S
Susan BAV
michellep said:
A first grade teacher with a great sense of humor -- that's how it ought to be!
Help Support Valve Replacement Forums:
A first grade teacher with a great sense of humor -- that's how it ought to be!
This one doesn't get blamed on pumphead. Just lack of time and slow writing. I've stopped blaming things on pumphead, because everyone keeps pointing out that I was like this before the OHS...
You do need to prepare hubby, as you won't be driving anywhere, picking up after the kids, sweeping or mopping, buying groceries (not even carrying a gallon of milk), doing laundry, shoveling snow, splitting firewood, carrying an umbrella, riding a bike, throwing any kind of ball, or washing windows or dishes for a month or so after the surgery, while your rib cage heals. It's not that your sternum will be in pain all that time, but the breastbone requires time without bearing weight to heal properly, or it may cause you pain for many years from misalignment.
Generally, the back-to-work expectation from short-term disability insurors is six to eight weeks. Don't cheat yourself on it, as you will be surprised how much it will take out of you to go back. Few people realize exactly how much stress work places on them.
To reiterate one thing I had said in that earlier, unending diatribe: I hope you are being checked for aortic dilation/aneurysms (besides the root). You can have a CAT scan done, as MrP pointed out. Or you can have an MRI contrast done that will also show it quite well without radiation. Either one is pretty quick and painless. I've had both at various times.
If you are set on the tissue valve, be aware that at your age, it likely means another such operation in a decade, and probably a third to get you to your mid-to-late seventies. Presumably, you're looking at an Edwards bovine pericardial valve, such as the Perimount Magna. The CEP bovine valves have the best track record for tissue valve longevity at this time. At your age, valve longevity is the paramount concern.
If there is something that shows up while they're there that causes them to require the use of a mechanical (pyrolytic carbon) valve, you should have a backup choice already made. My own suggestion would be the On-X carbon valve, which has a possibility of having a lower amount of anticoagulation requirement, perhaps even requiring just the use of aspirin. The lower ACT requirement is in trials now. Unfortunately, we won't know for certain for some time. You should discuss this possibility with your surgeon.
Best wishes,
You do need to prepare hubby, as you won't be driving anywhere, picking up after the kids, sweeping or mopping, buying groceries (not even carrying a gallon of milk), doing laundry, shoveling snow, splitting firewood, carrying an umbrella, riding a bike, throwing any kind of ball, or washing windows or dishes for a month or so after the surgery, while your rib cage heals. It's not that your sternum will be in pain all that time, but the breastbone requires time without bearing weight to heal properly, or it may cause you pain for many years from misalignment.
Generally, the back-to-work expectation from short-term disability insurors is six to eight weeks. Don't cheat yourself on it, as you will be surprised how much it will take out of you to go back. Few people realize exactly how much stress work places on them.
To reiterate one thing I had said in that earlier, unending diatribe: I hope you are being checked for aortic dilation/aneurysms (besides the root). You can have a CAT scan done, as MrP pointed out. Or you can have an MRI contrast done that will also show it quite well without radiation. Either one is pretty quick and painless. I've had both at various times.
If you are set on the tissue valve, be aware that at your age, it likely means another such operation in a decade, and probably a third to get you to your mid-to-late seventies. Presumably, you're looking at an Edwards bovine pericardial valve, such as the Perimount Magna. The CEP bovine valves have the best track record for tissue valve longevity at this time. At your age, valve longevity is the paramount concern.
If there is something that shows up while they're there that causes them to require the use of a mechanical (pyrolytic carbon) valve, you should have a backup choice already made. My own suggestion would be the On-X carbon valve, which has a possibility of having a lower amount of anticoagulation requirement, perhaps even requiring just the use of aspirin. The lower ACT requirement is in trials now. Unfortunately, we won't know for certain for some time. You should discuss this possibility with your surgeon.
Best wishes,
michellep said:
Hi Michelle,
Glad you have got your surgery date. I'm not quite there yet so can only imagine all the thoughts/feelings etc. that you must be going through. Will be keeping you in my prayers -Jeanne
M
michellep
Boy, I guess I still have alot to learn.
Ross, doesn't coumadin require monthly checks and constant maintance. Would being on coumadin limit my ablility to go water skiing and hiking/scrambling and other mid-level risk activities? All of the women in my family have had to get hysterectomies due to endometriosis in their forties, so that is also a possibility for me in the future.
Bob H, I have my second opinion on Tuesday and see my regular cardio. on Friday. I will request an MRI to be done prior to surgery so that I don't have to go through this again.
Thanks guys. I feel like I have big brothers looking out for me.
Ross, doesn't coumadin require monthly checks and constant maintance. Would being on coumadin limit my ablility to go water skiing and hiking/scrambling and other mid-level risk activities? All of the women in my family have had to get hysterectomies due to endometriosis in their forties, so that is also a possibility for me in the future.
Bob H, I have my second opinion on Tuesday and see my regular cardio. on Friday. I will request an MRI to be done prior to surgery so that I don't have to go through this again.
Thanks guys. I feel like I have big brothers looking out for me.
M
michellep
Oops...an MRI or a CAT...
M
michellep
The Bicuspid Aortic Foundation's website is terrific! I went back over my two echos and found that my aortic root is 3.9 cm (norm is 2.0-3.7). It was 3.1 on 12/5. And is was cited that my ascending aorta is "mildly dialated" on 12/5 and on 12/26. I will definately get this checked on Tuesday.
Ross
Well-known member
michellep said:Boy, I guess I still have alot to learn.
Ross, doesn't coumadin require monthly checks and constant maintance. Would being on coumadin limit my ablility to go water skiing and hiking/scrambling and other mid-level risk activities? All of the women in my family have had to get hysterectomies due to endometriosis in their forties, so that is also a possibility for me in the future.
Bob H, I have my second opinion on Tuesday and see my regular cardio. on Friday. I will request an MRI to be done prior to surgery so that I don't have to go through this again.
Thanks guys. I feel like I have big brothers looking out for me.
Yes you'd require monitoring to keep you in range, but for the most part, there is no reason you couldn't do pretty much everything you' ve always done, just use common sense in protecting your noggin. Now sword fighting might be something to stop and think seriously about or something of that nature, but you can enjoy life all the same.
One thing I would consider a drawback is the endometriosis. That could be a problem. Not necessarily, but could be.
StretchL
Well-known member
The Old Debate
The Old Debate
Hi, Michelle.
Take good care as you're entering deep and contentious waters. One of the first things I learned on VR.com is that the coumadin/no-coumadin debate is a heated and touchy subject here. Those who do coumadin will strongly emphasize that it's no problem for them; those of us who chose not to do coumadin (as a result of a tissue valve or Ross Procedure) feel just as strongly that we're more healthy now (and, more importantly, will be more healthy as we age and face various other medical procedures) staying away from it.
[Donning my flaming arrow proof vest now...]
During the months I spent researching my AVR, I found several surgeons who believe that, for a man my age, the risks of life-long anti-coagulation for a mechanical valve are greater than the risks of re-operation to replace a tissue valve in an otherwise healthy individual.
You might be considered a bit young for a tissue valve. If you're otherwise healthy, I'd be curious about your suitability for the Ross Procedure. In the hands of the right surgeon, the Ross has about an 85% chance of freedom from re-op at 20 years. Better than a tissue while still avoiding coumadin.
I have posted a lot of what I came across during my research at http://stretchphotography.com/avr Most of it deals with the Ross Procedure, which I elected to have, but some also deals strictly with valve choice. These two documents should be of particular interest: http://www.stretchphotography.com/avr/PetterssonOnOptimalOp2002.pdf and http://www.stretchphotography.com/avr/CClinicChoosingValve.pdf
The Old Debate
Hi, Michelle.
michellep said:
Take good care as you're entering deep and contentious waters. One of the first things I learned on VR.com is that the coumadin/no-coumadin debate is a heated and touchy subject here. Those who do coumadin will strongly emphasize that it's no problem for them; those of us who chose not to do coumadin (as a result of a tissue valve or Ross Procedure) feel just as strongly that we're more healthy now (and, more importantly, will be more healthy as we age and face various other medical procedures) staying away from it.
[Donning my flaming arrow proof vest now...]
During the months I spent researching my AVR, I found several surgeons who believe that, for a man my age, the risks of life-long anti-coagulation for a mechanical valve are greater than the risks of re-operation to replace a tissue valve in an otherwise healthy individual.
You might be considered a bit young for a tissue valve. If you're otherwise healthy, I'd be curious about your suitability for the Ross Procedure. In the hands of the right surgeon, the Ross has about an 85% chance of freedom from re-op at 20 years. Better than a tissue while still avoiding coumadin.
I have posted a lot of what I came across during my research at http://stretchphotography.com/avr Most of it deals with the Ross Procedure, which I elected to have, but some also deals strictly with valve choice. These two documents should be of particular interest: http://www.stretchphotography.com/avr/PetterssonOnOptimalOp2002.pdf and http://www.stretchphotography.com/avr/CClinicChoosingValve.pdf
M
michellep
What! No sword fighting! Well, forget it then!
K
Karlynn
tobagotwo said:
This brought to mind something I really have never forgotten. Part of my discharge orders were to not do any upper body exercise. About 2 weeks afte my OHS my husband did the laundry (sorted, washed and dried) and put it in baskets. He kindly brought them to me to fold, knowing that I shouldn't be lifting them. So I folded them. The next day I could hardly move my upper body due to pain. I had not considered folding laundry an upper body exercise - but I guess I'd been getting a good workout all those years without realizing it.
Sadly - the "no upper body exercise" restrictions have not lasted 15 years (much less a month).Michelle - check out the link I posted for you which directs you to the active lifestyles forum. Also take a look at Mtkayak's photos if he still has them in his posts. His white water kayaking would surprise many in the medical community who think you must be a couch potato if you take Coumadin. The only reason I provided the link is to help assuage your fears in the remote chance they decide during your OHS that a mechanical would be better. I wouldn't want you waking up and thinking your life had changed for the worse.
S
Susan BAV
StretchL said:
That's a good reminder...
M
michellep
I never would want to begin a large debate that could end in war. I apreciate everyone's opinion and will continue reading as much as possible on all of my options. So much, so little time...
K
Karlynn
michellep said:
I think we're still in too much of a Holiday Spirit to have a go at it.
But when we do, we almost always kiss and make-up. Valve choice can be a hot issue, but we all agree that the only bad choice is to not have the surgery.And speaking of frightened husbands.... I've dealt with the knowledge and effects of my mitral valve problems since shortly after my marriage at the age of 22 when the issue was diagnosed. I didn't start having problems until I was 27, during the pregnancy with our daughter. Had my replacement at age 32, as I already told you. I just turned 48. Through all this time, my husband has made it a practice to take a lot of trips on the river D-Nile.
He's there for support when I really need him to be, but he would just as soon think I have no valve issues. 98% of the time, he's able to do that. (And this "family" here has really taken a lot of the pressure off of him!)His sister likes to tell the story of him taking her to the CICU to see me a few hours after my surgery. I had tubes coming from everywhere and was rather blue due to having my body cooled down during surgery and the pump. He said to her "Doesn't she look great!" and she burst into tears because she said it looked like I was almost dead. He didn't even react to her tears, just stood there with a smile on his face.
You may want to prepare your husband for the fact that you may look a little scary right after surgery. But if they tell him you're doing fine, he needs to believe that they know what they're talking about. They won't tell him anything that's not true. (My husband's sister was just sure they were lying to him when they said I was doing fine.)
You'll do great. It was a perfected surgery when I had mine 15 years ago, and they've just continued to improve upon it. You'll look back a year from now and will hardly be able to believe a year has passed and that, best of all, life is so normal.
StretchL
Well-known member
Karlynn said:
THAT's the line I had in mind that I forgot to include! DOH!
K
Karlynn
StretchL said:
Take a lesson from Bob - use the Pump Head excuse while you can!
ALCapshaw2
Well-known member
I'm sure you've got more to read than time to do it Michele so I'll limit this post to second the recommendation to have a Second Valve Choice in mind before going in for surgery.
After considerable discussion with respected physicians and reading the pro's and con's of Tissue vs. Mechanical, I decided I would like to have a Bovine Pericardial Tissue Valve from Carpentier-Edwards. My surgeon agreed to this wish and all was set, or so I thought.
When I came to, the first thing my surgeon said to me was that he implanted a St. Jude Mechanical Valve (which of course meant Coumadin for Life). My family was in tears.
Then he said, "and I don't think you would survive a third surgery". You can imagine how I feel about facing a third surgery now that my Mitral Valve is barely functioning! (The concensus is that surgeon #2 meant that he didn't think I would survive having my Aortic Valve replaced and that is why he implanted a mechanical valve with excellent durability).
Severe scaring from Radiation Threatments decades ago fried my heart and is responsible for most of my heart issues. The point of my story is that the surgeon can't really know for sure what he will find until he gets in there, hence the value of expressing your second choice in advance.
FWIW, day to day living on Coumadin has not been much of a problem (except when my 50 lb. puppy pulled me into a tree, or the BP Cuff Maxed out during my last hospital stay).
I was VERY concerned about having other invasive procedures due to the necessity of going off Coumadin briefly for the procedure (a.k.a. Bridging Therapy) which has proven to be much less of an issue than I feared. I've had a colonoscopy, upper endoscopy, and yep, a heart cath since being on Coumadin, with NO problems from any of the procedures. (I actually fell asleep for 15 minutes during the Cath!
That said, I'm VERY impressed with the third generation On-X pryolitic carbon mechanical valve and have informed the surgeon I selected for my MVR that is my first choice, followed by another St. Jude Mechanical Valve if the On-X is not viable.
(See www.onxvalves.com for info and contact info).
(See www.warfarinfo.com for everything you will ever want to know about living with Coumadin)
Sorry for the information overload.
'AL Capshaw'
After considerable discussion with respected physicians and reading the pro's and con's of Tissue vs. Mechanical, I decided I would like to have a Bovine Pericardial Tissue Valve from Carpentier-Edwards. My surgeon agreed to this wish and all was set, or so I thought.
When I came to, the first thing my surgeon said to me was that he implanted a St. Jude Mechanical Valve (which of course meant Coumadin for Life). My family was in tears.
Then he said, "and I don't think you would survive a third surgery". You can imagine how I feel about facing a third surgery now that my Mitral Valve is barely functioning! (The concensus is that surgeon #2 meant that he didn't think I would survive having my Aortic Valve replaced and that is why he implanted a mechanical valve with excellent durability).
Severe scaring from Radiation Threatments decades ago fried my heart and is responsible for most of my heart issues. The point of my story is that the surgeon can't really know for sure what he will find until he gets in there, hence the value of expressing your second choice in advance.
FWIW, day to day living on Coumadin has not been much of a problem (except when my 50 lb. puppy pulled me into a tree, or the BP Cuff Maxed out during my last hospital stay).
I was VERY concerned about having other invasive procedures due to the necessity of going off Coumadin briefly for the procedure (a.k.a. Bridging Therapy) which has proven to be much less of an issue than I feared. I've had a colonoscopy, upper endoscopy, and yep, a heart cath since being on Coumadin, with NO problems from any of the procedures. (I actually fell asleep for 15 minutes during the Cath!
That said, I'm VERY impressed with the third generation On-X pryolitic carbon mechanical valve and have informed the surgeon I selected for my MVR that is my first choice, followed by another St. Jude Mechanical Valve if the On-X is not viable.
(See www.onxvalves.com for info and contact info).
(See www.warfarinfo.com for everything you will ever want to know about living with Coumadin)
Sorry for the information overload.
'AL Capshaw'
marciemarine
Well-known member
I have a different story with valve problems. I was 43 years old and felt pretty healthy when I went in for my annual physical. The nurse practitioner told me that I had a heart murmer, but she thought I already knew that. I told her no, and that I had a murmer when I was young which they said was "functional" and that I would out grow it. When was 14 I was told that I had outgrown it and no one had heard it until then when I was 43. She referred me to internal medicine at our military clinic (my husband was in the Air Force) where they did an echo cardiogram and they found that I had mild aortic stenosis. I then was referred to an off base cardiologist who said that I must have had rhuematic fever when I was young. This came as a shock since I don't remember that, but he told me that it sometimes disguised itself as a bad sore throat. Anyway I went to the cardiokogist every six months since and have had a group of tests and the last time I went in October, I was told that I had gotten worse and my aortic stenosis had gotten severe
and the mitral stenosis which was mild was now moderate.
So, I was scheduled for a catheterization and was operated on November 1st.
I now have two mechanical valves and am feeling pretty good. I was surprised in October because I wasn't aware that the situation was getting bad - it seemed the symptoms were gradual and I just thought I was getting tired due to age (I'm now 53.)
Good luck to you! I trust all will go well and I hope you'll be back home with your family promptly!
Marcie
and the mitral stenosis which was mild was now moderate.
So, I was scheduled for a catheterization and was operated on November 1st.
I now have two mechanical valves and am feeling pretty good. I was surprised in October because I wasn't aware that the situation was getting bad - it seemed the symptoms were gradual and I just thought I was getting tired due to age (I'm now 53.)
Good luck to you! I trust all will go well and I hope you'll be back home with your family promptly!
Marcie
N
nebtargh
Welcome
Welcome
hi Michelle,
You are in the best place to get through this. i was diagnosed with a severe mitral valve regurgitation about 2 years ago. I just had my surgery about 6 weeks ago, and let me tell you it was the best thing I ever did. i am 42 years old with 4 boys. Ages 7,4,3,& 1.5. I thought this was the end. I had no symptoms and was very healthy, but my heart was sick. I pondered about getting the surgery many many nights. This web site help me make my decision because there are people here that understand what you are going through. I listened to them and just did it. Believe me you will not be sorry if you decide to get the surgery sooner than later. MY regurg was severe, but like I said I had no symptoms. Talk to your doctor. weigh your options, and then just read, read and read what all these great people say. Remember sooner is better than later. I was told I had 2 options. Get the surgery now, or die later. Remember once the symptoms start then you may have irreversible damage. You don't want that. Well take care and good luck to you.
Al
Welcome
hi Michelle,
You are in the best place to get through this. i was diagnosed with a severe mitral valve regurgitation about 2 years ago. I just had my surgery about 6 weeks ago, and let me tell you it was the best thing I ever did. i am 42 years old with 4 boys. Ages 7,4,3,& 1.5. I thought this was the end. I had no symptoms and was very healthy, but my heart was sick. I pondered about getting the surgery many many nights. This web site help me make my decision because there are people here that understand what you are going through. I listened to them and just did it. Believe me you will not be sorry if you decide to get the surgery sooner than later. MY regurg was severe, but like I said I had no symptoms. Talk to your doctor. weigh your options, and then just read, read and read what all these great people say. Remember sooner is better than later. I was told I had 2 options. Get the surgery now, or die later. Remember once the symptoms start then you may have irreversible damage. You don't want that. Well take care and good luck to you.
Al
R
ruth
OMG - Karlynn - Your laundry story is *exactly* what would happen here in my home. Geez, live & learn, huh, I would never have thought of folding laundry as a form of 'exercise'. Still, I know we need to get up & at 'em to recover fully so your folding episode likely was good in some ways. Quite the upper body workout, huh, yeah, I should be back bench pressing 6 folded shirts and 5 pairs of pants in no time!
nebtargh - Al - Hi, another local D.C.'er! Glad you've had such a wonderful outcome, my gosh, with 4 young boys how do you *ever* get any rest?
Michelle, I'm still giggling to myself about how you "can't" have a mechanical valve because then you wouldn't be able to sneak up on the 6 year olds since they could hear you coming! LOL I can imagine the cardiologist's reaction! Just too funny!
nebtargh - Al - Hi, another local D.C.'er! Glad you've had such a wonderful outcome, my gosh, with 4 young boys how do you *ever* get any rest?
Michelle, I'm still giggling to myself about how you "can't" have a mechanical valve because then you wouldn't be able to sneak up on the 6 year olds since they could hear you coming! LOL I can imagine the cardiologist's reaction!
Just too funny! 
Marguerite53
Premium Level User
Due to the holidays and 3 college children coming home (one who almost didn't make it in time for Christmas as she was stuck in Denver for 4 days ) I have completley missed out on this wonderful thread until now!!
Michelle! You sound great! No foolin'. You are level-headed, positive...know just where your thinking cap is kind of girl! You will do FINE!!
You have received a wonderful collection of wisdom and anecdote here and it sounds like you are absorbing things very very well.
I had so many reactions to so many comments.....I'll be brief and just zone in on 2.
#1. The husband in denial. Yes. They are scared. Very scared. And the CICU will scare them. (Karlynn...I suspect your husband is unique! ) My husband still can't get over how flat they had me looking (taught sheets, I guess). For the longest time, he simply would not talk about any of it to me. And I was curious!! I barely remember a thing about my short stay in CICU. We are lucky, I think, that we don't have to see ourselves. So be gentle with him. He can't be processing things as well as you because he has no curiosity....just fear!
#2. You are a teacher. You are a mother. You are a wife. You probalby have everyone on your radar screen but yourself. For the rest of the time prior to your surgery and for the first month of recovery, I am going to ask you to learn a new skill....put yourself first. At this time, nothing is as important as you. Now, if you need to do things for others for YOU, that is acceptable, of course. But if you are in a quandry as to whether to act for your students, or spend the precious little time you have pre-surgery to satisfactorily understand and completely grasp what your choices are.....you have got to put those students aside. They will be fine!!
Read, read, read....ask, ask, ask. Listen to your gut. Listen to your professionals. Be confident in your decision. Smile and hug and look around at your wonderful world a lot. This joy is the most important thing to pack in your suitcase.
We're all here for you. This place is amazing. My friends here carried me through and we will carry you, too!!
Marguerite
) I have completley missed out on this wonderful thread until now!!Michelle! You sound great! No foolin'. You are level-headed, positive...know just where your thinking cap is kind of girl! You will do FINE!!
You have received a wonderful collection of wisdom and anecdote here and it sounds like you are absorbing things very very well.
I had so many reactions to so many comments.....I'll be brief and just zone in on 2.
#1. The husband in denial. Yes. They are scared. Very scared. And the CICU will scare them. (Karlynn...I suspect your husband is unique!
) My husband still can't get over how flat they had me looking (taught sheets, I guess). For the longest time, he simply would not talk about any of it to me. And I was curious!! I barely remember a thing about my short stay in CICU. We are lucky, I think, that we don't have to see ourselves. So be gentle with him. He can't be processing things as well as you because he has no curiosity....just fear!#2. You are a teacher. You are a mother. You are a wife. You probalby have everyone on your radar screen but yourself. For the rest of the time prior to your surgery and for the first month of recovery, I am going to ask you to learn a new skill....put yourself first. At this time, nothing is as important as you. Now, if you need to do things for others for YOU, that is acceptable, of course. But if you are in a quandry as to whether to act for your students, or spend the precious little time you have pre-surgery to satisfactorily understand and completely grasp what your choices are.....you have got to put those students aside. They will be fine!!
Read, read, read....ask, ask, ask. Listen to your gut. Listen to your professionals. Be confident in your decision. Smile and hug and look around at your wonderful world a lot. This joy is the most important thing to pack in your suitcase.
We're all here for you. This place is amazing. My friends here carried me through and we will carry you, too!!
Marguerite
