Heart of the Sunrise- AVR in the Early Spring

[Heart Of The Sunrise]

dpalz: I knew nothing about my BAV or anueryism either until October 26th 2012. I am having the same surgery you had, only as you see I am going with the
ON-X valve with the attached graft. Officially at the University of Pennsylvania Hospital my procedure is called:"Mechanical Composite Root Replacement and Hemiarch Reconstruction". I learned everything I could about my options and what my surgeon has performed. I am blessed that he has done many of the ON-X valve and graft procedures...which is what I felt was right for me. Being an engineer I treated the whole process as an engineering problem and challenge.
I look forward to having the surgery completed and begin enjoying life with a new level of appreciation for good heart health!

 

[dpalz]

Please let us know your thoughts on the ON-X valve after you have broken it in. ON-X was my 1st choice and my surgeon said he would put any valve in I would like, but I went with the St. Jude as I knew that was what he had the most experience with. Now, having experienced it all, the install is the same so deciding between which mechanical valve has no weight in minimizing the risk (which is extremely low already). I really wanted that $200 rebate and ON-X ring though!!! What an awesome conversation piece those will be!! Also, it will be interesting on how you feel after your recovery. I never thought I had symptom, but it turns out, they crept in very slowly so I thought I was just getting old (or having a midlife crises).

 

[Heart Of The Sunrise]

Hey dpalz-Yep...already did the two pre-op surveys on the On-X website. I will complete the post op survey once I am home after surgery.
I look forward to the explaining the significance of the ON-X ring on my finger!:thumbup: I also am having a custom t-shirt made to wear home from the hospital. I will post a description or photo post surgery! I will never forget the quote my ultrasound tech said after my initial test. She said: "...my husband never knew how bad he felt until he felt better" He only had 3 stents implanted no AVR. I have been told by my doctors and others that the change in my life will be dramatic. As you stated: "no idea how bad I was feeling, until the surgery took it all away"... I am certain I will share these feelings. I am so thankful I found this website. I have no doubt that post surgery I will be on here to help others who are facing these unique challenges that all OHS patients must face!

 

[pellicle]

Why are people discussing this from the perspective of consumer items? There are far more variables than most are willing to comprehend, the price of the valve is insignificant. The surgery costs 99% of the totals for a start.

• flow dynamics leading to thrombosis
• quality of stitching ring leading to better implantation and shorter surgical time
• reliability

Just to name the obvious ones. We read up on things but really compared to people who do this professionally for decades we don't know much at all

 

[pellicle]

Wow,you seem to accept this as a trooper. I am in the waiting room and a wreck.I am trying to learn as much as I can but the more I read the more nervous I get.My Daughter had avr last year and I was the caregiver so I do not want to go there.

Sometimes being in the midst of it you realise that the only way to stay with the ones you love is to be brave and do the best you can. Its not really difficult to undergo, you just need to realise that fear is controlling you, not you controlling you. To me the hardest thing is to stay here when the ones you love have been taken.

Personally I have always to my mind had the issue as I was diadnosed young. So I developed my life philosophy much earlier. I can't say how easy it is for you to see what I am saying, but I believe it is the truth.

Speaking of troopers, soldiers awarded for bravery often say they were only doing what anyone would have done. They are right, its in all of us.

Be brave, don't just pretend to be brave for those who see you. Its all right to have moments of tears and anxiety, but don't let them run your heart

 

[Heart Of The Sunrise]

One month from today... this time.., I will be several hours post-up. I look forward to being an OHS veteran and beginning my rehab.
I look forward to being on the other side of the mountain! The wisdom offered by you veterans of OHS has not only been of great comfort to me and
others...but also very informative... learning about your first hand experiences from diagnosis to surgery through recovery... has helped me cope and make an educated decision on which way to go ...in terms of valve choice.THANKS TO ALL!-It's an ON-X Valve with attached aortic graft for me!

 

[Guyswell]

H.O.T.S.

I too developed a LBBB prior to my first surgery. I did not receive a pacemaker during valve replacement surgery although the surgeon said it was a distinct possibility. I received my pacer 2 years later when I started to have fainting spells due to Bradycardia. The AV node lies very close to the aortic valve so anytime the heart's electrical system is disturbed by encroaching calcium deposits or by valve replacement surgery, a pacemaker may ultimately be needed. Other than the lump under my skin and having the battery-life checked four times a year, I don't think about it being there. I don't know when it's pacing (about 8-10% of the time) and I don't feel anything unusual. I've had the original battery for 7 years now and everything is fine. Don't worry. It's no big deal if you end up with one.

 

[pellicle]

Good luck and wishing you all the best for recovery and a good extension on life

 

[TheGymGuy]

Heart Of The Sunrise, best of luck. Looks like you are prepared pretty well. My surgery was on 3/27/2012 and I loved recovering in the spring (as much as you can love a thing like this, ya know ). Things were growing and getting greener, new beginning for all the plants and trees, and me walking/strolling/jogging all over the place trying to recover and get some endurance back - some of my best memories.

 

[Heart Of The Sunrise]

I feel reasonably well with my surgical date rapidly approaching.
I am a bit nervous about "DEEP HYPOTHERMIC CARDIAC ARREST" (DHCA).I understand it is a common procedure with OHS (at least at the University of Pennsylvania) especially when repairing an ascending aorta common to BAV patients.
Can anyone offer any positive comments about this. I understanding how and why it is done. Yet, the description is pretty scarey.:eek2:

 

[Rachel]

Hi HOTT -

I have no idea what DEEP HYPOTHERMIC CARDIAC ARREST is! But, I'm sure someone will chime in here soon to let you know if that is or is not a "common procedure".

I just wanted to let you know that I'm thinking of you as your surgery date approaches.

I had my valve replaced and my ascending aorta repaired (as did several others on this forum) and I have to say that for me at least, I think some form of ignorance of all the stuff that could happen/go wrong is not necessarily a bad thing!

So many things are out of our control - a lot of us on this forum have had our aortas repaired and we are fine. As your surgery date approaches, think positive thoughts, think about your recovery and trust in your surgical team.

Wishing you some peace as you wait!

Rachel

I feel reasonably well with my surgical date rapidly approaching.
I am a bit nervous about "DEEP HYPOTHERMIC CARDIAC ARREST".I understand it is a common procedure with OHS especially when repairing an ascending aorta common to BAV patients.
Can anyone offer any positive comments about this. I understanding how and why it is done. Yet, the description is pretty scarey.:eek2:

 

[Heart Of The Sunrise]

Rachel: Thanks for your constant feedback and support. I agree there are some things we do not need to know. The only reason I know the term DHCA is because it is mentioned in my pre-surgical paperwork from Penn. Sometimes,I have had to pull back my reins of curiousity. But, being an engineer it is sometimes difficult to not get the answers to..."I wonder how they are going to do that?" I feel a special connection to you and others who have had very similar surgeries that I am now less than a month away from. I got my pre-surgery dental clearance today!:thumbup:

 

[Rachel]

Rachel: Thanks for your constant feedback and support. I agree there are some things we do not need to know. The only reason I know the term DHCA is because it is mentioned in my pre-surgical paperwork from Penn. Sometimes,I have had to pull back my reins of curiousity. But, being an engineer it is sometimes difficult to not get the answers to..."I wonder how they are going to do that?" I feel a special connection to you and others who have had very similar surgeries that I am now less than a month away from. I got my pre-surgery dental clearance today!:thumbup:

You know how everyone always says "the waiting is the hardest part" - so true, and I just wish that fear wasn't there for everyone who has to go through this...but it's almost impossible not to think of all the bad stuff that might happen...I know.

I also used to know a ton of engineers (cool group of people) - so you made me smile when you said you are one - I get it.

It does feel good when you get a great dental report pre-surgery - one less thing to worry about!

We are connected - there's really no one else besides those of us who've been through it who know exactly what it's like - You're in my thoughts!

Rachel

 

[Heart Of The Sunrise]

I got the notice this past Friday that my insurance has approved my surgery on the 18th. Next-up: down to Penn on March 7th for my pre-surgery physical.

 

[epstns]

Be sure you study hard for all the tests!

All the best hoped for you. You'll do fine, and we'll be here for you.

 

[Guyswell]

H.O.T.S.

I had deep hypothermia and circulatory arrest during my aorta surgery and everything went very well. The concept sounds complicated and scary but its actually quite simple. In fact, in some parts of the world, where heart/lung machines are less common, successful open heart surgeries are done using this technique every day. You've probably heard news stories where some kid falls through the ice on a frozen pond and is submerged for over 30 minutes before he can be found and pulled from the water. The story goes on to explain that even though he had no heart beat and appeared to have drowned, CPR was administered, his body was warmed and he miraculously made a complete recovery. The reduced body temperature protects the brain and other vital organs during the time of no blood flow. It's the same idea during aorta surgery except the cooling of your body is done by the heart/lung machine and sterile ice placed around your body. It's a common technique for surgeries of the ascending aorta and aortic arch.

 

[Guyswell]

H.O.T.S.

I read your post again and I see that you already understand the technique and why it's done. You didn't say it, but I wonder if it sounds to you a bit too much like being dead? I can assure you I was not dead. I did not see a bright light, and did not have an out-of-body experience. I slept through the whole operation and felt the same afterward as I did after my more recent valve replacement surgery that did not involve this technique. The way I see it, until God calls our soul home, we're not dead.

 

[Heart Of The Sunrise]

Guyswell:

Thanks for the post. Now I have an even better understanding and comfort level with DHCA. Follow the link below and my surgeon explains DHCA and pretty much the surgery that I am going to have. Except I am having the ON-X valve and aortic graft. Karen my woman, knew the patient in the videos when he was a patient at the medical practice she used to run. What a small world! We are lucky for the times in which we live and the brilliant doctors who care for us. I have a great cardilogist in Dr. Chamoun and Dr. Bavaria my surgeon @ Penn is brilliant! I am so lucky my family doctor, Dr. Guiliani discovered my LBBB which led to the discovery of my BAV and aortic aneuryism.Your first post ("frozen pond") is perfect and how I explain DHCA to my friends and family. Being an engineer I fully understand it and find it fascinating. It was just freaky and scary until I learned more about it. I know it is done all the time. So, quite obviously it is safe and reliable. It is particularly comforting to hear of your first hand experience. Thanks alot my soon-to-be ON-X brother!:thumbup:

http://www.youtube.com/watch?v=d5jGG4sH2Cc

 

[marc_kowal]

University of PENN is a great hospital. Best of luck to you!!

 

[Heart Of The Sunrise]

Long exhausting day down at Penn... pre-op testing. We believe it all went well. I will find out on Friday March 15th what time my surgery will be on Monday the 18th. Karen & I got a nice informative tour of the hospital today, and we also learned the sequence of events and their locations for my day of surgery. I have been doing well thanks to everyone's help here on VR.org. Still, I am getting a little nervous as the reality of my procedure is just over the horizon. I think we have everything in order. Last task is to set-up our outside furniture and our gazebo for a great place to read, write, relax and recover. Many, many birds in our yard. And of course we have an outside cage for our African Grey Parrot "Alexis" aka Lexy.....Wecker....Nuthead!!!!! Here she is enjoying an orange! I also plan on watching some Phillies baseball!