pre-surgery anxiety

[sylviayasgur]

hi everyone! i am very new at this whole forum thing;
please bear with me.
my husband, joey, has had aortic stenosis and insufficiency
all his life. they think it was congenital or maybe a bout of
rheumatic fever that no one picked up on. either way, we've
been really fortunate for the last 19 years, dealing with a few
bouts of a-fib and changing/ adjusting meds. for the most part
though, he's been active and we hike and mountain bike frequently.
we have 2 daughters, 17 and almost 14.
joey went in for a routine echo in april and the results showed
his stenosis progressing. his cardiologist suggested he come in
for another echo in july to see if there is any difference, and there
was. his cardiologist said it was time to shop for a surgeon.
we met with dr. steltzer who specializes in the ross procedure.
we really liked him a lot and joey is on his surgical schedule for
sept.12 for a ross procedure.
meanwhile, he is scheduled for a cath this wed.9/5 and we are meeting
with a second surgeon (craig smith) on thurs. 9/6.
joey is also on his surgical schedule (also tentatively) for sept.12.
it's at the point now where joey can no longer run and
often feels short of breath. we are both very nervous and scared.
i know having time is good in order to make the right decision,
but we both wish the day would come and go.
we are leaning toward the ross, but it is disconcerting to think of
using 2 valves to fix one. dr. stelzer, however, says that joey is the
perfect ross candidate. any suggestions?
i could cry when i read how you are all so caring and supportive of
one another.
i hope i can contribute. thank you for being here.

 

[tnboomer1013]

Hi Sylvia,

Hi Sylvia,

I had avr on the 17th of July 01. I was supposed to have the Ross but because of complications with my aortic root it was not possable. I wanted the RP because I would not need the use of anticoagulants re: coumadin. Because of the kind of work I do the RP was my first choice but to no avail. If youall go with the RP Dr steltzer would be a good choice. It is like he told me you want a surgeon who has done a number of these because there is like he said a learning curve with the operation. So you would not want a surgeon who has only a hand full of these under his belt. It all has to do with the time on the HL machine and the tediousness of it. It is a very technical procedure. He even has a very informative web site that explains it all so well. How ever you go he will feel better and better as each day goes by. Please let us know what you decide to do. Good luck and with God's help all will work out.

 

[Nancy]

Hi Sylvia, welcome

Hi Sylvia, welcome

Hi Sylvia-

My husband's name is Joe also, and he's had many thoracic surgeries, three valves (aortic, mitral and a mitral repair, all mechanical), and two lung surgeries, plus he also has a pacemaker. He had rheumatic fever as a teenager.

Don't have experience with the Ross procedure, but I sure do have experience with the time before surgery. It's certainly filled with anxiety. Always keep in mind that it is a life saving operation and Joey will feel so much better afterward. There will be lots to do before he goes in for his surgery, things to get squared away and several medical appointments to go to, Time will pass quickly. You'll be surprised at how fast they'll have him up and walking after surgery, and really how fast he'll be returning home. You'll be very busy helping him both in the hospital and at home, so get as many projects as you can out of the way prior to the surgery. Have a good supply of groceries stashed, see if you can get a baby monitor, or a set of personal two-way radios. We found those both helpful. If you need any minor repairs on the car, get it done now, because Joey won't be able to drive for several weeks.

This is a wonderful site, so much important info. and warm and friendly people who will help you get through. Feel free to email me if you wish at [email protected], put ValveReplacement in the subject line, so I don't think it's spam.

 

[ticktock]

Sylvia
Hi and welcome to the board. I think experience is the key. If your surgeon has done a bunch and is familiar, then that would instill confidence in me. The Ross seems to be a widely accepted procedure and is becoming more and more popular. You didnt say your husbands age, but I see he has teenagers. There has been much success as evidenced by those on board here. The best of luck to you, your husband, and please keep us posted.

 

[Peter Easton]

RP and alternatives

RP and alternatives

Dear Sylvia and Joey,

I considered the Ross Procedure for quite a while. You might want to root around in the endless thread entitled "Making the choice" somewhere back there in the Heart Forum for discussion of that and the alternatives for someone like myself (59 year old, good health).

There is a lot to recommend RP, despite the longer operation time and the two valve issue; and Dr. Stelzer is one of the most accomplished people performing it. You have probably already run across the RP website (myrossprocedure.com) and the listserve of RP veterans and candidates that can be accessed there -- another set of very good and extremely helpful people. There are directions there to the Ross Procedure registry at the International Heart Institute in Missoula, Montana (where another of the foremost RP surgeons practices: Dr. Oury), and the people at the Registry will give you information about surgeons around the country who perform the procedure, for how long, etc. Plus there are stories of RP veterans and their experience.

IN my own case, I found that other approaches -- notably the Carpentier-Edwards pericardial valve and the new Cryovalve Synergraft -- offered just about as much as the RP without the two valve issue, the lengthy operative time (though Dr. Stelzer may have his down to comparable levels) or the need to go quite so far from my own north Florida base. Again, the thread gives more details if you'd like them.

As for pre-operation anxiety, I know what you mean -- though I find mine has been alleviated by all the research I've been doing! Two other factors make the prospect better for me. First, most AVR operations (including the RP, when done by those like Dr. Stelzer who are really skilled at it) are pretty routine affairs. Thousands and thousands have been done, and good surgeons have it pretty much down pat. which means that they not only can handle the task effectively, but that they are also pretty doggone experienced in all the complications that might arise. Second, as everyone say, it sure beats the alternative. In fact, I find that the more my symptoms increase, the better I feel about the operation!

Will be thinking of you and hoping for the very best as you go through the decision and preparation process.

Peter

 

[hensylee]

Hey there Sylvia - come on in, sit awhile, have a cuppa and read all you can or care to. I didn't have valve replace; I had quad bypass, but can relate in many ways with the heart surgery as going in is the same. Ask all the questions you want to and you will get all sorts of various answers, every one of them you can use. As you go about selecting the valve/procedure, you may also want to ask questions about the surgery itself. It is an awesome time you have before you but when it is done, believe me, you will have a brand new husband.

We are here to support and answer questions, if we can, and to hold your hands right up to the mountaintop and then down to the other side where most of us already are. We have prayers, encouragement and caring to offer you. Best of luck to you as you travel along. Stay in touch. God bless

 

[sylviayasgur]

hi everyone!
you are all so unbelievable. your support is incredible, i really could cry!
thank you for all your suggestions and info. and concern.

i do realized that, as you've all been saying, the wait is the worst.
i hope joey (who is 49, good health) does feel like a new person
after the surgery.

peter, i wish you all the luck; it's tomorrow, right? are the valves you are
referring to homografts or porcine? dr. steltzer had mentioned (when
he spent 2 hours talking to us) that the homografts last a longer time
than the porcine/bovine valves. i wish you all the best and as
everyone says, you'll be a new person!! please let us all know... you
are_and i'm sure i speak for everyone_ in our prayers.

again, i thank you for welcoming me into your family. i'll be in touch.
please be well,
-sylvia

 

[Peter Easton]

Porcine, bovine and the rest

Porcine, bovine and the rest

Sylvia --

The Carpentier-Edwards pericardial valve is bovine, the Cryovalve Synergraft a new style of re-engineered homograft, where genetic material is systematically washed out on the thesis that our own bodies will then repopulate the remaining collagen matrix with native stem cells, meaning much decreased risk of immune reaction and calcification. Sounds great, but there are no long-term studies yet...

Peter

 

[hensylee]

Peter - thinking of you today, tomorrow. Prayers and Godspeed

 

[sylviayasgur]

hi again!
Peter- thank you for being so patient with me. dr. steltzer had led
joey to believe that , based on the measurement of his aortic root,etc.
other than the RP, a homograft would be hard to put inplace (and
more intricate to replace in X years) when considering re-surgery
down the road. he suggested a stentless porcine valve which he
would actually fit in the "neck" (?) of the aortic valve. he made it really
clear though, that homografts do outlast porcine and bovines.
he mentioned a porcine valve that is treated with certain chemicals
that help it to avoid calcification. sound familiar?
either way, we meet with second surgeon this week and joey makes
his final decision.( i was sold on steltzer after meeting him.)

my brother in law (73!) had emergency five-way bypass in fla. last
dec. and doing great!
my dad, 68, also active and in good health, has had a st, judes valve
for 2 years andis doing fine.
as with you, joey doesn't want the coumadin_ can't say i blame you guys.


how are you holdingup today? when do you go in? what hospital?
you are in my thoughts and i will be checking in regularly. hope you or
family post your progress. lots and lots of luck and god bless you.

-sylvia

 

[Scottie]

Peter

Peter

Hi Peter ..just wanted you to know that prayers will be said for you over here across the pond ...you have contributed a great deal to this forum and I want to thankyou for that ..All the very best and I look forward to hearing from you when surgery is finished and a complete success ...Take care
Scottie

 

[Peter Easton]

Sylvia --

I've heard that Stelzer is very good, and very good in communicating with patients as well.

The homograft is harder to fit, I believe, and usually comes with the "ascending aorta" (have I got that right?). The operation takes longer than stented valves or bovine ones, about the same or a bit longer than stentless, as I understand it. The homograft I am considering is a new model, the genetically washed one, different in that respect from those that have been used for years. Cryolife does make a genetically washed porcine valve as well, but I wasn't aware that it was being marketed or implanted in the US. It has been used quite a bit recently in Europe, to judge by things on websites. It could be a very good choice.

Off to Gainesville late tonight for an operation sometime tomorrow. I am categorized as "elective surgery," since symptoms are still manageable, which means I might get bumped a bit by emergency cases -- only fair.

Good luck!

Peter

 

[McCln]

pre-surgery anxiety

It is natural to worry after being told about surgery. We all wish that there was easier and less complicated procedures. But Your husband will just fine. If you have the time, do some research on the things the doctor will tell after the cath. There is a lot of information out there on the web to explore now. I did for my upcoming aortic valve replacement. I hope to have it done next week. I had a delay so the surgery was delayed. Infection is something not to play with. I am sure your husband will be alright with all the new information coming out all the time. and this board. You come anytime. We are full of insights and information. And of what we don't know, we know somebody who does. You just hang in there. Your husband is lucky to have you in his corner.

 

[lancashirelad]

Hi everybody.

My name is Simon and i am from Lancashire in England. I am a member of GUCH in the UK and a friend of mine, Jonathan Upton told me about this site. I have a bicuspid aortic valve with regurg, and am scheduled for surgey on tues Oct 2nd. I was to have ross but my due to the fact that my aortic arch was 4cm+ and pulmonary valve (valve to be used in ross) also leaks. So i prb will wake up with prosthetic valve + anticoag treatment. A yr ago i was doing 6 mile runs with ease, and know i am on urgent list for valve replacement. I took a very long time and tears to accept my problem, and now that surgery is very close i am quite scared. I am not getting more than 3 hrs sleep a nite. Anyone know any solutions to this that work? Would appreciate it if you could help. I am quite suprised at how well i am coping because i am normally a very anxious person indeed however i am scared of what is to come and especially as i dont know what replacement i am going to have. I would like to meet some new people like me because at home i feel very isolated because i find i cannot talk to many people properly about my anxieties.

cheers
SI

 

[Nancy]

Hi Simon

Hi Simon

Hi Simon-

Welcome to the site. there are many people here who can help you over the pre-op jitters. It is important to think about this surgery as a life-saving procedure. What would happen to you if this weren't available? The doctors who do this are very, very experienced and this is a routine procedure for them. You will be in the best of hands and will be taken care of with "kid gloves".

It's very normal to have many anxieties in the pre-op phase. I wouldn't even try to negate them. Some people have been helped considerably by the Guided Imagery Tapes. I think there are links for them, if you do a search. Plus, don't hesitate to ask any and all questions you have, someone will surely be able to help you.

My husband Joe has had three open heart surgeries he has two mechanical valves, an aortic and a mitral. He had a repair on the mitral July 18 of this year. In addition to those, he also has had 2 lung surgeries and has a pacemaker. We've been through every emotion known to man, I think. But he's here and getting better each day, and so will you.

Best wishes to you and many years of good health to come.

 

[hensylee]

Hi Simon, I have asked Hank, our host, to extract your post and put it where we will all see it. Also asked them to look here to find you. You should get some feedback really soon, as Nancy has already done.

Welcome to our home. There are really caring and supportive folks here who will be of so much help to you up to and after any surgery you might have. Just hang around with us and you will see. Say hi to Jonathan. God bless

 

[sylviayasgur]

hi simon!
welcome! this is a wonderful place to get advice, support and benefit from others' experience, knowledge and research. it has helped me tremendously in every way.

i can't remember who it was, but someone said that the wait (pre-surgery) is worse than the actual surgery itself. they were very right. my husband joey just got home yesterday after a rp a week ago.

the guided imagery tapes that nancy mentioned are fabulous. there is a thread about them somewhere in this forum; please be sure to check it out. diane tusek, who makes/sells them (we have several and love them!) is a really genuinely nice person. you can order them at: www.guidedimageryinc.com or call 440-944-9292.

please keep in touch with us. we're all here to lend a helping hand as everyone here has done for atleast one of us.
be well and God bless,
sylvia

 

[ticktock]

Dear Simon
Anxious?? Is that all?? I was a hysterical wreck prior to my surgery. I laughed alot, and made many jokes. Any time I was alone, I was crying. Humor is my treatment of choice. There are relaxation techniques that do wonders, and I didnt even believe in THOSE. I use what I call a "displacement" thing, where I just go somewhere else in my head. It takes some practice, but it works for me.

I really believe the anxiety before the surgery is worse than the recovery period. Once it is over, you are centered on doing what is right to get well and get HOME. The pain management is amazing these days, and you really needn't suffer any more than you chose to.

I have two mechanical valves, and have had two repair surgeries, so four in all. I take Coumadin and manage it well. I do not find it to be a big problem. I used to take a Benadryl (diphenhydramine) before bed when I really had trouble sleeping. It is a gentle drug with few side affects. You might ask the Doc about this. You do not want to take it when you get very close to your surgery date though.

Wishing you the very best, for a speedy recovery. Keep that chin up.... you will be home before you know it!
mindy

 

[Braveheart]

Welcome Simon !!!

Welcome Simon !!!

Hey Si

Welcome to the site!! Just read your message mate. You'll find a lot of support here. I've made many friends and receieved much help from the lovely folks here.

You're going to be fine on Tuesday. You've got world-class doctors looking after you in Birmingham.

I'll chat with you real soon and looking forward to meeting you after your surgery.

Take care mate,

Be strong,

Jonathan

 

[Jan]

Hello Si
Just wanted to let you Know you will be in my thoughts during your surgery, and wish you a speedy recovery
Kind Thoughts to you and yours
Jan