Hello, I'm new member

[Texasky]

Hello everyone. I found this site several weeks ago and now feel like I know everyone. I'm so glad I found it. I was told the first of December that it was time to have my mitral valve repaired. I have severe regurgitation and my left artium is beginning to enlarge. I've had a heart "murmur" since I was 5 (I'm now 51) and the diagnosis of MVP since I was about 20. Cardiologists have been watching it with echos. Was told about 5 years ago I would probably need surgery some time in the future. But when I was told in December it was time, my whole world was shattered. I was crying at the drop of a hat and didn't know how I would get through it.

After reading these posts for the last several weeks, I see that I'm not the only one going through this. So many of my questions have been answered by people that have gone through it, not just doctors talking about it.

My surgery is now set for March 1 and I'm getting really scared again and the tears are coming back. I don't know how I'll manage the day before?wish I could just sleep through it. And one of the things I really worry about is waking up after the surgery with that tube down my throat. And the hospital film I watched said my hands would be "loosely tied" when I woke up so I wouldn't accidently knock the tube out. Sounds like something I would rather sleep through.

And also now my other worry is deciding what kind of valve I want if the can't do a repair (80% change they can). This stress is really getting to me.

Kylene

 

[ALCapshaw2]

All pretty normal reactions to 'the news' Kylene.

IMHO, when the heart begins to enlarge, IT IS TIME, so you are right on track. There have been many posts about coping with the 'breathing tube' and the concensus is to 'just breath WITH IT, not against it' and you will do fine.

Let your surgeon know you are anxious and would prefer to be 'out of it' until AFTER he pulls the breathing tube. They can control your level of consciousness and also give you something for anxiety and sleep before surgery.

If you have not read over the Pre-Surgery, Post-Surgery, and Valve Selection Forums, I highly recommend that as a place to start.

Basically, Mechanical Valves 'last forever' but require anti-coagulation medication (Coumadin) for life. Tissue Valves do not require anticoagulation (unless you develop continual atrial fibrilation) but tend to wear out in 10 to 20 years, thus necessitating a second replacement surgery.

Know that EVERYONE here represents a Successful Surgery and EVERYONE has been scared. Most say that the WAITING is the worst part and the surgery itself, while major, is not as bad as they feared.

Read as much as you can and feel free to ask any questions as they come to mind.

Welcome Aboard Kylene!

'AL'

 

[punkin32180]

Hello I am a 23 year old female,I go on Feb 26th to get my pulmonic valve replaced and let me tell u.. reading through your post reminded me of me sooooo much... I cry just knowing my surgery is a week away and the thing that scares me is waking up with the tube down my throat as well.. but these people here have all been so helpful at easing the nervousness and the on thing that has helped me is reading the post surgery post from people who have had surgery and made it through just fine... good luck in your surgery i will keep you in my prayers and thoughts and wish me luck when i go in a week... Jaque

 

[Karlynn]

Welcome Kylene!

I'm so glad you found this site. I went almost 12 years past my mitral valve replacement surgery before I happened up this great group of people - and I cried just thinking how much easier it would have been had this site been around 12 years ago.

I had my replacement when I was 32, with 2 small children at home. You will get through this and very well, I'm sure. I didn't have a valve choice. They put in a St. Jude Mechanical and it's been clicking away for 12 years now. The coumadin has not been a big issue for me. But there are draw backs, as there are draw backs to going with a tissue valve.

Let your doctors know (you too Jaque!) that you are frightened of waking up with the tube in your throat. There's also some good threads on here that tell you how to cope, and how to practice breathing with the tube and not fighting it. It's not a pleasant experience, but it's not a horrible one either.

Please keep us posted and let us "hold your hand" through this.
Best wishes.

 

[Christina L]

Kylene,

Welcome to this wonderful VR.com board. You will find lots of inspiration, answers, and calming of your fears here - there are so many wonderful people who have gone through heart surgery before you, who are here to help the newbies.

I had my mitral valve repaired in Cleveland on November 6, 2003. I am getting better week-by-week. Right now it is a mental game for me - to not fear tomorrow, but to live for each day and be thankful to God for bringing me through the surgery and for each day that he gives me. I am working HARD on that!!

The breathing tube I don't even remember, although it was in my throat when I was waking up and I kept pointing to it I guess - I was so out of it, I don't remember fighting it or having a hard time breathing or it being uncomfortable!! I don't remember it at all. Most people wake up without the tube anyway.

You will get through this - you will be amazed at yourself - almost four months have passed since my surgery and I can hardly believe it.

God bless -
Christina L.

 

[dawnwit15]

Welcome

Welcome

Kylene
Welcome to the site. I found it 3 days before my surgery and the people here really got me through the toughest time in my life. I'm 29 and just underwent a mitral valve repair on 1/14, I was scheduled for a replacement but once they opened me up they realized they were able to repair instead. I too have MVP in addition to aortic regurgitation, murmur, mitral stenosis and rheumatic heart disease. They monitored me for a while. After I graduated the police academy I started noticing more intense symptoms. I think they physical strain from the academy intensified my condition. I had a mitral valvuloplasty done in 10/02, in case you are not familiar, it's a balloon they open in your valve to open up the valve so the blood can flow properly and relieve the stenosis. As luck would have it 6 months later the balloon procedure failed and I was back in congestive heart failure.
When discussing surgery, my surgeon advised of choosing a valve in the event a repair could not be done. I chose the tissue valve only because I am 29 and have not had the opportunity to have children yet. I was concerned about the Coumadin medication and it's affect on possible pregnancy in the future. However I did need to accept that with the tissue valve I would likely have to return in 10-15 yrs. to have another valve replacement with the mechanical valve. The mechanical valve last "forever" but you will have to be on coumadin. Discuss these options with your family and doctors in order to make a decision you are comfortable with.
Ventilator-Kaylene I cannot tell you the anxiety I had pre-surgury regarding the tube. Everyone on this site helped me accept the possibility that it may be in my throat when I awoke and coached me through it. When I awoke from surgery on 1/14 I did have the ventilator down my throat. You must breath with it. Do not fight it. Remember this tube is breathing for you until you are able to breath on your own. The doctors want it out as soon as possible and they will monitor you closely and remove it asap. Just remind yourself to remain calm and breath with it's rhythm. It's over before you know it. They will have you so heavily medicated it will only seem like a minute of your life if that.
If you are experiencing extreme anxiety over all of this, please call your doctor. Don't be afraid to ask for some Xanax to get you through the next week. If you do not like taking med's try some holistic approaches such as meditation, deep breathing exercises. Talk to yourself with positive statements such as "I will get through this", "this too shall pass" and "I'm ok". Keep repeating these statements to yourself and allow your body to relax as hard as that may sound right now. Don't let your control you. Stay positive and strong as your strength will help you get through recovery.
We here have all been in your shoes so I can sympathize with your fears and emotions right now. I cried at the drop of a hat pre-surgery. It will be over before you know it. Yes, you will be ok and you will feel back to normal again. This is just a bump in the road.
We are all here for you!! Anytime. Please read all the threads on this site as you will see that your not alone. What your feeling is completely normal.
Love & good heart health
dawnwit15

 

[catwoman]

Kylene:

I've sent you a PM.

Where will you be having surgery and when (exact date in March)?

There's several of us vr.com members in the greater Dallas area (I have family in Big D, I consider myself in the greater Dallas area).

Marsha

 

[Texasky]

Thanks for all your replies. I think I've read most the posts during the pass several weeks and believe me, reading them has been the biggest part of what's keeping me sane.

My surgery is set for Monday, March 1, at 8:30 a.m. at Presbyterian Hospital in Dallas. I'm definitely on the countdown.

 

[SJJ]

Kylene,
I'm so glad you decided to come out from lurking in the shadows and say "hey." I lurked for a bit too before joining in the fray. Since you've already read so many of the posts, I don't have to persuade you that the folks here are exceptional. You've also noted that you're not the only cowgirl shakin' in her boots at the prospect of OHS. Not to worry...no denying that it's major surgery, but it's also got a proven track record of improving, not to say saving, the lives of thousands each year. You'll be going in about the time I'll be arriving back home (mine's the 25th). We can commiserate on our recovery together-along with a whole slew of other folks scheduled for surgery about the same time. Glad to have you with us.

Sue

 

[Bryan B]

Kylene,

Not much I can add but welcome!

I found out on Jan 5th that I needed surgery and still don't have a date. I'm a worrier by nature and have a track record of panic disorder, so going this long without getting a date has been difficult to say the least. I guess my "higher power" must be allowing me to get all the "meltdowns" out of the way now so when I get a date it will seem like relief to know all this waiting will end at some point.

If you need to lean on us don't hesitate to do so. The people here are great and have me convinced that all this waiting is the hardest part of the process.

 

[Texasky]

Sue,

Thanks for making me laugh. . .I am definitely a "cowgirl shaking in her boots." But I do feel so much better about this up-coming surgery thanks to everyone on this board.

 

[Kathy]

Kylene,

I am glad that you found this site now. I only found it a few days before surgery and was so busy that I had very little time to look through the old posts.

I was diagnosed with MVP at 50 and told I would need surgery at 51. My PCP told me I would need surgery in the future and that I should see a cardiologist in a year. I had a mitral valve repair 11 months later.

Everyone here understands your fear and we are here to encourage and support you. If you like, you can post here every day and ask for help. You'll get it!

Sounds like something I would rather sleep through.

A lot of us did sleep through the tube. I awoke briefly from my drug-induced stupor when my husband told me that I was able to have a repair and told myself to go back to sleep. It worked for me.

 

[momta3]

Kylene,
My son is also getting a cath and maybe balloon done on him on the 1st of march. I am a very nervous mommy. Brandon has Aortic Stenosis w/ blackflow into the heart so they are not sure they can do the balloon but they are deff doing the cath and we will see when they are in. If they can't do the balloon then we must start making plans for open heart vaulve replacement by the summer.
I just wanted you to know you will not be alone in the hospital on that day. We may not be in the same hospital but we will be there.
Good luck and prayers
barb

 

[George DiMundo]

Welcome to this site. I, too, did not find it until very near my surgery date. The information, support, and feedback I have received from the members here has made all the difference in my recovery. My surgery date was only 10 days after I was told I needed it so I did not have much time to worry or to be scared. As others have said the surgery is going to improve the quality of your life and it has been done for so long that the surgeons are very good at it. Also, you will have the breathing tube in for a relatively short time while you are really aware of breathing on your own that it is not as much of a problem as you are imagining. My surgery was just after noon and the tube was not removed until about 9AM the next morning. I was only aware of it for less than an hour and then only because I took a breath out of sync with the machine. Once I relaxed everything was fine and I coped with it. The best advice (that many others have offered) is to relax and not to worry about the tube. Also, rather than to focus on your surgery, try to look past it to the time when you will feel stronger and your heart will be running more efficiently. I wish you strength and the comfort in the knowledge that all will be well soon.

 

[Debrinha GT]

Kylene's surgery

Kylene's surgery

Hi new member, I know exactly how you feel and I want to begin by saying that when you can't beat your enemy, join him. Unfortunately, there's no way out of certain situations and I do know what I'm saying. I'll be having my fourth mitral valve replacement sooner or later and although I don't welcome this, I have no choice, so just like the other times, I am trying to come to terms with it as best as I can. I know the feeling and it's a mixture of anger, frustration and fear but whenever I get upset I say my prayers or simply start doing something in order to keep my mind off it. This site has helped me an awful lot and I'm sure you will benefit from it too. As for choosing the right valve, I myself feel a bit mixed up seeing that there are advantages and disadvantages in either mechanical or tissue ones. Try not to worry so much and trust your doctor; you'll be in good hands. Remember that one's physical well being can be affected by his emotional condition so think of good things and make your plans for the future and when you least expect, everything will be over. Above all, have faith in God and try to carry on with your life normaly until then. Take care and write whenever you feel like or need to get things off your chest.

 

[Bob]

Hey Gal dont worry about the tube. The chance that you will be awake while it is in is small. Thats no problem. Now what is a problem is sneezing after surgery! Boy is that an experience. Ask them for a chest pillow or find a 4" thick pillow that will cover your chest. Yes really. It is to hold to the chest if you have to cough, and you will, or sneeze, which you hope you dont. I had a MVR last year when I was a young 67 and if an old Montana guy like me can do it a young Texan gal should just dance through the whole thing. Good Luck to you.

 

[KathyH]

Hi Kylene, welcome to the site! I just found out I am having an aortic aneurysm repair and an aortic valve repair or replacement one month after you- April 1st. My crying jags are better but I can't help but thinking about everything when I have quiet time. I will be glad to have this behind me. I am relieved to know I will have it done sooner rather than later, but then I think, I feel fine now, is is really true that I have to have this done. I guess it's all part of accepting the fact that you need surgery done.
Good Luck on your surgery.
Kathy H

 

[ShezaGirlie]

Hiya Kylene...

Hiya Kylene...

Welcome to the greatest bunch of people in the world.

In case you haven't heard yet, we Texas gals are battin' a thousand on successful surgeries!

Just Tough, that's all...

 

[dawnwit15]

Good Luck

Good Luck

Kylene
My prayers and thoughts are with you for Monday. I know you will come out just fine. Before you know it you'll be back home, the worst part is almost over. Stay strong and positive.
"This too shall pass"
Best of luck.
dawnwit15

 

[ticktock]

Kylene
As Janie can attest, we Texas Gals are TOUGH! You are gonna be just fine!! You have to take off the boots though, when they take you to surgery!

As for the tube, it is unpleasant. BUT, it is such a very short time, and if you know what to expect that is half the battle. After my last surgery, I remember waking up, feeling the tube and smiling around it. I was so tickled to be awake and alive that the sound of the respirator was actually comforting! Maybe you can think of it in a positive light. Then, go back to sleep!

Best of luck to you!
mindy