Newly diagnosed

[tobagotwo]

Recovery

Recovery

Carlasue,

Do check out the posting that GrandBonny refers to. I haven't seen it, but it's likely worth reviewing.

I have been very fortunate. My AVR was on Tuesday the 6th, and I was home on Friday the 9th. I popped and held all three balls on the spirometer the morning after surgery. I walked the whole "cardiac loop" the first day upstairs, with the chest tube still in, and they took me up and down a staircase the second day. I was wearing a monitor, so I couldn't fake being OK with it.

I've had no real problem with stairs, and none at all with walking since I've been home. I didn't even take pain meds (tramadol) during the day. I was doing 1.2 mile daily walking loops a week after surgery.

I'm completely ecstatic with my new valve. I barely know my heart is pumping. I used to have a Gene Krupa-Ginger Baker drum-off running in my chest all night and day.

This is my two-week anniversay. I did three miles this morning, set up the pool filter, did some laundry, and ran around with my son. I did some posting here in the afternoon, and didn't even get my feet up until just before my wife got home from work. And now I'm back here, posting again. And I feel better than before the surgery. In fact, I feel great.

Now I'm going to break your heart: it has nothing to do with my getting a Mosaic tissue valve. There are others here who've had fast recoveries with mechanicals as well. I'm so sorry. I wish I could have said that that was the secret. You can have my surgeon, though. He's an absolute Master Zen Mechanic in my book. He could make a difference.

My personal bias was to go with Fentanyl instead of morphine, as then you're not also fighting the narcotic to get better. That said, each must do whatever he needs to, to get through things.

Your husband will do well. You'll see. The waiting is the worst part. After it's done, everything is toward getting better every day.

 

[carlasue]

Bob,
How much we appreciate hearing about your recovery..It is very encouraging to hear that things can go so well. We wish you all the best in your healing process.
I have also wondered how people deal with the emotional impact. Is it common to have depression after surgery? Or are you so relived to have it over and feeling better?
Carla

 

[carlasue]

Hospital postpones surgery!

Hospital postpones surgery!

Granbonny,
I cannot find the post that you refer to and would like to read it.
Also, wanted to let you all know that Duke Hospital called to say that Hubby's surgery has been postponed from this Fri. to May 3. (They had an emergency and then doc is on vaction) I was upset at first then thought it might be better to have a surgeon rested after a vacation! It also will give us more time to decide on valve issue and do research.
Carlasue

 

[SJJ]

CarlaSue,
Go to the members list at the top of the page, look under the Ps for Peter Easton, select the button for "all threads started by" and you can readily find the post Bonnie's referring to. It's good that you're taking the delay with such a positive attitude and you're right, it does give you more time to consider your options.
Sue

 

[tobagotwo]

Emotional impacts vary from person to person. It is not at all unusual for people to go through an elated period, when they realize they've made it through surgery, followed by a period of depression. It may also be partially chemical, as I understand there may be chemicals/hormones released when the heart is damaged (even professionally) that do not normally appear at any other time in the body.

I would tend to think that the more trouble-free the recovery, and the faster it ceases to be the focus of your life, the less depression one might have. Many people who have this surgery find that, while it improves things, they still don't get to escape the cardiologists' clutches. That can certainly be disappointing at many levels.

There is at least one current thread open about depression, in Post Surgery, I believe.

I've not really felt any depression thus far, and doubt it would be profound if I did. Then again, I really skated on this. Mine is the case everyone wishes was theirs. In two months, I'll likely be down to an annual echo with no meds (if I can talk him out of the Atenolol). What the heck do I have to be depressed about? I'm lucky they don't throw me off this site. I barely qualify.

At least for the next 15 years or so...

The good news is that your husband presents a very similar history to mine, at least superficially. That makes me feel he may recover quickly, too. I'm certainly not the only quick recovery on the site.

Again, I suspect it helps to go with a Fentanyl self-metered machine for pain control, if possible, instead of the morphine, followed by tramadol (if appropriate), rather than the morphine-based narcotics.

Don't force yourself to do things that feel innately "wrong," but don't be chicken to do things that feel OK to you.

One key thing for me was to realize that what's missing after the surgery is ALL of your energy reserves. If you do something until you get tired, you're completely tired, not just tired in your legs, and not just tired for a minute. There's an energy drain thing at night for a while - sort of like that feeling when you get up to go to the bathroom at night with the flu, weak and shaky.

I feel I have my reserves back the last few days, and that has been very encouraging to me. And I don't feel shaky at night anymore.

Don't let the wait make you crazy. It is the worst part of all of it. Not the most painfull, but still the worst. After he wakes up and the tube comes out, things start to improve every hour. There are some rough spots he will go through, but each only lasts so long, and then is done.

 

[Granbonny]

Another good post

Another good post

Bob, But do you think you will be comfortable if he tells you in 2 months(Normal to see your Cardio) 3 months after surgery for most everyone..that you can wait a year before he sees you again.....Most like to see you in 6 months after first visit after surgery. Mine wants to see me every 6 months and I am 2 years post-op... I saw him yesterday. Fun visit and he assured me again. No Problems. See you in 6 months. Not much money for him..just an office visit. I self-test at home. He asked me yesterday, if I still liked it. I told him, I love it.. I don't think I would want to go a year without seeing him..Even, tho, I have never had a problem since surgery. Just the fact that he tells me..You are doing great. Maybe we need a poll on..How often do you see your Cardio..Bonnie

 

[Susan BAV]

Bonnie -

The last time I saw my cardiologist was the three-month check-up and that went great and he wanted to see me again at one year, a nine-month interval! I was tickled!

 

[tobagotwo]

Check the thread by Spillo in Post Surgery called "I Made It." Spillo had the other good tissue valve, the Carpentier-Edwards Perimount Magna. He has apparently also had a quick recovery and minimal meds.

It is likely his valve will outlast mine. However, I felt I would rather chance my resurgery before the age of 70, rather than after. I believe the CEPM might put me, at 51, into a higher risk at resurgery time (71-76). It's all like playing the market, an "educated guess."

Don't take this to mean that tissue valves are better. I just want you to see that, barring complications, you can come back from this surgery pretty well.

I know this is easy to say and hard to do, but: Don't let this drive you crazy.

 

[tobagotwo]

GranBonny (spelled it right this time, finally!). Your posts always show that caring, nurturing aspect, and I greatly enjoy it and admire you for it. You might not realize from my, uh, colorful prose, but the head shot of me that I use here is cropped from a photo of me holding my granddaughter, Paige, in a rocking chair. She is seven months old, and I cherish her with all of my being.

At the hospital, the cardiologist said two weeks plus an echo, three months plus an echo, then once a year for an echo. I'm sure he'll run blood tests, too. Very fortunately for me, I have no other issues at this time.

Nice guy, but I will be totally satisfied to see him only once a year. I hate people telling me how they think I should behave, what I should eat, how I should carefully exercise with professional assistance, and most especially, how I should be "monitored."

The choice of a tissue valve (and certain resurgery) was largely so that I couldn't be tethered by the well-meaning or the blatantly control-hungry. When you require chemicals, testing, and special care for other health issues that may show up, you must be prepared to hand over the keys to your life from time to time. It's not bad; it's just one of many choices you make in life.

I wouldn't live well in those circumstances, nor would those loved ones who choose to be around me. I can be outstandingly ingracious at times, especially when someone attempting to assist me accidentally insults my intelligence.

In Western religions, you get just one shot at this life. I had this surgery to get mine back, and by gosh, when I'm done with the base requirements, I'm gonna take it and go.

Of course, I will still visit here, I hope. A man, especially a cantankerous one, can't have too many friends.

 

[Granbonny]

Hi Bob

Hi Bob

I'm so glad you are not "Woman" Then you would HAVE to be monitored by a PCP..once a year..How would like to have your breasts exposed and squeezed tight. Once a year for a Mamo..or a tad of you snipped for an annual pap-smear..done by a male doctor. Most men never go for an annual checkup Including my Hubby..Unless, I drag him. He doesn't like doctors either. other than my Cardio..He knows my Cardio has NEVER tried to get me to take other meds. Oh, well, the female is the tougher sex.And probably the healthy of the 2 since we are not afraid of going once a year... Bonnie

 

[Bryan B]

Bob, you gave a good description of the Ross Procedure as I understand it...and I got one.

The best "stats" I found were on the Ross Registry website. They had charts showing the aortic autograft valve and the pulmonary homograft valve at 84% and 82% respectively with no reoperation at 25 years (which is as far as the graph went). I believe these stats are for all Ross Procedures that have ever been performed AND registered, so I don't know how accurate that is. My understanding is that barring complications the autograft may last indefinitely and the homograft 20+ years. I was also told by my surgeon that if the pulmonary valve needs to be replaced that it is an "easier" procedure that can be done using the minimally invasive technique. My take was this...the Ross is riskier because it is technically more difficult, the surgery takes longer, AND you can potentially end up with 2 bad valves. The benefits are that you potentially avoid anticoagulant therapy and "MAY" not need another surgery. My surgeon said I was a "perfect" candidate for the Ross, so I decided to take the additional risk and hope to reap the benefits!

 

[carlasue]

Hi everybody. I am "CarlaSue's Hubby" (sometimes known as Barry). I just want to express my thanks to all of you for the invaluable information and support you have provided to us during these last few weeks. We are both very grateful.

As you know, the surgery has been postponed until May 3rd. Even though I want to feel better as soon as possible, I am not unhappy about having a one week reprieve. It gives me more time to change my mind back and forth between mechanical and tissue valve options.

Thanks again to all of you. It makes a tremendous difference going through this with the support of others who have been there before you.

Barry (CarlaSue's Hubby)

 

[Karlynn]

We are all wishing you the most successful surgery. I had my valve replacement 12 years ago and just found this site last August. I have gone from feeling like a medical oddity, because I knew so few others with valve problems, to feeling like a member of a large family of very courageous (and sometimes pretty wacky ) people.

We know and understand things that only "valvers" and their SO's can comprehend.

Keep us posted.

 

[Nancy]

Hi Barry-

I somehow missed answering any of these posts. I want to wish you all the best for your surgery on May 3rd.

I know you are leaning towards a tissue valve or the Ross. Whatever works for you and your lifestyle is a good thing.

Just wanted to mention that Joe has had 3 valve surgeries and 2 lung surgeries and continued heart valve and other thoracic surgeries certainly do take a big toll on the entire body, especially as you age. It's the continued trauma that is difficult. This has nothing to do with the skill of the surgeon or the mechanics of putting in a valve. It's a wear and tear thing, plus the added difficulty of scar tissue and adhesions.

If it has to be done, then it has to be done.

I am also going to say that for Joe, Coumadin is the least problematic drug that he takes. It is not the only drug that requires monitoring and bloodwork for him. He's been on it for 26 years. It's side effects are minimal. I know that others will strongly disagree. But this is the way it is for Joe. He just goes and gets tested, takes the dosage and then forgets about it until the next test. And he doesn't even self-test, doesn't mind going to the lab.

 

[tobagotwo]

I want to welcome you, Barry, and tell you that we're glad you decided to post personally. I'm sure you're aware that any of us will be glad to give you any information we can. And we all know what you're going through, as we're either going through it with you, will be going through it soon, or have already been through it.

You've realized by now that Tissue Valves, Ross Procedures, and Mechanical Valves all have their staunch supporters here. You also know that the choice is not a simple one, and each valve requires something quite significant that you must be willing to risk or to sacrifice.

One thing we all agree on is that it's not an easy voyage to get to the "replaced" side of the menu. It's scary and lonely, and not unlike being swallowed in an abyss at times, even with your loved ones there with you. You have to make decisions that no one should ever have to make, and you have to surrender yourself to people who will cut your chest open and expect you to deal with the results when they're done.

We respect the difficulty of this forced rite of passage, chosen by the unknown for the unwilling. You and your wife join a ragtag band of people who have seen a little too much, but are all the more glad to be here for it.

Please make sure that you touch base after the surgery, either yourself, or through CarlaSue, so that we know how things are going. If you have questions, don't hesitate to bring them up in a thread or in a private message, either before or after. If it's a real part of the surgery, preparation, or recovery, it's not taboo, and you're not the only one who is dealing or has dealt with it. This, from the guy who started the thread, "Night Sweats."

We wish you the best of fortune with your VR procedure and your recovery.

 

[carlasue]

Stentless valve?

Stentless valve?

Barry and I just returned from a visit to the surgeon. He is becoming so weak that sitting up is hard work. Doc. wanted to hospitalize him, but hubby wants to be at home as much as possible. He is scheduled to go in on Sunday with surgery on Mon. He feels like he will get more rest at home than in the hospital, but it sure is making me nervous.
I think the surgeon said he wanted to use a stentless valve. Can anyone explain what that is or did I hear wrong? Thanks
CarlaSue

 

[tobagotwo]

A stentless valve generally allows for a larger valve opening, which allows for better blood flow. Did he mention a specific valve?

The Mosaic has a flexible stent. The Carpentier-Edwards Perimount Magna has a modified stent also.

I agree with your husband. As scary as it may seem, I believe he will rest better at home.

I'm sure you're both very tense. Try not to let your tension jack his up too much. Stress is the hardest thing on the struggling heart.

Remember, waiting is the worst.

After the procedure, at least he gets to play some part in the progress.

Bless you both. Post us when it gets crazy. You're both in our thoughts and prayers.

 

[ALCapshaw2]

Hello Barry and CarlaSue,

I fully understand the desire to rest at home before surgery. IF there is a 'turn for the worse' over the weekend, you may want to head for the hospital.

ASK your surgeon (or his nurse or assistant) for a backup plan, i.e. ER vs. direct admit to the CCU. It is not uncommon for the surgeon to insert a 'balloon pump' via groin catheter (just like having a normal cardiac catheterization) to 'assist' the heart and give it a chance to 'rest' before surgery.

Best wishes for a successful surgery Monday!

'AL'

 

[Ross]

Carlasue's post on his surgery can now be found over in Post Surgery!