surgery on may 3rd

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benalonso

hello everyone!
it's really nice to see all the wonderful encouragements you are doling out to everyone that's going in for either a valve repair or replacement. however, for some reason or another, i can't seem to shake off this feelings of helplesness or feeling of being so scared. i am so petrified of the surgery. i am so scared of the pain that is associated with it as well.
i know that over the last 10 years or so the surgeons have perfected their art. but still, just like in any surgery there will always be the complications. i know i can't be realistic hoping that there won't be any but, again, i am just so scared!
i will be having a mitral valve repair or replacement on may 3,2002 with the kaiser permanente system in oakland, ca. by dr. hon lee. he was referred to me by dr. stephen jones a cardio-thoracic surgeon from st. helena hospital in deer park, ca. does anyone know dr. hon lee by chance? i have opted for a porcine valve versus the mechanical one hoping that within 10 years there should be a better valve that would last longer. i am once again afraid of taking coumadin for the rest of my life since it will mean a major lifestyle change of which i am not ready yet.
well, i want to thank you all for allowing me to vent. i hope all goes well on friday.
if it's not asking too much, may i please ask for your prayers?
thanks so very much & i hope to talk with you all within the next few days just before the surgery,

once again, thanks!
 
Hi Ben-

First of all, welcome to this great site and wonderful cyber family.

I see you're being operated on May 3. My husband is also going into surgery that day, but not for a heart related thing. He's been there and done that though, many, many times. So I'll be thinking abou you as I wait for my husband's surgery to be over.

Joe has had 3 valve surgeries, one in 1977, aortic valve replacement with mechanical, one in 1999 for mitral valve replacement with mechanical, and aother for a mitral valve repair in 2001. He also has a pacemaker and has had 2 lung surgeries. His chest and back look like a railroad switch yard, LOL. He's been on Coumadin for 25 years. He's 70 now, but when he was younger, he was very active, even on Coumadin.

Everyone here can relate to your fear about this surgery. It is truly scary, and to pretend that it's anything other than that would be a lie.

The one reason this surgery is done is to save your life. Patients in years gone by would die from the problems exhibited on this website. Now they have a chance for a normal lifespan and for also feeling much better. It's major surgery, so the pain is there, but it's well controlled and I'm constantly amazed that many people who had dreaded the pain, have come back to report that they didn't experience excruciating pain, only uncomfortableness. There are heavy duty pain meds available if you need them and lots of people give them up after the first day or so.

The surgeons are very dedicated and well trained and the mortality rate is very low. Surgery isn't recommended unless there is a real reason for having it done. So you must trust your cardiologist and surgeon in their investigative skills. They must have seen things in your tests leading them to believe that your heart condition was severe enough to warrant the surgery.

Keep only positive thoughts in your mind, and if you can, read as many posts on this site as possible, especially the personal stories on the main page. They're very inspirational. And ask lots of questions. You'll be sure to get lots of answers. We hope to see you here often.

I want to wish you the very best surgical result possible on May 3. We'll all be waiting to hear how things went. I hope someone can post here for you.

Here's to a much healthier life for you.
 
hello nancy-

thanks for those comforting words. i will also think of you & joe for his surgery on that same day. i hope he will be a whole lot better.

thanks also for your advice on reading the personal stories. i have done that and i have also been reading the other parts of the forum regarding the different choices on valves. like i briefly mentioned, i have gone on to choose the porcine valve only because i am not ready for a major lifestyle change yet. however, i am partly confused about the 'Ross" valve. I wonder why Dr. Hon Lee never mentioned that option? is it too late to ask? suppose he says it can be done, how long does one have to wait for it? are there enough donors? i guess these are the questions i have to ask Dr. Lee tomorrow for my pre-op meeting with him.

finding this great site & reading the forum has given me so much information & i truly appreciate all that you & the members do for us who are just about to undergo this delicate surgery.

thanks ever so much, nancy! you are a beacon of hope!

sincerely,
ben
 
Hi there. My wife will someday have mitral valve surgery, and I've accumulated a lot of research on the topic. The "Ross" procedure isn't performed for mitral valve surgeries. You're basically limited to repair, replacement with a bioprosthesis, or repair with a mechanical valve.

The Ross is performed with your own valves -- they "swap" the positions of your aortic and pulmonic valve (if my memory serves me right). The "donor" is you.

You may be thinking about mitral homografts (sometimes called allografts). Those are gleaned from human donors. I have no data as to their usefulness -- it doesn't seem like they're currently a strong option in the mitral position, but they're gaining ground fast in aortic surgeries.

If you're interested in a mitral bioprosthesis, take a look at these articles:

http://www.clevelandclinic.org/hear...&thirdCat=247&fourthCat=&parentCat=247&docID={09C97595-6D8F-4045-97E6-D32D73215230}

http://www.edwards.com/Perimount/PerimountPerformance.asp

The second one is largely promotional, but it does have some hard data. You may want to ask your cardiologist if it's a valid option (it's NEVER too late to ask, until you've gone under). It seems to have fallen into favor at the Cleveland Clinic. But I haven't discussed it with any physicians.

If you don't mind me asking, how old are you?
 
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hello christian!

many thanks on the info you just gave. any & all help at this juncture is very much appreciated. i have not gone to the sites you have recommended but i will soon enough.

i don't mind at all you asking how old i am. i am now 37 yrs. old. when i was a child, the doctors mentioned that i had a murmur. but i never paid much attention to it until i had the symptoms not too long ago. i think some time in march of this year is when i started to have it. at any rate, i will ask dr. hon lee tomorrow when i have the pre-op meeting more about your recommendation.

once again, christian, my sincere thanks for your information & your concern. i hope i can be of some assistance & a source of strength when your wife has her surgery.

ben
 
Good luck today. My wife's young too (28 -- probably will be 29 or 30 when she has her surgery), so the two of you are in the same boat.
 
Dear Ben - sure you are scared - most natural thing in the world. But you have so many friends here who have gone through the very same fears you are experiencing. That is the reason for this site - information and support. Nobody can walk in your shoes, but we can walk by your side all the way up and over the mountain. As to pain, don't fear, as you will be taken very good care of in that area. Pain is debilitating and they won't want you debilitated so they will make sure you are comfortable. The soreness will be there, but it isn't unbearable and quickly begins to recede. You will find a new world at the end of your journey and you must keep that in mind. When they wheeled me into OR they had said there were warmed sheets waiting for me - there were and I fell asleep in the warmth of a cocoon. Such comfort at the time. And when I woke, it was time to accept a new life and get on with whatever came next. Best thing ever happened for me (I had bypass) This will happen to you, too. It will be your own personal miracle. God bless:)
 
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My husband is the valver, having double valves installed in October 2001.

I can tell you that I was amazed that he was not in more pain. I think the word "uncomfortable" is appropriate. However, I will admit that he was weak after the surgery, and it took time for him to get well. Each person does recover at their own rate, so plan to really take care of yourself afterwards.

The fear? We are with you and truly understand. Try to get to a mental place where you can "let go" and let God take over. While this is very very serious surgery, continue to read the stories, repeatedly if necessary. I am still amazed of the sucesses that folks have....especially those that are very very sick prior to the surgery. The surgery is a miracle for each of these folks.

You will be in our prayers over the next days. We hope you have someone post an update about you, post surgery. It helps us all to "breath out".

Marybeth
 
Hello Benalonzo,

At age 37, I think you may want to reconsider the mechanical valve. As you noted, porcine valves typically last only around 10 years. Each successive surgery becomes more 'challenging' due to scar tissue. THIRD surgeries and beyond have much higher risk.

One cardiovascular surgeon told me he considers placing procine valves (in anyone younger than 60 years of age) to be bordering on medical malpractice. That's a pretty strong opinion but I fully believe he believes it.

At age 58, I have chosen a Carpentier Edwards Bovine (cow) Pericardial valve for my AVR which has 90% durability (still working) at 15 years and counting. I do not know if these can be used in the mitral position.

I expect MOST cardiologists / surgeons would strongly recommend mechanical valves for anyone your age. You may want to read the testimonials in the Coumadin Forum and the Life Stories section.

As a bypass survivor, I can tell you I only experienced various levels of 'discomfort' following my surgery which were well controlled by modest levels of pain madication.

The BEST reference I have read on what to expect before and after surgery is The Heart Surgery Handbook (1987) by J. Jude, et.al. It has been republished as Coping With Heart Surgery and Bypassing Depression.

Best wishes for a successful surgery.

'AL'
 
The Carpentier Edwards Perimount Mitral Valve (I linked to it above) is currently the best-selling mitral bioprosthesis in the U.S. It's also the only bovine mitral prosthesis in the U.S.

I have no idea whether it's being used in younger patients or not. But I did notice that the Cleveland Clinic used bioprosthetic valves in ~ 75% of its mitral valve replacement surgeries last year:

http://www.clevelandclinic.org/hear...e2.asp?firstCat=59&secondCat=440&thirdCat=444

Dr. Cosgrove (the Cleveland Clinic surgeon who will likely do my wife's surgery) seems to favor them:

http://www.edwards.com/CorporateInfo/NewsDetail.asp?iArticleId=67&sSectionLink=news

All that said, we haven't discussed this option with any physician. All I know is that it exists, and that it's popular. I'm not sure whether the popularity extends to younger patients.
 
Hi Ben

Hi Ben

I know what you mean when you say you are scared ....I think only us people who actually have to go through OHS really know what you mean ...and I think it is okay to be scared just don't let it take over your life ....I keep pushing my scareyness to the back of my mind ...but every so often take it out ..feel around it ..decide I don't like being scared so put it way again.
I have no real advice about the pain and the op yet as I'm still waiting for mine ..but I can say ..having been here a while now ..that everyone so far has come back and said it was not as bad as they thought it would be ..honest !
I'll be thinking about you May 3rd ..you'll be in my prayers for everything to go okay for you ...and I hope to see you back in here soon bragging about what a breeze the whole thing was ..Take care
Scottie
 
I just wanted to add that I agree with Al concerning having a second and possibly third valve surgery. I watched Joe go through that. With each one, he had a more difficult time bouncing back, it took a lot out of him and he even lost body mass because he just couldn't exercise as well early on, after his last (third) valve surgery.

The surgeon remarked that scar tissue was definitely an issue.

Another thing which isn't talked about very much is that cardiologists are quite reluctant to recommend surgery after the first one. You have to be sicker before going into surgery. It's a real balancing act to try to manage a very sick heart valve patient with meds, when the only real fix is surgery. There are, in my own opinion, benefit to risk ratios which come into play.

I can tell you the stress waiting for the green light for surgery after the first one is tough, tough, tough!

Mechanicals last the longest, at least so far. But any valve can fail, so can the stitching, and so can your body. Giving yourself the best chance that you can is something to condsider, at any age, I should also add.
 
I found a way around my 'fear' of surgery

I found a way around my 'fear' of surgery

by a concocting a greater fear based on the very real feeling of doom I had in a bout of mild congestive heart failure, 9 months before AVR.

The fear of what would happen to me if I didn't get it done made me want to almost embrace the surgeon when his chief nurse introduced herself in the OR and said "Hi! My name is Ms. so and so and We're gonna fix you up!".

If you have had little to no symptoms that's hard to do.

But I can tell you without qualification, no ifs, ands or buts, the far greater fear of what WILL happen if you don't do it, may not make this is easy to deal with as a routine physical, but it could help stanch some of the fear you now have.

The odds are better than your ability to return unharmed from a drive to the grocery store.

And the drugs......with the right combination you are going to wonder why you waited.....


Seriously, the wind will be at your back and the road straight and true....
 
hello all!
thanks ever so much for all your support! i feel the intense love & concern you all have & i am ever grateful for that! i really am!! i feel so loved & so comforted with all of you by my side.

as i write i can't help but cry; cry because i have found a place of comfort & support that i could not have found anywhere else. cry because i know all of you care so much. cry because, even though we haven't physically met, all of you are still with & behind me every step of the way. i just feel overwhelmed with the abundance of love & concern.

i pray that i will be a vessel of strength of hope, support, of love, & a fellow survivor of this delicate operation. i promise as soon as i am able i will come back to all of you & tell you of the experience i've had from the operating table.

christian, i wish you the best for your wife. it's really amazing when you find kindred spirits coming together in this great time of need & one gets all the love & support that we all need.

nancy, i pray for both you & joe. joe has gone through so much & i can only feel for him. God bless you both. God bless you for the strength that emanates so strongly from you. i wish i had that kind of strength. i can only be comforted by that.

hensylee, you, too, are a strong source of strength. i will remember your soft & kind words as i go to the or. thanks so much for your warmth that you emanate & the support.

mberge4527, here's love & warmth to you & your husband. i will also think of you & your husband when i get to the or. i will truly follow your advice to let go & let God. He is our only Strength. God bless you, my friend!

hello, alcapshaw! i thank you for your thoughts on reconsidering the mechanical valve vs. the porcine valve. i want to think that the porcine valve is right and i concur with Christian that if ever possible, just before the surgery, i would like to choose the perimount mitral valve.
thanks so much for your concern! my hope is that in the next few years, they will come up with a better valve that will last just a little bit longer so that no more surgery is necessary.

scottie, you are such a bright & postive person & i would like to glean on that. you mentioned that you are still waiting for your surgery. i hope yours is coming soon & i know, like everyone else says, once it's done we'll all fell better. i will pray for you & your loved ones for support & for healing as you go through your journey. maybe sometime i will try on a kilt just for size. what do you think? best regards to you & your family, my brother! promise i will be back after my surgery is over.....

hello gary! i can feel the strength of your advice. thanks so much for your support. truly, i agree that it is far better to have this mvr done now rather than not doing anything at all.

i listened to my heartbeat for the first time yesterday at the preop & my, oh my, that heartbeat was a loud swish you could ever hear! i was amazed how loud it was compared to a normal beating heart (the nurse practitioner let me listen to hers vs. mine).

again, i want to thank you all for all the love & support! i truly owe so much to all of you & i hope i can do the same as soon as this is over. i promise i will get back to each & everyone of you when i get better. i will also have elsa, my dearest wife, to let all of you know how the surgery went.

God Bless all of you! You are such beautiful persons & I wish all of you the best!
 
Wishing you strength and courage, plus the most wonderful outcome possible! I'll be thinking of you tomorrow, and look forward to hearing all about your "adventure" once you're out of the slammer and on the road to recovery.

Best,
--John
 
Hi Ben,

Best of luck and medical care for you tomorrow. By this time tomorrow your troubles will be behind you. Keep positive thoughts!

Joan
 
mitral valve repaired

mitral valve repaired

hello everyone! our sincerest thanks for all your prayers and best wishes... ben's surgery was a success as he's mitral valve was repaired!


but, he gave everyone a scare yesterday (sunday, may5 at about 11:00am) when he fainted. he was given oxygen(and still has it) and put back on IV. he's hemoglobin count was 7.1 so they had to do a blood transfusion by 2:00pm and another at 4:00pm.

by monday, he's hemoglobin count was 9.1, he's blood pressure was 100/60 but he's heart beat is irregular. they're giving him medication to regulate his heart beat.

ben is weak, pale looking, and is in pain every 5-6 hours. he seems to be very depressed that he is not getting better.

hopefully, with your continued prayers, he'll be back soon to tell you everything in details...

our sincerest gratitude for all your love and concern,
the alonso family
 
Hello Ben,

HEAR ME NOW:

YOU ARE GOING TO BE OK !

BELIEVE IT !

It sounds like you've had some bumps in the road.
These are not uncommon and the doctor's know
how to bring you through it.

It's up to YOU to trust and believe that you will make it.
Keep a POSITIVE MENTAL ATTITUDE. That is
most important for a successful recovery.

Keep telling yourself:

"I'M ALIVE and I'M GOING TO MAKE IT"

and you WILL.

We're ALL pulling for you Ben.

Best Wishes,

'AL'
 
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