3/10/11 Waiting Room

[esvaja]

Hello,
I've just decided to join everybody in the waiting room. I've been in denial that I've actually been here since 1/11/11. My surgery is 4/6 at Cleveland Clinic, for AVR (BAV) & aortic root repair/replacement - Dr G. Pettersson is my surgeon.
I was hoping to meet others who are in the waiting room & having their surgeries in the near future - next couple months. If you would feel comfortable saying what is the surgery for & what kind of valve you've chosen or not & why. I'm personally still am not sure.
I think I need to talk to my surgeon(phone would nice since I live about 2hrs away), try & digest everything I've learned here & then just quietly think about it.
I feel very lonely this gray Thursday in March.
Thanks everyone for your kindness & acceptance.
Daiva

 

[Jeri]

Hi Daiva,

I totally understand how you feel. I, too, have to have AVR done soon....probably some time in April. I have to see my surgeon on the 22nd for followup visit. I figure we will discuss the type of valve I am getting and schedule it for April. There is alot of information here on this forum. Everyone has been wonderful and very supportive to me. I may also have to have my aortic aneursym repaired...not sure about that yet. It may be able to wait. Make sure you read all the stickys as well as the posts. I am really not worried too much. I take a lot of comfort in my faith and I believe God will take care of me as well as all of us here. We just have to have faith and believe in Him. My surgery will take place in Pittsburgh. I am leaning towards a tissue valve. I just hope the surgeon agrees with me. If you want to pm me, that is fine. I am happy to chat with you here or in private but I don't have much experience in what to expect because it is new to me as well. But I am available to chat. Stay positive and have faith.

Jeri

 

[jdsmithii]

Hey Daiva-

It gets better. I am a few weeks ahead of you on the spectrum, I found out in late November that I would need AVR and Arch replacement after my yearly check in with my cardiologist. I am going mechanical on March 23rd. Looks like we get to hang out in the waiting room together. Don't hog all the good magazines!

jimmy

 

[Hockey Heart]

I'm having Aortic Valve replaced with tissue valve in May. I also just joined here and do not have that much experience but I am learning a great deal from reading all the information on here and asking questions.

 

[epstns]

Daiva - Welcome to The Waiting Room, the virtual room where many members await their own turns at valve surgery. I spent nearly 9 years in The Waiting Room here, absorbing an incredible amount of information - not only technical information but information about real-life experiences of the many who have traveled the path before us. I finally had my valve replaced on February 28th, along with a single bypass and a pacemaker. That is a lot to do at once, but it was incredibly easy to decide to do, given the alternatives.

Since you've already chosen your hospital and surgeon (and you're in VERY good hands) I think you're on track in requesting a phone consultation about valve choice. Also I would suggest that you read the Valve Selection forum here on vr.org - there are some great compilations of information there that can help make the choice easier to make. I won't hog the podium here, as I'm sure that many other members will chime in soon with more and more great advice.

Welcome. Visit often, ask all the questions you can think of. Not only do the people here have the best range of experiences on line, but they are incredibly great about sharing it.

 

[jdsmithii]

Steve-

How have the last two weeks been? How is your recovery going?

 

[epstns]

jd - The past two weeks have run the gamut from horrible to wonderful. As I posted elsewhere (IIRC - otherwise PM me and I'll fill you in), I had smooth sailing through the planned surgery for valve and bypass. After surgery my heart rate started rising and spiking at alarming peaks, so a beta blocker was administered. This must have "insulted" my heart, which promptly stopped for 15-20 seconds, several times. Thank God for temporary pacemakers. So a couple of days later back to the OR I went for a pacemaker. After that, the heart settled down but still I "falied to thrive." Lots of abdominal pressure, had to fight for breath, coldn't get away from the oxygen cannula. Finally last Tuesday evening it dawned on me that the symptoms were an awful lot like those I had when I was diagnosed with GERD last summer. I corralled the night nurse, got him to find a doc to write some orders for ordinary Tums, took a few and immediately was feeling better. Went home the next day.

Since Wednesday last week, it has gone from "fair" to "pretty good." Initially I couldn't do much at all, and had lots of discomfort. As the days have gone on, though, things have improved markedly. I sleep better (my own bed from day 1), get around the house better (3 floors!) but just haven't been able to get out and walk as much as I should. I climb stairs instead, I guess. I've found that using the spirometer (breathing exercise device) helps me quite a lot - only the last couple of days I've stopped having the "sticky" feeling you get when the tips of your lungs are trying to re-inflate. I'm having trouble with coughing, but this, too, shall pass.

It is now quite evident that by whatever route, I do intend to complete this recovery process and get back to a better life than I had before. If it wasn't for all the support from my family here at vr.org, it would have been a much harder and scarier patth.

 

[williamsm18]

hi daiva
i had my surgery in jan 2011 i am now going on 10 weeks post op. i had aortic valve and ascending aorta surgery after going back and forth between valve choices i decided on mechanical my reasons for this are my age (im 39) and the hopes of not having to have this surgery again. it was however a difficult choice i didnt like the idea of living on coumadin and having to change my life style. it is a personal choice many others will tell you that also it comes down to what your comfortable with but someone on here told me before my surgery pick a valve and dont look back after all we have alot of life left to live.

mark
aortic valve and ascending aorta repair
jan/2011

 

[lz9701]

Hi Daiva:

I had my surgery about a year and a half ago. I had bacterial endocarditis three times which compromised my aortic valve. I found out in early June of 2009 that I had to have the surgery but it was not scheduled until 2 months after that. Two months of nerves, it was terrible. Everything will be fine for you, good luck.

 

[Natina13]

Welcome to the Waiting Room, Daiva !!!!!! I only joined the site in February myself, having watched it for a few weeks first, reading alot of posts here, then deciding this was the place, I wanted to be. As Steve said, there is an incredible amount of information , and shared experiences, by people who have already traveled the road, we are now on. Very happy you found your way here as well
I had been having a 500# man sitting on my chest, exhaustion, chest pains and shortness of breath, for almost a year. Unfortunately for me, the hypothyroid problem I developed, was within this same time frame, so the Endocrinologist kept telling me, be patient, it will be better, as soon as the medication, gets my thyroid level into a normal range. Last October, I finally said, I am going back to my Cardiologist ( even though he had done my yearly stress test, EKG, etc, less than 6 months earlier, which was normal) This time he did an echo,then an angiogram......next..I got a second opinion and now, I am having my Bicuspid Aortic Valve replaced ( had a heart murmur my whole life, I now know why) and a Triple Bypass, on March 17Th. Making the choice of which type of valve to use, was for me, the hardest decision to make. I finally decided on a tissue ( Oink!) valve, after asking my surgeon a question, and the answer being...I would have to have a repeat OHS when the arteries clog again. So...I decided not to have to mess with blood thinners, labs or worrying when I am up hiking/camping in Yosemite, if I injure myself. It is a very personal choice.. as both types of valves, have pros and cons.
You are now part of Team 2011..and we are all going to have hearts that function correctly this year !!!!!! Yippie !!! Hugs and positive caring thoughts being sent your way....
Renee

 

[esvaja]

Thank you all SO much for chiming in. These replies just make the waiting room a little more "real" & a safe place to go & be. During the day I/we all keep busy but there are times when its very comforting to have a place to go where there are some answers & definitely friends/family of the heart waiting.
Can't wait to meet more of you in all of the forums!
Daiva

 

[ctyguy]

Daiva... Welcome to the site ! I had an AVR 3 yrs ago @ C.C. Dr P was my surgeon and I must say your in excellent hands ! I have met more than a few people on this site who had Dr P and I don't know of anyone who has anything less than overwhelmingly good things to say. I went Mechanical (On-X) and for Dr P it was pretty much run of the mill stuff. He did my AVR in the morning and a double lung replacement that afternoon. Valve type is a very personal choice if you decide Mechanical Dr P probably has as much experience with On-X as any surgeon in the country if not the world. Maybe Im biased but I think you have chosen very wisely with your surgeon.