Awaiting another surgery - Yikes! I'm scared

[Kelly Luisi]

Hello there fellow "heart Buddies", I am Kelly. I am brand new to this web site! I am so amazed to read all your stories and realize I am not alone .

I am awaiting a appointment with my Dr. (I see him every 6 mos) and expecting surgery in the next few months. I am 19 years out of my last surgery, which was when I was 15. Now I am 35 and feeling like a very big chicken . I have two little boys that are 9 and 6 and a very loving husband and family.

I remember alot from my surgery years ago - and all I remember really is the YUCKY part of it being so painful the first few weeks. Does anyone have any advise for me on how to deal with these emotions and also prepare my little boys for what "Mommy" is going to go through.

I anticipate my surgery will be in October @ UCLA with Dr. Lak's. I have congenital heart disease, Tetralogy of Fallot baby. I have had a Waterston Shunt at 16mos, 1st OHS at 7 - a repair to Pulmunary valve, then a replacement in 85. I have had Venticular Tacycardia (heart arrythmia) since I was around 13 , and now have a AICD (Implantable Defibrilator).

My miracles are "2" wonderfully healthy boys. I have been blessed!

Let me hear from any of you that have some Heart soothing advise for my anxious heart .

Thanks!

 

[ALCapshaw2]

Welcome aboard Kelly!

You've come to the right place.

I'm a little confused and surprised by your comment about the intense pain for the first several weeks. I've had Bypass and AVR surgeries and the only PAIN I recall was in the long back muscles following my AVR which was relieved quite well by MASSAGE. After my Bypass, I only recall various degrees of 'discomfort' which only occurred in certain body positions. Pain meds, stretches, and special exercises should keep you reasonably comfortable.

Well, there was also this little problem with breathing after my AVR caused by some chest wall inflamation, presumably a result of someone jabbing the chest tubes in too far. A week of anti-inflamatory meds got that under control.

The first two weeks you will likely feel like you've been run over by a Mack Truck, not from pain, but from the feeling that you just don't have much (any?) energy.

Practice The VR.com Mantra which goes

Breathe, Breathe, Breathe, (Breathing exercises)
Walk, Walk, Walk,
Nap, Nap, Nap (Sleep comes in short spurts for a while)

and you should find that every day you can do just a little more than you did the day before. The Hospital should give you an "Incentive Spirometer" for your breathing exercises. I was told to use it for 10 minutes every 2 hours. This will help inflate your lungs and prevent pneumonia. Believe me, you don't want pneumonia!

NAPS are GREAT. Take one whenever your body says "Enough". A recliner may be more comfortable than your bed for the first 2 or 3 weeks while your sternum begins to heal.

You will likely want someone to be there for you the first week or two. After that, you should be able to do basic self care while up.

DO NOT do any lifting over 5 or 10 lbs for the first several weeks (your surgeon should give you a schedule of when you can lift more, slowly increasing your limits over a 3 month period).

Read over the Post Surgery Forum and you should find more information than you can absorb!

If you need more incentive, just think what will happen if you DO NOT have your surgery, and about those boys who need their Mom. Tell them you will need their help while you get better. That should help them feel more involved and hopefully not so anxious as they see you get stronger and stronger.

'AL'

 

[Babydoll]

Welcome

Welcome

Hi Kelly,
Welcome to VR.com I know the scared feeling way to well. I also was born with TOF 2 surgerys one when I was 2 then 7. now I'll have my 3rd in Sept. the waiting is already getting to me I just want it done and over with. Best thing I have found out is just try living life as normal as I can. And post whenever you want to vent or ask a question helps more than you think it would! I'll keep you in my prayers! And remember we are here if you need us
Stacey

 

[Kelly Luisi]

Thanks for the replies AL and Babydoll - it is sure nice to have some heart buddies. The pain I was refering to after surgery - is the dull pain, the pain of coughing , of moving around and the general ackwardness of having your chest opened up. My biggest fear is just the first month after surgery when my activity level will be so different from what it is now. I am very active and very fortunate that I so far I have maintained my physical abilities to carry on with a active life with busy, busy boys! I know some of you are very fatigue and have struggles with having enough energy to carry you throught the day. Right now I am not there, and that is why I am choosing to have my surgery sooner than later.
Once again, I am so happy to have found this web site - and to know I have some "Heart Buddies" out there! Thanks

 

[Debrinha GT]

reoperations

reoperations

Hello Kelly, what you're experiencing now are some mixed up emotions due to your condition. It's quit normal but you'll see that the more you post and get answers, the better and more confident you'll get. I've already had three MVRs(replacements) all with tissue valves, and when I heard from my cardio a few months ago after getting an echo done, that the valve I've had for over eight years if beginning to go, I felt as if the world was coming to an end at that every same moment. I wanted to find someone I could talk to, a person who could give me all the answers to so many questions, and so on. You see, I didn't even know how to deal with a computer and as for the internet, well, that was something I thought I'd never be able to use because of my very poor eyesight, only 25% is what I have. Anyway, my husband Robert who has always been very supportive, put in a search and found HEARTCENTER ONLINE and started showing me how the internet works. Of course, he had to do it all for me at first but I was willing to learn and find my way around by myself. A few days later, one of the members told me about this site and I have been here since then. I know that sooner or later I'll have to go through the fourth surgery but so far so goo, and it's still a while until the time comes. I hope that this helps you . Feel free to ask me any questions you may have. Take care,

Débora from Brazil

 

[labguides]

You will be in excellent hands with Dr. Laks -- he is our HERO. He repaired our daughter's mitral valve --Jan. 2004. Have you already seen Dr. Laks? If not, is your cardio at UCLA?

 

[Paul_R]

Hi Kelly,

I also have several congenital heart defects, my last surgery was 33 years ago (I am 40 now). In September I will be going in again, this time also with Dr. Laks.

Labguides was a great source of information for me regarding Dr. Laks (She and I have corresponded directly thru emails). For me educating myself on what to expect leading up to surgery and learning all I could about my particular defects has helped aleviate(sp?) much of the fear.

When I met with Dr.Laks last week I asked him how pain was managed, he said that they will give you a little device that you could use to self adjust the pain meds while you are in the hospital.

Make liberal use of this board with any questions you may have. Most of the fear is in the unknown, once you know what to expect a lot of the fear should go away.

Are you being followed by the UCLA Adult Congenital Heart Disease Clinic? It is my understanding that adults with congenital heart disease are a unique group and need to be followed by those that specialize in the care of us.

Good Luck,

 

[jenny]

Hi Kelly, Welcome aboard, I myself am being such a baby, I have been crying so much that I am sick to my stomach. This will be my second heart surgery and I am so so afraid. I guess I am just venting to all, and I know I am being such a baby, so please forgive me. I am so scared , geeeeeeeeeeeeeeeezzzzzzzzz .........thank you for listening to me.......Jenny

 

[Susan BAV]

Wow!

Wow!

Hi Kelly! And Welcome!

I haven't dealt with the specific heart problems you have but you can read my story under "Aortic Valves" in the story section.

I ended up going up to Los Angeles for my surgeon consultations and surgery and don't know anything about Dr. Laks; hope all goes well for you!

 

[danielgilboa]

Hi Kelly,

You were asking for ideas how to prepare yr 2 kids. I would like to share very good experience I had with my small guys.

I have 6 and 2.5 yr old boys. The 2.5 was an easy one, he understood very little. You have 6 and 9. So this is what we did with our 6 yr old.

I got a stethoscope.
I let Gal listen to his own heart. He could describe what he heard as boom-boom-boom. Then he listened to his mother's and brother's heart. Then I let him listen to mine. I had a huge murmur from the MVP and regurgitation. He could describe it as boom-puuuush-boom-puuuush. Then we looked at some animated hearts and learned about valves. Then we understood why Dady's heart makes this noise, and what is wrong with the valve. Then we watched my Echo and he could identify the flappy valve. The last stage was to say it needed to be replaced and we viewed pictures of mechanical valves. We spared the "how they get there" part from him which he figured out weeks after the operation.

I had him visit me on day 3, when most of the tubing was out and I could speak pretty well. He was very curious and supportive.

This worked very well for my little guy, think out slowly how you want to prepare yours. They deserve good preparation that will give them enough to hang on to without scaring them too much.

Keep us posted

Daniel

 

[ALCapshaw2]

What a GREAT way to involve and educate your son Daniel!

What was his reaction when he figured out 'the rest of the story'?

What does he think about it all now?

Just curious,

'AL'

 

[Abbanabba]

Hi there Kelly,

Welcome to the board - you've found a wonderful support base right here!

Like you, I'm also a ToFer. I had a BT shunt at 18 months and my first surgery when I was 5 (..I'm 32 now..). I was told a while back I'll be needing my pulmonary valve replaced (..although there's a little contention as to when exactly - long story!..) so I can really appreciate how you, and Stacey, must be feeling right now. I must admit though, I really am at the point where I want to get it over and done with so I can start doing things again!

Anyway, I'm glad you found our happy little family here. Feel free to ask questions, vent, or just chat.

All the best
Anna : )

 

[Kelly Luisi]

Thanks for all the great posts and Daniel that was great advice on how to prepare my sons.
I am getting to the point where I just want to get this thing out of the way - like you said Anna. I want to move forward with my life. You all offer such support to me. I am so appreciative and thankful for all of you and a place to come and be amoung a group that truely understands this journey.

I have so many people that nod their head, and say they understand...and don't be afraid it's a piece of cake... but they have NEVER been there. They have never walked in my shoes!
It is nice to have "this" family here to vent and ask questions and just offer an ear to. We are in this together and I feel blessed to be here. I am truely happy to have found this board and such wonderfully supportive "Heart Buddies"

Thanks, Kelly

 

[danielgilboa]

Hi Al Hi All,

When my son figured out "they needed to get there" it was after I was home already. I managed to give him a softend version of the truth, he cried a bit but we moved on to something else. He is very aware of my incision and very careful not to knock around my chest. The 2.5 yearold does not realy understand, and he wacked me a few times with his head or elbows. That hurt. I could see stars once. But being able to mess around with them is worth it. Now i am not that sensitive any more so it is less of an issue.

On the education - Gal went to school explaining to the teacher what was wrong with his daddy and what they needed to do. She had all his class mates say a special prayer for me on the morning of surgery and asked the science teacher to give them a lesson on the anatomy of the heart. Gal stood up and gave his little bit of lecture.

It is worth getting the kids' teachers involved too.

 

[Debrinha GT]

Bruna has worked out for herself

Bruna has worked out for herself

Hi everybody, I'll be having a fourth operation one of these days and my seven year old daughter seems to know quite a lot. She was born after my third one and just got used to seeing me with the scar and knows why I can't do certain things. Since the subject about my heart comes up a lot, she ends up overhearing a lot of the things which have become very normal now as far as she's concerned. Whenever she asks me the whys, I just answer thus trying to make it sound ok and don't get into much detail. I've never managed to beat about the bush and I think she's kind of got used to it. I tell her not to worry because the operation is to make mummy's heart better and she accepts it.

Débora

 

[Kyla]

HI! My daughter just recieved her pumonary replacement for TOF at 10 years old. You were saying your Arrythmia began at 13. Was that before or after your valve replacement? I have all kinds of questions for you about your pregnancy and are you having a mechanical valve this time etc. Anything you could share with me and my daughter would be appreciated!

 

[medtronic of borg]

Hello

Hello

I would just like to say welcome and Dans approach sounds good to me!
Med