Surgery June 23rd....very mad

[JodyC]

I finally got to speak to my new surgeon Dr. Bove from Michigan. I am sooooo freaking mad I could just.....something really bad. I asked him what valve he preferred and he said he planned to put in the carbomedics valve. Now mind you my first heart surgeon who preformed the unsuccessful surgery on me May 22nd came to my room and told me and my family he had been on the phone speaking to Dr. Bove and that he might be able to put in the On-X for me no problem. Well after speaking to Dr. Bove he told me my first surgeon Dr. Riordan had never mentioned my valve choice and he could still do it but it would mean postponing my surgery until he can get the valve in stock. I could just go off on Dr. Riordan. It is bad enough he miscalculated my arotic valve size to begin with but then he just dropped me and never took care of making sure Dr. Bove knew what I wanted at all even though he sat right there in my room and said that he did. Dr. Bove told me on the phone " I got into this surgery the same way you did." I asked him then if he wanted to do my surgery and he said yes very much he just wanted me to understand he wasn't that well informed from Dr. Riordan. How would you all handle this? I am just furious. I started to cry on the phone with Dr. Bove and I could tell he felt bad. He said he would order the On-X and try to get it in as long as I was ok with having the carbomedics if it didnt' get there in time. I said I was because I really can't put my surgery off any longer and I was doing well to make it to the 23rd as it is. I at least know what the Konno procedure is now and he does them fairly often. My surgery will be 4-6 hours long and he thinks my valve should last 20+ years. I know alot of people on here say it is for a lifetime and that is what I am still hoping for. This whole thing has just been chaos from the get go and I just can't believe sometimes how patients get treated like we are being done a favor by the doctors operating on us. Even my regular GP can't figure out why Dr. Riordan wasn't able to figure out my valve size between the heart cath and the last minute CT scan. I don't know either but I do know I am going into the second surgery in a lot worse shape than the first one and that concerns me. Thanks for letting me vent. It is better to sit here and type out my fustrations than cry about it.

 

[Phyllis]

Jody, I am so sorry to hear this, but it sounds like you have a great surgeon for this second surgery. I'm sure Al Capshaw will be along, but if he doesn't see your post, you might pm him. I know he must have some contact numbers at On-X and there may be a way to speed the arrival of a valve.
Vent away- that's what we are here for!!

 

[Nancy]

I have found out from a long history of helping my husband through many, many surgeries and procedures that doctors do not communicate much with each other. I always thought they did, but no, they don't. They are all extremely busy (at least the good ones are) and trying to play telephone tag from one doctor to another is very hard.

Lots of helpful information just never gets to the source.

The only way to make sure that your doctor is up on things is to do it yourself. Get your own records and bring them to the doctor, and if you cannot, then sit down and type up whatever you can, in as short a form as you can. They will not have time to read a long epistle.

 

[WayneGM]

Sorry you are going through this. I'm not a valve choice expert by any means, as I had a repair, but there's plenty of folks on this site who have successfully used the carbomedics.

Did Dr. Bove say how much experience he's personally had working with the On-X? If he hasn't done many because he has preferred the carbomedics, that may be something to consider.

 

[Freddie]

Jody,
So, whats wrong with the Carbomedics valve?
What ARE the downfalls with this valve?

Are you upset because of the different valve or because the two doctors really didn't communicate.......or both.

Just trying to understand...bare with me.
I didn't have a choice and have a carbomedics valve

 

[Smiley2000]

I am so sorry to hear that you have to go for surgery again! Wishing you all the best and we'll be here for you when you come back.

hugs,

 

[JodyC]

Freddie

Freddie

There is nothing wrong with the carbomedics valve I just really wanted the On-X because of the possibiltiy that just maybe down the road I might not have to take warafin. I know that is not a for sure thing but the hope is there and the valve is also supposed to be less damaging to the blood cells. I am upset that had they communicated and Dr. Riordan told me they had I would have had the valve I wanted. The fact that one of the top five heart surgeons in the country prefers the carbomedics is good enough for me that if it comes down to it I will gladly take the valve and be happy.

 

[MNmom]

I left the Valve choice up to the Dr

I left the Valve choice up to the Dr

Hmmm, I never questioned the surgeon's valve choice- I had Dr Sundt at the Mayo, who is one of the best, and asked him afterwards which valve he used and he said the carbomedics. I will let him do his thing so I can do mine.

 

[briansmom]

I don't blame you for being furious. Doctors don't realize how much it sucks to be out of control of your own life. To really see how cavalier they are about it would send me off also. Please take a deep breath and call On-X yourself and make sure that they will handle the valve. I know for my son's surgery they offered to be in the surgery with the doc because he had to sew on the aorta. I really believe that they will do whatever you need - at the very least it is worth a shot and it will make you feel productive.

 

[Ross]

There is nothing wrong with the carbomedics valve I just really wanted the On-X because of the possibiltiy that just maybe down the road I might not have to take warafin. I know that is not a for sure thing but the hope is there and the valve is also supposed to be less damaging to the blood cells. I am upset that had they communicated and Dr. Riordan told me they had I would have had the valve I wanted. The fact that one of the top five heart surgeons in the country prefers the carbomedics is good enough for me that if it comes down to it I will gladly take the valve and be happy.

Hon if that's what you want, tell them to put surgery on hold and get you the valve you want. This is as much your choice as theirs, but this is your LIFE. I don't know that I'd hold my breath on the no Coumadin thing, but it's a possiblility coming down the road.

 

[ALCapshaw2]

Call Catheran Burnett, RN at 888-339-8000 ext 265 by 5pm CDST today or Tuesday at the latest. She is the Education and Promotion Manager for On-X and can make things happen with a few days notice.

 

[hall]

Hopefully you get this straightened out! I hope you get the valve you want in time. Hold out for it if you can. You should have what you want. It is your life and your body! Good luck. Let us know.

Deb

 

[westie]

delivery should be overnight

delivery should be overnight

my surgeon was dead against using the on-x valve but said he would implant it for me if i insisted. he told me to go away and think the matter through carefully and let him know my decision.

he said i could let him know anytime before 7.00 pm on the night before the operation and he would get the valve from the wholesaler in auckland, new zealand. i know for a fact the hospital did not stock the valve because none of the surgeons recommend it

the saliant point here is the surgeon had total confidence he would get the on-x valve delivered overnight even if he ordered it on a sunday!

in the end i chose the on-x valve some weeks before the surgery, i have no regrets and as i was leaving the hospital the surgeon mentioned some new clinical information ( which he had faith in ) about the valve from germany which he said quite promising.

has your surgeon heard of dhl or fed-x?

 

[Karlynn]

Jody - You have every right to be mad. But I agree with the others, it sounds like you are in good hands with Dr. Bove. If it were me and I wanted the On-X, I use that # Al C. provided and help your surgeon make it happen. I HAVE to believe they can get the valve in and not have to postpone your surgery. Best wishes!

 

[JodyC]

Thanks

Thanks

Thank you all for your replies. Oaktree, yours made me cry. Those are all the things I worry about and the most is leaving my daughter. Her dad already left before she was born never to return and I don't want to be the next one to leave her. She needs me so much. We have such a great life together.
I will just have to have faith and leave it in God's hands to do with as He will. Thank you so much for your kind words, it was like you looked right into my heart.

 

[Faye]

Jody - I am sorry you are having to go through all of this. I wanted to tell you that the On-X folks shipped a couple of valves (different sizes) overnight to my surgeon. I am very happy with my valve choice.

Good luck in the coming weeks and try to stay positive - attitude affects more than we realize!

 

[njean]

Thank you all for your replies. Oaktree, yours made me cry. Those are all the things I worry about and the most is leaving my daughter. Her dad already left before she was born never to return and I don't want to be the next one to leave her. She needs me so much. We have such a great life together.
I will just have to have faith and leave it in God's hands to do with as He will. Thank you so much for your kind words, it was like you looked right into my heart.

You said it all right there --- "leave it in God's hands". Some things are beyond our control & we just have to place our faith in the surgeon & pray that God will give him the wisdom to do the best job possible!

Best wishes to you & hang in there! You will be just fine!

 

[Plumber1]

Wow, sorry to hear all of this is happening Jody. I had complications in my process, but nothing like what you have. Keenly aware that you have shown a unique strength to endure and I find it easy to label you as a survivor.

Keep up the good spirit and give the doc's your 2-bits anytime they are in need of an adjustment. Keep fighting the good fight.

I have an On-x and know I made the right choice for me.

Peace.

Mark

 

[CThrock]

Jody, so sorry to hear about the bump in the road. Hopefully things will work out that you won't have to delay your surgery. You will be in my thoughts and prayers. Just hang in there!!!

 

[gijanet]

Jody, sweetie............(((hugs)))

Jody, sweetie............(((hugs)))

I am pained just to read your post. I feel so badly for you.

Sent you an e-mail but forgot to remind you that Dr. Bove specializes in patients who are in desperate situations. He is accustomed to working on patients who are in crisis, so to speak. WE experienced this firsthand, unfortunately. Katie's blood pressure bottomed out after her fourth surgery (in part due to my strong aversion to putting in a mechanical valve in a four year old, Dr. Bove repaired Katie's valve in addition to her extracardiac fontan. However, the newly tightened valve {extra tight due to Katie's myxomotomous sp? tissue} and Katie's new fontan circulation - the other part of her surgical adventure - was just too much for her little system and she coded before going up to recovery, so they had to reopen her and put in a mechanical valve. This was our 2 for 1 surgery sale!) She had coded, yet Dr. B. calmly opened her up, replaced her valve and here she is, alive and kicking and driving mom nuts, almost three years later. He is indeed a miracle worker. (He did kind of give me a gentle little dig when he talked to us post-op and said that he probably should have just replaced the valve to begin with, but - and looking at me - with a four year old, we had to try and save that valve ....................sigh! So glad that is behind us). Anyway, this man specializes in dire situations and complex surgeries. Please take comfort in that.

I'm still hacked at your Dr. R for telling you that he had talked to Dr. B about the On-X valve and most obviously didn't. Wait till you meet Dr. Bove. He will change your mind about surgeons. He genuinely cares. You'll see and become one of his fan club members, too.

I will keep checking on you. You are in our prayers. Hugs. Janet