Nupur
Well-known member
Wishing you all the best Nancy, I hope the cath procedue went well today. I am not exactly in your situation (yet), but I can relate to the "husband" factor : )
Nupur
Nupur
I need help!
- Thread starter nancym
- Start date
Help Support Valve Replacement Forums:
I'm standing right behind you in line
I'm standing right behind you in line
Just wanted you to know that you do have plenty of company here. Although I joined this community in September, this is only my second post, despite hanging around and reading everything I could. I've been diagnosed with BAV with severe stenosis. I'm currently looking at a second opinion next week, with another echo scheduled for November and a cardiac catheterization in December. My best guess now is that surgery will be sometime in January. I have stayed asymptomatic, but I'm now noticing small things that may or may not be actual symptoms. I'm also very uptight about my upcoming cath. Like you, I feel that I need help, support and even more information, so it's time to start my own threads and hopefully get some answers, or just a willfull listener or two.
I'm trying to work out many things right now, including who should do the surgery, what type of valve I should pick and determining if I might be a candidate for minimally invasive surgery. Have you resolved any of these issues? If you would like to PM me, I would be very interested in sharing my thoughts as I travel this same road with you.
Jane
I'm standing right behind you in line
Just wanted you to know that you do have plenty of company here. Although I joined this community in September, this is only my second post, despite hanging around and reading everything I could. I've been diagnosed with BAV with severe stenosis. I'm currently looking at a second opinion next week, with another echo scheduled for November and a cardiac catheterization in December. My best guess now is that surgery will be sometime in January. I have stayed asymptomatic, but I'm now noticing small things that may or may not be actual symptoms. I'm also very uptight about my upcoming cath. Like you, I feel that I need help, support and even more information, so it's time to start my own threads and hopefully get some answers, or just a willfull listener or two.
I'm trying to work out many things right now, including who should do the surgery, what type of valve I should pick and determining if I might be a candidate for minimally invasive surgery. Have you resolved any of these issues? If you would like to PM me, I would be very interested in sharing my thoughts as I travel this same road with you.
Jane
D
Dawn-Marie
Hi Nancy ~ Welcome to this wonderful site of caring people. It's so normal to be scared and everyone here can relate to that feeling. I just got rejected by Dr. Lars Svensson at Cleveland Clinic for both the traditional open heart surgery and for the percutaneous aortic valve (if it becomes available). I'm paralyzed from the chest down due to bone cancer of the spine when i was 29 so, therefore, i have no ability to cough or deep breathe and that's why i got rejected for traditional surgery. I got rejected for the percutaneous aortic valve if it becomes available for bicuspid aortic valves (like i have) because i have Medicare and NY Medicaid. They won't take NY Medicaid at Cleveland Clinic anymore and just the money that Medicare would pay is not enough for them. My only hope now is to have a Valvuloplasty done on the 31st of this month and, if this works, which the cardiologist who is doing it seriously doubts, then i might be able to go to New York City and have the percutaneous aortic valve done there (if Medicaid will pay for wheelchair transportation that far away). So, i can totally relate to being scared, as i am right now too, as Dr. Ferraro is afraid i'll have a major stroke during the Valvuloplasty, but Dr. Strzalka (who would have been my surgeon) still wants me to have it done.
Don't worry about the cath. They give you conscious sedation. I remember them giving it to me and about a minute thereafter, and then i remember the doctor asking me who i had for my primary care doctor at the very end of the procedure, as he had to write his name as the referring doctor. I don't remember a thing in between. I did have a fairly large bruise for quite a while, but that is all.
My prayers are with you. Please let us know how you do tomorrow.
Don't worry about the cath. They give you conscious sedation. I remember them giving it to me and about a minute thereafter, and then i remember the doctor asking me who i had for my primary care doctor at the very end of the procedure, as he had to write his name as the referring doctor. I don't remember a thing in between. I did have a fairly large bruise for quite a while, but that is all.
My prayers are with you. Please let us know how you do tomorrow.
hensylee
Well-known member
this site is one of the best ideas Hank ever had (marrying Michelle was the best one). It is now far and wide over the world just for those like you, Nancy and Jane. Nearly everyone who comes in is here because of fear and a great need to find out just what the heck is going on in their bodies. And to find someone who can relate to that very fear and need.
We are also here to support you all the way from your first post.
Members, mostly all, know exactly how you are feeling right now and remember when we were where you are. All traveled that road with accompaniment of VR members who could answer questions and offer encouragement and many are still here cheering you on because we know you need to feel that you are going to be so much better once you are over the mountain. You are, you know. Blessins.............
We are also here to support you all the way from your first post.
Members, mostly all, know exactly how you are feeling right now and remember when we were where you are. All traveled that road with accompaniment of VR members who could answer questions and offer encouragement and many are still here cheering you on because we know you need to feel that you are going to be so much better once you are over the mountain. You are, you know. Blessins.............
Nancy ... I echo what many others have said ... it is normal to feel the way that you are feeling ... if you are healthy otherwise I am sure you will do fine ... Looking back on it I was numb when I walked through the doors of the hospital but at peace ... everyone is different and there is no right or wrong way to feel ... take a deep breath ... it will be behind you before you know it!!!
Hi Nancy,
Welcome to the VR site. I had Aortic Valve Replacement on May 19, 2008. It came as a surprise, but I made it through the cath procedure, an MRA and heaven knows what else before my surgery. Don't worry, you being nervous is normal. Sorry your husband isn't being helpful, but most likely he is scared also, but wants to appear 10 feet tall and bullet proof to you. Just remember that we are here for you. I'm looking forward to more posts from you telling us how you sailed through the cath. procedure and then your surgery. Before you know it, this will all be behind you. Sending you lots of hugs and I will be thinking of you
Welcome to the VR site. I had Aortic Valve Replacement on May 19, 2008. It came as a surprise, but I made it through the cath procedure, an MRA and heaven knows what else before my surgery. Don't worry, you being nervous is normal. Sorry your husband isn't being helpful, but most likely he is scared also, but wants to appear 10 feet tall and bullet proof to you. Just remember that we are here for you. I'm looking forward to more posts from you telling us how you sailed through the cath. procedure and then your surgery. Before you know it, this will all be behind you. Sending you lots of hugs and I will be thinking of you
Nancy, Welcome and wish you well.
We all went through your same feelings. I knew my surgery was coming close since 2002, yet when my cardiologist told me it was due in 6 months last March, I felt like a bombshell fell over my head and the earth shook beneath me. I became scared, short fused, and OUT OF MY MIND.
Taking Prozac (20mg) and Xanax (1/4 of mg - enough for me) at night, and sometimes a sleeping pill were of great help to me. I also loudly voiced my fears to my 'cool' (on the outside) hubby and asked him to be patient with my tears and fears and to give me more attention and more hugs
This + the medication + mainly these website awsome members made me go for surgery with great positive attitude. Having the surgery at Cleveland Clinic should give you great peace of mind!!
Start looking foward to the healthier you after the surgery.
Best of wishes, keeping you in my prayers,
hall
Well-known member
Hi Nancy and welcome. You will find a wealth of information here. The people are great. I would think there is something wrong w/someone who isn't nervous about OHS. Everyone is. You will be ok. Talk to us. there is always someone to answer your questions/concerns. Wishing you the best of luck.
G
Guest
Nancy,
Welcome home to VR!
First thing is ... you are never alone. GOOD LUCK on your cath; thoughts/prayers coming your way.
I see you are in Pittsburgh PA. I know we have a couple members that live there, though I know he doesn't check the boards much. Unfortunately, I didn't get to see them when I was in the Pittsburgh area this past year in June or August. BUT ... I could give them a call to have them check in here, if you like....
Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Welcome me to stay overnight" ... Ingrim Hill ... 'Will I Ever Make It Home?
Welcome home to VR!
First thing is ... you are never alone. GOOD LUCK on your cath; thoughts/prayers coming your way.
I see you are in Pittsburgh PA. I know we have a couple members that live there, though I know he doesn't check the boards much. Unfortunately, I didn't get to see them when I was in the Pittsburgh area this past year in June or August. BUT ... I could give them a call to have them check in here, if you like....
Cort | 35swm | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"Welcome me to stay overnight" ... Ingrim Hill ... 'Will I Ever Make It Home?
netmiff
Well-known member
Nervous?? I was so nervous the few weeks before my AVR that I was actually cleaning out linen closets and such ... just burning off the nervous energy! I am on antidepressants long-term, and had to increase dosage a few months prior to OHS, and to take a sleeping pill occasionally in the 2 or three weeks leading up to the surgery.
I don't remember anything at all about my cath - I was so high on "joy juice" (their term, not mine lol) it's a wonder I ever came down !
I didn't know about this forum before my OHS, but it has been just over a year now, and, although I know it's a big thing, I do wonder what all the fuss was about!
Post any questions you have, post rants, whatever. We are all here for you, and although it can get crowded in the OR, we will all be there holding your hand.
Threee deep breaths also help, I still do them when I go to the dentist, it makes such a difference !
I don't remember anything at all about my cath - I was so high on "joy juice" (their term, not mine lol) it's a wonder I ever came down !
I didn't know about this forum before my OHS, but it has been just over a year now, and, although I know it's a big thing, I do wonder what all the fuss was about!
Post any questions you have, post rants, whatever. We are all here for you, and although it can get crowded in the OR, we will all be there holding your hand.
Threee deep breaths also help, I still do them when I go to the dentist, it makes such a difference !
terodac
Well-known member
Save that entergy!
Save that entergy!
Nancy, save all that entergy for your surgery, had everything done to me you will except the mitral repair. Will be two years November, So please go in it with a possitive attitude because we can be fixed to live a long time. Time we would not have had! Pray and walk in faith! You need to rest, that is what my doctor told me to do before surgery! Hey at least you will have a doctor in the house with you after surgery. Men get scared and they don't want to show it. I caught my husband in tears many days before and after he is also in the medical field. I guess he knew my risk. So please stay strong in spirit and be a survivor!! We all know how you feel and we have walked the walk! God Bless!
Save that entergy!
Nancy, save all that entergy for your surgery, had everything done to me you will except the mitral repair. Will be two years November, So please go in it with a possitive attitude because we can be fixed to live a long time. Time we would not have had! Pray and walk in faith! You need to rest, that is what my doctor told me to do before surgery! Hey at least you will have a doctor in the house with you after surgery. Men get scared and they don't want to show it. I caught my husband in tears many days before and after he is also in the medical field. I guess he knew my risk. So please stay strong in spirit and be a survivor!!
We all know how you feel and we have walked the walk! God Bless!
D
DSOB
The waiting is in fact the worst part, but one thing I think helps is going into it as informed as possible, knowing what to expect. This site certainly is good for that, but in addition, most hospitals give out a binder of information after the surgery for you to take home. (Why they do it after the surgery is beyond my comprehension. Why they try to explain things to you 24 - 36 hours after general anesthesia is another question I can't explain.)
In the four months since my AVR I have had two very good friends have valve replacement/repair surgery. I knew zero people with it in my first 55 years, then they start popping up all over. I took the hospital's binder to them to read in the week(s) prior to their surgery so they could have a better idea of what was going on.
While this site a great place for information and support, nothing can help better than someone who has been there looking you in the eye and telling you it isn't as bad as you are envisioning. But don't talk to people who are over-dramatic or so self-centered they want you to be impressed by their experience. Know who you are talking to before you have that sit-down.
Call the hospital and ask if they have that book, and if so, see if you can pick it up ahead of time. I bet you can.
Good luck.
In the four months since my AVR I have had two very good friends have valve replacement/repair surgery. I knew zero people with it in my first 55 years, then they start popping up all over. I took the hospital's binder to them to read in the week(s) prior to their surgery so they could have a better idea of what was going on.
While this site a great place for information and support, nothing can help better than someone who has been there looking you in the eye and telling you it isn't as bad as you are envisioning. But don't talk to people who are over-dramatic or so self-centered they want you to be impressed by their experience. Know who you are talking to before you have that sit-down.
Call the hospital and ask if they have that book, and if so, see if you can pick it up ahead of time. I bet you can.
Good luck.
nancym
Well-known member
Hello everyone--
I am home from my cath, and I hate to say it, but t was the worst day of my life. You have to understand that this is something that I have been afraid of for 50 years. To be perfectly honest, the cath itself was not too bad, although they did not give me enough drugs to knock me out at all, and I was perfectly conscious the whole time. What was so awful was the 5 hour wait, which I spent sobbing. I was so scared, and nobody did (or could do) anything about it. I think if I could have had a valium or a xanax during that time, it would have been an entirely different experience. But nobody seemed to care. After the cath, I had to lay semi-flat for 4 hours, which was not easy, and I did plenty of complaining ( the nursing staff must have hated me). But I saw a lot of things that were not done correctly (like checking my groin every 1/2 hour in full view of whoever was across the hall from me and whoever might be walking by and the automatic blood pressure cuff that suddenly went so tight that I had marks on my arm an hour later, but the nurse said was perfectly normal and yelled at me for complaining about it. I am normally a very shy and non-assertive person, but when I get in a medical situation, I seem to go crazy.
My husband was there throughout and not once gave me any encouragement or sympathized with what I was going through. Maybe he felt it, and for whatever reason didn't want to express it, but I needed his comfort, and he knew it, but he was still not able to give it to me. I would have loved to have a friend with me instead, but I didn't want to hurt his feelings. He just doesn't realize how his behavior effects me. And when I try to talk to him about it, he just rolls his eyes and doesn't want to discuss it.
Anyway--I am glad to have that over with. But my most recent problem (aside from having surgery 11/11) is that I was just informed by my insurance company that they will only pay for 50% of the charges. I had been led to believe that they would cover it 100%, but maybe that was a misunderstanding on my part. So now what? I had several bad experiences with surgeons in Pittsburgh, which is what led me to the CC in the first place. But is it worth going into debt for 100s of 1000s dollars? I guess we have enought in our savings, but I hate to use it all if it's not necessary.
So that's what's going on today. I feel perfectly fine after yesterday's cath--went to work today and out to dinner. Just a little bit of an achy groin. And the results of the cath were good--no blockage, which is what I had figured all along. And I am so happy to be home!!
Thank you to everyone that responded. It really means so much to me. You have all become, in such a short time, my family!
Nancy
I am home from my cath, and I hate to say it, but t was the worst day of my life. You have to understand that this is something that I have been afraid of for 50 years. To be perfectly honest, the cath itself was not too bad, although they did not give me enough drugs to knock me out at all, and I was perfectly conscious the whole time. What was so awful was the 5 hour wait, which I spent sobbing. I was so scared, and nobody did (or could do) anything about it. I think if I could have had a valium or a xanax during that time, it would have been an entirely different experience. But nobody seemed to care. After the cath, I had to lay semi-flat for 4 hours, which was not easy, and I did plenty of complaining ( the nursing staff must have hated me). But I saw a lot of things that were not done correctly (like checking my groin every 1/2 hour in full view of whoever was across the hall from me and whoever might be walking by and the automatic blood pressure cuff that suddenly went so tight that I had marks on my arm an hour later, but the nurse said was perfectly normal and yelled at me for complaining about it. I am normally a very shy and non-assertive person, but when I get in a medical situation, I seem to go crazy.
My husband was there throughout and not once gave me any encouragement or sympathized with what I was going through. Maybe he felt it, and for whatever reason didn't want to express it, but I needed his comfort, and he knew it, but he was still not able to give it to me. I would have loved to have a friend with me instead, but I didn't want to hurt his feelings. He just doesn't realize how his behavior effects me. And when I try to talk to him about it, he just rolls his eyes and doesn't want to discuss it.
Anyway--I am glad to have that over with. But my most recent problem (aside from having surgery 11/11) is that I was just informed by my insurance company that they will only pay for 50% of the charges. I had been led to believe that they would cover it 100%, but maybe that was a misunderstanding on my part. So now what? I had several bad experiences with surgeons in Pittsburgh, which is what led me to the CC in the first place. But is it worth going into debt for 100s of 1000s dollars? I guess we have enought in our savings, but I hate to use it all if it's not necessary.
So that's what's going on today. I feel perfectly fine after yesterday's cath--went to work today and out to dinner. Just a little bit of an achy groin. And the results of the cath were good--no blockage, which is what I had figured all along. And I am so happy to be home!!
Thank you to everyone that responded. It really means so much to me. You have all become, in such a short time, my family!
Nancy
nancym
Well-known member
P.S.--
I would be happy to talk to anyone or privately message anyone--I need all the help and support I can get. Thank you all!
I would be happy to talk to anyone or privately message anyone--I need all the help and support I can get. Thank you all!
khamis73
Well-known member
I was there too it's normal to be afraid (it's not normal if you're not afraid)until now i still have anxiety but believe me you won't feel any thing you will wake up in the ICU and then you you'll feel thankful for being a life that what i felt
ruthienc1
Well-known member
Hi Nancy- Have you thought of filing an appeal with your insurance company about their decision to only pay for 50% of the cost? I'm assuming this may have something to do with CC being out-of-network, but , if there is medical necessity to have the surgery there and your doctors will back you up, you may be able to get better coverage. It sounds as though your past history is very complex, and would make you someone who needs the very highest level of expertise for your surgery. Don't assume that your insurance company has paid any attention to any of this. Also don't assume that a first denial is the last word. The insurance company will be slow, so you should move fast. In North Carolina, if the company still wouldn't budge, you could appeal to the state insurance commissioner. You may want to look into that possibility in PA.
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Jkm7
Well-known member
Nancy.... Sorry you had such an emotional time getting through your cath. We all understand. You are most assuredly not the first to shed some tears. The nurses could have been a little kinder, maybe. Did your DH or you ask for valium or xanax for you? Was it refused? I'm not shy about asking for help if I feel I need it. I asked for something while I was waiting to go to the OR and the nurse responded quickly with ativan or valium or who knows what but it helped.
I also would have requested more 'happy juice' if I had not been out of it at my cath and TEE.
Speak up. Get used to asking now as when you have your surgery, you will be asked your level of pain and do you want pain meds. There is no reason to play hero IMO
About the insurance issue...... I wish I had some helpful suggestion but I don't. Both my OHS were fully covered at MGH. I got no bill at all but I was 'in network' as we live in the region. Are there any hospitals/surgeons in your network you feel comfortable doing your surgery? You could reschedule with a closer to home facility though at this point, it would mean delay probably. Have you been able to discuss this with your DH?
Remember, right now all of this is about YOU! You have to concentrate on what you need and what is best for you!! Everyone else gets in line behind you at this time in your life. You hope those you love and who love you 'get it' but if they don't, they will have to figure it out. You do what you need to do to get through this in the best possible way.
I so wish there was some way to help you more. Sending you big cyber hugs....
I also would have requested more 'happy juice' if I had not been out of it at my cath and TEE.
Speak up. Get used to asking now as when you have your surgery, you will be asked your level of pain and do you want pain meds. There is no reason to play hero IMO
About the insurance issue...... I wish I had some helpful suggestion but I don't. Both my OHS were fully covered at MGH. I got no bill at all but I was 'in network' as we live in the region. Are there any hospitals/surgeons in your network you feel comfortable doing your surgery? You could reschedule with a closer to home facility though at this point, it would mean delay probably. Have you been able to discuss this with your DH?
Remember, right now all of this is about YOU! You have to concentrate on what you need and what is best for you!! Everyone else gets in line behind you at this time in your life. You hope those you love and who love you 'get it' but if they don't, they will have to figure it out. You do what you need to do to get through this in the best possible way.
I so wish there was some way to help you more. Sending you big cyber hugs....
pamela
Well-known member
Hi Nancy, I'm glad the actual cath and recovery have gone well enough, all things considered. I had a nightmare experience in February 2000 that I won't detail here, so I understand the fear and frustrations of being trussed and unable to control the environment around me.
Be thankful you didn't have valium, that drug turns me into a strung out tear-squirting wreck and that's the last thing you need when you're at the mercy of an overworked and jaded caregiver.
Your husband sounds like he's in self-protect mode; where it seems his feelings for you have been dammed up. I think until you're out of danger and on the mend you may need to take solace in the thought that he cares for you; so much that he needs to distance himself from his heart in case the unthinkable happens.
You will get through this. Take the advice about appealing the cost share decision and only walk through one doorway at a time. Don't forget to ask the clinic administrators if there are any programs or aide you qualify or can apply for to reduce your out-of-pocket expenses.
Take Heart, the only silly question is the one no one thought to ask.
Be thankful you didn't have valium, that drug turns me into a strung out tear-squirting wreck and that's the last thing you need when you're at the mercy of an overworked and jaded caregiver.
Your husband sounds like he's in self-protect mode; where it seems his feelings for you have been dammed up. I think until you're out of danger and on the mend you may need to take solace in the thought that he cares for you; so much that he needs to distance himself from his heart in case the unthinkable happens.
You will get through this. Take the advice about appealing the cost share decision and only walk through one doorway at a time. Don't forget to ask the clinic administrators if there are any programs or aide you qualify or can apply for to reduce your out-of-pocket expenses.
Take Heart, the only silly question is the one no one thought to ask.
abbanabba
Well-known member
(((((Hugs))))) Nancy. Sorry to hear it was such an awful experience for you. When I was first told I'd need a PVR, I was so scared of the cath that I cancelled it, but after having the surgery delayed 5 years, I was determined to go through the next one. I was so scared I was shaking quite violently - one of the nurses noticed and offered me something to calm me down. I can't believe they didn't do the same for you... especially since you were clearly distressed by it all
I can also relate to the complete lack of privacy. Everytime they came in to check me they just whipped the covers back - no curtains pulled, and I was right next to a hallway and the in-room waiting area which was full of blokes OK - so they (the medical staff) have seen it all before... but everyone in the waiting area hadn't... and certainly not mine!! I think sometimes people in the medical field forget that we are people - not just "patient X in bed X".
Perhaps this is why your husband doesn't "get" it. He's probably so used to seeing so many people go through similar things that he's just tuned out to it, although it's disappointing that he doesn't seem to listen when you explain that this is all new and scary for you Next time I'd say screw his feelings and take a friend. From the sounds of it, I don't think it would upset him... and probably wouldn't hurt if it did
Wish I could give you some useful advice on the insurance It's not something I've had to deal with, so I'm afraid I have nothing useful to add. I do hope you can appeal the decision and get full cover.
Meanwhile, hang in there and remember you have many shoulders to lean on here.
A x
I can also relate to the complete lack of privacy. Everytime they came in to check me they just whipped the covers back - no curtains pulled, and I was right next to a hallway and the in-room waiting area which was full of blokes
OK - so they (the medical staff) have seen it all before... but everyone in the waiting area hadn't... and certainly not mine!! I think sometimes people in the medical field forget that we are people - not just "patient X in bed X".Perhaps this is why your husband doesn't "get" it. He's probably so used to seeing so many people go through similar things that he's just tuned out to it, although it's disappointing that he doesn't seem to listen when you explain that this is all new and scary for you
Next time I'd say screw his feelings and take a friend. From the sounds of it, I don't think it would upset him... and probably wouldn't hurt if it did Wish I could give you some useful advice on the insurance
It's not something I've had to deal with, so I'm afraid I have nothing useful to add. I do hope you can appeal the decision and get full cover.Meanwhile, hang in there and remember you have many shoulders to lean on here.
A x
BDMc
Well-known member
Dear Nancy, Welcome. Glad the cath is behind you. Mine was worse than the OHS. I find trying to focus on real tasks, and researching what's involved helps me cope with both my fears, and the situation. Think about the statistics. Most of us make it! Talk with your husband. See if you can't get him to open up. Don't assume he understands, or really knows what is going on for you. All the best, Brian
