Scared!

[Danny]

Hello,

I have been lurking here for a couple of days and put off joining because of a silly reason: joining would be another step in accepting as reality what I have been dreading with a sense of doom for years: that I need to have OHS to repair my aortic valve.

I have known for some years that this was coming. I had rheumatic fever when I was 12 (I am 42 now). I discovered to my shock about 6 years ago that I would eventually need to have the valve replaced. I visit my cardiologist every year to get an echo and every year I make myself sick with anxiety a month or two before about whether this will be "the year."

I had finally started to convince myself that I would be OK again this year, but when I visited my cardiologist two weeks ago, he said that my valve had gotten much worse and that I would need to have a cardiac catheterization and would then likely be referred to a surgeon for AVR. I don't think I heard anything he said to me other than that. I felt the blood rush to my head and felt as if I were in some kind of alternate universe. It still doesn't feel real to me. I am still in a state of shock, depression and extreme anxiety.

I felt the anxiety itself would kill me. It's hard to describe, but I think dealing with that is probably worse than the surgery will be. (From what I have read, I know many of you would agree.) My cardiologist wouldn't prescribe anything for the anxiety and I don't currently have a primary care doctor. My mother takes Ativan but doesn't take as much as her prescription, so she insisted that I take small doeses of it rather than let the anxiety stress kill me. I have been taking 1/2 of a 1mg 3 times a day and I think it has helped a bit. I'm not crazy about taking this without doctor's orders, though.

My cath is scheduled for next Tuesday. I have read from so many people here that it's no big deal, but I still can't wrap my mind around it. I am an extremely strong person when it comes to just about anything but when it comes to medical issues I am a total wuss. Even silly things such as knowing my groin will be exposed (I am very modest) freaks me out. I know, everyone says that the modesty thing has to go, but I have been this way for 42 years so it's not so easy for me!

This site has been a godsend! I have spent a lot of time here reading hundreds of posts and they have helped me feel better to some degree. Of course, the thing that makes me feel the best is to just not think about it at all! Denial is my favorite river! I have a hard time thinking about anything else and it is really draining on me and it must be on those around me. I bury myself in work and other projects, but the "dark cloud" is still hovering.

It's so wonderful to find a place where I know others have been through the exact same thing, though I'm still having a difficult time accepting the reality that I really do belong among you! I am still waiting to wake up from the bad dream.

There seems to be so many odeals ahead. I know everyone of you had some degree of anxiety and depression during this time of your life if perhaps not as bad as mine. I would love to hear how you got yourself through this.

Thanks to you all!

 

[carista]

I haven't had my surgery yet so I'm pretty much in the same boat as you right now. But I will tell you, my entire life I have had bad anxiety. I have all kinds of anxiety including social anxiety. I usually have my anxiety under control except during stressful times. So I'm sure you can imagine how I felt when I found out I had to have surgery. I had anxiety attacks numerous times throughout the day after finding out and I even woke up having anxiety attacks. It's gotten much better lately, and I'm going to see my doctor next week to hopefully be put on something to help with my anxiety. I HATE pills, tried everything I could to avoid it but screw it. The only thing that even helped with my anxiety is when I got to the point where I realized I was lucky because I could be fixed, and there is nothing I can do about it so stop worrying about it. Obviously easier said than done, and of course I still do worry about it but i've calmed down a bit at least.

I'm not a doctor, but I don't understand why your cardio wouldn't put you on something for anxiety, did he give you a reason?? I would definately see someone else about it if I were you. I also wouldn't take someone else's prescription. My recommendation: go see someone else about it and make sure you tell them what you have been taking already.

Welcome to the forum and good luck!

Carista

 

[Nancy]

Hi Danny-

Welcome to the site. It's a great place even when you really, really don't want to have to be here.

Regarding modesty--think of it this way, roughly half the ENTIRE world has the same equipment as you, and roughly half has the same equipment as any other female, even other mammals have the same stuff. So it's pretty common equipment. And it all works pretty much the same given some minor variations that don't matter a hoot to anyone in the medical field.

When docs and nurses go to medical school and nursing school, they get so used to "nakked" bodies, that's it pretty much of a yawn, and they probably view it ALL in a clinical way knowing how it works together to keep your body functioning. And here's a flash, even your doctor has the same human equipment, no fooling!

I went to college and graduated with a degree in the art field. We had life drawing classes from the beginning. The first day we were all so nervous about a "nude" model. And the thought of drawing one, well--how could we ever recover from the shock.

But as our professor droned on and on about the human body and how it was made up of different shapes, and they then became a two dimensional design on the page, and then we had to memorize all the muscles and the bones that were the underlayment of the body, the person on the pedestal might just have been a plaster cast. They could hold the pose for an hour or more, never moved--they weren't even "alive".

You're going to be your doctor's plaster cast body for a while. Nobody in the operating room will give a darn. They've seen it all many, many times before.

As to the surgery. It sure is a big deal. But the surgeons who do this are very expert at what they do. They are in and out of the human heart sometimes a few times each day. They can fix things in there. You will be taken care of by the best professional staff the hospital has. You will have one on one care for the first few days, then one to two, and then possibly graduate to a more normal setting, that is unless you go home first. The length of stay is approximately 5-7 days, and some have gone home in 4 days. It's pretty darned amazing. You will be up and walking by the second day.

It's a small part of your life, really. And the best thing is that this is a condition that can be fixed.

We'll all help you through this difficult time.

Best wishes.

 

[Tom F.]

First, to both of you, I recall very well the unbelievable fear that hit me when, at 49, I was told that I needed open heart surgery due to an aortic aneurysm. It is very natural to be afraid of this stuff, very natural. And generally speaking, not necessary. Now when I look back on it all I know that there really was not much to be afraid of. The cath was not a big deal. Yes, my modesty went by the boards, and lying in the bed watching TV for the 5 hrs you need to sit to let the artery heal was boring, but then my wife picked me up and we went out for margaritas and mexican food. The surgery too was much less than I thought it would be. Yes, it is major surgery, and it will take some time to get back to being your old self. But the surgery will save your life, and once you get past it, and you will get past it fine, some day both of you will be posting here, telling others that you got through it fine, and so will they. Good luck to you both.

 

[tobagotwo]

Of course you're scared. We all were, and sometimes still are. Over time, you cope. Try to sleep-walk through it and not think about it, if you're afraid you might suddenly bolt for the door. Yes, that thought crossed all our minds at least once, too.

As far as your equipment during the cath: mine was never exposed. It was simply off to the other side, under a sheet and the gown. He didn't want to see any more than I wanted to show, so we had a mutual interest in keeping it incognito. I suspect it usually turns out that way.

Best wishes,

 

[ALCapshaw2]

Welcome to our world Danny.

You're already taking the first step, acknowledging that you have a problem that needs to be fixed. Just be glad that you live in a time that it CAN be fixed!

Regarding modesty, at my hospital they cover your 'privates' with a folded towel during the cath. You might also want to ask the hospital if they have a video on the catheterization procedure. I watched the one at my hospital 3 times before going in. When it was over, I said, "Is that all there is"? NO BIG DEAL!

I highly recommend that you find a good INTERNIST to serve as your Primary Care Physician. One who specializes in cardiology would be a plus. Perhaps your cardiologist can give you a referal or at least some suggestions.

Best wishes,

'AL Capshaw'

 

[Danny]

Thanks to all of you for your encouragement. I need it! I feel like I'm in good company.

To answer Pam's question about why my cardiologist wouldn't prescribe anything for my anxiety: I never did get to speak with him about it -- only his nurse. When I called his nurse to schedule the cath, I told her about my debilitating anxiety and asked whether the doctor could prescribe something for me. She told me that the doctor was on vacation and that they don't do that anyway. I agree that I don't like the idea of taking someone else's prescription, but it has at least gotten me through. I am taking a very low dosage -- perhaps lower than I should -- but I am afraid to mess around with this stuff without supervision. I think I'll call again and ask. A different cardiologist is doing my cath. Perhaps I'll speak with him about it.

One of the many things that concerns me is the recovery time. I own a business (computer software) that very much depends on me and will be in rough shape if I'm disconnected from it for a very long time. I have a staff that can keep things running along, but they need me for the very technical stuff and to fix software bugs and such. The good thing is that I work from home (my staff all works from home and our sales team works from another office).

I hear so many people talk about waiting 8 weeks or more to go back to work. I am hoping that I can at least start tending to my business in a week or so after returning home. I can do everything I do from a recliner or bed. As long as I have a laptop computer, can type and can think clearly, I can work. In other words, if I can work the TV remote, why can't I at least work a little? Is that realistic?

Thanks,
Danny

 

[Ross]

I am hoping that I can at least start tending to my business in a week or so after returning home. I can do everything I do from a recliner or bed. As long as I have a laptop computer, can type and can think clearly, I can work. In other words, if I can work the TV remote, why can't I at least work a little? Is that realistic?

Thanks,
Danny

Ain't no way! Your mind is going to be jumbled, your nerves frayed, emotions messed up and in general, work will be the last thing on your mind. You need to concentrate on recovery, not work.

 

[Danny]

Ross,

My mind is jumbled right now! ;-) I would think it's going to be better after the surgery is past me and I don't have to dread it.

Danny

 

[Nancy]

Don't make your time framework too tight. You will have heavy duty pain meds in the hospital and maybe even at home. Everyone is different. Also the anesthesia after-effects take a little while to leave your system. During this period of time, you could have major mood swings, find it very difficult to concentrate or read, some people have had hallucinations. I don't want to scare you, it really isn't scary because many people have the same thing happen. It's part of the early recovery which can be one to two weeks. You will not be sleeping well at all, perhaps a couple of hours at a time. So you will be very tired. Just be prepared for this kind of thing and have your people prepared for it also. You might be able to do some things, but if you promise too much and can't deliver at first, you will be disappointed. This is not like regular surgery. It is MAJOR surgery.

You will recover very nicely, but must give yourself leaway to do that recovery.

You might also need someone to help you at least for the first week. You will be very weak and wobbly.

You will not be able to drive until cleared by your surgeon, That might be 6-8 weeks. And you will have a lifting restriction which is very, very light, not even a gallon of milk. That's to keep the sternum from shifting and allow all the stitches to heal properly.

It all goes away, I promise. Patience is the key.

 

[Danny]

Nancy,

Thanks for the advice and explaination. I wasn't expecting to be able to do my normal workday stuff, but maybe to tend to odds and ends occassionally for the first few weeks and ease back into it.

The mood swings and stuff does sounds scary! I'm going through that right now, though, because I am so anxious/nervous/depressed about everything. Is it going to be worse after surgery.

At this point, I haven't even spoken with a surgeon, so I have no idea when my surgery might be scheduled. I do have a trip to Hawaii booked in mid-July that I won't want to miss! Hopefully, the surgery can be soon enough to give me time to recover for that or after it. It is the one thing that I am looking forward to to get me through this.

Speaking of which, how long do you think it will be before I feel fit enough to travel? Once there, I'll be spending most of my time relaxing.

Danny

 

[perkicar]

Nancy,

Thanks for the advice and explaination. I wasn't expecting to be able to do my normal workday stuff, but maybe to tend to odds and ends occassionally for the first few weeks and ease back into it.

The mood swings and stuff does sounds scary! I'm going through that right now, though, because I am so anxious/nervous/depressed about everything. Is it going to be worse after surgery.

At this point, I haven't even spoken with a surgeon, so I have no idea when my surgery might be scheduled. I do have a trip to Hawaii booked in mid-July that I won't want to miss! Hopefully, the surgery can be soon enough to give me time to recover for that or after it. It is the one thing that I am looking forward to to get me through this.

Speaking of which, how long do you think it will be before I feel fit enough to travel? Once there, I'll be spending most of my time relaxing.

Danny

Danny,
I've known for the last three years that I needed to have my aortic valve replaced "sometime". Wasn't sure when but was being followed by my cardiologist. I had to have a cath the first time they decided I had a serious stenosis (at least from what they could see on the echo). I think I was more freaked out that time because I went from having a murmur that I'd known about for several years, to being told I would need a valve replaced, maybe soon.
Anyway--three years later I'm scheduled for AVR on May 10. I'm sure I'll be getting more anxious as the day approaches, but right now it helps that I'm active in my personal life. Depend on your support system--you'll be amazed at what people will want to do to help once they find out you're having heart surgery. Don't worry about accepting their support--they WANT to help and this is the only thing they can do for you to get you through the experience.
As for the nurse who wouldn't tell the doctor that you wanted/needed something for anxiety--it's not her call, tell her you'd like to talk to the doctor personally. The docs aren't the ones going through the surgery, you'd think they'd be a little more sensitive to the fact that any surgery, especially surgery on the old ticker, would set the most stoic person into anxiety. For heaven's sake--it's not like you're wanting to get Oxycontin and sell them on the street. Although Xanax is a popular street drug LOL.
Anyway--stand up for what you need (you're the paying customer, after all), get a good PCP. Starkone on the list is from FL, she just went to Boston for her AVR. There are lots of good hospitals and surgeons out there, you need to find the right combo for you.
This list is the greatest, it will definitely be a great help to you as you start to climb the mountain (that's our metaphor for the "surgery"--once it's done, you're on the "other side" and getting better.

 

[Granbonny]

Hi Danny

Hi Danny

Welcome..we have many members who live in Florida... My 2 cents...If your Cardio has you scheduled for a Cath of heart..I'm pretty sure that will tell the tale and you will probably be scheduled for surgery ASAP.... I highly suggest you find yourself a PCP...After surgery, you will probably only see your Cardio again 2 times a year...So, you really do need to see someone now..tell them of your upcoming surgery and tell them to give you something for nerves..I'm sure they will. You really need a PCP for followups..like maybe b/p checks, ect.....In case you get sick and need an antibodic..Have you given any thought to the type valve you want? If mech..you need to be sure you have Antibodics for dental work, ect. and it would be easy for you to have a PCP before surgery.You don't want to have to go to ER for every little thing that might come up health wise... ..Other than that...stay in touch, ask away ..if you need any one on here to help you sort things out...Back to calling for a PCP..be sure and tell the appointment nurse that you are facing OHS...I'm sure they will work you in quickly. Bonnie

 

[Nancy]

Danny-

Right now you're dealing with anxiety. After surgery all the chemical stuff will have you going every which way but sideways for a few days. But you'll be so relieved that the surgery is over. If you know it might happen, you can prepare yourself and it won't be scary to you. Your mind will clear and you'll be back to your old self, takes a short time, that's all.

I believe if you know what might happen it's better. As I said before, not everyone is the same, you might not have all these kinds of things happen, but if they do, you'll be prepared.

 

[Danny]

Bonnie,

Thanks for the welcome. I "fired" my HMO PCP two years ago (I'm on a PPO now anyway) and haven't found another. I want to find the right doctor for me and I really don't know where to start looking. Fortunately, except for the AI, I am as healthy as a horse and rarely get sick. There's no question that I need a PCP but I have so much going on in my life right now that I don't know if I can face the prospect of searching for one at the moment. Will I need to be in a PCP's care before or after surgery?

I haven't even met with a surgeon yet, so we haven't gotten to the point of talking about valve choices. My cardiologist, who appears to be one of the more experienced cardiologists in the area (he is the senior partner in the largest cardiology group in the area), says that he'll refer me to the "best heart surgeon" in Central Florida if the cath confirms what we see on the echo. From the way he talked, I don't think there is much of an "if" involved. Of course, I was in shock at the moment so I don't think everything he said registered with me at the time!

From what I have read, it looks like mechanical valves are overwhelmingly recommended for people my age, but I'll discuss that with the surgeon when the time comes.

Because of the AI, I already take antibiotics before dental procedures.

 

[Danny]

Carolyn,

You seem so calm and together. I envy you!

I am curious, why are you leaving Louisvile for your AVR? I thought there was a lot of advanced medical expertise there -- at least there used to be. I was born in Louisville and lived there until 1988.

Danny

 

[perkicar]

Carolyn,

You seem so calm and together. I envy you!

I am curious, why are you leaving Louisvile for your AVR? I thought there was a lot of advanced medical expertise there -- at least there used to be. I was born in Louisville and lived there until 1988.

Danny

LOL, check with me in 4 weeks and we'll see if I'm still so calm.....

Yes, Louisville has a great deal of heart expertise. I actually contacted Cleveland because of their doing the minimally invasive procedure. They said they'd look at my case and were particularly upfront about the challenges of doing surgery post radiation, information I confirmed online while doing some research. Anyway, I went up there in February for a work-up. Was very impressed with the surgeon and cardiologist they assigned me--both extremely familiar with radiation induced valvular disease. As they both said, I have "complicated" medical history.
It would certainly be easier to have it done here, and have my support system in place--but I feel great about the choice I've made. Believe me, the calmness is a journey, I've had my share of nerves. I think my experiences with cancer have made this a little easier to take, I've been through these mind-wrenching experiences before. And this list makes it MUCH easier to take. Having those who've been through the same thing there to give you a reality check makes it alot easier to deal with!

 

[McCln]

Danny

Danny

Welcome to the greates place on Earth. I can understand your aprehension about all of this. Cardiac caths are sure no longer a big deal because of how much more common it is used for checked for clogged arties and such. You just relax and get educated. I had caths since the age of four years of age back in the late 1960's. It is was more scarry for kids back then. No one explained how it was done then or anything. I was always glad when I did go to sleep afterwards. Nowadays, it is easy and the doctor talks through the whole proceedure to put you at ease. When they saw, after shooting the dye, and annouced that the arteries where clear, I said yeah. Everyone in the room laughed with me. This was last done 4 years ago before my aortic vale replacement. I have a St jude's valve. Knew it would be replaced for years. Was glad when it was done. I feel better and look better. Good luck on your routines and keep coming in with questions.

 

[geebee]

Danny,

Welcome to our world. I will say a few things about your concerns but mostly I just wanted to say hi.

Modesty will go out the window. You probably won't find yourself wanting to join a nudist colony but, by the time all this is over, exposing body parts in a medical situation will be a non-event. Also, as others have said, most medical personnel will show some semblence of care for your privacy. During my caths, just the part of my leg that was needed was exposed so you really don't feel exposed.

Get a GP right away!!! Even if you do not stay with him/her, you need someone to prescribe that Ativan you are taking. I am sure a supervised correct dosage will work much better for you (and it's legal). Anxiety just ain't worth taking up your time right now; it's fixable and you have better things to fill your days.

As far as work goes, is it possible to find someone else that can fill in for you? My S/O has his own computer "problem solving" business and, when he was out for illness, he hired another person doing the same thing to fill in. Since it is mostly remote work, it should be easy to find someone in the industry to handle those tough problems.

You will not know until you are home from surgery just what you will be able to do. It is best to have an alternative. You may be able to work but it is unlikely because you will be on pain meds and still a little "off" from the trauma of surgery and the heart lung machine (we call it "pumphead").

Stay in touch and be sure and ask any question that comes to mind.

 

[hensylee]

Welcome, Danny. You are in a good place to find excellent advice and support.

Work: just don't lift anything more than 5#, then in a few weeks, 10#, etc. No lifting hardly at all for awhile. Bet you can offer your staff some support info for your business, but regular work you can't do for a few weeks - maybe 4 - 6.

Welcome to VR. We will be right along with you all the way.

I am in NW Fl and it's nothing like the rest of Florida. We have HILLS! And country. no groves or cattle. Used to live in Arcadia (for 20 yrs). I miss it - and miss the warm weather.