorta after it finishes that arch and heads downward into the abdomen to feed the rest of the body and splits at the legs. (I'm thinking Ross and Rob-that's-me here.)

The part of the aorta that can be checked reasonably through catheterization is somewhat limited. The nonintrusive methods, with illuminating dyes, can see much more of the major vessels.

You may need to push to get an extended check for aneurysms. Not all of medicine has yet embraced that a baseline is appropriate for a bicuspid valver who needs surgery to replace the valve.

The cardiac cath is still the most common method for inspecting the coronary arteries for placque and arteriosclerosis, however.

There is a ton of information already posted for the On-X valve, and the advanced search (in the blue bar) can help you find that. It's largely very positively viewed (I agree).

Expense of travel and room/board and not having family to help out are disadvantages to flying to Cleveland or Boston, which have excellent valve surgery venues. And the difficulty of presurgical visits and working with your distant surgeon after the procedure.

Some downsides of a minimally invasive procedure are the smaller viewing field for the surgeon, tight space to operate in, and a slight possibility of finding something that might require you to be opened up anyway.

Welcome to the neighborhood, CJ.

Best wishes,
 
Welcome Aboard C.J. !

There are some good hospitals in Florida. Two that are frequently mentioned are Cleveland Clinic of Florida and Shands. I've forgotten where they are located but you can probably find references to them with a SEARCH on VR.com or GOOGLE.

Have you been told that you have a Bicuspid Aortic Valve?
If so, the definitive tests of the Aorta are either a Chest CT or MRI. One member recently posted a picture of his aorta with aneurism. It was a pretty impressive image! IF you have BAV and the often associated Connective Tissue Disorder (see that new Forum for lots of related info), then you will want to be SURE to find a Very Experienced Aortic Surgeon. I would guess that most surgeons do not have a lot of experience in that procedure.

The 'Big 4' in Mechanical Valves were all designed or patented by Jack Bokros, Ph.D., starting with the St. Jude (Masters Series) in 1977, the ATS and Carbomedics sometime in the 1980's, and his 'latest and greatest' design, the On-X Valves which were released to the World Market in 1996. See www.onxvalves.com and www.heartvalvechoice.com for details. Catheran Burnett, RN, can give you specific details comparing performance of those valves. Her contact information is [email protected] or 888-339-8000 ext 265.

If you require surgery to repair your aorta, I would 'guess' that most surgeons would prefer to do a full sternotomy (which is usually Less 'Uncomfortable' than most "mini-sternotomies".

Other High Ranked Heart Centers in the SE include DUKE in NC, Emory Crawford Long in Atlanta, GA (which is one of the major users of the On-X Valve), UAB in Birmingham, AL, and Vanderbilt in Nashville, TN (Dr. Petracek is a big proponent of St. Jude Valves).

I suspect that most insurance companies have a Maximum "Out of Pocket" ceiling that helps minimize the cost to patients.

Good Luck in your Quest.

'AL Capshaw'
 
Thanks so much!

Thanks so much!

I am so glad I posted. Thanks for all this information! I guess I can relax about the financial issue that I had been dwelling on, thanks for clearing that up, the ceiling sounds more appropriate to me.:)

However, I did not mention that I had to COBRA the insurance and am paying 650 a month for Blue cross blue shield. My wife is eligible to get new insurance January 2009, so I hope that the worst will be over (they will have another 17 month pre existing clause I am sure)

I am anxious to know how much "follow up" is involved with AVR, provided all goes well, I am hoping it is just a matter of blood tests and such. Not 650 a month......

I had tried to contact Shands, I called at least 6 different times and left 6 voice mails and never got a call back. I had no idea that there was a Cleavland clinic in Florida, it is down south, but not so far from Family. I will be calling them Monday.

tobagotwo, thank you for insights into the required tests. While I have always been told I have a bicuspid valve, the relation to aneurysms has never been brought to my attention.

The cardio guy explained to me that sooner is better than later, that they would most likely do a cath the day before surgery to check for blockages, and then do a full sternum OHS.

The concern is to check the tissue and be prepared before the 11th hour, I would think.

I read a some more posts on Min Invasive, and it seems to me that there may not be that much gain in cutting all that muscle, and limiting my surgeon to access that he may need to do a "real good job", there was an analogy to changing your oil in a car from the bottom or trying to do it through the wheel housing, I got the point.

I saw some of the images posted by Aaron and this has raised my concern that they only plan to do a cath the day before surgery, maybe this is SOP.

I need more data on valves, and I need to get my test scores from my Orlando doctor, for sure they will want them at Cleavland/Florida clinic.

Thanks so much for all this information.
 
Hi, welcome to valvereplacement.com I think your estimate of $180K is high. I was in the hospital several days longer than most (9 days), had 3 procedures (AVR, endoscopy, and pacemaker implant), and my bill was $112K and change. My insurance paid for a but a couple of thousand.

U.S. Valve Manufacturers in alphabetical order (pretty sure I got them all):
ATS, Mechanical Valves, Headquarters: Minneapolis, MN www.atsmedical.com

Carbomedics (Sorin Group), Mechanical Valves, Headquarters: Austin, TX
www.carbomedics.com

Edwards, Biological Valves, Headquarters: Irvine, CA, www.edwards.com

Medtronics, Mechanical & Biological Valves, Headquarters: Minneapolis, MN
www.medtronic.com

On-X Life Technologies, Inc., Mechanical Valves, Headquarters: Austin, TX
(formerly Medical Carbon Research Institute)
www.onxlti.com www.onxvalves.com www.heartvalvechoice.com

St. Jude, Mechanical and Biological Valves (also Allografts), Headquarters: Minneapolis, MN, www.sjm.com

Some of the above also make equipment for valve repairs (vs replacement)

I would encourage you to check out all the manufacturers and become informed about what is available.

FYI, On-X has an ongoing Clinical Trial for reduced anticoagulation: http://clinicaltrials.gov/ct2/show/NCT00291525
To participate in the Clinical Trial you have to have your valve implanted at one of the participating centers. There are two in Florida, one in Gainesville and one right in Orlando. Info on POCs at both locations is on the above website.

I really think you ought to rethink whether you really need to go to Boston or Cleveland, or some other distant facility, particularly since finances seem to be an issue. I think you can get a good experience much closer to home, and it will save a lot in hassle, travel, better pre-and-post op follow up, etc.

Good luck!
 
Happy you found us but sorry for the reason. You've gotten some good info here and there is always someone to help with your future questions.

Good luck.
 
Welcome, you've gotten lots of good information so far and I can't add to it, except to tell you that the Cleveland Clinic is in Weston and has a very good reputation. I would not hesitate to start there. I'm glad you found us and we look forward to helping you on this journey.
 
Hi, c.j., welcome to the forum. Most insurance will waive the preexisting insurance clause if you have continuous coverage (no breaks in service-coverage) Cobra is considered coverage. Each insurer is different, so follow up on what their policy is regarding continuous coverage.

JJay
 
Hi CJ, sorry i can't answer any of your questions. Just wanted to say welcome and wish you all the best.
 
Good Morning CJ

Sooo glad you found this site. It is the very best place. I'm sure by now most of your questions have been answered, so I thought I'd just put in my 2cents. This group will be with you through everything you're facing. You will never have a question that goes unanswered and will probably have many opinions. The good thing is that we all really care here.

I'm Evelyn whose husband, Tyce, had OHS in New York in 2002....June 26 will be 6 years. He had a St. Jude's implanted and has had no difficulty (thank God) since. He is on coumadin/warfarin which has not been an issue, either. I found this site and know we would not have gotten through the surgery without everyone here. Please remember, your family is going through this with you, so if they would like to check in here, the support group extends to them, too. As traumatic as it can be to you, it is the same to your family members.

I know we have some Florida/Orlando area members who will check in here and help you out with the questions you have regarding hospitals, etc. Sometimes the weekends are slow, so just be patient.

Again, welcome aboard.....I'm glad you found us.

Evelyn
 
Hi CJ -- just wanted to add my welcome. Looks like you are getting some great information from the good folks here. Ask away and chances are you will get the benefit of a lot of experience and knowledge here.
 
Welcome CJ and hope all goes well. My total bill was around $100,000.00. Didn't cost me anything out of pocket but I had medicare and BC/BS. The billed amount and the paid amount was far different. I'm sure your insurance has a max out of pocket and you may have already meant that by the time you have surgery.

again Welcome
Earline
 
Hi, CJ, I don't think you have to worry about the financial side of it, either. I am from NC and had my surgery in Boston at a hospital that was still considered in-network: the bill for 9 days was $109,000 and our responsibility was about $1,900 plus change. I had met some of the deductible at home doing testing beforehand. Good luck to you as you gather your information. This website was an invaluable help to me!
 
Moving right along..........

Moving right along..........

Thanks for the warm welcome from each of you.

I contacted Cleveland Florida Clinic today, after registering my insurance data with the admissions office, I was then able to call the Cardiac department and spoke with a director there.

After relating my history and symptoms, she set me up, and was very understanding of my being in Orlando and traveling there so scheduling a 2 day trip was above and beyond the call, all I will need to do is get my records transferred from Orlando to CFC.

She scheduled tests for all day 07/21/2008 (Stress test, eeg ,echo and pulmonary function) and then a meeting the next day 07/22/2008 with the cardiologist (Dr. Dellum) at 8AM and the surgeon at 10 AM (Dr. Boyd).

I am so pleased that this venue exists! The level of service so far is top shelf I believe these things run well in a facility that does a lot of them, the entire team, and the entire in hospital experience involve more than just a super surgeon, I feel comfortable so far in reading Dr. Boyds experience and look forward to what his opinion is of all my data and tests.

Keep smiling,

CJ
 
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