Patiently waiting for date! NOT!

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Taysgrama

Taysgrama

Well-known member
Joined
May 2, 2008
Messages
271
Location
Franklin, Ohio
I am new here and have read a lot of the posts in the forum and am so thankful to have found this site. I have been diagnosed with severe aortic valve insufficiency, tricuspid valve regurgitation (severe, as well), mitral valve regurgitation and prolapse. This has all happened within the last 8 weeks. I am a 48 year old woman who has never had heart problems up to this point. My heart surgeon is still trying to understand why it happened before he repairs the leaks. He cannot figure out how a normal healthy woman without any prior heart problems and no family history of heart issues. He did tell me yesterday that surgery would be scheduled by the end of this week for the beginning of next week. I will be getting the St. Jude mechanical valve and a ring around the tricuspid. He said that he is leaving the mitral valve alone at this time.

I have a ton of questions, but it seems like this forum pretty much answers everything for the new people. I am so glad that I found it. I just wish the surgery was scheduled already so I can stop stressing about it. I realize that 8 weeks is not a long time, but I am so tired of being tired all the time and so tired of having continual chest pain and shortness of breath, that I just want it over with.

If anyone has any words of wisdom for me, they would be greatly appreciated at this time. My husband and daughter are not doing very well with this at all. My sons are ok and my grandkids really do not understand what is happening with the grandma. Thanks to all for all you do to help people like me cope better!

Diana
Franklin, Ohio
Surgery to be at Dayton Heart Hospital - Dr. John Miller
Aortic Valve replacement and tricuspid valve repair
 
Hi Diana, We are in the same boat as you waiting for a date, they said within two weeks. I can't give you any advice but just wanted to say welcome, hope you get your date soon and best of luck with surgery and recovery.
 
Hello Diana and welcome ! You have found a place with a wealth of information, this site has been a life saver for me for certain. My situation was similar to yours in that I had no idea I had an issue and the next thing I know I scheduled for OHS. I had Aortic stenosis due to a bicuspid valve and it was in pretty poor shape when the procedure happened. However that was the only issue I had, everything else was normal.

The one thing about your post that made me pause was the fact that your mitral valve has an issue and yet the surgeon isn't going to deal with it while he is in there already. Im not a doctor but have you done any surgeon shopping or is this the only surgeon you have spoken with ? It might be worth your while to get at least one second opinion. Im in Columbus, OH and had my procedure at Cleveland Clinic. They do more heart procedures than any other hospital in the nation and given that your in a reasonable driving distance it might be worth your while to consider it. I know you want it over with, I totally get that because I was the same way. It took exactly 2 weeks from the time I called Cleveland Clinic for the very first time till my surgery. If your case is severe they will get you on the schedule very quickly. You could even overnight them your echo for review, thats what I did.

Don't worry about the procedure itself, the mortality rate is less than 2% for this type of surgery. Your still young and sound as if your in good health other than the heart issues. I was the same way and made it through with flying colors, was back to work in 6 weeks, and running 3 miles by 8 weeks ! You can do the same !

Im sure others who have more experience than I do will be along with their 2 cents also.
 
Hi, Diana.
I'm glad you have decided to post and share your story with us.
Is there any chance that you've ever taken some type of diet aid that might have damaged your valves? I think that is sometimes overlooked with women who have no readily discernible heart history.
I know this is a terrible shock not only to you but also your family, but with time, you will all learn to cope and put this behind you.
When you receive a surgery date, please let us know so we can add you to the VR surgery calendar.
We are here to offer all the support we can.:)
 
I have never taken any diet pills that I can remember. I have always been a little on the thin side, so they were never needed. I did take one of those medications that was recently pulled off the market. I can't remember the name of it. It was something for pain (I have arthritis in my knee). My cholesterol is also not so good. By bad is too high and my good is too low. They have tried medications for it, but I have liver issues and my liver lipids (spelling?) tend to shoot up quickly, so I take fish oil tablets daily to try and keep it under control. I also have very low blood pressure which is a whole different problem. I have seen 2 other doctors and this surgeon is the one that actually decided that surgery needed to be done ASAP. The other two surgeons wanted to put me on high blood pressure medication for 6 months to see if that would help. Finally, after doing a stress echo and a TEE echo, they sent me to the surgeon that I actually like and feel comfortable with.

I did think about the Cleveland Clinic, but because I will be out of work without pay, it is important that my husband keep working. He will take a couple days of vacation time during the actual surgery and the day I come home, but that is all we can afford at this point. My parents will be coming from Akron down here to be with me at home after I come home and all our kids live close by, so they will be there as well.
 
Why? Because your human. Humans don't need reasons for things to go wrong.

Sounds like you have it pretty much bagged. It's just the waiting that will continue to drive you nuts until it's over.
 
Welcome to the club!

I was pretty much inthe same boat as you. I'm 39 years old and I only just found out that I had severe Aortic Stenosis with severe regurgitation less than two months ago. Never had been told that I had a heart murmur and the cardiologist says I was born with a bicuspid valve.

My operation is May 12. yeah..that soon.

I've been assured that the success rate for these type of procedures is very good.

Take some time to look over these forums for answers as well. Finding this site was a lifesaver for me and helped to put me at ease. There are people on here posting that JUST had thier procedure done and by reading their success stories, you will feel a lot better.
 
Diana...sounds like you've done your homework and your all set. I have someone I work with who's father-in-law just had OHS in Dayton last week. He is 72 and not in the best of health but he went through the surgery without any issues, I think he got home on Sunday.

Best of luck to you, the waiting aspect prior to the surgery is what I found to be toughest. I think most would concur with that for sure !
 
Just want to welcome you, Diana and let you know that we will all be here to help you climb this mountain and you will be here to lend support to others in the future. The waiting is the hardest. I will keep you in my thoughts and prayers.
 
Welcome to VR. Sorry for the circumstances but glad you joined us. You've come to the right place for support and encouragement. Best wishes and good luck.
 
bicuspidboy said:
I, too, like ctyguy, wonder why the surgeon doesn't address the mitral valve while he's in there....
Click to expand...

I might have the answer: it depends on the amount of regurgitation she has. My tests showed "trivial" mitral valve regurgitation. Even though "trivial" means "eeny weeny," I thought the surgeon should fix everything while he was in there. He said, "Trivial regurgitation is the amoiunt we like to see after successful mitral valve surgery."

In other words, maybe that leak is the smallest they hope to see.
 
I totally sympathize with the sentiment: "Patiently waiting -- NOT!"

Every time I think my surgeon is going to decide when to operate, he decides to run some more tests.

My family thought I was crazy to want to wait until the summer. Now it looks like it will be the summer no matter what, because it will take that long to finish testing me!
 
Taysgrama said:
I am a 48 year old woman who has never had heart problems up to this point. My heart surgeon is still trying to understand why it happened before he repairs the leaks.
Click to expand...
Diana, welcome and I'm so sorry to hear you've had this shock. Almost the same happened to me. I'm 41. As Mary mentioned, have you ever had any ergot derived drugs? My problems were caused by a drug called cabergoline (dostinex) which I was prescribed for restless legs syndrome. If you take any meds at all, I'd research them to see if they are the cause.

I was exactly the same - fit and healthy until over the course of 2 months, I ended up almost dead. I too am now left awaiting surgery. Initially, my doctors said I'd have to have two valves replaced asap, now however, as has been known to happen with similar drugs to the one I was taking (notably pergolide) there has been some improvement once the drug is stopped. I'll never be cured but because of the improvement there has been, it means that the surgery is now not urgent, which is good in many ways, but it does now mean I'm stuck with it hanging over my head indefinitely, which is not so good. I too felt just like you; exhausted, breathless etc., and even though it's better than it was, it's still curbing my life and it's hard to not have a date so that you can think 'ok, it'll all be over by...' That said, better to be delayed than have more radical surgery than may be necessary if you see what I mean?

People who took the diet drug phen-fen in the 90's are only now seeing the effects in some cases, so think back over your recent history and up to 10 years ago. Are there any drugs, prescription or otherwise, that could be responsible?

As to the shock you are feeling, I know exactly what you're going through. It's devastating. It's the same as a bereavement and you will go through the same grief reaction you would if someone had died. Your grief is for the life you had, and your family will feel the same way too. As with grief, time heals it to some extent, even a brief time makes it more bearable.

This forum has helped me enormously - I don't know what I'd do without it, so at least you're in the right place here and someone will always help, even if it's just to read your rants and empathise with your feelings. Welcome and the best of luck to you.

Lynn
 
Hi , I had tricuspid valve replacement 3 months ago and while I DO feel better , not perfect yet. I am 42 and knew about my prob for awhile, but
was hoping that I wouldnt need to get the surgery , but in 2007 , I began
to become symptomatic . And by putting it off so long ,did some damage
to my rt atrium and ventricle.I Think its good that your family will be with you.
I told most of my family not to come , but they came anyway -and Im glad that they did! Lotsaluck,Dina

Lynn, Hi how are you ? It sounds like you still dont know if your surgery is on
or not , I know that this must be the hardest place to be.
I was doing some reading about restless leg syndrome and do you know
that its not even listed in the DSMIV(the diagnostic manual for psych.)
I am high anxiety myself and my primary care md told me I had 'restless legs'
so I looked it up and there was no listing for it- it seems the pharmaceutical
companies used this 'symptom' and turned it into an actual disorder,
I guess to sell the drug tailored made for it . Also the drug is only a sleeping
pill, if you look it up in the PDR, and does not mention restless legs at all...
unless they have recently changed it.In reality , I believe that 'restless legs'
is just one of the many symptoms of anxiety, and certain disorders that
have anxiety as part of their illness like Bipolar.
And now that I find that the med is dangerous on top of this....:mad:
My mother was one of the ones that took fenfen , and she does have a
murmur because of it , I think that she only took it for a short time and
so came out ok-knock on wood!- I cant help it , it must be the
celt coming out of me;)
wishing you well,
 
Hi Diana,

Welcome to the site. I know how hard it is to wait for surgery. My cardiologist and the surgeon both told me i have about one month to one month and a half before i can have major problems since i have critical aortic stenosis due to a bicuspid valve. This was back in mid-April that they told me this. The surgeon called me a week and a half ago (on a Friday night) and told me we were "under the gun" to get the surgery done and to call his office on Monday morning. I did, just to find out that he's on vacation for 3 weeks and he can't fit me in to come into his office to sign all the pre-operative forms until May 27th, and then he said i still have to do a lot of repeat pre-op tests. So, i do sympathize with you about waiting. Best wishes and lots of prayers!!
 
I can't believe that he did not know he was going on vacation for 3 weeks and that you would not be able to get in for such a long time. Sometimes I think the doctors like to get us all riled up just to see how we do. I did call my doctor's office this morning to see if they had it scheduled yet or if they had an approximate date yet and he is in surgery today and the girl that does all the scheduling is only in on Mon/Tue and Thur. so I have to wait until tomorrow.

Good luck with your surgery and the tests. If you are anything like me, you will have had them 3 or more times before surgery actually takes place.

Diana
 
My doctor keeps asking me about infections, so forth in regards to how this happened to me since my heart was very healthy up until 4 years ago. He also asked me about medications I have taken and a few of you here have asked the same thing. It just dawned on me a few hours ago that I took Vioxx for about 6-8 months right before it was pulled off the market. Could this have possibly started this chain of events with my heart? I am going to call my surgeon tomorrow and let him know, but thought I would run it by you all tonight.

Thanks again all......diana
 
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