I want surgery...(gulp)

[offwego]

Well, just had my 5 year anniversary for minimally invasive Mitral Valve repair and unfortunately, the repair didn't hold up and I have been feeling shortness of breath and tired more and more in the last year.

I've seen the head of surgery at NYU, Dr Galloway and just called today to schedule a TEE.

The medications he prescribed a couple of months ago, do help me take better breaths but I am still somewhat fatigued and it's hard to be as motivated as I would like to do the things I enjoy. I was very surprised that the decision to do the surgery is largely influenced by my desires. I had thought it was something that is more a decision surgeons suggest.

I can certainly continue to live this way and I know many do. I am able to do 9-10 minutes during the Stress Test.

I'm currently taking 80 mg of Diovan and 25 mg of Toprol..i suppose they can play around with the meds but doubt any medication is going to make me feel the way I want to feel (normal, that is..)

Dr. Galloway thought the next surgery would not be minimally invasive..

I can't believe I have to do this again but I am too young and active to accept this condition..

Just venting..

THanks for reading..

 

[Ross]

No one likes do overs, but sometimes we don't have choices either. I pray this one goes better and doesn't need to be done again. This crap is not age discriminatory.

 

[Phyllis]

That is a big "gulp", but obviously, you want to get back to a better way of life. Let us know the results of the TEE and as always, we will be here to help you through this.

 

[Karlynn]

I was literally begging for my surgery by the time the doctor said "yes". So I know the feeling. Sounds like the doc isn't saying much because he knows you'll need surgery, but the drugs are helping - so right now it's more of what you want to put up with - the drug and limitations or the unknown (but hopefully good) outcome of another surgery.

If the medication is allowing you to have normal activity, I wouldn't wait until you no longer have normal activity even with the meds.

 

[offwego]

Thank you for the replies! It helps to share this with people who have been through it all.

The doctor was great. He said the odds of needing another surgery were 50/50 within 7 years. He was excited about the new tissue valves lasting longer in the event he could not repair it again.

The recovery from the last surgery was a bit tough for many reasons, including undiagnosed MS!

Only two years ago did i get that diagnosis..I'm doing fine with it and doing a daily injection that is working amazingly well. But of course it's a factor in all this.

I am still amazed at how much the decision to operate is mine..But it makes sense at the same time.

Last time, I was told I had a very loud murmur (quite suddenly) and to check back in 3 months..I ignored it for 5 full years when it 'suddenly' turned into severely leaking Mitral Valve..

I am hopeful that by doing the surgery earlier that the recovery won't be as bad..

If I'm wrong, lie to me...lol

 

[offwego]

Just wondering if I would need to be taking Diovan and Toprol in the future if the surgery is successful? I know I will be on all sorts of meds for weeks but anyone have a guess as to whether I would need them in the near future?

would be nice not to take em..

 

[Ross]

Diovan yes, but the other may go.

 

[abbanabba]

I really get where you're coming from. I've also been very anxious to get surgery done because I'm so sick to death of living (or trying to live) with all the symptoms It sure is frustrating.

But sorry to hear the last valve didn't last so long... I hope the next one has a much longer life-span and it's nice to know you are the ones calling the shots. I'm sure if they thought it wasn't the right thing they would discourage you.


A : )

 

[CindyWilson]

Offwego,
Hi, i am in the same situation you are sort of. I had my first surgery april 2007 MVR. 3 months doctors were already wondering when my next surgery AVR would be. I was evaulated by Southwestern where they do heart transplants because my cardio dr. was worried i would have to have second surgery before my 2 year aniversary date. Well 6 more months and i will have 2 years in. I have sever AV regurg. mild-moderate tricuspid regurg. and MV stenosis. Cardio dr. has been increasing meds. 80mg lasix 1 - 2 tabs per day, toperol 50mg twice a day, he stated next april he was going to put me on treadmil to help determine when surgery will be, he also stated he would love to wait till 2010 or 2011 trying to get as much time as possible between surgeries.
I personally would like to it get over with and start feeling better. I never have the energy to do stuff. My husband doesnt like me to go anywhere alone it makes him worry to much. I have gotten so exhausted out with him that i couldnt move for 35-45 minutes.
So i think drs believe longer between surgeries yield better results.
Good Luck with your health choices.

God Bless
cindy

 

[offwego]

Diovan yes, but the other may go.

That's good to hear.. The Diovan is fine..had no side effects with it..

My cardiologist is competent and qualified but at the same time, I wish I had been seeing the cardiologist at NYU who just has that much more experience with post op MR repairs. I know I would have been prescribed Diovan much sooner and perhaps the Toprol as well. WHo knows if it would have preserved the valve longer but it would have reduced my discomfort and the intense pounding in my chest. I didnt' want to mention my heart to one of my kids but she put her head against my chest and said, "Dad what's wrong with your heart??"...that was a nice moment...ugh..

My heart is much 'calmer' with the meds and my fatigue while not 'extreme' by any stretch of the imagination, is just 'there'...I went into NYC today for a dental appointment, walked around a bit and basically was wiped out.

I know the surgeon and doctors are by no means allowing me to make this call on my own but at the same time, I suspect they like the idea of doing a 'simple' operation on a reasonably young candidate in overall good health..good for their stats..or maybe I'm just too cynical.

Regardless, I am preparing myself for the TEE in a few weeks and with the doctors in agreement am going to start seriously planning for when we can just get this done..

The fear is palpable if I think too much about it but somehow, I just put it in another part of my brain, realize it could be much worse and basically I don't feel like I have much choice. I could live with this I suppose but would feel like I am giving up and not getting the most out of my life.

I knew I should have gotten the extended warranty!

 

[WayneGM]

Sorry to hear your MV repair didn't hold up. I had a MV repair, too, so I feel for what you are going through. So far so good but I'm only 2 3/4 years out. best wishes and good luck.

 

[offwego]

I'm trying to remind myself how much better I will feel....right??

 

[Ross]

I'm trying to remind myself how much better I will feel....right??

No guarantees, but definately PLAN on it! If you put your mind to the task now, it may well help the outcome. It's all too easy to give up the ship afer surgery when your feeling the depression and body chemicals all out of wack.

 

[hensylee]

Wonderful to have children who pay attention, isn't it? wishing you all the steps forward to get you where you need to be - regardless of the fears. scary situation to be in, but you've been through that before and you are still around to go again. Best wishes. we're waiting to hear how the TEE goes. Blessins..........

 

[ponytaila1a]

I am still amazed at how much the decision to operate is mine..But it makes sense at the same time.

Your comments are mine exactly. I am contemplating MV repair and have very few symptoms and am on no meds! I feel if I can wait perhaps the repair will last until I am too old to care. I am 62 now. I just cannot believe how much of the decision as to when, where , how and who is mine.....especially the when. I have never been told what will be result if I postpone surgery. Just that the leakage is "severe" and to schedule the surgery.

 

[Jkm7]

I did not ask until after my surgery what would have happened if I had not had the surgery.

I initially was told, "Everyone is different." How many times do we hear that?
We know it is true but still I wanted more clarity and asked again.

I was told I would have quickly had a very poor quality of life.
When making the tough 'when to' decision, keep in mind there is a point of no return.

 

[offwego]

I did not ask until after my surgery what would have happened if I had not had the surgery.

I initially was told, "Everyone is different." How many times do we hear that?
We know it is true but still I wanted more clarity and asked again.

I was told I would have quickly had a very poor quality of life.
When making the tough 'when to' decision, keep in mind there is a point of no return.

I was at the point of no return on my first repair as I ignored the cardiologist when I had a sudden loud murmur. That lasted 5 years until it 'suddenly' turned into severe leakage. But for the most part I did well for those 5 years and did not damage the heart.

of course I will never ignore the doctors again!

I scheduled the TEE today.Going in for it December 2nd..a big move for me...I was going to wait till January or February but am feeling slightly more fatigued than I was, something tells me it's worsened a bit and I am just going to bite the bullet and get the test done.

My educated guess is that as the leakage is not yet severe (or wasn't a couple of months ago), then it is still my decision. Dr. Galloway was in no way, pushing me towards surgery in the slightest and felt I could remain pretty much as it is for 5-7 years and perhaps even never need the surgery. He put the odds at 50-50. When I told him that I am traveling alot these days and am concerned of it 'suddenly' severely leaking, he said he doubted that would happen but will know more after the TEE.

If the valve is not severely leaking, the surgical option falls into this realm..Once severe in a patient in decent health and not a surgical risk, I am pretty sure it's no longer much of a discussion.

If I had not asked all these questions, I am certain they would not be suggesting surgery, or at least would not have based on the last echo/stress test results in which I was able to do close to 10 minutes using the Bruce protocol doing the test.

But all that being said, while I am quite functional in my day to day life, I know (in my heart pardon the expression), that this surgery is inevitable.

Dr. Galloway is very confident that the surgery whether replacing with a Tissue valve or the 50-50 odds of a repair would bring the valve back into the normal range and I would feel better...assuming no complications of course.

I don't see this as much of a decision. I think without a doubt I need to do the surgery but of course will listen to people here and my doctors..

 

[zipper2]

I'm so glad youve made your choices,i started getting sick

last nov of 2007 and let it ride till june of 2007 i told my

Fam. Dr. in jan last year ,but said to wait cus maybe it was nothing

i lost my click in mech. valve to getting so sick now,my echos both

in june say within 6 months surgery and now i'm so sickly waiting

for a call into surgery,Please everyone do things at the moment

theres a problem .........Don't wait. I'm glad for you,as good advise to

you has come in all posts,listen to us.

Take care of yourself and proud of you.


zipper2 (DEB)

 

[offwego]

THank you for that post Deb, it helps...

 

[offwego]

Boy an update a year later! Never had the TEE but have been seen often by my Cardiologist.Leaking appears a bit worse moderate/severe, He added a diuretic in to th emix with Diovan HCT 160mg..

I'm not liking how I am feeling and I have decided to kick it up and notch and see two surgeons and maybe a different cardilogist and plan on surgery for this winter.

Unless they can change the meds and make me feel better..I do ok and all but sweat too easily and get fatigued to easily..I'm active but I hate exercise feeling this way.

I'm too young to feel so old...52...

I ahve the time to do this and the money...I just want to hear how much better I'll probably feel!

Updates coming!