New member...repair scheduled

[Janie]

Well, I've been "in the waiting room" for 2 years. Its time now for me to get my valve repaired. I'm scheduled at Cleveland Clinic with Dr. Mihajevic August 5th. Not really nervous, just kind of wondering what I should expect. Any help or advice is appreciated!

 

[Tbone]

Ask your doctor & your surgeon all the questions you have. Get them answered to your liking, and then decide what it is you want to do. When you go in for surgery relax & do all that they tell you to do. Do not sit there & worry, worry causes stress which is the last thing you need.

When you get out of surgery have friends & family around to help you in your recovery. You will not be able to lift anything heavy, or stress yourself in any way. Some people recover quickly & some it takes longer. If you have any setbacks, which some people do, do not get to worried.

A nice bell to keep with you is fine for summoning your "support staff" is a good idea. If you have people that like to hang outdoors consider an air horn for quicker service.

What I can say is to take a good pair of slip resistant slippers with you to the hospital. It's better than the socks they give you.

Good luck & God Bless.

 

[ponytaila1a]

I am nearly three weeks out from my repair at CC. Waiting is the worst part....so I would say enjoy your month of July. Have a list of questions for your meeting with the pre-surgery staff. The nurse hotline at CC is great for any "generic" questions you may have in your preparation. Unlike Tbone....I LOVED the "sticky bottom" socks they gave me at CC...complete with smiley face........I found they took care of everything including a toothbrush, toothpaste and hair brush. Are you having the robot?

 

[Janie]

Its great to hear from you. I was told that they will either go minimally invasive with a 2" incision on my right side OR if they go robotically they go through the groin. They want to evaluate all of my tests and then decide. I have to have my cath done on the left side to keep the right side open for the possible robotic choice. I'm not sure why one is chosen over the other. Recovery time is about the same or so they say. What did you have done and how is your recovery???

 

[Janie]

Thanks TBone...I love the idea of the bell. That is on the list of "things to get Mom"...right underneath a laptop!

 

[ponytaila1a]

I was a candidate for the robotic, but my CT showed something that did not allow them to use it. I had the right-side incision. My sternum was not broken. But the trama to my body would have been less with the robotic equipment according to the surgeon. Smaller incision. They told me the robot would be through the right side...but not the groin....perhaps this is a newer method. When is your pre-testing?

 

[Janie]

You are giving good info. This is great. I've already had my TEE and CT scan done here in Kalamazoo. I've got to get a cath done July 13th. My cardiologist here was hoping to not have to do the cath but Cleveland pretty much requires it. I plan on going to Cleveland around August 2nd or so with the surgery on the 5th. I AM going to enjoy July. We've got a wedding to go to in Reno and a cruise scheduled for July 25th - July30th. I hope I don't need to repeat many tests, especially the TEE...I've had two of those and the first time I woke up with that darn tube down my throat and I could feel the instrument in my chest. YUK. The second time I told them to give me plenty of meds to keep me out.

 

[cherylchapa]

Welcome and good luck. No advice for you as we are waiting too. My 10 year old son is having his pulmonary valve replaced so I will be watching this thread and taking the advice if you don't mind. I like the "enjoy your July" advice. I second that!

 

[Marcia58]

Janie,

I had my repair done at the Univ of Chicago on March 26,this year. I was hoping for the robotic, but my surgeon said that with my other health issues (Parkinson's, clotting disorder) he wanted to do the minimally invasive, because the robot would have me on the pump longer.

My incision ended up about 5 inches long, but is hidden in the crease under my right breast. I was out of ICU in about 24 hours, and discharged on the 31st. When I got home, the only restrictions were: No lifting more than 10 pounds--on the right side. No sex for a week. No driving while on narcotic pain meds.

Five weeks post-op, I went for a walk with my 2.5 year old grand-daughter, while I was babysitting her. We walked about 10 blocks. Well, actually she walked about 5 blocks and rode on my shoulders the other 5. We repeated the walk 2 days later, and 2 days after that! Six weeks post-op, she stayed at my house for 3 days, while mommy was having her baby brother! Guess I qualify as a success story.

If you have ANY questions, feel free to ask away!

Marcia

 

[ponytaila1a]

You are giving good info. This is great. I've already had my TEE and CT scan done here in Kalamazoo. I've got to get a cath done July 13th. My cardiologist here was hoping to not have to do the cath but Cleveland pretty much requires it. I plan on going to Cleveland around August 2nd or so with the surgery on the 5th. I AM going to enjoy July. We've got a wedding to go to in Reno and a cruise scheduled for July 25th - July30th. I hope I don't need to repeat many tests, especially the TEE...I've had two of those and the first time I woke up with that darn tube down my throat and I could feel the instrument in my chest. YUK. The second time I told them to give me plenty of meds to keep me out.

WOW!!! You are going to enjoy July. I only had the one TEE and then the one "on the table" during surgery. The anestheiologist commented "those are the best...you will be asleep". I also had the mini thoracotomy...my only restriction is lifting. Be in touch and have fun!

 

[WayneGM]

Welcome to VR. Sorry for the circumstances but glad you found us. Best wishes and good luck.

 

[COLLEEN S]

Welcome Janie, that is my sister's name too! As far as advice I would tell you to try to get up and out of bed as soon as they will allow you. Dont overdo when you go home. I had AV replacement (St.Jude valve) with mesh sleeve for aortic aneurysm. Im 46, it was my 2nd open heart. Im now 10months post. Doing pretty well, newly on coumadin.
So you're being repaired? Will you need to be on Coumadin?

 

[Adrienne]

I also had severe MV regurgitation. I don't know if I have any advice that hasn't already been offered, but I would just like to say that I had my MV repair (a very complicated on since there was a lot of calcification due to endocarditis), and it went very well with no complications after the surgery.

 

[MissMelis]

Welcome Janie, you've come to the right place for info - lots of folks here who have been to CC and lots of info on the site. Check the "stickys" in the pre- and post-surgery forums for lots of tips.

Don't be afraid to ask questions, we're all here to support you!
Keep us posted on how things are going.

Melissa

 

[Janie]

Hi Colleen,

I don't believe I will need to be on coumadin. My two brother have their valves replaced and they are both on it. They are both doing great. They both have a St. Jude valve. One had it done almost 20 years ago and the other about 12. Their hearts were pretty enlarged by the time they had surgery so a repair wasn't an option for them. Back that many years I don't think surgery was done quite so quickly as today. Glad to hear you are doing well! I will just be glad when this is all over. And, it will be interesting to see how I feel afterwards because I feel good now. I do get tired at night and I hate those palpitations but I think I've gotten used to all of that. My cardiologist thinks I will have a little more spring in my step. Hope he is right!

 

[SMS]

Hi Janie. The first thing I noticed after my repair, was that the palpatations were GONE. I mean completely. I had the robotic repair, and all the cuts were made in my right pectoral area. The groin incisions were for the by-pass machine. I went from a 4+ leak to trivial. I hope you have the same success at CCF as I did.

Steve

 

[ottagal]

Hi Janie,

Don't have much to add to what the others have said, but wanted to wish you a warm welcome. The support here is amazing. We are thinking of you and keep us posted.

 

[ALCapshaw2]

It sounds like you have a Postitve Attitude towards your Surgery which is one of the KEY elements to a good recovery.

I would like to suggest that you develop a Plan B, "just in case" the Repair does not go as well as hoped which can and does happen once in a while. Be sure to discuss this with your Surgeon so that he will know your preference in case the Repair does not work as well as hoped.

I don't recall seeing your age posted which can be a factor in deciding between a Tissue Valve and a Mechanical Valve. You need to know that ALL Tissue Valves wear out faster in younger patients. See the "Stickys" at the top of the Thread List for the Valve Selection Forum.

The Bovine Pericardial Tissue Valve has a good record for durability (90% at 20 years when implanted in patients over age 60? or is it 65?). Cleveland Clinic has LOTS of experience with this valve.

The On-X Mechanical Valve has the lowest propensity for Clot Formation of the Mechanical Valves, especially in the Mitral Position. See www.heartvalvechoice.com and www.onxvalves.com for more details on the technological advances incorporated in their valves. Cleveland Clinic began offering these valves earlier this year.

 

[jax]

Janie,
Dr. Mihaljevic performed my surgery on May 29th. He is an excellent surgeon and you are in good hands. When you start going for pre-surgery testing it is going to be exhausting for you. My surgery went very well in fact i was in the step down unit less then 24 hours after surgery. Unfortunately i hit a bump in the road and had to have a pacemaker put in and ended up going back to i.c.u. for 4 more days. If you are getting a mechanical valve you will need to be on coumadin the rest of your life. Mihaljevic put a st. jude mechanical valve in the mitral position in me and now i take 4 mg of coumadin every day but it sure does beat the alternative of what we would be facing. if you have any questions you can email me and i will get back to you as soon as possible.

 

[jax]

one other thing i asked mihaljevic about the onyx valve and he will not put that type of valve in as i wanted to get the onyx also. he doesn't feel there is enough proof on that valve opposed to the st. jude that has been around for a very long time.