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]

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... :eek:..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]

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.

[KAJ]

Hi Danny,

The members of this site are truly wonderful. They helped me to accept the fact I needed surgery and helped to calm my fears. They are also a great encouragement as I recover.

The heart cath is really not that big of a deal. The hard part for me was trying to keep my right leg still for 5 hours. I just had my AVR replaced and an aortic aneurysm repair at the Univerisity of Alabama Hospital Birmingham on March 16th. I live in Jacksonville, FL. The primary reason my cardiologist sent me there was because of scar tissue from major chest surgery at the age of 22. I am now 47. I tried to keep parts of my body covered but a nurse said "there is no modesty in the hospital."

As far as work is concerned, I agree with Ross. Before I left, I had to train another co-worker my job. He is already swamped with his own stuff and there is only the 2 of us in our office. I also stated I would check my work e-mail from home every day after surgery and try to help out. Boy was I wrong. I check and respond to e-mail every few days if that. I just do not have the physical or mental energy to deal with work stuff as often as I thought I would. Normally I am not the kind to sit around. However, I definitely see the need to rest. Earlier this week, the physical therapist for my cardiac rehab stated: Karl, you must remember, your body may feel like you do more but your heart still needs time to heal." In addition, you will not get much rest in the hospital.

Please do not hesitate to ask questions from me or anyone else in the group.
Keep us posted when you learn your surgery date.

Karl Jaeger

[KathyH]

Danny, Just want to add my welcome too! You already got alot of great advice. I just wanted to give you my opinion on the Ativan. It is addictive and since you are taking it without your own prescription, I would get a PCP and tell him about it. If you are taking it three times a day, it is not something you can just stop. Call someone and discuss it with them.
Kathy H

[Ross]

Danny, Just want to add my welcome too! You already got alot of great advice. I just wanted to give you my opinion on the Ativan. It is addictive and since you are taking it without your own prescription, I would get a PCP and tell him about it. If you are taking it three times a day, it is not something you can just stop. Call someone and discuss it with them.
Kathy H
Ativan is evil, I'll testify to that! Hospital had me addicted to it and it took almost 8 months to get squared away and detox. Of course I had a wee bit more then you. 2mg continuous IV drip for how many days I do not know, but Oh man, the addiction was hell.

[tobagotwo]

It does hang over you like a greasy, clinging cloud. However, you can look at it in the light that now you are going to do something about it. You're going to take away its hold over you, and there's nothing it can do to stop you from taking back control.

As far as work, you may well find there is apt to be some difficulty in concentrating for a while, perhaps due to leftover anesthesia. It's not uncommon.

If you do find yourself able to work, please do three things:

- Make sure you get out and walk a couple of times a day - good, long walks

- Stretch frequently

- Keep your feet up when you're on the keyboard

Besy wishes,

[Karlynn]

Danny welcome!
One thing I'd like to mention (others have covered a lot for you) is that you will probably feel much better after you've recovered from your surgery. When slow deterioration of a valve occurs, our bodies are often making small compensations for it that we don't even realize. Many here have come back after recovery and said - wow, I was worse off than I thought before surgery. So try to look on that as a positive.

And get a doctor to prescribe something for anxiety. A doctor not doing so is just cruelty.

[PapaHappyStar]

Hi Danny,
My job might be comparable to yours -- I get to solve plenty of problems and sort out software bugs. I didnt feel like looking at code for around two months post-op and didnt get back to full speed until 3 months -- but at this point ( 4+ months ) I am able to concentrate better and for longer stretches ( although physical activity still tires me -- but thats probably from being a bit unfit post-op ).
All the best as you prepare for this -- many here to some extent or another understand your feelings and anxiety.
Regards,
Burair

[Randy & Robyn]

I can certaiinly sympathize with all of your anxieties, fears and outright terror at the thought of open heart surgery. I am following the same road as you are right now. I have aortic insufficiency and have two consultations with surgeons next week.

I'm sure you have been told how small the risk of major problems with this type of surgery is, especially in people in our age group. I am also aware that it still scares the heck out of us and nothing anyone says is going to change that.

I have learned from others in this forum that, with our condition, it is good to have the surgery while our hearts are in relatively good shape. The only thing I worry about is that I may still be in good enough shape to outrun the doctors and nurses during a last minute escape attempt on the day of my surgery.

Randy

[perkicar]

I can certaiinly sympathize with all of your anxieties, fears and outright terror at the thought of open heart surgery. I am following the same road as you are right now. I have aortic insufficiency and have two consultations with surgeons next week.
.........
I have learned from others in this forum that, with our condition, it is good to have the surgery while our hearts are in relatively good shape. The only thing I worry about is that I may still be in good enough shape to outrun the doctors and nurses during a last minute escape attempt on the day of my surgery.

Randy

LOL, Randy, I like that idea. Although make sure it's before you're changed into your gown so we're not showing our behinds to the world as we dash through the front door of the hospital! And that our families are there with the car running so we can make a quick getaway.

[Ross]

Although make sure it's before you're changed into your gown so we're not showing our behinds to the world as we dash through the front door of the hospital!
Ah but this is where you foil your own plan! If you take off butt naked, most visitors and the general hospital population will turn their heads away and won't be able to identify you as you book. Now Doctors and Nurses, well they see it as common place and it just isn't effective on them. I thought if I ran around on the floor nude, they'd let me go home early. They weren't even the least bit impressed and in fact ignored me. :confused:

[PapaHappyStar]

Ah but this is where you foil your own plan! If you take off butt naked, most visitors and the general hospital population will turn their heads away and won't be able to identify you as you book.

Or they might suffer temporary visual problems from staring too hard at bright objects... either case you get off scott free ... not a stitch of blame

[Danny]

Hello all,

Tomorrow is my cath. I was feeling pretty good about it until last night when I started to slip back into dread and depression. Silly, I know, but there nonetheless.

I am feeling a little bit better today. I dread it (and dread more what I know is coming soon after) but I just want to get it over.

I go in at 1:00 and the procedure is scheduled for 4:00. I have been told I will be there overnight. I have never had any sort of procedure such as this and I haven't spent a night in a hospital since I had rheumatic fever at age 12. I am so medi-phobic (my own word). What a whimp I am!

I would really appreciate it if any of you could tell me exactly, step-by-step, what to expect before, during and after the cath. It might ease my mind a bit.

Also, do you have any suggestions or advice? What should I take with me? I have downloaded some soothing music to my iPod. Do you think they would let me listen to that during the procedure?

Thanks,
Danny

[CCRN]

Hello all,

Tomorrow is my cath. I was feeling pretty good about it until last night when I started to slip back into dread and depression. Silly, I know, but there nonetheless.

I am feeling a little bit better today. I dread it (and dread more what I know is coming soon after) but I just want to get it over.

I go in at 1:00 and the procedure is scheduled for 4:00. I have been told I will be there overnight. I have never had any sort of procedure such as this and I haven't spent a night in a hospital since I had rheumatic fever at age 12. I am so medi-phobic (my own word). What a whimp I am!

I would really appreciate it if any of you could tell me exactly, step-by-step, what to expect before, during and after the cath. It might ease my mind a bit.

Also, do you have any suggestions or advice? What should I take with me? I have downloaded some soothing music to my iPod. Do you think they would let me listen to that during the procedure?

Thanks,
Danny

Danny,

I think you might be pleasantly surprised about the cath. Many people I know find it very interesting and actually watch the procedure on a monitor.

Basically, you're covered and kept warm. Your groin area, usually right, is cleaned off with some red stuff called betadine (might feel cold) and the cardiologist will give you an injection of numbing medicine in the area that will feel sort of like a little sting. After that you might feel a little pressure in the area when he/she inserts an access cath. You might get a warm feeling when the dye is injected but everyone I know denies any significant discomfort during the procedure. At completion, pressure will be applied to the site which is not real comfortable but not considered painful by most and a large dressing will be placed on the area. The thing most people complain about is having to lie without bending the affected extremity for several hours. Most places allow patients to listen to music they bring and I suggest a good book for the post procedure time. Is this the information you were looking for?

[marg]

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!
my surgery is in 4 days danny so i understand your fear. i'll hang in there if u do

[Danny]

my surgery is in 4 days danny so i understand your fear. i'll hang in there if u do

Marg,

I'm rooting for you! I almost envy you because you'll be on the way "down the mountain" while I am still dreading the climb.

Danny

[gadgetman]

To Danny, From Danny :)

Welcome aboard and a lurker no more.

Good luck on your cath tomorrow. As one who as been thru at least three I can say its easy. They are going to give you something to get you in a good mood (and I mean GOOOOOOD Mood :D ). The room will be cold (I commented that they could hang deer meat in there during my second trip) but you will be quickly covered by warm blankets. They are real good about moving you about while keeping your "equipment" covered (but in the mood you will be in don't think you'll really care :) ) As CCRN said they will clean your groin area with the cold stuff (usually warned before hand) and you will probably feel a slight sting from the numbing medicine in that area. You may also experience a pressure feeling when they start their trip. The dye always gave me a slight warm rush (again, they will usually warn you) but nothing uncomfortable. It will be over before you know it and the Doc will have the readings he needs to make further judgement. They will place a heavy compress over the groin site to limit bleeding and make you lay flat and not move. They will give you something for the discomfort if you need it (don't be afraid to ask). This will be the time your music and something to read may come in handy (I just took another nap). Your stay in the hospital is probably because of the timing of your cath. I went home after 6 hours during my first, stayed in a hospital overnight for my second (only because we were 100 miles from home and I didn't want any surprises), and went home after about 4 hours on my last. Just consider your overnight stay a "training session" for your upcoming surgery :D .

Good luck and,

May God Bless,

Danny

[Nancy]

Last cath Joe had, they closed the wound with a collagen (I think) plug, and he didn't have to lie so still, and no heavy long term compresses. I guess each one is different.

[Karlynn]

Danny,
Best wishes on your cath tomorrow. It's not exactly a ride at Disney World, but all in all, not horrible. Just think of it as one of the things you need to do in order to get a wonderful, healthy life back on track.

[Danny]

They are going to give you something to get you in a good mood (and I mean GOOOOOOD Mood :D ).

Danny,

Given the funk I am in, I could really use some "good mood" stuff right now, so I guess at least that's something to look forward to!

Danny

[marg]

Marg,

I'm rooting for you! I almost envy you because you'll be on the way "down the mountain" while I am still dreading the climb.

Danny
THANKS FOR THE ROOTING DANNY, SINCE THIS WAS MY FIRST DAY HERE IM GLAD I HEARD A REPLY.GUESS THIS A REAL PLACE TO TALK ABOUT IT IF I COULD JUST FIGURE IT OUT HEHE. THANKS AGAIN AND CHIN UP I ENJOYED WATCHING THE ANGIOGRAM SCREEN KINDA COOL TO SEE YOUR HEART BEATING.
MARG

[ALCapshaw2]

The Cath 'table' is hard and flat. I usually ask for a pillow under my knees and a small folded (hand) towel under the small of my back. MUCH more comfortable.

If you are REALLY freaked out, tell the nurse or technicial. When the time comes, they can adjust the amount of VERSED to place you anywhere from "I don't care" to "I don't want to know or remember a thing".

FWIW, I like to watch the monitor to see the catheter weaving around my heart arteries. I lost count after 12 cath's (I didn't want to know which one was #13 :D )

'AL Capshaw'

[BionicBob]

Danny,

I can't add to the good practical advice that's already been offered but just wanted to say I was apprehensive before my first cath just before last Christmas, too. I, too, had spent little time in a hospital for any kind of "procedure."

I think back on the cath now as being far easier than I had imagined. As far as modesty, the OR nurse was very considerate in saying she was keeping the personal equipment covered (though that was maybe the least of my worries). I don't remember any rough pain -- just a warm rush when the cardio wanted to do a release to get a better view near the end of the procedure.

I'm sure you'll do fine. Be sure to let us know when you get home

[geebee]

my surgery is in 4 days danny so i understand your fear. i'll hang in there if u do

marg,

I have added you to our calendar. Please stay in touch and let us know how things are going. Is there any chance you can get someone to post for you after your surgery?

Take care.

[Danny]

Hi, everyone.

My cath was yesterday and I did just fine. I was in a fog on the drive to the hospital and in admittance, but once things got going I just went with the flow. This was my first time having any sort of invasive medical procedure done. They put the IV in my wrist instead of the back of my hand, so that got to be uncomfortable after awhile. As for the modesty thing, I was "exposed" a lot more than I was led to believe by you guys ;-) but I just put it out of my mind and it was OK.

Overall, I think the experience will make it a little easier for me to face going in for the surgery. The hospital stuff is not quite as scary as it was before now that I've been through a little of it.

One of the highlights was a young technican in the cath lab who had OHS 3 months ago. She had bypass surgery for a congentical problem and she was very reassuring.

The test results: The aortic valve definitely needs to be replaced but not the aortic root (I suspected it might since my cardiologist talks about how enlarged it is -- the surgeon might differ). They want me to have a TEE sometime next week to give the surgeon more information. After that, I'll meet with the surgeon who my cardiologist thinks is the best in the area.

Question: When I work up this morning, I noticed some dried blood that had evidently leaked under the bandage and down the crease of my groin while I was sleeping. Is this normal?

[bvdr]

(Asked by Danny) Question: When I work up this morning, I noticed some dried blood that had evidently leaked under the bandage and down the crease of my groin while I was sleeping. Is this normal?


Danny, It is very common. As long as it has now totally stopped and you are not getting increasing pain and/or swelling at the site I think you are still in the normal range.

[ALCapshaw2]

Can you feel a 'lump' under the bandage?
If so, you may have a "Hematoma" and
should probably at least advise your cardiologist.

The 'usual' treatment is to simply rest with
your leg elevated (or in bed) and eventually
it will go down. The one time I had a hematoma
I don't recall being put on any medication but
when I severely bruised my shin, I was told
that Coumadin is often prescribed but since I
was already on it for my mechanical valve,
that I should simply elevate my leg as much
as possible.

'AL Capshaw'

[Danny]

AL,

I don't feel any lump, but then the bandage is thick so it would have to be pretty large for me to feel anything. I have some soreness but it has gotten better through the day. There hasn't been any more blood since last night.

Danny

[ALCapshaw2]

AL,

I don't feel any lump, but then the bandage is thick so it would have to be pretty large for me to feel anything. I have some soreness but it has gotten better through the day. There hasn't been any more blood since last night.

Danny

It sounds like you are having a pretty normal recovery from the cath. I only had one hematoma from a cath but it was HUGE, about the size of a Hostess Twinkie. Most likely it developed because I went back to work too soon and was 'over-doing it. OR, maybe it might have just happened anyway. It went away but I had to take a week of 'rest' to let it go down. After that, I was always pretty careful for a few days after subsequent cath's.

'AL'

[ar bee]

according to my cardio, the collagen is a mere question of whether your insurance covers for it or not. The plug costs the equivalent of USD 300.- where I live and is considered as non-essential to the procedure.

The plug certainly makes the "hours after" much easier.

well2allofu
ar bee

[tobagotwo]

Danny,

As far as exposure, it really wasn't an issue during my cath. Of course, I didn't have a cute cath lab nurse, either.

You're a lot younger, so maybe they figured you were worth exposing... :D

Best wishes,

[Danny]

Bob,

The "exposure" was mostly after cath lab while the nurses were applying pressure and then bandages. If they had any un-professional motivation, I'm sure they were sadly disappointed! ;)

Danny

[Ross]

Even when they are impressed, they never show it, so don't worry about it. Modesty at a hospital is completely out of the question.

[Wise]

Even when they are impressed, they never show it, so don't worry about it. Modesty at a hospital is completely out of the question.

You're right about modesty Ross. I was allowed to shave myself prior to my catheter ablation. My shaving job didn't suit the nurses, so they did it anyway. This kind of thing is hard on us non-exhibitionists.

Danny, I am glad you're doing well. It is good that we don't get "ratings" from the nurses though.

[gadgetman]

Even when they are impressed, they never show it, so don't worry about it. Modesty at a hospital is completely out of the question.

Modesty????? What Modesty????? You should realize something is up (so to speak :) ) when they hand you that gown (what, it's used in nudist colonies :o ????). In the next several months you'll get thrown (gently of course), moved, rolled over, bathed and poked. Modesty will go out the window (or down to the floor :D ) almost immediately. When I had my 4 week follow-up visit with my surgeon his female assistant did the initial exam. When it came time to look at my leg scars (I had 3 by-passes done at the same time) I started pulling up the leg of my pants. She said, "no, no, DROP THEM". Oh well, undo the belt, drop the zipper, and "HERE I AM" :D :D . Did notice no one was fighting to get into the room at the time :confused: :confused: :confused: . Oh well, know when to hold them, know when to fold them :D :p .

Otherwise, good that you came through the cath OK. More new and interesting things to come :D :D .

May God Bless,

Danny

[Ross]

This kind of thing is hard on us non-exhibitionists.
Another one of my many jobs here is to corrupt you. I'll soon have your running naked and carefree with the best of us! :D

[bvdr]

I too am very modest and prefer to be covered well. I have also gone into surgery several times knowing almost everyone that was going to be in the operating room. I can't say it didn't bother me but I really knew that they could have cared less about what I looked like and were more concerned about doing a good job. As a nurse, nakedness was sure preferred to all those clothes that just got in the way and slowed things down. It sometimes seemed that we spent more time in the winter undressing and redressing little old ladies in the ER than we actually spent treating them. I guess it is all about what side of the sheet you are on.

One day soon after my OHS my husband told me how messy I looked when he and the rest of the family came to see me right after surgery. He then made the comment that he would have thought someone would have at least covered me up with a sheet before they all came in. My response was, "Oh, no! You must be kidding!". He laughed and said he was kidding about the sheet but not about the looking very messy.

[LisaD0365]

I too am very modest and prefer to be covered well. I have also gone into surgery several times knowing almost everyone that was going to be in the operating room. I can't say it didn't bother me but I really knew that they could have cared less about what I looked like and were more concerned about doing a good job. As a nurse, nakedness was sure preferred to all those clothes that just got in the way and slowed things down. It sometimes seemed that we spent more time in the winter undressing and redressing little old ladies in the ER than we actually spent treating them. I guess it is all about what side of the sheet you are on.

One day soon after my OHS my husband told me how messy I looked when he and the rest of the family came to see me right after surgery. He then made the comment that he would have thought someone would have at least covered me up with a sheet before they all came in. My response was, "Oh, no! You must be kidding!". He laughed and said he was kidding about the sheet but not about the looking very messy.

I have worked in the nursing profession for 25 yrs...(egads....that made me sound old... :eek: )...and whenever someone was being modest...I tried my best to reassure them that it was fine...I see tons of people...doesn't bother me...but made sure they were covered all the time when/where applicable...but when I was having anything done...I was so modest and the nurses would tell me the same thing I would tell my pts...and I was like yeah right...but now I am the patient....once when I was in labor with my little girl 2 yrs ago...I was being checked for dilation and the door was wide open...and no curtain...when I complained the nurse said..NOONE IS IN THE HALLWAY...SO DON'T BE SUCH A PRUDE..BESIDES...YOU WEREN'T MODEST TO GET YOURSELF PREGNANT......I complained later to the nurse manager...so I hope something was at least said or done...My hospital of choice is a teaching hospital so most of the time there are student doctors following the doc and you lose most modesty...when I went in for my MVR...I had so many students coming in to listen to my heart...(never heard stenosis before I guess)...I should have charged them...would be a rich woman.... :D

[KAJ]

Hi Danny,

Glad to hear the procedure went well! My cardiologist also thought my root looked enlarged. After the surgery, the first thing I asked the surgeon (once I was off the ventilator) was about the arotic root. He said it looked fine. Hopefully yours will as well.

Karl

[kcpub]

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.



Dear Danny,

Thank you for sharing your true feelings, as I'm sure that many reading can relate. My husband (43) just found out about 10 days ago that he needs to have an AVR, so in a whirlwind, he's had to accept this, research valve options, etc. I am hoping he will read your post (and these others) and gain a sense of comfort from those in his same situation.

His cath and surgery are scheduled for 4/26 and 4/27.

KC

[Danny]

It has been 5 days since my cath and I have noticed for the past several days that I sometimes have a slight tingling sensation in my leg -- almost like it is going "to sleep" but not near that strong. The cath site itself looks very good but the brusing around it started to show up a couple of days ago. I think the brusing might have started to decline now.

Is this all normal?

[Danny]

Dear Danny,

Thank you for sharing your true feelings, as I'm sure that many reading can relate. My husband (43) just found out about 10 days ago that he needs to have an AVR, so in a whirlwind, he's had to accept this, research valve options, etc. I am hoping he will read your post (and these others) and gain a sense of comfort from those in his same situation.

His cath and surgery are scheduled for 4/26 and 4/27.

KC

KC,

Welcome! I think you and your husband will find a lot of support and comfort here. When I got the news, I felt all alone, confused and terribly frightened. I'm still a bit frightened but the people here are wonderful and have helped me so much!

In a way, I envy your husband's situation. I still haven't met with a surgeon and, though I know surgery is in my near future, I don't have a date. Everyone says the pre-surgery anxiety and waiting is the worst part. Your husband will be in and out and on the road to recovery before he has much chance to think about it!

My mother has a saying: "If you have to eat a toad, it's best not to stare at it for too long!"

Danny

[Marie]

Danny welcome!
One thing I'd like to mention (others have covered a lot for you) is that you will probably feel much better after you've recovered from your surgery. When slow deterioration of a valve occurs, our bodies are often making small compensations for it that we don't even realize. Many here have come back after recovery and said - wow, I was worse off than I thought before surgery. So try to look on that as a positive.

And get a doctor to prescribe something for anxiety. A doctor not doing so is just cruelty.

You give me much incentive after reading your note to Danny. I am having avr on the 25th of this month. For the past several months my physical activity has been decreasing. Even doing my housework (like vacumning) has been almost impossible. You give me much hope that the energy level will increase after surgery and I can live a normal life again. Marie

[Laurz]

Randy---no running. Just nike, (do it). I can attest to the fact that while you are feeling fair now, with enough time that will change and change quickly. Just had my cath dont a little over a week ago. Confirmed the Mitral Regurg was severe, found an 80% blockage in circumflex. Got my reports and 'read' that I also have a couple of little blockages, a lesion in another artery, and my aortic is displaying some insuffeciencies. Met with surgeon on Thurs. Am suppose to meet with an internist this week to get iron up a wee bit, and am "hopefull" yes I said hopefull that I will be fixed within the next two weeks. Am excited about feeling like so many here have said they feel post surgery- WOOOHOOOO!! At least we live in an era where all this is possible. Keep smiling :>) Laurie

[Marie]

Danny, I share alot of your thoughts. I am scheduled for avr this Monday a.m. I am a senior and have a large family which it really saddens me to see them having to endure this. Today they are all coming to our home for a large barbeque and that makes everything much better. I am trying to keep a positive attitude toward the surgery and it helps me a lot to think of again being able to accomplish what I could do only a few short months ago. I feel the drs. are going to help me have a quality life again. Hang in there, we'll both be better. Marie.

[Bionic Man]

I have suffered a lot from anxiety (common with marfans) and was approaching surgery with a lot of dread. Ultimately everything was better/easier than I expected. I found the cath a harder experience than the actual surgery.

Make sure you have a doc you trust and resolve in your mind to have a good attitude. You can allow yourself to be scared but with each stage you overcome, take mental note that you overcame that and are doing great and it's just going to get easier.

David