scared:recently diagnosed leaking valves and heart failure

[tiggerangelgirl]

hello everyone iam 27 yr female ,last year i had a dual chamber pacemaker inserted and all my nodes ablated ,iam completly dependent on my pacemaker with no activity of my own anywhere,weel three weeks ago i started to feel bad ,tired all the time extremly short of breath and it had gotten worse,i do have chronic constictive pericarditis and my diaphramic nerve was paralyzed and heart injured in an accident in august of 2000 so ive been dealing with alot but i can tell something had changed so i visited my cardiologist two weeks ago and he order some test and an EEE,well the results not good,i have two leaking valves one being the tricupsid and another not sure the name ,he said i think the one thats suppose to stop the blood from going into your lungs,because recently he had to put me on 24hr O2 and he said this is probaly contributing to the sob,i dont know anything about this please if anyone can tell me about the surgery and what to expect,i have to go to Duke University Hospitial on sept.19 and set up for my surgery,two valves replaced and a pericardectomy and im scared .last night ive started to feel real bad my chest pain is out of controll and i feel that i canot take a decent breath ,also i can feel my heartbeat and its different i feel like its being sqeezed and not letting go and this makes me feel real dizzy and afraid that somethings not right ,please someone write and tell me what i should do you all have been through it and my doctor wont be in untiltuesday should i go to the er with these worse symptoms
scared and alone nicole

 

[Creed3]

Hi Nicole,
By the sound of your post, you are very concerned and feel that something is not right. No one knows your body like you do. I think you should go to the ER right away. If it turns out to be nothing, you will have peace of mind until your next doctor appt. If it turns out to be something, then you did the right thing by going to the ER. Either way, you will feel better than you do now. These types of surgeries are becoming more and more routine. One year ago I had my aortic valve replaced with a mechanical one and I also had an aneurysm in the aorta repaired. Surgery is a scarey thing, but we can all relate and help you through it. The uncertainty of the surgery is the scariest part. Once you get through the surgery, you will feel like a new woman and be on your way to recovery. Please feel free to ask any questions or just vent if you need to . We are all here to help you. Please keep us informed on how you are doing.

Take Care!
Gail

 

[bvdr]

Hi Nicole,

I sent you an e-mail a little while ago but I see you already made it on the boards. There should be many folks along shortly. I officially welcome you here.

 

[Ross]

Hello Nicole and welcome to the forums.

While you have a complicated case, after reading what I've read, I do not think you should wait for you doctor to return. Go to the ER now! By the sounds of everything, your surgery isn't going to wait that long. It's better to be evaluated now and rule out problems then to wait until your in even more danger. Please go and see them. Let us know how it turns out.

The surgery itself should help you tremendously. They've pretty much gotten it down to a fine science. Placing myself in your shoes, I'd be more afraid of the other problems with my heart then having the surgery. It's rough for the first couple of days after, but it's nothing that you can't deal with. Please get evaluated now.

 

[Georgia]

Hi Nicole

Hi Nicole

You're not alone anymore. We're here to help and share our experiences and encourage you; and of course, the very first thing you should do is haul your self off to the ER. Then come back and tell us what they said and let us work our little bit of magic on your fear.

Don't want to hold you up - get to the hospital. Then let us know.

 

[Nancy]

Go to the ER, right away!

Go to the ER, right away!

Hi Nicole-

Go to the ER right away. Then please come back and tell us what happened. We're all here for you and will get you in the right frame of mind for your surgery.

But first things first. Put out this immediate fire now, and then we'll chat, OK.

Welcome, and get going.

 

[MelissaM]

Hi Nicole,

Welcome to the forum - and please let us know how your trip to the ER went! Anytime you 'can't get a decent breath' it is time to go. . . I am sorry to hear that you are going through so much - that is a lot to deal with all at once. While valve surgery may seem routine these days, we all know it is NOT routine - which is why we are here. It can be scary facing the unknown, hearing that yet ONE MORE thing is going wrong with your heart, and you are facing near-term surgery. When you have recouped your breath, take some time to read through past posts and learn a bit about valve disease, pre-surgery preparations, and about the surgery itself. Feel free to ask LOTS of questions - we are here for you.

The past few days I have been roiling in pain from a pericardial effusion. If your pain from constrictive pericarditis is anything similar, you have my full sympathies, girlfriend. It is NO FUN at all!! Hang in there and keep us posted. You are no longer alone!

Melissa

 

[tiggerangelgirl]

thank you everyone for your wonderfull words of encouragement,its feels as though you are family and as i read your posts i feel as though finally somebody knows what i'm going through,yes i have contacted my current cardiologist and iam waiting for his call,alot of prayer got me through last night and i still feel weaker than i ever have before but many things keep me afloat ecspecially my two nieces who iam currently raising on my own,i know it might sound strange but i could not go to the hospitial because i do not have anyone to take care of them and so i do put myself on the back burner alot,but i know if i dont take care of these problems know i wil not be able to be here for them as i want,they are the ones who get me up and going in the morning,if it werent for them id probaly be in bed feeling sorry for myself but since nov.of last year they have been here and with the exceptions of my current news things have been great,they give me the desire to keep fighting because believe me many times i wished that the Good Lord take me but now that im a "mommy-Aunt" it makes a big difference,my littlest one is with us now and she wants to say hello,her name is Cierra but we call her sissy she also wants you to know her sisters name and her name is Cayla she is 5 and started kindergarden last week,sissy is 3 and starts bible preschool tues.
im so excited that i found this link last night just by browsing because i now feel i have gained many friends and wisdom since everyone has had some sort of valve/heart problem thanks for all your great advice iam looking foward to talking with you all soon and when i find something out i will make sure that you are all informed.I told you last night a little bit about my history but i would like to tell you of a wonderfull healing,when i got in the accident that damaged my heart those first weeks and months were terrible ,one day i was up the next day down and in the hospitial constantly,well during this time i had a small stroke in dec. of "2000" i was paralozed on my left side with some use in my hand but none in my leg i was in a chair and in metal shoe braces one day i had enough i couldnt take all the ups and down related with heart disease so i dragged myself to church which very conviently i live behind and stood up and told God i was tired of this chair and braces and you know what God spoke to the preacher to take off my braces and to stand up and walk with me while the church prayed ,You better believe after about 5 min of trying to walk i felt aterrible pop in my leg and foot and thank you Jesus I Was Healed!no more braces and absolutly no more effects of the stroke so i knew then that no matter what i have to go through God has the bigger plan!!!!!!!!
well i'll sign off here i'll wait to hear from my cardiologist and see what he says please keep me and the girls in prayer i know im facing a big surgery and i have no place for the girls to go and dont have someone to help us,we have a very small church with alot of old couples who really cant help,but i know God will make away. Can anyone tell me what to exspect from the surgery ive read alot about it but i would like to know a little more,like how long is recovery time for open-heart?do they put you on a resporater?and which is the best valve to use ,does it depend on each individual?many questions still but i feel so gratefull that someone had started this forum because ican already see its a blessing also how can i post a picture im knew to this computer only got it 4months ago and its my first expierence with them and its great................talk soon i promise

 

[Paula]

Hi Nicole and welcome!
Hope everything turns out ok. Please let us know.

 

[nadi]

Welcome!!

Welcome!!

Just wanting to drop you a quick note of welcome.
I wanted to mention I also have a Ciara. She is my granddaughter and is 2 1/2 yrs.

My surgery was 5/5/03. I am doing pretty well except for a couple of minor problems that hopefully meds will take care of.
I will say that for a while after surgery you won't be able to carry your girls. The first 4-6 are the hardest part of healing, after that you might forget and try to do to much and that is not a good idea. I am sure some will be along to give you some insight also.

Take care,

 

[Nancy]

Hi Nicole-

Heart valve surgery is a highly perfected surgery. Most people stay in the hospital about 5 days, some a little longer, and some a little shorter, so you're out pretty rapidly.

You will need someone to help you for at least the first week, and with the little ones you are taking care of, someone should be there much longer for you and the girls. You will be on pain medications for a little while. You will not be able to drive right away. Probably not for 4 or 6 weeks. And you will need someone who can drive you to any medical appointments. You will be in some pain, and will be very weak and tired when first home. You will not be able to sleep well and most find that sleeping in a recliner chair is good. You will not feel like eating for a little while, and probably won't be able to prepare meals for yourself or the girls.

At 6-8 weeks, you will be feeling quite well, but will still be tired and weak.

Your surgeon will determine when you will be able to lift anything over 3-5 pounds. This is because the sternum has to heal, and that can take about 3 months, sometimes longer. Lifting too soon after surgery can cause a failure in the healing of the bone, so patients have to be careful of that. This will include wet laundry, picking up children and even opening heavy doors.

So there are a lot of things to consider and you have some time to make a plan for getting yourself some help. Start with your church. Even though those people are older, thet might have relatives that could help you out temporarily. So ask your pastor And if you have any relatives that can pitch in, now is the time to ask them to help.

Wishing you all the best.

 

[tiggerangelgirl]

thanks to all of you ,yes i do have a church family and i know they will pitch in some ,but the relatives are a different story im a migrated moved from new york 10 yrs ago and only my mom who im trying to work on a relationship with but im still praying hoping shell come around and my younger sisters lives somewhere around here but she gave up her kids to me to live her crazy life of partying,thats what makes the surgery so hard I know i need to go to the hospitial now even my DR said so ,but i have to find someone to take the girls until i get back from the hospitail and then have a live in nanny/helper to help me recopperrate,i would love to spend some time with my sister and it would give her time with the girls but i cant have all the added stress of her lifestyle into my house or worry about the type of people she could bring around..Please keep praying thats whats holding me up i need to be in the hospitial now,but ireally dont have anyone ,waiting for my berothers reply from ny trying to see if he can get time off
im still nervous about the surgery has anyone ever had a pericardectomy and valve replacement at the same time am i looking at a big surgery and down time ,thank you for all your welcomes and i hope everyone is doing well

 

[Ross]

Nicole while I realize that you need someone to "fill in" while you are out, you must realize that waiting is very dangerous for you. If you put this off too long, you may not be around for those that you care about and care about you. You need to put yourself first RIGHT NOW. Let whatever else happen the way that it will until you are safe and fixed up. Let go and let God and your doctors do the worrying for now.

While I haven't had the full blown pericardectomy, I did have a pericardial window and aortic valve replacement. You won't know the difference once it's done. They are just trying to get the majority of pressure off of your heart, which is something that some people simply have to have done.

The valve replacement is the larger issue here. It's done everyday on many people across the U.S. and it is a life saving procedure. It is rough for the first few days after surgery, but it is certainly something you can handle. There are many of us who have gone before you and there will be others after too.

Take your fears and lock them away from you for now. You cannot control what is happening, so don't even try too. Losing control is a hard thing to deal with, but as soon as you realize that you don't have any, the sooner things will start getting better. Please get yourself attended to before it's to late.

 

[bvdr]

Hi Nicole,

You have recieved some very wise counsel on this board. Start positioning yourself to get help for at least 4 to 6 weeks. If you need less that will wonderful and if more you will have some time to work on arrangements then. Your church is an excellent place to start.

You may need to also get the social services department involved. Do this sooner rather than later and find out what help is available in your area. You mentioned you migrated down to the outer banks area but I don't know if you mean to imply that you are an immigrant- legal or illegal- as well. It actually seems sometimes that the more dire the circumstances the better solutions that are available.

I am doing very very well and it will be only one week tomorrow but I am still very weak and would be in no shape to care for another human being. The surgery wasn't as bad as I was prepared for but recovery doesn't happen overnight.

The fact you already have a pacer is a good thing. The fact that the you are 100 % dependent on it also eliminates the worry of some nasty arrythmias.

As Ross said earlier, this isn't something that you have much choice about. Find out what help is out there, how you get it and pray for guidance the whole way through.

 

[Bill Hall]

Hi Nicole - Welcome to the site and our wonderful group. I hope you are feeling better by now and that you get to see your doctor/hospital soon. You are pretty young, so should have no problem with the valve surgery (not familiar with pericardectomy). I also noted that you are out on the Outer Banks. I own a house our there (ocean rental in Corolla), and I think its a great place. Good luck.

 

[csutherland]

Get in touch with your pastor and his wife ASAP and let them know your dire situation regarding the kids. Sounds to me as if you need help with them now as well as after surgery. I'd sooner trust them with some of the church family than get social services involved. Surely, there are enough good folks in the church to help you, even if they are older.

Don't put this off. You don't want to get so sick that someone has to come and take them without your consent.

 

[tiggerangelgirl]

i was wondering if anybody can give me some advice on how to work through this forum,i very knew to computers so i need alittle bit of help. How do i post my picture and a quote like you all do when you respond to my questions i think its great because not only are you giving me advice i also get to see who you are and i would like to do the same ,do i just keep on asking questions through this way and if i want to repply to your wonderfull words of wisdom and encouragement ,where do i go ,do i send a personal message ?or just post them here and also can i respond to the other stories and give advice on things i have been through. This Forum is wonderfull and i cant say enough on how much you really all do care and you know the struggles,the ups and downs of heart disease.Thank you for allowing me to wallow in my own self pity ,i try to act so tough all the time and pretend i got everything under controll ,when in true light im absolutly exhausted,its really hard trying to take my nieces and with school and going out 3 times a day to drop off and pick up is really catching up on me ,everyone has tooken advantage of me because im not working and have a house so without ever asking to help out the mom and dad ditched each other and then us,so its hard for me to face the real facts,please pray that i will be able to see my cardiologist and be truthfull on how bad ireally do feel,and i know that my heart cant take alot more so i hope that they an move my appt. up and just do the surgery and i know if it comes down to doing it soon someone will jump in and help,but please tell me what to expect,how long is an average stay in the hospital and has anyone ever had it done at Duke University ,is there a place for my family to stay like a ronald mcdonald house,i have a wonderful 'Mom" in the spirit and i know she wil be with me the whole time if anyone has any info on duke please write back either here or easieron my email [email protected]
thanks everyone i will tell you what the docter says tomorrow,i can bet when he sees me he'll know that im bad off and he might send me off to duke right away,and at this point even though im scared i would feel alot better in a hospitial under a controlled enviroment and would rather have my surgery now than a few weeks from now,i think that Duke has a computer room on the cardiac floor so if he sends me that way i will try to contact you from there,so if you do not hear from me soon,assume that i did go to the hospitial and if any of you live close around or have an appt. it would be great to get to know you my full name is NICOLE JENSEN please feel free to stop by,give a little support,some advice and just plain frienship because having people there means alot.love you all oh! by the way im not an immagrant i was born and raised in upstate NY and i ment to say that i migrated south you know like the birds do because of the cold ,but let me give you some advice i would rather take all the snow in the world instead of this terrible heat and yellow flies and mosquitoes here in good old manns harbor,outer banks ,nc

 

[Guest]

Welcome, Nicole!

Yes, please keep asking questions by posting to the board . You can either answer our answers directly by posting to the board, or by PM...whichever you prefer...it's all a matter of personal taste....

I can't say that I know how you feel/what you are going through per se, but I can tell you that you definitely need to put yourself first...otherwise, as has been mentioned before, you may not be around to take care of those little ones....

Good luck with the doctor tomorrow....I will keep you in my thoughts/prayers.

On a lighter note, I kinda figured that's what you meant by imigrant . LOL! And, actually, I had attempted to be one of those "transplants" (pun intended, of course, for comic relief purposes) like you, except I didn't quite make a go of it. I moved from the Chicago area of IL to Nashville TN in September 1996, but fell short of my goal of finding employment, etc., and returned home a month later. Been here ever since. But, my dream of moving "somewhere warmer" (as Jodee Messina states in one of her songs) is still alive and well .

Take care...peace...always,
Cort S, pig's valve & pacemaker-enhanced 29/swm
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[Anne-Marie]

You've come to the right place. I found this forum and read as much as possible prior to my surgery apr.24. (AVR). I was terrified at the thought of having heart surgery, but by the time I went in for the surgery, I knew what to expect and was extremely calm and relaxed and ready to deal with whatever came my way. Everything went well. I know this forum made the difference for me!

Stay and read read read! Oh, and spend money and spoil yourself, that helps too.