Glenda
Well-known member
Sherrylynn, I'm so sorry that you are feeling bad today. Maybe you over did during the Christmas season. Hugs and prayers are coming your way.
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S
Sherrylynn41
Your post gave me back the backbone I needed today
Your post gave me back the backbone I needed today
Thank you Rachel,
The past two days have taken a very emotional turn for me. This time around I seem to have to keep fighting dismal thoughts.
The cardio stated I had moderate-severe regurg. I irritate him because I make him explain details he doesn't think I notice on test results, he just pisses me off.
At this time I am going to read your posts and get some ideas on where I need to go from here.
Thanks for each and every post from all, your a good group of people and your helping someone you don't even know to hang on. I pray each night for the grace, courage and faith to get through this and I do believe God has answered part of that prayer here.
Your post gave me back the backbone I needed today
Thank you Rachel,
The past two days have taken a very emotional turn for me. This time around I seem to have to keep fighting dismal thoughts.
The cardio stated I had moderate-severe regurg. I irritate him because I make him explain details he doesn't think I notice on test results, he just pisses me off.
At this time I am going to read your posts and get some ideas on where I need to go from here.
Thanks for each and every post from all, your a good group of people and your helping someone you don't even know to hang on. I pray each night for the grace, courage and faith to get through this and I do believe God has answered part of that prayer here.
Nice post Rachel. I was just reflecting on all that I have been though in the past year and came up with similar (but less eloquent) thoughts. The way I look at it...I was probably going to have to face OHS one day, and while it would have been nice not to have had the complications it is nice to have it behind me now. And it has even given me the added confidence in knowing that I can face other major "life events" when the time eventually comes (and they will). I even got my colonoscopy that I've been putting off for 4 years done right before Christmas. I was always fearful to have that done since my Dad had colon cancer (which he survived) about 10 years ago, but I faced my fears and everything turned out fine. I'm looking forward to 2005 now that I've been patched up, had some parts replaced, had the engine tuned and inspected, and given a clean bill of health.
I hope everyone here finds the health and happiness they are looking for in the coming year.
I hope everyone here finds the health and happiness they are looking for in the coming year.
M
McCln
Welcome to the Boards
Welcome to the Boards
Yes, there has been others with kind of experience. When you had pnuemonia, there was a infection that affected your valve. Now you are having problems. I hope you do not have to have it replaced. Good luck on the Cath. I know you are hurting because you are feeling bad again. Hang in there.
Welcome to the Boards
Yes, there has been others with kind of experience. When you had pnuemonia, there was a infection that affected your valve. Now you are having problems. I hope you do not have to have it replaced. Good luck on the Cath. I know you are hurting because you are feeling bad again. Hang in there.
S
Sherrylynn41
Hi to all
Hi to all
Hi guys! I got my lab results from the rheum. my doc sent me to and I will be taking those to my cardio surgeon the 12th. I was very surprised at some of the results. The results show I am IgA deficient and that several of my other blood work was out of wack. Including a high white blood cell count. I am thinking more along the lines many of you have concluded, infection is probably what has gone wrong with the valve. I am not sure how much my cardio knows about IgA, but I found out today it causes autoimmune problems and at times can attack your own organs. Anyway, keep me in your prayers! Hope everyones New Year is going on without a hitch.
Hi to all
Hi guys! I got my lab results from the rheum. my doc sent me to and I will be taking those to my cardio surgeon the 12th. I was very surprised at some of the results. The results show I am IgA deficient and that several of my other blood work was out of wack. Including a high white blood cell count. I am thinking more along the lines many of you have concluded, infection is probably what has gone wrong with the valve. I am not sure how much my cardio knows about IgA, but I found out today it causes autoimmune problems and at times can attack your own organs. Anyway, keep me in your prayers! Hope everyones New Year is going on without a hitch.
M
M&M
Sherrylynn41, I'll be sending lots of prayers and good wishes your way for the new year..
Take Care and keep us posted.
Marilyn (runner)
Take Care and keep us posted.
Marilyn (runner)
S
Sherrylynn41
Appointment with my heart surgeon today
Appointment with my heart surgeon today
I just got back from the appointment. My surgeon was very concerned with the leakage. I am having a TEE done monday (a lot sooner than the cardio wanted to do one 6 months). He told me that he needed to know where the leaking was comming from either the leaflets themself or at the bottom. He told me to tell the person who was doing the test to call him when it was completed. Now if the leakage is at the bottom, is there a less invasive way to repair?
Appointment with my heart surgeon today
I just got back from the appointment. My surgeon was very concerned with the leakage. I am having a TEE done monday (a lot sooner than the cardio wanted to do one 6 months). He told me that he needed to know where the leaking was comming from either the leaflets themself or at the bottom. He told me to tell the person who was doing the test to call him when it was completed. Now if the leakage is at the bottom, is there a less invasive way to repair?
Sherrylynn,
I hate to be a wet blanket, but likely there is not a less invasive solution, if action is required to be taken.
What it appears the cardiologist is looking for is whether there is leakage at the attachment site. If that is the case, it might be caused by tissue weakness where the valve was originally stitched in. Tissue of this type is called myxomatous, and sometimes accompanies a bicuspid valve and an expanding root.
But there's no reason to get ahead of yourself. Sometimes a TEE shows things to be less bad than assumed by other methods. Let's root for some good news for you for a change.
Very best wishes,
I hate to be a wet blanket, but likely there is not a less invasive solution, if action is required to be taken.
What it appears the cardiologist is looking for is whether there is leakage at the attachment site. If that is the case, it might be caused by tissue weakness where the valve was originally stitched in. Tissue of this type is called myxomatous, and sometimes accompanies a bicuspid valve and an expanding root.
But there's no reason to get ahead of yourself. Sometimes a TEE shows things to be less bad than assumed by other methods. Let's root for some good news for you for a change.
Very best wishes,
S
Sherrylynn41
Tring to keep a stiff upper lip
Tring to keep a stiff upper lip
I am trying to keep all this off my mind, but it is hard. The waiting is enough to make a person go insane. If myxomatous is a problem will the valve be fixxable? I just want to get better.
PS
I would like to introduce you all to my granddaughter Abbigail Caroline "Abbi" for short. The avatar is her picture. She is the love of my life.
Tring to keep a stiff upper lip
I am trying to keep all this off my mind, but it is hard. The waiting is enough to make a person go insane. If myxomatous is a problem will the valve be fixxable? I just want to get better.
PS
I would like to introduce you all to my granddaughter Abbigail Caroline "Abbi" for short. The avatar is her picture. She is the love of my life.
K
Karlynn
Sherrylynn41 said:
And it's easy to see why, even from such a small picture!
K
KimC
SherryLynn,
We have some things in common ...
First, you're the first person I've "met" with a four-leaflet aortic valve like me. (Aren't we lucky?)
Second, the anterior part of my heart is mildy ischemic, and I recently tested positive for IgA. I don't have any blockages but was recently pregnant and developed thyroiditis and diabetes, (which is now borderline).
My PCP suggested that inflammation due to an autoimmune disease is causing vasculitis. I see a rheumotologist next week.
Is that a photo of your baby? I hope you're feeling well, and that you have lots of loving people around you to help. Keep in touch.
Blessings,
We have some things in common ...
First, you're the first person I've "met" with a four-leaflet aortic valve like me. (Aren't we lucky?)
Second, the anterior part of my heart is mildy ischemic, and I recently tested positive for IgA. I don't have any blockages but was recently pregnant and developed thyroiditis and diabetes, (which is now borderline).
My PCP suggested that inflammation due to an autoimmune disease is causing vasculitis. I see a rheumotologist next week.
Is that a photo of your baby? I hope you're feeling well, and that you have lots of loving people around you to help. Keep in touch.
Blessings,
S
Sherrylynn41
In tears
In tears
I had the TEE done today. Nasty little test. Anyway, the cardio who did it stated the leakage is in two places on opposite sides where the valve was sewn in. He has stated the leakage is only 2 so it can't be causing my symptoms ( I pass out, sob, chest pains and fatigue all on excertion) He aslo stated I needed to be watched and another echo done in 6 months. I am so sick of hearing in 6 months. My surgeon hasn't seen the results yet, so I don't know what he will say. Question, why did the heart cath show severe leakage and is a TEE more accurate than a heart cath. All I know is I give up, I am so weary of tring to get someone to understand what is happening to me. I have lost my full time job, because I can't be there. I just don't know what to do.
In tears
I had the TEE done today. Nasty little test. Anyway, the cardio who did it stated the leakage is in two places on opposite sides where the valve was sewn in. He has stated the leakage is only 2 so it can't be causing my symptoms ( I pass out, sob, chest pains and fatigue all on excertion) He aslo stated I needed to be watched and another echo done in 6 months. I am so sick of hearing in 6 months. My surgeon hasn't seen the results yet, so I don't know what he will say. Question, why did the heart cath show severe leakage and is a TEE more accurate than a heart cath. All I know is I give up, I am so weary of tring to get someone to understand what is happening to me. I have lost my full time job, because I can't be there. I just don't know what to do.
G
geebee
Sherrylynn,
I am sorry you didn't get information you found useful today after the TEE (yes, not a pleasant experience).
A couple of questions:
1) Is the cardio who did the TEE your regular cardio? If not, your cardio may be able to give you information based on his/her knowledge of YOU and not just test results. Remember, if the cardio doing the test only knows what he sees on the test, he cannot really give a complete picture. Your symptoms must be taken into consideration and your regular cardio can do this.
2) Do you have a surgeon you trust? If so, you again may get information from him/her that can make you more comfortable.
Keep in mind that many things can cause your symptoms besides heart problems even with you having leakage. The heart will be the first place they will look with your background but it shouldn't be the last if they decide the leakage is NOT causing your symptoms.
PLEASE don't give up. You must continue to fight for your rights as a patient. The right to search for answers and the right to fire your doctors if you feel they are not doing all they should.
Try to keep smiling and keep us posted.
Smiles,
Gina
I am sorry you didn't get information you found useful today after the TEE (yes, not a pleasant experience).
A couple of questions:
1) Is the cardio who did the TEE your regular cardio? If not, your cardio may be able to give you information based on his/her knowledge of YOU and not just test results. Remember, if the cardio doing the test only knows what he sees on the test, he cannot really give a complete picture. Your symptoms must be taken into consideration and your regular cardio can do this.
2) Do you have a surgeon you trust? If so, you again may get information from him/her that can make you more comfortable.
Keep in mind that many things can cause your symptoms besides heart problems even with you having leakage. The heart will be the first place they will look with your background but it shouldn't be the last if they decide the leakage is NOT causing your symptoms.
PLEASE don't give up. You must continue to fight for your rights as a patient. The right to search for answers and the right to fire your doctors if you feel they are not doing all they should.
Try to keep smiling and keep us posted.
Smiles,
Gina
S
Sherrylynn41
Thank you for the encouragement Geebee. No, I have never seen this cadio before, my surgeon ordered the test but he was in surgery and as of 4:30 had not viewed the results. Since May I have tried to find out what is going on. I have been to many doctors and so far I know I have fibromyalgia, some sort of arthritis and an autoimmune disorder. Those things were found but I have been told they are not causing my problems. The reason I feel it is the valve again is the symptoms are the same, only this time they are stronger and more pronounced. Maybe after some rest, I am going to take an ambien and at least get 3 hours rest, I can look on the bright side.
ALCapshaw2
Well-known member
I highly recommend that you get copies of ALL of your test results, lab work, echo's, TEE, etc.
Hopefully your SURGEON will also have copies of those tests and hopefully he will be able to make a determination. If NOT, find a good internist to orchestrate your testing / evaluation. Hopefully someone can get to the root cause of your difficulties.
Best wishes,
'AL'
Hopefully your SURGEON will also have copies of those tests and hopefully he will be able to make a determination. If NOT, find a good internist to orchestrate your testing / evaluation. Hopefully someone can get to the root cause of your difficulties.
Best wishes,
'AL'
The TEE is an echo that is taken from the inside (as you know all too well), and doesn't have to read information through and between hard tissues like the ribs. It gets a lot closer to the heart, so it gets a clearer and more detailed read.
Why don't they do that more often, instead of a regular echo? Apart from a slight chance of doing damage to the throat or vocal chords, I think you've already mentioned why: it's a nasty little procedure.
The tissue could also have been damaged by the infection, if infection was the case. Part of the surgeon's job is to determine the best way to fix it. Surgeons like to fix things: it's their raison d'être.
It doesn't seem like you should have to lose your job for being ill. Now you have insurance issues, as you are not going to pay for this eventual surgery from personal funds.
I don't have a very good personal opinion of your regular cardiologist's approach. He's letting a symptomatic patient with a valve that's flapping in the internal breeze go on a six-month standby. I am also concerned that he may be underestimating your problems because you're female. Some doctors incorrectly assume that women complain more about health issues, and tend to discount some of what they present. I would look for a second opinion (not from the same cardio group), if that option is still available to you.
And see what the surgeon says. State your case to him. Oddly, they sometimes can be more humanistic than many of the regular cardiologists. Also, if he agrees with you about your symptoms, he could schedule it while you're still on insurance, if you've been able to COBRA from your departed job.
I know this has been disheartening for you. It couldn't not be. It's a lot of the wrong things to happen all at once.
But you should know that people here on this site are thinking of you, and rooting for you. You need to reinvest in your personal strengths now, and use them to get through this trial. Take each problem separately, and look at possible solutions. If you don't have solutions for something, set it down and move to the next issue. Be in control of those things you can influence, and don't let the events have their way with you.
Do what you can do, and let your faith conquer the rest.
Best wishes,
Why don't they do that more often, instead of a regular echo? Apart from a slight chance of doing damage to the throat or vocal chords, I think you've already mentioned why: it's a nasty little procedure.
The tissue could also have been damaged by the infection, if infection was the case. Part of the surgeon's job is to determine the best way to fix it. Surgeons like to fix things: it's their raison d'être.
It doesn't seem like you should have to lose your job for being ill.
Now you have insurance issues, as you are not going to pay for this eventual surgery from personal funds.I don't have a very good personal opinion of your regular cardiologist's approach. He's letting a symptomatic patient with a valve that's flapping in the internal breeze go on a six-month standby. I am also concerned that he may be underestimating your problems because you're female. Some doctors incorrectly assume that women complain more about health issues, and tend to discount some of what they present. I would look for a second opinion (not from the same cardio group), if that option is still available to you.
And see what the surgeon says. State your case to him. Oddly, they sometimes can be more humanistic than many of the regular cardiologists. Also, if he agrees with you about your symptoms, he could schedule it while you're still on insurance, if you've been able to COBRA from your departed job.
I know this has been disheartening for you. It couldn't not be. It's a lot of the wrong things to happen all at once.
But you should know that people here on this site are thinking of you, and rooting for you. You need to reinvest in your personal strengths now, and use them to get through this trial. Take each problem separately, and look at possible solutions. If you don't have solutions for something, set it down and move to the next issue. Be in control of those things you can influence, and don't let the events have their way with you.
Do what you can do, and let your faith conquer the rest.
Best wishes,
K
Karlynn
Sherrylynn,
I have nothing to add to what Bob and Gina both said (other than a loud, resounding AMEN to Bob's comment on some doctors discounting women's complaints!)
Just wanted you to know that I'm wishing you strength, as well as peace, as you seek answers. Hang in there and keep posting. It's a great stress reliever.
I have nothing to add to what Bob and Gina both said (other than a loud, resounding AMEN to Bob's comment on some doctors discounting women's complaints!)
Just wanted you to know that I'm wishing you strength, as well as peace, as you seek answers. Hang in there and keep posting. It's a great stress reliever.
I
Ivyplace
I am glad there is a site like this online
I am glad there is a site like this online
I wasn't expecting to have an artifical valve (Mitrol) put in and still am reeling from the surgery and just started looking into this new lifestyle that I will be living. I had the operation on the 4th, they are still working on my coumadin levels and when I see the surgeron or the cardilogoist, I will find out what kind of valve I have other than mechcanial- I am feeling better but for some reason I am having problems with my eyesight, blurring and figure it is part of the process I just been through and the medicines I am taking. I have been loggin in and reading al lthe post and it nice to have the opportunity to see how others are doing
Thanks
Sharon Ivy
I am glad there is a site like this online
I wasn't expecting to have an artifical valve (Mitrol) put in and still am reeling from the surgery and just started looking into this new lifestyle that I will be living. I had the operation on the 4th, they are still working on my coumadin levels and when I see the surgeron or the cardilogoist, I will find out what kind of valve I have other than mechcanial- I am feeling better but for some reason I am having problems with my eyesight, blurring and figure it is part of the process I just been through and the medicines I am taking. I have been loggin in and reading al lthe post and it nice to have the opportunity to see how others are doing
Thanks
Sharon Ivy
K
Karlynn
Welcome to VR.com Sharon! You've come to the right place. I had my mitral valve replaced 13 years ago and spent the next 11.5 years feeling alone in my experience. Then in 2003 I found VR through a random search on Coumadin and I no longer felt alone, but in good, support, fun and incredibly intelligent company.
You are still very fresh into the first part of recovery and your body will be making many changes and adjustments. If you are ever concerned or question anything, don't hesitate to call your doctor. It will probably take a while for you to get a steady level (dose) of Coumadin going. Don't worry about having to take "too much". The right amount is what ever it takes to keep you in range. For a MVR that would be 2.5 - 3.5. Your best source for knowledge on Coumadin (warfarin) is our treasured member Al Lodwick. His site www.warfarinfo.com will be your best friend. I will caution you that some doctors may think they know how to manage Coumadin, but don't really. Don't ever feel bad about questioning a doctor's information.
Right now, your job is to eat, sleep, walk and breath. If you do too much, your body will let you know! And it doesn't do it in a very gentle way.
Rest assured that life is good after valve replacement and you'll have a greater appreciation of all the good things.
You are still very fresh into the first part of recovery and your body will be making many changes and adjustments. If you are ever concerned or question anything, don't hesitate to call your doctor. It will probably take a while for you to get a steady level (dose) of Coumadin going. Don't worry about having to take "too much". The right amount is what ever it takes to keep you in range. For a MVR that would be 2.5 - 3.5. Your best source for knowledge on Coumadin (warfarin) is our treasured member Al Lodwick. His site www.warfarinfo.com will be your best friend. I will caution you that some doctors may think they know how to manage Coumadin, but don't really. Don't ever feel bad about questioning a doctor's information.
Right now, your job is to eat, sleep, walk and breath. If you do too much, your body will let you know! And it doesn't do it in a very gentle way.
Rest assured that life is good after valve replacement and you'll have a greater appreciation of all the good things.
L
Les
Welcome Sharon,
Karlynn posted the perfect prescription. The best to you on your recovery!
Karlynn posted the perfect prescription. The best to you on your recovery!
