New to valvereplacement.com

[dj/utvolsfan]

Hey, I am DJ from West Virginia. I am 49 years and contracted Rheumatic Fever as an adult about 15 years ago. In the meantime, I have developed Rheumatic Heart Disease and found out this week that I need both my mitral and aorta valve replaced asap. I guess I am at the very beginning of this crazy game. Right now I am waiting for the call from the surgeon's office regarding my actual surgery date. I have a TEE scheduled for the 4th of August.
I am a teacher on summer break so I am really hoping to get the ball rolling. I am single, three kids in college - 2 in state and one out of state - which is another reason I would like to get the surgery part behind me while they are still here to help out. I would love to be able to send them back to school with any doubts erased about their mama's heart health.
I have so many questions, I hardly know where to begin. I am pretty much scared half out of my wits. I have questions about weight loss cause goodness knows, I need to lose about 60 pounds. My weight gain and lack of energy have kept me in a state of constant frustration and depression. Will I feel alot better? Will I get my energy back? Will I be able to play tennis again? Will hills no longer challenge me to the point where I decline walking cause I don't want to be a burden on my healthy and fit walking friends, daughters? How long will I need others around to help? What kind of help will I need? I am wondering when I will be able to go back to work? I don't want to be one of those 'sit behind the desk' kind of teachers. Will I have the energy required for teaching learning disabled 7th graders? Goodness, my head is spinning. This is just the tip of the iceberg when it comes to questions. I am exhausted so I can only imagine you guys are too.
If anyone has the ability to write back, please feel free. I will be easy on you and hold back bombarding you with thousands of more questions.
Thanks again for this wonderful site.

 

[twinmaker]

Hi DJ, My name is Linda but I'm known on the site as twinmaker. I'm 52 years ole and I too had Rheumatic Fever, only mine was undiagnosed until my early twenties. The doctors told me that I had had it sometime in my childhood or teenage years and probably didn't know it, but it caused the damage anyway. I know how scared you are right now, but believe me, this is a wonderful site with a lot of wonderful, knowledgeable people just waiting to share their experiences and to help you through this time. I know how you feel about being tired and not being able to keep up. I had those symptoms in my early 20's...couldn't ride my bike, walk up stairs, or make a bed without getting out of breath. Those were all signs that something was wrong. Anyway, long story-short, I had a mitral commissurotomy (where they removed calcifications from the mitral valve) when I was 22 (1974). Then the mitral valve had to be replaced when I was 29 (1981). Between 1974 and 1981, my husband and I had children (a girl and twin boys). I have had the same valve (St. Jude mechanical) since 1981 and it is still working GREAT! I was one of the first group of people to get the St. Jude as it hadn't been approved by the FDA back in 1981. When I got the valve, my children were ages 5 and 3. My mom came and stayed for about 3-4 weeks after my surgery and then I was pretty much on my own. My husband traveled a lot with his career. My point in telling you this is that you will feel much better after you have the surgery and recover. I still play tennis, ride my bike, swim, and anything else I want to do. I know how you feel, having this problem and having children, even though yours are a little older than mine at the time of surgery, but they will be a great source of help for you, both physically and emotionally. They help keep you going, right? I probably haven't answered all of your questions, so please let me or the rest of the group know what else we can tell you to help you through this. Linda

 

[tobagotwo]

DJ, welcome aboard.

Of course losing weight will help with both the surgery and recovery. However, not all of us valvers are svelte to begin with (or afterwards), so don't go into panic mode. Try to work on it before surgery, as it can make the surgery easier and actually improve your odds slightly. I won't belabor it further. I know it's doubly difficult to do under stress and when you feel so constantly tired.

As far as playing tennis, once your sternum and heart are healed, you should be able to do almost anything you condition yourself for. Depending on the condition of the rest of your heart, your doctor may suggest restrictions that you should consider. After some recovery time, you should feel much less fatigue, and any chest pain should diminish greatly or go away. Heavy weightlifting is usually discouraged, but many of us don't find that to be a big problem.

However, even after surgery, I find that I still can't play the piano. Guess I'll have to go for the lessons after all.

If they are already sure that you are ready for surgery, I am curious as to why they would want to subject you to a TEE, which is usually used for second-guessing or trying to produce a more exact view of a valve's operation. You will almost certainly be expected to have a catheter angiogram (often the day before surgery), and that is more than sufficient to verify the diagnosis. I would make them come up with a real justification for the TEE (i.e., not "just to be sure," or "we always do that."). Unless there's something else specific they need to see, once they've decided valves need replacement, a micrometer measurement this way or that of the valves to be removed is of questionable value.

Ask questions, and people here will try to help with answers. Read posts from others who are about to go through the surgery, so that you can pick up pointers from responses to their queries. Use the VR.com search facility to look at past threads. Bask in the companionship: the people here have either gone through something very similar to you, are in the same place as you are now, or have a significant other going through it. We each understand this journey in a very personal way.

Best wishes,

 

[jayaresq]

Welcome DJ

Welcome DJ

Hi. I'm Jim. I'm also a relative newcomer -- both to this site and to the world of heart surgery. No doubt you have a gazillion questions about everything. I did and still do, too. This is just about the best site for answering all of your questions and concerns -- by the people who live and feel the same things you do. I had plenty of sleepless nights leading up to my surgery. I spent a lot of that time reading the histories, posts and dialogues on this site and found many of the information and answers I was searching for here. I strongly urge you to do the same.

As far as your foremost concerns, I'd like to be among the first to reassure you that you will indeed feel better, you will improve your health, and you will (if you set your mind to) attack those hills walking in no time.

You will also have some time ahead to sit back and enjoy what promises to be a very promising UT football season. One magazine I read projected the Vols challenging USC in the BCS Championship game this January.

Welcome and good luck in all. -- Jim

 

[rbl1999]

Hi, my name is Rose and I just had aorta valve replacement a week ago today. Everyone so far is correct, this site is where I got the best information when I was diagnosed last November. I also agree with why you would need a tee. I went for a regular echo and cardiac follow up and was admitted the next day for cardiac cath and surgery the day after. I am also looking forward to feeling well and doing things that I had figured I could no longer do because I was getting older!!!!! Two things I have already noticed, my nails are VERY pink and my eyes VERY white!!!!Do lots of research on this site, I still find new things every day!!!! All the best to you.

 

[bvdr]

Welcome DJ!

First of all, my cardiologist and also my surgeon said that gaining weight as a rheumatic valve starts to deteriorate is very very common and not to beat yourself up over it. It made ME feel a little better about it anyhow .

My energy level improved with MVR within just a few weeks but I have not gotten to the place I would like to be yet. I had a few set-backs from other causes but now hope to reach that level.

I don't like to give too much advise but I'm just a little concerned that you might not be scheduling in enough recovery time. When does your school year start? If you have the surgery in early or mid August then I would say you would have to plan on a minimum of 6-8 weeks before resuming a full schedule. We have several teachers here and they will chime in soon. I'm sure there are those who feel up to it earlier but don't plan on it. Naps feel real good for quite a while.

Tennis later? Of course you can expect that .

Again, welcome to this on-line family.

 

[dj/utvolsfan]

Thanks

Thanks

Hey there,
Thanks for the words of encouragement. I really do appreciate this website so much. It is exactly what the doctor ordered!! Who else to talk to but real live folks such as yourself who have climbed the mountain before me! I had somewhat of a little setback a minute ago. My cardio's secretary called to tell me that I HAVE to have the TEE on August 4th before we can go ahead and schedule the surgery. I was really hoping to get this scheduled sooner than later.
I think I just need to take it easy and use these days to get some exercise, lose some weight if possible, and regroup prior to surgery. I just can't imagine going back to school feeling the way I do now. We don't go back until the 23rd of August. I have been a member of my County Board of Ed's sick bank for 18 years now having given a day of my vacation each year so if I need more time than 6 to 8 weeks I will be able to take the days. I am thinking out loud here but I am guessing that it will be sometime toward the end of October before I would return to school whichi means that within a nother few weeks I would have another week off for Thanksgiving. followed by two more weeks in December for Christmas. Surely by then I will be feeling absolutely wonderfully renewed!!!
I have felt encouraged by the words of your cardio and surgeon regarding weight gain associated with rheumatic heart disease. I have had significant periods of time when I have been able to exercise consistenly and lose some weight, but it seems that if I have anything else on my plate which requires energy, I have to put the exercise on the back burner. Maybe these are excuses, but it is just what I have noticed about myself.
Thanks again for the nice welcome. Best of luck to you as well!
Debbi

Welcome DJ!

First of all, my cardiologist and also my surgeon said that gaining weight as a rheumatic valve starts to deteriorate is very very common and not to beat yourself up over it. It made ME feel a little better about it anyhow .

My energy level improved with MVR within just a few weeks but I have not gotten to the place I would like to be yet. I had a few set-backs from other causes but now hope to reach that level.

I don't like to give too much advise but I'm just a little concerned that you might not be scheduling in enough recovery time. When does your school year start? If you have the surgery in early or mid August then I would say you would have to plan on a minimum of 6-8 weeks before resuming a full schedule. We have several teachers here and they will chime in soon. I'm sure there are those who feel up to it earlier but don't plan on it. Naps feel real good for quite a while.

Tennis later? Of course you can expect that .

Again, welcome to this on-line family.

 

[Cris N]

DJ,
Welcome to the site and don't feel bashful about asking questions. You're lucky in that you found this place before your surgery and can have some of those questions answered... I didn't make the discovery until after surgery and did a lot of catching up.

In addition to taking a proper amount of time off for recovery - considering your job ... with three kids of college age, you probably realize that you take a little longer to heal than they do. You really want to have a goodly amount of energy for 7th graders!

Since your kids will be away at school for part of your recovery, I hope that you either have other family members who can help you, or some friends who'll ask if there's anything they can do. Yes there is... help with laundry, vacuuming, shopping, driving you for dr appt or other errands - the list goes on - including just sitting & talking when you're having a bad day. Take advantage of their generosity... they will feel needed and you will feel better.

If you have the opportunity to go to cardiac rehab, do it... best thing I've done for myself in a long time (except for getting a $$$$ valve!)

Be prepared for the fact that OHS is a major assault on your body and that it needs a lot of TLC to get better. You already know that you have found a wonderful place to get answers & support pre-surgery - it's even better post-surgery when you have a multitude of questions about the healing process.

About the weight loss... I chided my surgeon for not performing some liposuction as long as things were so accessible... he said he was pretty busy doing the valve thing

And yes%2, tennis is most likely in your future. I've already been on the golf course

I'll be praying for you - right now to ease your anxiety and later for you & the surgical crew. Do keep us posted on your schedule.

Cris

 

[dj/utvolsfan]

Thanks Cris!

Thanks Cris!

I feel like I walk away from the computer, do some cleaning, cooking, whatever and then bam, I walk by the computer and find myself doing more research. Knowledge is a good thing, right?! I was getting on here just now to ask about Cardio Rehab and I was happy to see your mesage. I am curious as to what all is involved, how many times a week, for how long, etc. I am assuming most insurance plans pay for most of therapy??
I have a few very close friends who are already scheduling with each other to make sure I am going to be ok...post op. They are letting my family do the surgery and hospital deal and they are going to be here when I come home. My kids are my only family here in WV for right now. The rest have gotten smart and live out of state. Everyone is coming in for it. Just knowing that makes me realize EVEN MORE SO how serious this surgery is. I'll be ok. At least that is what all you guys out there say!!
My kids don't seem to be talking much about it. We are really close and I think it worries them just a bit more than they let on. Or who knows? Maybe they just don't care. Just kidding. The toughest part I think for me right now is not having a significant other. I like being independent but geez, it would be nice to have someone to lean on. I have to say this website offers emotional support which is very much needed. A hug would be nice though. Did any of you peoples out there find yourself crying at the drop of a hat? when I came home from my appt and leaned on my son and pretty much fell apart, but have tried to keep the rest of the weepy stuff to myself. My son was really grasping at straws. Funny to hear him say, hey, this is great. You can be a new woman, two valves for the price of one surgery, plus the real perk of losing weight, etc. One of his 19 year old buddies had this surgery done last summer and lost about 42 pounds in 8 weeks. This guy was a pip squeak to begin with.
Well, I am rambling. Sorry. Again, thanks for the support. Much appreciated. Debbi
Welcome to the site and don't feel bashful about asking questions. You're lucky in that you found this place before your surgery and can have some of those questions answered... I didn't make the discovery until after surgery and did a lot of catching up.

In addition to taking a proper amount of time off for recovery - considering your job ... with three kids of college age, you probably realize that you take a little longer to heal than they do. You really want to have a goodly amount of energy for 7th graders!

Since your kids will be away at school for part of your recovery, I hope that you either have other family members who can help you, or some friends who'll ask if there's anything they can do. Yes there is... help with laundry, vacuuming, shopping, driving you for dr appt or other errands - the list goes on - including just sitting & talking when you're having a bad day. Take advantage of their generosity... they will feel needed and you will feel better.

If you have the opportunity to go to cardiac rehab, do it... best thing I've done for myself in a long time (except for getting a $$$$ valve!)

Be prepared for the fact that OHS is a major assault on your body and that it needs a lot of TLC to get better. You already know that you have found a wonderful place to get answers & support pre-surgery - it's even better post-surgery when you have a multitude of questions about the healing process.

About the weight loss... I chided my surgeon for not performing some liposuction as long as things were so accessible... he said he was pretty busy doing the valve thing

And yes%2, tennis is most likely in your future. I've already been on the golf course

I'll be praying for you - right now to ease your anxiety and later for you & the surgical crew. Do keep us posted on your schedule.

Cris[/QUOTE]

 

[bvdr]

" Did any of you peoples out there find yourself crying at the drop of a hat? when I came home from my appt and leaned on my son and pretty much fell apart, but have tried to keep the rest of the weepy stuff to myself. "

Hey, we send cyber-hugs all the time around here! I do remember shaking when hanging up the phone after setting up my surgery date with the scheduler. The whole thing was handled almost as if she was scheduling a hair appointment. After hanging up the phone I sobbed for a few minutes. The whole thing had become a reality.

I thought I was going to have both my mitral and aortic valve replaced but I only needed the mitral done at that time. Since, there have been some, actually much, discussion on why the aortic valve wasn't also done while I was open. If I have to eventually have it done I would have preferred to have done it then rather than in a seperate surgery. Just my feelings on it.

 

[Cris N]

I think if I had been facing the possibility of a second valve repair/replacement I would have wanted it dons at the same time... hate to have to go through this surgery more than necessary.

Very happy to hear that you've got friends to help post-surgery. Your main function in life at that point will be to eat, sleep, breathe, walk.

Not uncommon for the kids not to talk about it - they are probably pretty scared and don't want you to know.

Cardiac rehab... My insurance co. authorized 8 weeks @3 times per week . (approx 1 hr. sessions). The way mine works is I go in, get on the scale, attach a radio heart monitor (4 leads), get my blood pressure taken. Our rehab has treadmills, two different sitting steppers, an airdyne bike, and weights. I have yet to see anyone use the bike. I usually spend 20-30 minutes on treadmill, 20 minutes on stepper, 8 minutes or so on weights & stretching exercises. Then it's back to get my blood pressure taken again and I'm done. Take a water bottle!

As far as the crying at the drop of a hat... my surgery came really fast - I really didn't have much time to get upset, but I was actually quite calm about it. Things fell into place quite nicely for me...new job, exceptional insurance that I felt that was 'someone' else at work for me. However, my crying occurred after my surgery, (about 2-3 weeks after I think) This depression is apparently quite common. Just knowing that it occurs will help you be prepared for it. I can only imagine what it must be like for you without a significant other. Mine was a Rock of Gibralter for me. He cooked for me, encouraged me, and comforted me when I cried. Pick your best friend and tell him or her that you'll need emotional support.

You're right, this surgery is serious. It definitely falls into the category of Major Surgery! But, it's also quite common. You have probably heard about what actually occurs during the surgery, once you realize what all is involved you can understand why it's so serious. Ask your surgeon how many (s)he has done. Do you know what kind of valves you'll be getting?

Keep in mind that every recovery is different, many of us here have experienced a setback or two, or three... I was discharged on the 6th day, and wound up back in the hospital for another 9 days after only 2 days home. 2 weeks later I thought I was certainly in major trouble - went to ER - had a classic panic attack, 2 weeks after that I went to ER again with breathing problem & pain - spent one night in hospital and left by 10:00 the next morning, went home, changed my clothes & went to work! Such are the adventures of OHS. But, I'm getting through it and I'm starting to feel much better. Life is good!

You'll get through this, lean on family, lean on friends and lean on the supportative people here. (We have big shoulders if you need one to cry on too)

Cris

 

[Georgia]

I didn't cry about this; I think I was beyond crying - straight to shock. I simply couldn't believe I was so sick.

The kids are probably afraid to talk about this with you because they think they'll fall apart. I've found that my kids were very much Queens of Denial about my major illnesses - at least around me. But I didn't need them home for help because my husband was here. I know they'd have been great helpers if I'd needed them.

It's really too late to worry about your weight prior to surgery (unless it's delayed for some reason). I suspect a lot of it is the result of slowing down due to your heart problems. I don't think you need to be worrying about something else just now; relax and treat yourself to some special times before surgery. Go shopping, find a recliner, buy some books or puzzles or whatever you enjoy, drink a little, have some GOOD meals - whatever will distract you from your worries.

And we're always here if you need to vent.

 

[rbl1999]

Hi, I am 9 days post op (AVR) and would like to reassure you that you are going thru (I believe) the most difficult time. When the surgeon told me it was time to go ahead, the first thing I felt was relief!!!! I was so tired of this consuming me and my life. I think everyone's concerns are different but yet basically the same. I have done pretty good since the surgery, it is tough but at least I know that I will once again be able to exercise and feel good about myself. All the little things and the details will work out. This is the first time in my life that I have actually taken time for myself and I think I like it!!!! All the best to you... Rose

 

[twinmaker]

My kids were very little when I had my second OHS and now our daughter is 29 and our twin boys are getting ready to turn 27, and they have basically watched their mom go through all the heart stuff. But I can still tell that they worry or think about it at times. That's certainly natural. And it's natural for moms to want to try and shield them from all this stuff, but I told them as soon as they were old enough that I would always be honest with them about what was going on and not hold anything back. That seemed to make them feel better. And remember that your children will see how much better you will feel after your surgery and recovery and will experience first hand what wonderful strides have been made in this area. I'm not trying to minimize things because I think most of us have had our ups and downs, but just try and take it a day at a time. We're here for you whenever you need us.

 

[TammyM]

Welcome, DJ. I am having surgery Monday morning, so I can't answer any questions yet! You are certainly at the right place though! This is a wonderful group of people and the more you visit, the more you will learn. I have been a bundle of nerves for weeks, but now just before surgery, I feel so much calmer and it is all because I now feel like I know what to expect. Take care of yourself and I will be back soon!
Prayers,
Tammy

 

[tobagotwo]

Tammy, please have someone post for you, so we know how you're doing. Since you've been around, you know how we worry...

Best wishes,

 

[geebee]

DJ,

Welcome. I am sure your head is spinning but you have come to the right place for answers.

I must say I agree with Bob in that, if they know you requre surgery, why do they need to do the TEE? You are probably too early on in this venture to be questioning too much but, remember, you have the right to question.

I am sure the surgeon will require a cardiac cath which will give them all the details they need for surgery. The TEE is really not needed unless your cardio is still unsure you need surgery or he is just trying to make some extra cash. You will find we all get a little cynical at times.

You should find that any activities you could do before you starting having symptoms, you will be able to do after surgery. It will take some time to get all your strength back but it will come back. You will probably find that you will lose a bit of weight after surgery but, if you can manage to lose some weight before surgery, your recovery should be easier. I would, however, not make that an absolute priority unless your doctors feel your weight is an issue. You will have a lot to consider and weight management may not be something that should take up too much time.

You should prepare to be out from work at least 8 weeks (12 if you can manage the time away). Your full recovery will take anywhere from 6 mos to 1 year. Everyone is a little different.

Please keep asking questions. We will help you through.

 

[labguides]

Teaching is exhausting. Give yourself enough time to recuperate before you return to work.

 

[dj/utvolsfan]

Why Tee??

Why Tee??

Hey Gina, Thanks for your response to my questions, etc. Sure can use some answers. When I saw my cardio doctor this past week,whether surgery was necessary was not a problem. The issue was how long could I put it off? My doctor wants to have the surgery scheduled now. I think I was stunned and did not want to face the facts, so I asked if there was anyway we could put it off til I lost weight or better yet, make it through the school year and schedule this replacement surgery early June, 06. That is when he mentioned doing the TEE...seems like for my benefit. However, when I called his office a couple of days later and said,"let's go ahead with surgery and skip the TEE, that is when his secretary told me he wanted to go ahead and go with the TEE. I don't know, my mind is so overwhelmed, I could be sending the wrong messages to my doctor.
Right now, I just want to feel better. I am so exhausted and have resigned myself to the fact that now is the time. I want to get my life back. The sooner the better.
I am so used to feeling so tired all the time. I come home from my school day and just crash. I can picture that happening if I go back to school too early. Teaching, if done right, takes so much mental and physical energy. Then add the emotional element that comes from teaching challenging kids, wow, I get tired just thinking about it. I really would love to be able to take 8 plus weeks off. We will see.
Have we heard how Tammy's surgery went? She has been on my mind all day. Hope all is well in her world. Sure hope you are doing good tonight Gina. Thanks again for your help.
Debbi
Welcome. I am sure your head is spinning but you have come to the right place for answers.

I must say I agree with Bob in that, if they know you requre surgery, why do they need to do the TEE? You are probably too early on in this venture to be questioning too much but, remember, you have the right to question.

I am sure the surgeon will require a cardiac cath which will give them all the details they need for surgery. The TEE is really not needed unless your cardio is still unsure you need surgery or he is just trying to make some extra cash. You will find we all get a little cynical at times.

You should find that any activities you could do before you starting having symptoms, you will be able to do after surgery. It will take some time to get all your strength back but it will come back. You will probably find that you will lose a bit of weight after surgery but, if you can manage to lose some weight before surgery, your recovery should be easier. I would, however, not make that an absolute priority unless your doctors feel your weight is an issue. You will have a lot to consider and weight management may not be something that should take up too much time.

You should prepare to be out from work at least 8 weeks (12 if you can manage the time away). Your full recovery will take anywhere from 6 mos to 1 year. Everyone is a little different.

Please keep asking questions. We will help you through.[/QUOTE]

 

[geebee]

Debbi,

Here's a "twilight zone" moment. I drove to North Carolina Friday morning and came back last night. Guess where we stopped for a late dinner? Yep, Hurricane, West Virginia.

It truly is a small world.