Waiting... and excited!

  • Thread starter MyBloodRunnethOrange
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MyBloodRunnethOrange

Hello,

Let me first introduce myself and say thank you for allowing me to be a part of this community. I have been lurking as a guest for sometime now but decided to join up today as my surgery is approaching fast.

I'm a 34 year-old father of a beautiful two-year old little girl and lucky husband of a beautiful and caring wife. I was diagnosed at age 22 with my problem quite by accident. I was seeing my GP for mononucleosis when he found my murmur. I had an echo done the following day and found out my aortic valve was leaking. I have been monitered annually ever since and was placed on a low dosage beta blocker and then later an ACE inhibitor. My heart has tolerated the leaking well until late last year when some noticeable changes were seen.

Fast forward to February of this year, and I had decided I was going to the CCF for my surgery based on their outstanding reputation. Dr. Lars Svensson is my surgeon of choice based on several references and also on my particular needs. I will have a mechanical valve with a dacron graft installed to also repair my aortic aneurysm. This surgery is now scheduled for May 3, 2007.

Here's where things get exciting. I had researched extensively trying to decide the best mechanical valve for me. With alot of help from this forum and other sources, I decided that the On-X valve was the right choice for me. However, Dr. Svensson indicated to me that he preferred the St. Jude valve due to it's proven track record. That was my second choice, so I still felt comfortable with his preference.... at least until last night.

Something has been nagging at me for the last few weeks causing me to revisit my thoughts on the On-X valve. After re-reading the stories of many satisfied On-X valvers here (particularly Randy from Wisconsin), I decided that it was worth a shot to try and convince Dr. Svensson to reconsider using the On-X.

Today, I contacted Ms. Burnett at MCRI in Texas to enlist her help. I inquired about a rep possibly meeting with Dr. Svensson to compare the On-X with the St. Jude... much like Randy did with Dr. Petterson in his quest to recieve the On-X. Ms. Burnett was outstanding! She was not only extremely compassionate about my situation, she was incredibly knowledgeable about her product and confident she could assist me. I highly encourage anyone wishing to learn more about the On-X valve to visit their website and give Ms. Burnett a call.

I am now waiting to hear what Dr. Svensson thinks... and hoping and praying that he will agree to use the On-X for the first time with me. Please keep your fingers crossed for me and keep me in your prayers. I'll keep everyone posted on how everything goes just as soon as I know something. Thanks again for the wealth of info here and making me feel like I'm not alone. It is indeed a great comfort to me.

Sorry for the novel. :D

Chris
 
Welcome, Chris! I'm glad you decided to join and even happier that VR.com has been such a wealth of information for you. It sounds like you have done all your research and have made all good choices. I will put you on the calendar for May 3rd. and I hope you get the valve you want!:D
 
Chris - I think you made a great choice for using CCF for your surgery. They have a great reputation and I had my surgery there (Dr. Cosgrove). Good luck and I think you will be very satisfied with the results.
Bill
 
Welcome!

Did you contact Randy (Randy & Robyn member name)? I believe he was the first to have the On-X installed at CCF. I know he did a lot of leg work with the company and there was a representative there during the surgery.

Best wishes!!
 
Chris

Chris

Clemson fan?..lol..Lived in S.C. .on the lake near Clemson .Now, my age 14 year old Grandson wants to go to college there ..Even, tho we live in Ga.....Just wanted to welcome you.We have a member who is moving to Aiken..Forget now..but will research her. Bonnie
 
My son just got an On-x valve with dacron graft. He is 16 and 5 weeks post OHS. My selection of the On-x valve caused my son's docs to start using them a lot.
 
Phyllis said:
Welcome, Chris! I'm glad you decided to join and even happier that VR.com has been such a wealth of information for you. It sounds like you have done all your research and have made all good choices. I will put you on the calendar for May 3rd. and I hope you get the valve you want!:D


Thanks so much for the warm welcome Phyllis! I have tried my best to make the best choice for me, and this forum and the members like you have been such a blessing. Thanks for putting me on the calendar and keeping your fingers crossed for me.

Chris
 
Bill Hall said:
Chris - I think you made a great choice for using CCF for your surgery. They have a great reputation and I had my surgery there (Dr. Cosgrove). Good luck and I think you will be very satisfied with the results.
Bill

Thanks for the vote of confidence Bill! I'm glad that your surgery was a success also. A good friend of mine's father, who is a doctor here in my hometown, selected Dr. Cosgrove for his AVR and was also quite pleased with his treatment. Thanks so much for the well wishes... much appreciated.

Chris
 
Karlynn said:
Welcome!

Did you contact Randy (Randy & Robyn member name)? I believe he was the first to have the On-X installed at CCF. I know he did a lot of leg work with the company and there was a representative there during the surgery.

Best wishes!!


I didn't contact Randy because I haven't seen him around in quite awhile. Please let me know if I'm mistaken about that or if you know how I could reach him. I'd like to personally thank him for inspiring me to go the extra mile in order to hopefully recieve the On-X valve in a couple of weeks. I am aware through reading the posts here of how much he did in order to convince Dr. Petterson to use the On-X at Cleveland for the first time. In fact, when I spoke with Ms. Burnett at MCRI today, I told her that Randy's story is what made me contact her. She remembered him too and laughed when I told her she was becoming famous here on the forum. Thanks for the note and please do let me know if you have a way for me to contact Randy. Thanks!

Chris
 
Granbonny said:
Clemson fan?..lol..Lived in S.C. .on the lake near Clemson .Now, my age 14 year old Grandson wants to go to college there ..Even, tho we live in Ga.....Just wanted to welcome you.We have a member who is moving to Aiken..Forget now..but will research her. Bonnie


Hi there Granbonny! You guessed the meaning of my username perfectly I must say. lol

I attended Clemson from 1990-1995 and cherish those days as some of my best. There is truly something in those hills that is special. Your grandson sounds like a wise young man, and I'm sure he would make a great "Clemson gentleman". Thanks for the welcome, and please do let me know if you recall the member who is moving to Aiken. Take care...

Chris
 
briansmom said:
My son just got an On-x valve with dacron graft. He is 16 and 5 weeks post OHS. My selection of the On-x valve caused my son's docs to start using them a lot.


Hello briansmom. I have read all of your posts concerning your son with great interest... even before I signed up as a member here. I'm sorry that he has had to endure all of this at such a young age, but I'm happy that all is well now. I'm very curious if your son's doctor had any thoughts or reservations regarding using this valve along with the dacron graft? I'n fact, I am going to create a new thread with this question to get the opinions of others here that also have the On-X and a dacron graft. I hope to hear your reply here or in that thread. Thanks for your input.

Chris

P.S. I am wishing for a continued smooth recovery by your son. He must be very brave to endure this at his age. And to think I thought I was young at 34. lol :p
 
If you want it, go for it!

If you want it, go for it!

We were in a similar situation with our daughter Katie. Our surgeon used the carbomedics valve because he insisted that it has a proven track record. I, too, had one of the On-X reps contact him, but to no avail. I would not have trusted Katie's life to any other surgeon - he is truly a miracle worker when it comes to kids with very unique plumbing and is internationally renowned - but I do wish I had fought him on valve choice. That's easy to say now. At the time I was simply battle-fatigued from the three previous surgeries, husband's deployment, seeking out additional opinions, etc...............sigh! I just pray that Katie and I can live with his choice and my lack of backbone.

If you want the On-X, then fight for it. I wish I had. Good luck and I wish you well. Please keep us posted. Hugs. J.
 
gijanet said:
We were in a similar situation with our daughter Katie. Our surgeon used the carbomedics valve because he insisted that it has a proven track record. I, too, had one of the On-X reps contact him, but to no avail. I would not have trusted Katie's life to any other surgeon - he is truly a miracle worker when it comes to kids with very unique plumbing and is internationally renowned - but I do wish I had fought him on valve choice. That's easy to say now. At the time I was simply battle-fatigued from the three previous surgeries, husband's deployment, seeking out additional opinions, etc...............sigh! I just pray that Katie and I can live with his choice and my lack of backbone.

If you want the On-X, then fight for it. I wish I had. Good luck and I wish you well. Please keep us posted. Hugs. J.


Janet,

I cannot imagine what it must be like as a parent to endure what you and your little girl have been through. I know that you must have a strong faith to be able to handle it. I applaud Katie's bravery as well... truly amazes me and humbles me hearing others stories like I have on this forum. I am in the same boat as you regarding my surgeon. He is truly a master in his field, and I am quite confident that I could not be in better hands when May 3rd rolls around. If he declines to use the On-X valve, I am leaning towards using the St. Jude as an alternative. My thinking is that I would be better off using it and having my surgeon performing the operation versus insisting I get the On-X and having another surgeon operating on me. It's a really tough decision if it comes down to that, but I am hoping and praying that he will allow me to be the first patient of his to recieve the On-X. Best of luck to you and your little sweetheart, and thanks so much for the well wishes!

Chris
 
Welcome Chris! I too am a newbie here. I have been made to feel so welcome! And the wealth of information is incredible!

Good luck with your surgery! You are one week after me. Mine is Friday...as in 3 days from now....oh my goodness!

You'll be in my prayers!

Lisa
 
MyBloodRunnethOrange said:
I didn't contact Randy because I haven't seen him around in quite awhile. Please let me know if I'm mistaken about that or if you know how I could reach him. I'd like to personally thank him for inspiring me to go the extra mile in order to hopefully recieve the On-X valve in a couple of weeks. I am aware through reading the posts here of how much he did in order to convince Dr. Petterson to use the On-X at Cleveland for the first time. In fact, when I spoke with Ms. Burnett at MCRI today, I told her that Randy's story is what made me contact her. She remembered him too and laughed when I told her she was becoming famous here on the forum. Thanks for the note and please do let me know if you have a way for me to contact Randy. Thanks!

Chris
The best and perhaps only way to contact Randy is through Private Messaging. There have been some issues in the past that have compeled Randy to stay away. :(
 
Just want to welcome you, Chris. Glad you found us. Sounds like you've done your homework and are well prepared. Best wishes on your upcoming surgery, and for a speedy and uneventful recovery.
 
llewis34 said:
Welcome Chris! I too am a newbie here. I have been made to feel so welcome! And the wealth of information is incredible!

Good luck with your surgery! You are one week after me. Mine is Friday...as in 3 days from now....oh my goodness!

You'll be in my prayers!

Lisa

Thanks Lisa... you will most certainly be in my prayers as well! Best of luck to you and I'm sure all will go well. This place is truly a wealth of info and friendly people. You are so right! Take care and please keep us posted on your results.

Chris
 
WayneGM said:
Just want to welcome you, Chris. Glad you found us. Sounds like you've done your homework and are well prepared. Best wishes on your upcoming surgery, and for a speedy and uneventful recovery.


Thanks a million Wayne! I've enjoyed reading your posts here and appreciate the well wishes. Have a great day!

Chris
 
Karlynn and Ross,

Thanks for the tip... I'll shoot Randy a PM.

Chris
 

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