Surgery Soon! New to the Sight

[ShanaleT]

I have read some great emails for the past two days and I guess this is what I needed. I am 26 and will be having aortic valve replacement and aneurysm repair on Jan 3. I have put it off since April trying to get through the first year of a new job.

I am having my surgery at St Joseph's Hosital in Atlanta and Dr. Douglas Murphy will be doing the procedure. I wanted to get the porcine valve, but because of the location of the aneurysm, that is not possible. I am terrified of a life of meds since I have always been healthy until this point. Every one of my docs have brought up the subject of Marfan syndrome, but since I do not have any of the outward characteristics, then the idea just gets thrown to the side. I guess I would feel better if I knew what caused this so I could do something to prevent it. I am even researching ephedrin use since I did take it for over a year.

I guess the whole point of this is that I am greatful to find a site like this. I just need to be surrounded by people that understand the stress of this type of situation. I know that my family and friends are concerned, but they just do not understand the emotional roller coaster I am on at this point.

Thanks,
Shana

 

[ticktock]

Shana
Welcome, and you have found the right spot. I dont suppose anyone can really feel what you are experiencing, unless they have too. Sometimes you need to share with others. Here you will find information, comfort, support, friendship, well.... they are just plain good folks. I didnt find them long ago myself.

I have had four aortic valve replacements, and my last two were mechanical. I have been on meds since 1978 (I am 46) and have just made them a part of my life. Not much choice, now is there?
The Coumadin is not a problem for me, I eat what I want to eat, keeping my diet somewhat consistent. I do NOT avoid salads or greens, although I wont touch green TEA. I have my blood tested regularly, and let the Docs do their stuff.

You will find tons of info here. Lots of hints for pre and post surgery. What hurts and what doesnt. I wont blither on here, hope you have waded through these forums and found some useful stuff. Not to worry, you will have lots of welcomes soon!
mindy

 

[JenniferO]

Hi Shanale:

I also am anticipating surgery soon for mitral valve repair - hopefully in the first months of the new year, though delays in choosing the who and where of surgery seem to continue. I feel myself getting weaker physically and know I cannot waste a lot more time. I feel like I am caught in some kind of nightmare from which I can't awake. I watched the storm clouds over the Wasatch Mountains today east of Salt Lake City and kept wishing I was on the other side of that mountain that so many on this website have climbed.

It is a terrifying time, but there are many here who have survived (some multiple times) and hopefully we can too.

Jennifer

 

[Nancy]

Hi Shana, Welcome

Hi Shana, Welcome

Hi Shana-

You'll love this site because everyone here "gets it". Joe and I have found that our friends and some of our relatives don't have a clue as to what a profound experience this is. The pre-surgery phase is filled with anxiety and the post-op phase is quite a recovery process.

For Shana and Jennifer-

The only thing for you to keep reminding yourself of is that this is a life-saving procedure and not too many years ago, this option wasn't available. The surgeons who perform this type of surgery are very, very experienced and serious about what they do.

Once your heart is fixed, you'll be so surprised at how well you feel. It will take a little while to completely recover, but you will, you'll do just fine. There are a whole group of people here who have done just that.

So use this site to help you through the beginning phase and after you climb the mountain to rejoice with us at your success.

We'll be here and we'll do our best to help you.

Hope to see you often.

 

[Christina]

Hi Shana,

Welcome to our VR.com "family". We are a warm, loving, understanding, growing group of people who have been where you are today. So pull up a chair, grab a cuppa and ask away. Ask us anything you want, and someone will come along who will have the answer you are looking for. This will give you the necessary strength and not be so terrified. Remember, if we can do this, so can you! You have to become educated and informed. After that you won't feel the same. It won't be so scary aymore. You will do just fine.
I had two open heart surgeries within eleven days last year, and I did just fine. Read my story in the personals! A few bumps in the road, but nothing too serious.
Today I am 15 months post-op and back to leading a normal life. I am on Coumadin, but that shouldn't scare you either. There are people here who have been on Coumadin for a quarter century or more without any problems. Really nothing to worry about, other than being careful and to test often to be safe. I do all the INR testing at home with my doctor's blessing.

I hope this has helped you a bit. Feel free to e-mail me personally.
[email protected]

Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St.Jude's Mechanical
Coumadin 20mg a day.

 

[sylviayasgur]

hi shana!
welcome to this site. as others have said, this is such a wonderful place. everyone here is caring, informative, helpful and supportive. i couldn't have made it through my husband, joey's surgery without them.
the nice thing about this site is that we were all once in your shoes and others helped us. that's why we come back_ to give back. we are here to hold your hand throughout this process if you need us to.

to both you and jennifer, the waiting is the absolute worst. knowing that may make it easier.
the anticipation is awful. as nancy said, surgeons today do this type of surgery routinely.
please be well and God bless you both,
sylvia

 

[Jean]

Hi,Shana!

Hi,Shana!

As everyone ahead of me has said, this is a great place to find people who do understand. Welcome! We'll help you now and you join in and help others in the future.

One thing no one has mentioned yet, is that there is really very little pain (at least for me) just ouchy stuff...oh but, I can't lie, the sneezes will get you! Just hug a pillow...it doesn't hurt long anyway.

The quality of life after healing is just unbelievable though and makes it all worth while.

good luck and god bless...come back to yak with us anytime you feel like it...only thing is, you are one of us now and we really want you to keep in touch.

 

[Bill Hall]

Hi Shana - I had my surgery in early Jan last year. The best thing to do is to stay busy. That is not difficult at this time of year. After the holidays are over, you will get this thing over with and take some time to recover. After that you go back to work. Easier said than done, but I hope it is that easy for you. Good luck and I will pray for you.

 

[VillageX]

Another Newbie

Another Newbie

Shana, I am also a newbie to this forum, although my wife has been reading it off and on since right before my surgery. I live in New York now; but I grew up in the Southeast, and have a brother who lives in Tennessee, not far from you.

In all probability, I do have Marfan Syndrom; and I do have a few of the visable characteristics too. A routine checkup in February this year started a track that ended up leading to an operating room on May 11 to repair an aneurysm and replace my aortic valve. Like you, I got the mechanical valve; and at my age (33 now), I am glad I got that one. I would rather face the pills than the prospects of going through the surgery again later on.

I haven't had any problems with the coumadin so far; and I hope to start doing the home testing very soon, if my insurance company and QAS can get their acts together.

The most important thing I can tell you is that I do not regret having the procedure. In fact, I am thankful that the doctors found the problem in time to do something about it. I looked at it like hitting 12 at blackjack. I was already holding a losing hand, so hitting dsure couldn't do me any harm. These days, I feel like I drew a 9.

 

[Perrster]

Welcome

Welcome

Hi Rodney,

I'd like to also welcome you to club vr.com!

From the looks of your blackjack analogy, it appears like you would be a good candidate to join us at the 2002 Reunion in Las Vegas? I'm not much of a gambler, but I WILL be on the golf course, challenging Bob for every dollar he doesn't lose at blackjack!

Regards

 

[VillageX]

Thanks

Thanks

We'll have to see what the boss says about that.

 

[RobThatsMe]

Hi Rodney,

Welcome to the site. Glad you joined in with the rest of us. The support we give each other and the new folks coming in is truly "One-of-a-Kind" !

I hope your insurance company does get their act together. I personally know that QAS has their act together. They will do everything possible to assist you with your Insurance company.

They made it possible for me, and I really like having my home testing unit.

Welcome aboard!

Rob

 

[VillageX]

Hi Rodney,

Welcome to the site. Glad you joined in with the rest of us. The support we give each other and the new folks coming in is truly "One-of-a-Kind" !

I hope your insurance company does get their act together. I personally know that QAS has their act together. They will do everything possible to assist you with your Insurance company.

They made it possible for me, and I really like having my home testing unit.

Welcome aboard!

Rob

Rob, thanks for the welcome. This does look like a great site. I have been intending to join in the discussion for some time now; but I have already learned a lot through my wife's reading and passing things along to me.

I am curious as to whether, based on your comments on QAS, you might be able to recommend someone there to whom we can speak. My wife has been dealing with them for some time now; and has become very frustrated with the representative she has been working with. I would really love to assume the problem is with this person and not QAS. If you could post a contact name or Email me directly ([email protected]), I would sure appreciate it.

 

[hensylee]

Shana - we all know the apprehension that you are going through. The wonderful support and information you receive from the fine folks on this site will help you so very much while you travel down that rocky and scary road to your surgery date. You are right that others cannot share your fear as they just are unable to understand what you are experiencing - 'walking in your shoes thing'... Keep checking in, let us know how you are getting on, express ALL your fears, ask any questions and you will get instant answers that will keep you warm while you approach the mountain that you will climb - then we walk up with you and welcome you to the other side. And you have many prayers. God bless

 

[sylviayasgur]

hi rodney!
welcome to this site. it's such a wonderful place. where did you have your surgery? st. francis? my dad had his avr and double bypass there 2 1/2 yrs ago. paul damus did it. he happens to be friends with the surgeon who did my husband, joey's surgery (ross procedure). where on l.i. do you live? i grew up there and my parents still live in great neck.
good to have you on board.
be well,
sylvia

 

[VillageX]

hi rodney!
welcome to this site. it's such a wonderful place. where did you have your surgery? st. francis? my dad had his avr and double bypass there 2 1/2 yrs ago. paul damus did it. he happens to be friends with the surgeon who did my husband, joey's surgery (ross procedure). where on l.i. do you live? i grew up there and my parents still live in great neck.
good to have you on board.
be well,
sylvia

Sylvia, I was projecting forward a bit when I said Long Island. We actually live in Hartsdale, in Westchester, at the moment. We are packing right now for a move to Hauppauge in a couple of weeks. I had my surgery at Montefiore, in the Bronx. The surgeon was Doctor Avraham Merav.

 

[Zazzy]

Hi Shana!
Welcome! Come on in and meet a great group of people. We have all either been there, done that or waiting to be there, do that!! lol

Good luck with your coming surgery, please keep us posted and don't worry too much about where you have been (or in this case where the heart problem came from!)... save your energy for your surgery and recovery and remember to smile everyday!

Take care,
Zazzy

 

[ShanaleT]

Well, it took me a few days to get back online, but I want to thank everyone for the great responses. I guess my main concern was what my quality of life after the surgery would be and you guys seem to be going along just fine.

There is a couple of questions I do have. How long did you stay in the hospital? I have read stories that it is normally 7-10 days, but I am hoping it will be shorter. Is the 7-10 days normal? Also, Jean, I am glad to hear that there really is not alot of pain. I want to bounce back from this quickly and continue on with my life. It sounds like most of you have been able to do that. The other question is regarding pregnancy. Has anyone out there been able to have a normal pregnancy after this procedure? I have done some research on the meds since coumidin is not recommended during pregnancy, but I am concerned about the strain this could cause on my heart.

Thanks for all of the input and have a great holiday weekend. I know I will.

Shana

 

[VillageX]

Well, it took me a few days to get back online, but I want to thank everyone for the great responses. I guess my main concern was what my quality of life after the surgery would be and you guys seem to be going along just fine.

There is a couple of questions I do have. How long did you stay in the hospital? I have read stories that it is normally 7-10 days, but I am hoping it will be shorter. Is the 7-10 days normal? Also, Jean, I am glad to hear that there really is not alot of pain. I want to bounce back from this quickly and continue on with my life. It sounds like most of you have been able to do that. The other question is regarding pregnancy. Has anyone out there been able to have a normal pregnancy after this procedure? I have done some research on the meds since coumidin is not recommended during pregnancy, but I am concerned about the strain this could cause on my heart.

Thanks for all of the input and have a great holiday weekend. I know I will.

Shana

Well, I can only tell you my experience as far as time in the hospital goes. Because it was a "non-emergency" surgery, I was able to schedule the day I wanted. I went in a few days ahead for the pre-admission testing and orientation. On the day of the surgery, (Friday, May 11, 2001) I showed up early that morning, and was in the OR within 90 minutes of walking in the door. I spent Friday night, Saturday, and Sunday in the Cardiac ICU, and went to the main CCU on Monday. I was released on Friday, May 18, which is 7 nights in the hospital, total.

However, there was some disagreement between my insurance company and my doctors as to how long I had to stay in the hospital. I was ready to go home on Wednesday, but I had a low fever; and the doctors were concerned about infection. On Thursday, I was again ready to go, and the fever was down. However, my INR number had gone down, so the Doctors wouldn't release me then either. Ultimately, the insurance company said I should have gone on Thursday, and declined to pay for the last day.

So the reality is that I was physically able to go home on the 5th day after surgery.

I was sitting up in a chair the day after surgery, and I went for a short walk in the hall on the second day after surgery. I didn't take any pain medication after the third post-surgery day, until I came home. Then I took only the codine pills at night to help me sleep. I still got tired quickly, and had to take naps for a few days; and big undertakings like taking a shower really wore me out for a while. However, I was able to get around okay, and do simple things for myself. I didn't have to prepare food and things like that; but I probably could have done so easily enough.

Roughly six weeks after the surgery, I was able to go on a vacation trip to Cape Cod.

Obviously, I don't know about the pregnancy thing; but my cardiologist doesn't think there is any concern about "strain" on my heart. He pretty much feels that, other than the Coumadin, and being careful about infections, I am back to "normal".

 

[sylviayasgur]

hi shana!
about the pregnancy thing, try asking mara. she's young, newly wed and had a ross procedure.
i think she knows more about this...

also, recovery is different for everyone. my husband, joey, who is in great shape, stayed in the hospital a full week. he had a few setbacks (a-fib, fast heart rate, bad reaction to percoset_he became delusional). he was so disappointed because he had expected to be out in 3-4 days. we didn't expect all those little snags. it was a good rest for him though.
he was out of his surgery by about 2 pm and sitting in a chair that same night around 11:30pm. moved down from cicu to a stepdown unit the next morning and encouraged to walk from the get go. (then came the afib, etc and they wouldn;t let him off the monitors or out of bed!).
once home, he was able to do little things and shower, but they exhausted him. he napped a lot. he slept terribly at night
and used his tylenol with codeine then.
he was back at work by week 3 post op. by the second week home he was walking a mile and a half on the treadmill.
now, 9 weeks post op, he is just starting to run on the treadmill (still tender in the chest).

you'll find others on this site who were running at 4 weeks and up and out way before that. you 'll find others who couldn't walk for weeks! everyone is different. so, please don't go in expecting to be superwoman and run a marathon the week after surgery (as did my husband and he was so disappointed not to be doing better/more).
relax, rest, and enjoy the recovery time.
wishing you lots of luck.
be well and God bless,
sylvia