New Guy w/ a lot of Questions

[cgv]

Cgv

Cgv

Eric,

To address your question regarding recovery - everyone is different. I think someone who is young and fit like yourself is more likely to recover more quickly and have less problems. For me, pain was never an issue, other than the removal of the drainage tubes ( only lasts a few seconds). I didn't need any pain pills after my second night in the hospital. I had surgery on Friday and came home Monday. I probably slept sitting up slightly for the first couple of nights, but then was able to sleep on my back and right side. I didn't need a recliner, but can understand why some do. Getting in and out of bed was a little awkward for the first couple of weeks, but not really painful.

My wife went back to work on tuesday. She only works about ten minutes away so could get home quickly if needed. I was encouraged to do things on my own as soon as possible. My wife did make dinner and the bed etc. but I was home alone during the day and had no problems.

I have a home office so was able to start working part time in a couple weeks. If I got tired, I would just go take a nap. I think if I had to go to an office, I would have waited another week and just gone in for a few hours. A physical job would take considerably longer recovery but again you would likely start part time. The Doc cleared me to drive after about 2-1/2 weeks. The concern about driving is potential damage from an accident more than physical capability.

The issues that I had were PVCs shortly after I got home and a pericardial effusion after about 7 weeks. I had worked up to about 2 hours/day of walking without any problems and then suddenly started getting short of breath. I had to go back to the hospital to have the effusion drained 2-1/2 weeks ago. I'm back up to an hour a day of walking and just started doing light weights and machines at the gym. I'm still experiencing the PVCs, but they aren't as bad as before. I'm hoping after the heart settles back down from this latest invasion for drainage that they go away. They are supposedly benign, but are a real distraction, particularly when trying to sleep.

After the drainage surgery, I was taken off lisinopryl and lopressor (beta blocker) and took indocin (anti-inflammatory)for 10 days. My BP and pulse were too low and had been since the original surgery. I am now taking only a baby aspirin each day and xanax as needed tor anxiety.

Good luck with your valve choice decision - I'm sure you will do fine with the surgery and recovery.

 

[CCRN]

Upgrades and Improvements

Upgrades and Improvements

While new features, model names and numbers have been added, the FDA has allowed the valves to continue to be produced under their original approvals, as the upgrades were not considered to substantially differentiate themselves from the originals in a way that would create a difference in terms of use, indications, or functionality.

These "upgrades and improvements" didn't work out for Saint Jude with the "Silzone" addition to their valve. I know it was not intended to decrease the calcification of the prothesis but, in spite of all the testing, the treatment did not have the desired effect when implanted as well as putting patients in the position of reop. May I point out this was a MECHANICAL valve. Of course, they also advertised it as the improved wonderful valve they have boasted about for several years. It just goes to show the old mechanical tickers can have issues too. I just think it's misleading to be able to take credit for the old product's reliablity in a new one. Don't you think this point should be taken into account?

I still want a tissue valve. The further I get away from my surgery date the more I don't mind the thought of going through it again. Must be the after-effects of anesthesia and narcotics. Don't really mind taking the Coumadin........when I can easily get it.

I hope this doesn't overly concern our new member here. I do encourage reading of Mr. Tobagotwo's posts. They helped me a lot. The more knowledge I got the better I felt about my progress both pre and post op. I would also urge you to check out the Bicuspid Aortic Foundation web site. I think everyone with this congenital defect shoud see it at least once. The New York Times article currently on the site is very enlightening. Best wishes, RBG

 

[coryp]

A good point. However, both figures are assumptive at some level. All the tissue valves have evolved some over time, but are structurally the same, and have thus inherited the usable life statistics of their forebears. While new features, model names and numbers have been added, the FDA has allowed the valves to continue to be produced under their original approvals, as the upgrades were not considered to substantially differentiate themselves from the originals in a way that would create a difference in terms of use, indications, or functionality.

The 90%-at-18/80%-at-20 figures are from published data for the Carpentier-Edwards bovine valves (Edwards Scientific), going back from when they were offered without anticalcification treatments. It is a manufactured valve, made of natural materials (cow pericardium - the tough tissue surrounding the heart). Structurally, the valve has remained almost the same over time, having gained low-pressure preservation treatments, a thinner stent, and anticalcification treatments along the way. Indications are that these improvements should reasonably add to the product's useful lifespan. More recent versions (such as the Magna, aka CEPM) continue to maintain this nature-mimicking structure, but allow for a supraannular mounting, which allows the use of a larger valve size for more bloodflow.

The porcine valves fall into two categories, stented and stentless.

The stentless valves (Freestyle) that have been discussed a lot recently on the site have been offered by Medtronics for just thirteen years, recently receiving anticalcification treatments as well. They have a 94% record at 12 years. However, a similar product, called the Toronto SPV (now marketed by St. Jude Medical) has been available for over fifteen years internationally. It is not treated to reduce calcification (St. Jude is still in trials with their own anticalcification process), and has been described as having 12 - 15 years of useful life. It appears comparable in quality to the Freestyle (after all, it comes from the same natural parts), but does not share any benefit that may be derived from anticalcification treatments. The Freestyle is available in a number of different configurations for various patient requirements, and is used when root replacement and other factors beyond the valve itself are involved. Stentless valves are real valves that are still attached to the wall of the pig's original aorta, and are implanted inside the patient's aortic wall, or in place of it, depending on the patient's needs.

A number of companies market stented porcine valves, including St. Jude Medical and Edwards Scientific. However, the premium valve in that category in recent years has been the Medtronics Mosaic, which I understand to have the dubious honor of being the most expensive valve on the market. Being an actual porcine valve attached to a stent (ring) for mounting, it remains structurally as defined by nature. Its forerunner, the Hancock MO valve, reached 15 years at a 90%-95% rate in mixed ages in various studies. "Upgrades" since that time include a thinner, flexible stent, a nondamaging tissue fixative treatment, an anticalcification tissue treatment, and the ability to mount supraannularly with the Mosaic version. Stented valves have a plastic ring which is used for mounting on the aortic wall.

There have been numerous model changes in both valve types in the last five years, and I recently read of the most current Mosaic model being called the Mosaic Ultra (the new moniker is not reflected in the Medtronics website). Again, the natural structure and indications are maintained.

Best wishes,

Bob,

THank you for chiming in with your vast knowledge

 

[jayaresq]

Hi Eric

Hi Eric

Welcome to vr.com.

You are geting a lot of good advice from the vr.com community.

For my money, you are also in EXTREMELY good hands at Cedars. My AVR was done there July 18 (by Dr. Trento). There is a surgical nurse at Cedars named Cris Luper. Find her and introduce yourself to her. Tell her Jim sent you. She is a godsend and will immeasurably help you during your hospital stay. I also went tissue (moo) for a lot of the same reasons you've already read. Two weeks out, I'm walking (a lot) daily, miss driving and will resume soon, have sex, skip my vicodin regularly and miss work (attorney) only a little less than I thought I would. My scar is healing appropriately, too.

The worst part was the pre-surgery waiting time and the uncertainty. But I feel my after-care is in my hands and that makes me feel good. I'm also extemely driven at work, which you sound to be. Still, I'd feel pretty silly if I rushed back to work and its fast pace, only to short my new valve in the long run. Since there don't seem to be any hard and fast rules, make and follow the ones you feel the most comfortable with.

Best of luck with everything. -- Jim

 

[Eric]

Wow?! All of these responses are overwhelming in the interest, information, compassion and humor (that?s the first time I?ve ever been told I have a cute tissue valve, RBG ) they convey. I?m so glad I found you guys.

By the way, when choosing your surgeon, did any of you seriously consider going to Cleveland Clinic? I really like one of the surgeons I interviewed, Dr. Raissi out of Cedars, but am thinking about getting another opinion just to confirm that I?m making the right decision.

By the way, Jim, a buddy of mine had his valve replacement done by Trento and thought he was great. He got an infection from surfing in Mexico, got endocarditis, did a lot of research and ended up with Trento. Trento may even assist Raissi if I go with him but either way I?ll try to remember to look up Chris Luper. Do you know who assisted Trento on yours? You?re right, like you I?m driven at my work and I hate to be unproductive, but I?ll look at the big picture and try not to push myself post op., as Al also suggested.

Al, Bob and Cory, thanks for all the info and data. RBG, all this info is not overly concerning?Overwhelming to a degree but it?s all good and I?m taking it all in.

Thanks for all of your post op experiences and suggestions, including the recliner (maybe I can rent one), although OldManEmu and others didn?t seem to need one. Cgv, sounds like you?re recovering and that?s encouraging. Thanks also for the wished of good luck and I?ll let you know when I get a date.

 

[Mike S]

Hi Eric!

Welcome to VR, What a great site!
I thought I would give my two bits as well. I am 30 and had OHS about 6 months ago. I had a St Jude mechanical valve put in, as well as the aortic root rebuilt, and the ascending aorta replaced with a Dracon graft. It took me about 4 weeks to return to work and about 6 weeks to return to full work. However, listen to your body everyone is different. The recliner hint is a great one, never had one when recovering but sure wish I did.
Have you asked your surgeon where he would be installing the heart/lung machine. With my surgery they connected it to the artery running down my right leg. They told me that they had to do this in order to have the extra room up by the heart. Needless to say I awoke with a 6" incision by my groin, my first steps out of bed landed me on the hospital floor. The nerve damage done to my leg due to the size and depth of the incision is still quite bothersome after 6 months. They say it may never fully heal. If you need this amount of work done on your OHS you may want to check about this and ask the surgeon if there is an alternative.

If anyone else has had this procedure done let me know how you have recovered!

Eric, all the best on the decisions that lay ahead of you!

 

[Paul_N]

Eric

I'm not as well educated as most in regards to valve selection, but I went with a Ross Procedure for various reasons. Mostly personal. That included continuing to be a volunteer fire fighter.

You're going to get almost all your questions answered here. It's a great source of information and the folks truly care about each other. Keep searching and asking questions on valve choices. You'll have all the information you need, along with your doctors recommendation, to make the best choice for yourself.

Recovery is something you need to get your arms around now if you can. I personally spent more time preparing or educating myself for the surgery than I did for recovery. I too heard 6 weeks, but it didn't sink in. Kind of went in one ear and out the other. I struggled mentally with the time it took to get back to normal. You have to remember it's a major operation.

Having folks close to you for support is key to your progress ... at least in my opinion. I don't know what the average stay is in the hospital afterwards, but I was discharged 5 days after mine. I spent the first week sleeping in a recliner. The next couple of weeks went by without any real noticiable progress. My doctor and wife were the ones who kept telling me to hang in there ... that it's getting better. Once I was able to start rehab, that's when I FELT like I was making progress. It started slow but the results were noticable.

In reagrds to time away from work; take the time ... you need it and don't want to push to hard to fast. If you do, you'll drag out the time it takes to feel like you did before. I came back to work after a month. It was half days for the first 2 weeks then back to full time. I'm an office guy most of the time so it wasn't to bad. Feeling tired or not rested was the biggest complaint.

The key message is this is absolutely doable. You can see that from all the folks that have been through it here on this site. I'm doing EVERYTHING I did before surgery and feel better than I did before.

I wish you luck and am confident you'll get through this fine.

 

[901]

Hi Eric!

Welcome to VR, What a great site!
I thought I would give my two bits as well. I am 30 and had OHS about 6 months ago. I had a St Jude mechanical valve put in, as well as the aortic root rebuilt, and the ascending aorta replaced with a Dracon graft. It took me about 4 weeks to return to work and about 6 weeks to return to full work. However, listen to your body everyone is different. The recliner hint is a great one, never had one when recovering but sure wish I did.
Have you asked your surgeon where he would be installing the heart/lung machine. With my surgery they connected it to the artery running down my right leg. They told me that they had to do this in order to have the extra room up by the heart. Needless to say I awoke with a 6" incision by my groin, my first steps out of bed landed me on the hospital floor. The nerve damage done to my leg due to the size and depth of the incision is still quite bothersome after 6 months. They say it may never fully heal. If you need this amount of work done on your OHS you may want to check about this and ask the surgeon if there is an alternative.

If anyone else has had this procedure done let me know how you have recovered!

Eric, all the best on the decisions that lay ahead of you!

I had similar work done: AVR, MVR, ascending aortic aneurism replaced by a dacron graft and MAZE Procedure. They hooked me up to the heart/lung machine on the front of my right shoulder. The front of my shoulder is still numb/tingley but it doesn't seem to hinder my arm movement at all.

 

[jayaresq]

Hello again, Eric

Hello again, Eric

Glad you're getting such good info here. In response to your questions, Gregory P. Fontana, MD was the assisting surgeon on my AVR, although I never met him. At least 2 surgeons "scrub up" for each surgery. There is a color-coded chart in the office, which shows which surgeons are scheduled or available. As I recall, Mondays are generally Dr. Fontana's day to assist. Several members here have recently had procedures done by RAISSI. I've heard positive things about him and also that he is developing a reputation for aortic surgery. Personally, I have the highest regard for Dr. TRENTO, who did my AVR on 7/18. I can't see how you could do better than Drs. Raissi and Trento performing your surgery. Either way, if you have your surgery @ Cedars, be sure to look up Cris Luper.

As for the work thing. I've always worked hard and like to. But maybe I'll take some post-op time and reflect on my priorities . . .

-- Jim

 

[McCln]

Welcome Eric, we are all friends here and hope you ask all the questions your want. Be sure to save the big ones for the cardio. I just wanted to welcome you and we are all here for you. They helped me a lot when I started on the road of replacement. You are doing great by researching everything and be sure to keep doing it, things change all the time in surgery and treament.

 

[Eric]

Thanks

Thanks

Welcome Eric, we are all friends here and hope you ask all the questions your want. Be sure to save the big ones for the cardio. I just wanted to welcome you and we are all here for you. They helped me a lot when I started on the road of replacement. You are doing great by researching everything and be sure to keep doing it, things change all the time in surgery and treament.

Thank you, Caroline.

 

[Eric]

Mike, I don?t even know what a heart and lung machine is (no need to explain ? I?ll research it) but it?s another question for me to ask my doc. Thanks. Maybe, like they did for Doug, they?ll hook mine up to my shoulder.

Paul, Thanks for the info. As you noticed, I?m doing my share of research and this is great site for reference.

Jim, I?m going to try to meet with Raissi next week and I will ask him who will assist him ? hopefully it will be Trento. But forget them, the key person seems to be this nurse ? Cris Luper! I?ll definitely look her up.

Yesterday I had the conversation w/ my assistant about me being out of the office for as long as 6 weeks, so I?m preparing myself. As for priorities, I?ve begun to reassess mine as well. Among other things, I was in Southern Africa a few months ago for three weeks but I may need another vacation when this whole thing is over?

 

[Karlynn]

I was in Southern Africa a few months ago for three weeks but I may need another vacation when this whole thing is over?

Now you're getting the hang of this.

I think you will definately need a vacation when all this is over with.

 

[CCRN]

Surgery location

Surgery location

By the way, when choosing your surgeon, did any of you seriously consider going to Cleveland Clinic? I really like one of the surgeons I interviewed, Dr. Raissi out of Cedars, but am thinking about getting another opinion just to confirm that I?m making the right decision.

I considered going to Cleveland Clinic for privacy issues and their experience with the tissue valve I was considering. Decided to stay in town because I had just as experienced surgeons there and my family wanted to be nearby and available. You seem to have some very experienced people there at home. Other opinions are great and I understand CCF is very agreeable to doing that kind of thing. Do whatever you need to do to make you more comfortable with your decision. I chose my surgeon by the number of valve replacement surgeries he did per year which was about 300.