Hello?

[Jennytheonly]

New here, and I have so many questions I don't know where to start. So I'll say "hello".

I'm having the Ross Procedure performed by Dr. Duke Cameron at Johns Hopkins on 3/12. I'm 36, and this has been hanging over my head for over 15 years, but somehow now that it's here I'm still terrified. I've never even had stitches or broken a bone, and now I'm supposed to let someone saw my sternum in half and sew my heart like it's a piece of fabric. I know I should focus on how much better I'll feel afterward, but it's hard to get past the whole "not-breathing, not-circulating blood, no-heartbeat, chest cracked open, completely at the mercy of a stranger" part.

Anyway. I hope Dr. Cameron is good. I assumed that he must be, since he's the head of cardiothoracic surgery at Johns Hopkins, but I have no idea how to even find his success rate with the Ross Procedure. I hope he's better at surgery than he is at answering emails, anyway.

I just made my appointment for my pre-op appt today. I started crying on the phone. I cried earlier this week at the dentist's office, when I had to tell him that I need him to check for infection because I'm having surgery soon. I never cry, so it's scary to have this little control over myself, and I don't know what to do to get over my fear of this surgery. They're going to have to tranquilize me as soon as I get to the hospital. :-/

I"m scared of the surgery, I'm scared of waking up with tubes in my chest, I'm scared of having the tubes in my chest removed, I'm scared of having a urinary catheter put in, and I'm scared of having it removed. I'm scared of being in the hospital and poked and prodded for 5 days, and I'm considering doing the at-home prep for a colonoscopy just to make sure that there's no chance I'll have to poop in a bed pan.

I'm sorry, I know I sound like a crazy person. At least it'll be over in ... 11 days.

 

[Lucky]

Hello,

Sorry to hear you are so scared although having been told I need more surgery I feel the same all over again.

I hope I can reassure you that the hospital part is so straight forward and I am sure that everyone involved in your care will be so reassuring.

When you wake from surgery you are kept well sedated and although you hear people talking to you, you are very drowsy and the next day you will have forgotten most of that part.They are well aware of pain from surgery and I know that I had a pump which I controlled which gives you pain relief even though you are drowsy.

The urinary catheter was put in when I was asleep and as soon as you can walk and it is taken out again.

The drains are not something you are really aware of and by the time you are they are coming out. That is a strange sensation but nothing unbearable.

You will be up and encouraged to mobilise as soon as possible so you will soon be going to the bathroom on your own.

The part which I do not look forward to is coming home and having to rely on others because it takes time to build up your energy levels.

I do hope this might have helped to reassure you Jenny.Everyone will be so supportive and they are all there to help you get through this experience .

 

[katm]

Jenny,
I am 7 wks post op and I felt and said the same exact things you are expressing. I remember being told that the waiting is the worse part and in some ways it is. While you are waiting your imagination runs wild and you think of all the things that can go wrong. I dont know how you avoid all that but understand that its normal. You'll be fine, it was not as bad as I had imagined pre surgery. Once the operation is over you will be concentrating on healing. It really does go by fast. I wont lie, they do poke and prod you for 5 days, I found that most annoying but they are doing their jobs. The cath is no big deal, in fact I liked having it in till they figured out I didnt want to get up to go the bathroom, lol. I worried so much about the chest tubes and again that was not a big deal, it wasnt painful when they removed them. What stung was when they tied off the stitches to close the holes from the chest tubes. The first two days were not fun but still tolerable. I hated trying to sleep and get interrupted so much and I hated the food, lol. Just made going home so much sweeter.

Try to do things around your house to make your life easier for when you come home. I bought some new things for myself post surgery, something to look forward too when you get home. I know what you are going through but before you know it you will be trying to calm the next newbie, trying to reassure them that they will be just fine. Good luck, feel free to ask any more questions if you like. Oh and dont worry about the poop thing, its such a non issue unless you cant go, they will insist on it before you go home.

Katm

 

[Duffey]

New here, and I have so many questions I don't know where to start. So I'll say "hello".

I'm having the Ross Procedure performed by Dr. Duke Cameron at Johns Hopkins on 3/12. I'm 36, and this has been hanging over my head for over 15 years, but somehow now that it's here I'm still terrified. I've never even had stitches or broken a bone, and now I'm supposed to let someone saw my sternum in half and sew my heart like it's a piece of fabric. I know I should focus on how much better I'll feel afterward, but it's hard to get past the whole "not-breathing, not-circulating blood, no-heartbeat, chest cracked open, completely at the mercy of a stranger" part.

Anyway. I hope Dr. Cameron is good. I assumed that he must be, since he's the head of cardiothoracic surgery at Johns Hopkins, but I have no idea how to even find his success rate with the Ross Procedure. I hope he's better at surgery than he is at answering emails, anyway.

I just made my appointment for my pre-op appt today. I started crying on the phone. I cried earlier this week at the dentist's office, when I had to tell him that I need him to check for infection because I'm having surgery soon. I never cry, so it's scary to have this little control over myself, and I don't know what to do to get over my fear of this surgery. They're going to have to tranquilize me as soon as I get to the hospital. :-/

I"m scared of the surgery, I'm scared of waking up with tubes in my chest, I'm scared of having the tubes in my chest removed, I'm scared of having a urinary catheter put in, and I'm scared of having it removed. I'm scared of being in the hospital and poked and prodded for 5 days, and I'm considering doing the at-home prep for a colonoscopy just to make sure that there's no chance I'll have to poop in a bed pan.

I'm sorry, I know I sound like a crazy person. At least it'll be over in ... 11 days.

Hey Jenny,
The good news is . . . it'll be over in 11 days. The bad news is . . . 11 days can seem like a lifetime!
I don't know if it's too late for you to get some medication to help with the anxiety you're feeling, but it's worth a try. I wish I had been put on meds, but I didn't realize I could ask for help. I've since learned, from others on the forum, that it's pretty common.
I don't remember having a catheter in, and I never used a bed pan. They get you out of bed very early in your recovery, so I think the bed pan is a non-issue.
There's no tried and true method of conquering the fear pre-surgery, but at least in my case, the surgery and recovery were much easier to deal with than the fear I had beforehand.
Anyway, we're here to help you get through the next 11 days and later. Keep posting and feel free to share your concerns. We remember what it's like!:smile2:
Hugs,
Mary

 

[Mom2izzy]

Hello?

Welcome Jenny! The fears are understandable...we've all been there. Have you checked out the sticky topic about what surprises people most after surgery? I think it's in the post-surgery section. Many say it's not as bad as we expected.

The surgery itself: you will be out before you know it, and wake up "fixed"

All tubes going in: you'll be asleep... No worries
Tubes coming out: by the time they come out your desire to have them out will outweigh your fears.

Urinary Catheter: probably worse for the boys.

Drain tubes: as stated above...it feels pretty weird when the come out, but you will feel SOOO much better when their gone. I didn't even realize it was the tubes causing most of my discomfort until they were gone. (I agree that the pinch of tying off the stitches stung, but just for a minute. My advice...have an ice pack ready.)

Pain: They aren't cutting through muscle when they go through the sternum, and there are very few nerves in the area. I had more pain in my back and shoulders (muscle pain)...pain in chest was minimal.

Pooping: constipation will be a more likely problem than having to go in a bed pan.

If you are having a really tough time, get your GP to prescribe something for anxiety. I think they even told me I could take it right up until the morning of the surgery.

Hope that helps a little...

 

[njean]

As others have said, the "wait" can be brutal! Wouldn't it be great if when you're told, they could just sedate you right there and then, and wheel you right into the operating room and be done with it? Yes, that would be ideal but unfortunately it doesn't happen that way.

I had to wait over 6 months to have my first OHS! And back then (1975), there weren't any heart forums or others that could offer you support because OHS was so new and one had very little exposure to it or even knew of others that had had it.

The fear will be there....there's no getting around that but just look around you and see how many of us are here because of this life-saving surgery. I have no doubt that you will be just fine and eventually YOU will be encouraging and supporting others facing it.

Ask your doctor if they could recommend something for your nerves....many Zanax?

Godspeed....you'll be fine!

 

[ramjet]

New here, and I have so many questions I don't know where to start. So I'll say "hello".

I'm having the Ross Procedure performed by Dr. Duke Cameron at Johns Hopkins on 3/12. I'm 36, and this has been hanging over my head for over 15 years, but somehow now that it's here I'm still terrified. I've never even had stitches or broken a bone, and now I'm supposed to let someone saw my sternum in half and sew my heart like it's a piece of fabric. I know I should focus on how much better I'll feel afterward, but it's hard to get past the whole "not-breathing, not-circulating blood, no-heartbeat, chest cracked open, completely at the mercy of a stranger" part.

Anyway. I hope Dr. Cameron is good. I assumed that he must be, since he's the head of cardiothoracic surgery at Johns Hopkins, but I have no idea how to even find his success rate with the Ross Procedure. I hope he's better at surgery than he is at answering emails, anyway.

I just made my appointment for my pre-op appt today. I started crying on the phone. I cried earlier this week at the dentist's office, when I had to tell him that I need him to check for infection because I'm having surgery soon. I never cry, so it's scary to have this little control over myself, and I don't know what to do to get over my fear of this surgery. They're going to have to tranquilize me as soon as I get to the hospital. :-/

I"m scared of the surgery, I'm scared of waking up with tubes in my chest, I'm scared of having the tubes in my chest removed, I'm scared of having a urinary catheter put in, and I'm scared of having it removed. I'm scared of being in the hospital and poked and prodded for 5 days, and I'm considering doing the at-home prep for a colonoscopy just to make sure that there's no chance I'll have to poop in a bed pan.

I'm sorry, I know I sound like a crazy person. At least it'll be over in ... 11 days.

Dear "Jenny the one and only"....you'l be ok, The "duke" is excellent, of that there is no doubt, you don't get to be Chief of Cardiac Surgery and the Johns Hopkins if you are not first rate. In fact you don't get to be a cardiac surgeon if you do not pass rigorous and multiple tests of knowledge , skills and surgical abilities...They will give you some pre-op medication to help settle you, just be open with them and let them know you are a bit anxious...but they are used to everyone having varying degrees of anxiety before surgery, and as for pooing, well, we all poop, and the nurses are used to it, and they won't make a big deal of it, and everyone is scared of surgery to a certain degree, but for me, and I can only speak for me, the tubes in the chest were ok, the urinary catheter was actually great because I could just pee whenver I wanted (they put it in at some stage in the operating theatre as I can't remember it going in, I just woke up with it in place), and being in hospital, for me, was not that bad at all most of the time... I probably would noy do the colonsopcopy bowel prep before hand, just go to the loo normally, because for most of us, they have us out of bed the next day after surgery to get the legs and blood moving, and you can even have a litttle sit on the toilet if you need to depending on how you go...hundreds of people have this procedure every day around the world, you will soon be a member of the open heart surgery club, and soon you will wonder why you were so worried....take care "Jenny the One and Only"...because you are not alone
I had never been in theatre before, I had never taken so much as a headache tablet before, I had never had a urinary catheter before, I had never had tubes in my chest before, I had never had stitches before, and I was a bit anxious, ut I recall waiting on the bed as they wheeled me into theatre and I recall seeibng my surgeon and telling him (jokingly) that I had drawn a dotted line on my chest so he cut me right in the middle of teh sternum, and he said thats great because he had left his glasses at home and didn't want to do a zig zag cut by accident...we laughted and I woke up some hours later and it felt like i had just blinked my eyes bacically...remember, the anaesthetist will actually be sitting at your head and controlling your breating and your vitals and he/she will watch you like a hawk all the time, care for you like you are the most important person in their life at that moment....honestly...they will take good care of you

 

[JimCA]

... 3/12...

Jenny, I think I can say with authority that I know how you feel. I'm getting a new aortic valve and ascending aorta on that same day- March 12. I am utterly terrified. I'm 62, I work on very stressful and complex business matters, and though I often work around emotionally troubling events, I am not given to emotional reactions. Yet, here I am: an emotional basket case. I don't know how others have done this, without totally coming unglued ... In the end, this seems to be an act of trust and faith - not easy virtues under normal circumstances. But I'm reassured by what I read from others who have been down this road ... Good luck to us all, I guess ...

 

[Oilman]

Welcome Jenny, I'm glad you found this site, its a great place to gather more info and reseach others experiences. I am currently 90 days into recovery myself and am doing just fine. Like others have said this is a proceedure that is done with hundreds of people every day with great success. I too suffered fear and panic for 2.5 months prior to operation. I was the kind of person who shook when having to just give blood. I had a hard time with trying not to play the theatrics of the operation in my head, that was crazy, cause it never played out like I was imagining anyways. Today I am a person who underwent a very delicate proceedure with no problems, I just had to show up. Today I am so glad its done and feel that I have been given a second chance, to finish a full life with a heart that is not working as hard as it was prior to the operation, god willing. You wont find anyone on here say that they think they would have been better off not having this repair done, its an extension of life, I'm glad this option is available for us today. Wishing you the best, and a speedy recovery on the otherside. Its all going to be just fine.....

 

[Heart Of The Sunrise]

Welcome Jenny!... and hang in there. What you are going through is normal for anyone on this site. Much of what you have and will go through is very personal as are the choices that you have had to make. I can relate what worked for me. Shock & denial and sleepness nights got me nowhere. Being blessed with a great family doctor who discovered an abnormal EKG, which ultimately lead me to a great cardilogist and world-class surgeon were truely gifts. My key to acceptance and making my choices was learning as much as I could about my condition and my surgeon. I was lucky that what I felt was best for me, my surgeon does all the time. I describe it as a virtuoso guitar player playing guitar behind his back. Dr. Bavaria and Penn do many of these procedures a week. Piece of cake for them. I am in good hands. I am sure you will be too. You have done your homework and are in excellent hands with Dr. Cameron @ John Hopkins. Many on this site speak of a wave of peace that came over them the day of surgery. I pray that as your day and everyone on this site's surgical dates approach they too will feel a sense of peace and trust come over them! As patients we fall asleep and wake up fixed.:thumbup:

 

[Jennytheonly]

Thank you, everyone, for the kind words. I'm trying to keep in mind that nothing you fear ever turns out to be as bad as you thought it would be, but it's hard. (Really, really hard.) I think part of what bothers me so much is the lack of control. My cardio and the surgeon both told me that I'd be dead within 3 years if left untreated. So a choice between dying before I turn 40 or having surgery isn't really a choice at all.

Also, not particularly looking forward to having a big scar on my chest. No more being vain about my cleavage, that's for sure. :-/

But, again, thank you. It's a relief that the catheter goes in after the anesthesia. It's a small thing, but still an unpleasant unknown. At least I'm lucky to have a husband who has the option to work from home, and a mother who is coming for 2 weeks to take care of me, and several friends have offered to bring food. I don't know what I would do if I was alone.

 

[Mom2izzy]

Hello?

Couple things about the scar:

1) Mine is barely noticeable one year out. Not all scars heal that nicely but they can. (Note: I had some kind of superglue instead of staples or stitches.)

2) Look into getting a "mini" sternotomy. It's still not very mini in my opinion, but it is low enough that it can be camouflaged in my cleavage (the person who made my incision also kept it very tight to my breast, so it is completely hidden except on the top end.)

3). Most Importantly: After you make it through something like this...be proud of your strength...wear that scar like a badge of honor!

 

[Jkm7]

Thank you, everyone, for the kind words. I'm trying to keep in mind that nothing you fear ever turns out to be as bad as you thought it would be, but it's hard. (Really, really hard.) I think part of what bothers me so much is the lack of control. My cardio and the surgeon both told me that I'd be dead within 3 years if left untreated. So a choice between dying before I turn 40 or having surgery isn't really a choice at all.

Also, not particularly looking forward to having a big scar on my chest. No more being vain about my cleavage, that's for sure. :-/

But, again, thank you. It's a relief that the catheter goes in after the anesthesia. It's a small thing, but still an unpleasant unknown. At least I'm lucky to have a husband who has the option to work from home, and a mother who is coming for 2 weeks to take care of me, and several friends have offered to bring food. I don't know what I would do if I was alone.

As a young woman, it is normal you would worry about a large scar on your chest but before you become convinced that will happen to you, I just want to mention I had full sternotomy OHS two times in four years. Not only did they open my chest with a very large incision but went back and reopened the same scar.

The first healed nicely and within a year, I felt comfortable wearing v neck tops/dresses and no one gasped at the sight as the scar really was quite faint. When I knew they would reopen that incision, I was sure it would be a thick, ropey mess and I'd have to cover up the rest of my life.

My wonderful Mass General surgeon was sensitive to the concerns we woman have about those scars and did such a magnificent job I can barely find most of my scar now just five years later. If I didn't know the scar was there, I truly would only notice just tiny lengths of it barely visible.

I acknowledge I am a good 'healer' and two abdominal surgery scars have disappeared on my stomach but you might be the same way.

In any case, You well might find after the OHS journey, you'll wear your scar proudly as a brave survivor. Without that scar, you would not be alive in some limited number of years. That scar will save your life.

Hope this helps you a bit.

 

[Rachel]

Hey Jenny, I also wanted to jump in here about the scar - please don't worry about that at all!

I know I was worried about the scar too, but mine also healed within a year - I didn't put anything on it at all for 6 months - no lotion - no vitamin E - no scar guard (or whatever) - nothing... all I did was make sure NOT TO GET ANY SUN on it for at least a year. Now, my scar is barely noticeable, I even took a recent picture of myself wearing a v-neck sweater and noticed that I couldn't even see it in the photo!!!

As for the chest tubes, that was a HUGE relief for me when they took them out - I didn't notice them when they were in - but when they took them out I didn't have any more pain and switched to Tylenol as my main form of pain relief.

I just hope you can manage through these few days, you'll be fine, we're all thinking of you!

Rachel

 

[JimCA]

Good luck, Jenny ... In the end, it's not in our control, which certainly bothers me every bit as much as the small humiliations of this invasive procedure, but the history of these surgeries ought to give us cause for optimist ...

 

[Pat J]

Jenny

Wish I would have seen your post sooner

I had my aortic valve replaced on Feb 15 at Johns Hopkins by Dr Conte

I had all of your fears and still have some

We can recuperate together

Pat

 

[Ovie]

Hopefully the surgery was a success, and all your fears have passed and wasn't as bad as expected!

 

[bradvo]

What Ovie said.

I was going to go on and say I was so constipated after surgery that crapping anywhere would have been welcomed.
I went on a full assult after what seemed like 4 days, told my nurse to give me prunes and whatever else she could shove down me.
I also told her I was going to name it after the rehab nurse, damn she was cranky.:eek2:
Hope all is well
Brad