I need more time

[kman]

Just met with cardio,(Kaiser) went over latest test together, he suggested cracking me open as soon as possible after they give me a cath test on monday. I told him I need at least two weeks to get my ....... together, say goodbye to my loved ones and so forth. I need to slow this down a little so I feel like Im making good decisions, like the type of valve, the surgeon, what king of pajamas are appropriate for a valve job. I dont think Im going to buy the farm in the next two weeks? Or maybe its best to just get it over with and ask questions later. I dont seem to have much control over this nightmare. K man

 

[geebee]

Kman,

It is very important to be mentally prepared for this surgery if one has that luxury. Ask your surgeon and, unless there is some immediate life threatening reason, step back and take your two weeks.

Before my second OHS, all the doctors wanted me in the hospital immediately once I had a test that indicated the possibility of a clot on the valve. I was simply not ready and decided to enjoy the out of town guests I had and went in after that weekend. This was even against my doctor's suggestions but I needed the emotional prep. I am not suggesting that you go against your doctors but I do understand where you are coming from.

Hope you get the time you need but please do keep in mind that this is still necessary and will probably end up being remembered as less of a nightmare.

 

[ALCapshaw2]

Unless you are classified as Severe or Critical, it is probably safe (check with your surgeon) to take a couple of weeks to get your act together. Be sure to get COPIES of all of your Test Results. Hopefully your Docs/Hospital have a records department where you can sign the release(s) and get the copies. If they are S.L.O.W. as molasses, ask to see the reports and /or get copies while you wait. Sometimes a Nurse can help by getting your record and making a copy while you are there.

Don't forget about all those nasty Legal Things such as a Living Will, Power of Attorney (Medical, Full or Partial or Conditional, etc.), and Will. You may want to talk with your Bank(s) / Brokerage(s) about making your accounts POD (Pay on Death) or TOD (Transfer on Death). This is a good way to avoid Probate if you know where you want your assets to go.

'AL Capshaw'

 

[Philip B]

Control

Control

The advice you've received so far about visiting with your cardiologist about the risks you actually face by waiitng two weeks is good advice. The cath on Monday will probably result in the specific information your cardio doc needs to give you an accurate risk assessment.

The mental prep stuff is pretty important if you have the time you need to get ready. It's also pretty normal to feel like you are losing control of the situation. From a personal perspective, it was tough for me to deal with the fact that I couldn't fix the problem with my heart on my own and had to rely on others to fix it. My wife was a rock from the moment we found out that I needed the surgery. She helped me get all of the legal stuff taken care of while making it very clear her belief that the outcome of my surgery would be positive. Her confidence was amazing.

AVR surgery presents major physical and mental challenges, but these challenges can be dealt with. Making it through the surgery and looking at life feels pretty darn good.

-Philip

-Philip

 

[tobagotwo]

There is usually a maximum time span allowed between the last cath and the surgery, so make sure you won't have to go through it twice for no reason, even if you delay the cath a few days. Same goes for the preop exams.

No one here can accurately gauge the danger to you of waiting a couple of weeks. There's a lot we'd need to know to even hazard a sloppy guess. For that matter, even your doctor is only giving an educated estimation. However, in the base scheme of these things, as long as you don't have an aneurysm, a couple of weeks one way or another is usually not a big deal.

Ask him what his concern level really is if you take a couple of weeks. If it were an emergency, he'd have pulled you right in.

Best wishes,

 

[Susan BAV]

You've received some really good advice here on this thread already, I think--there is a lot to take care of, as you realize. My surgery was fairly sudden after the cath showed it was worse than they had thought. I remember having several moments of being terribly scared about what was about to happen. During the time, pre-cath, that I was consulting with three different (excellent and highly recommended) surgeons though (I really wanted to be sure ) a famous actor died suddenly, out of the blue, of a ruptured aneurysm; and that really scared me. I never heard if he had a bicuspid or not but I kind of assumed that he did. Anyway, his danger and/or condition had evidently been missed by some doctor somewhere. It gave me pause to think.

Pajamas? Wear theirs because you'll have lots of sweats (even for weeks) after the surgery. I wore one correctly and another one backwards, as a robe. That worked well.

 

[Cooker]

I know how you feel. I too felt like I need more time. When it was time (I knew for a couple of years it had to be done) I was in the cardio?s on a Thursday and he wanted to do it the following Monday. I said no but that I would be ready in a week. So a week later I was at the hospital bright and early Monday morning. They did the cath and surgery on Tuesday?..home on Friday.

The waiting is the hardest part. It was not NEAR as bad as I had anticipated. The pain was NOWHERE near what I thought it would be. I am sure you will do fine. I am not nearly as technical about this as some but that is me and how I handled it.

We will all be wishing you well.

 

[kman]

great advice

great advice

This is my first experience with any kind of internet forum or group (or surgery for that matter) and I cant believe the knowledgeable and considered advice Ive received. I cant help but joke about this, but as you
guys know from experience the prospect of the next few months is a litlle bit daunting. Ive decided to wait at least a few weeks in order to deal with whats on my plate and the legal stuff as suggested. The major concern with my last test and the reason the doc wanted to proceed so quickly seems to be the speed at which my valve diameter has decreased, the root seems O.K there is some regurgitation and thickening of the heart wall but the cardio felt that the big deal was that the valve size went from 1.4 to 0.9 in six months and the fact that I now get dizzy if I stand to quickly. Thanks again for your valuable responses I feel better informed and a little less nervous.
K man

 

[Bina]

Hi KMan, nice to meet you!
I had stalled my surgery for almost 2 years....not smart, but I was a wreck.
The more I thought about writing a will and legal issues the worse I got as far as freaking out, so I just skipped the will writing and made a few notes in a notebook.
I really wanted to know that my animals would be properly cared for and left detailed instructions regarding that.
My valve was below 1 cm when I had the cath which also showed an enlarged aorta....12 days later I was operated.
KMan, your time has come Keep in touch.

 

[ALCapshaw2]

The usual 'trigger' for AVR is when the Aortic Opening is down to 0.8 sq cm so you are getting close.

We have an expression on VR.com that goes:
"The Worse it Gets, the Faster it Gets Worse"
so don't delay too long.

My Aortic Valve Opening went from 1.2 to 0.8 sq cm in a little under a year.
By the time I got to surgery 2 months later,
I believe I got there "just in time" as they
put me on a Balloon Pump just hours after checking in.
I was later told that they only use the pump when people are in 'bad shape' and they want to let the heart 'rest' a little before surgery.

'AL Capshaw'

 

[Marguerite53]

Hello!! I'm glad you are finding comfort and information from this community. They were of immeasurable help to me. I waited 3 years as per cardio's advice, grumbling the whole time....wanting it done. Then, when my valve shrunk to .7 on the echo and we talked to the surgeon....I suddenly needed a colonoscopy and a breast biopsy! So 4 months later, the angiogram said .53 and the surgeon concurred that measure after the surgery. I have had NO ill effects from waiting that long (perhaps a little slower recovery, but it's been fast enough for me), but I absolutely wouldn't recommend it!!

Even with all that time, I felt like I didn't have enough time to "get it all done". I don't think any of us get it all done. Choose 3 things that absolutely have to get done and really, just focus on those. I got my papers in place (living will, power of attorney, etc.), wrote letters to each of my family and put them in my dresser drawer (they are still there) and made up a little box of instructions, med info for the whole family, phone numbers they might need, etc.. Then I just tried to relax.

Please remember that your emotions will be running high. You need to fill up that place in you, wherever it is, that reserve, fill it up with goodness. If it means sitting on a park bench in the sunshine (or with an umbrella ), holding a pet in your lap, snuggling with loved ones, visiting with a religious person.....whatever.......that is what you need to find time for. Whatever gives you strength. This is not so much a test of our bodies, as it is a test of our will to accept. It is hard to let go of personal control and allow others to invade our bodies in such a deep way. But if you have found a surgeon who you trust, you need to follow that sensible part of you that is telling you to trust him.

So, smile A LOT these next few weeks. Feel. Express. Absorb. Give. Smell. Taste. Hug. Please take some time to just be you. You will be glad you did.

Your problem will be over in a few hours on the operating table!! You will go through recovery in whatever time it takes you to recover (we are all different) and you'll be hopping back onto the merry-go-round of life in no time.

We're here now....we've "got your back". So use us and we will have you in our thoughts as you journey through this!

Marguerite

 

[Susan BAV]

Another really nice post, Marguerite!

In the days before surgery, I found myself awake really early each morning and I'd go sit on our back porch with a cup of coffee and watch the backyard birds play and the sun come up. Contemplating. Praying. Planning. Sorting out the possibilities in my mind.

I think I know a bit about how you feel about finding this site, Kman. I found it tremendously helpful also.

My first thought when I awoke from the OHS was, "Wow, I made it!" My second thought was, "Now get this tube out of my throat!" But that's another story...

 

[VikiVix]

waiting

waiting

I was told I needed immediate surgery last december. I also wanted to wait until my doctor told me a true story about a lady who wanted to wait a couple days to go to a family reunion. Sadly, she didn't make it through the weekend.
If I would have waited, I wouldn't have been here today to type this.
I don't want to sound grim but I don't think it's good to put off something so important that could give you many more years of precious life to do all the things you wish and hope to do.
Viki

 

[Guest]

My first thought when I awoke from the OHS was, "Wow, I made it!" My second thought was, "Now get this tube out of my throat!" But that's another story...

LOL!

My thoughts weren't quite that way, but similar. They were sorta combined into one: 'Great, I made it through the surgery with flying colors, but now my own mucus, thanks to this damn tube, is going to kill me.'

I actually remember rolling my eyes when I thought that, too. he he he



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
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"I should've started running a long, long time ago" ... Chris Daughtry ... 'Over You'

 

[PeggyM]

Kman,

I am waiting because everybody is on vacation! LOL.

I know it's scary and you feel like you have to get everything in order and quickly. I felt that way my first time too. The stress of all that didn't help matters any. Now that my third time is coming, I can honestly say that being calm and "letting go" so to speak is helping tremendously. It's a horrible feeling to have your life taken out of your control. But everything will work out.

I see you are across the bay. I'll PM you my phone number if you want to talk. I got lots of experience!

Hang in there,

Peggy

 

[Susan BAV]

LOL!

My thoughts weren't quite that way, but similar. They were sorta combined into one: 'Great, I made it through the surgery with flying colors, but now my own mucus, thanks to this damn tube, is going to kill me.'

I actually remember rolling my eyes when I thought that, too. he he he...

Mucus... Stinking tube... yes, I remember that too... I was afraid that I was going to rip my valve stitches, trying to get my hands untied to rip that thing out of my throat ... If there is a next time, I'm asking for Versed ...

 

[DeWayne]

I know when I went in last year at the end of May my biggest fear was that they would not let me out of the hospital without doing surgery. I had been a bad boy, not seeing a cardiologist in many many years prior, I knew the time had come for a valve replacement, I just knew it. When the cardiologist came in said I have some bad news.... you have a very large anuerysm....(wasn't THAT big, it was only 5.8cm) immediately I was freaked I was not going home. She explained everything, told us what was needed and told me I needed an operation and it had to happen soon, that until I had it I was not to lift anything heavier than 10#.

They let me go home, scheduled a cath, that same day of the cath I met with the surgeon. They were ready to operate the following week, I was not. So the schedule was setup to my request. I waited about 4 weeks, had time to do my research make my decisions, get a will, a living will, do all the things I thought I needed to just in case, plus make things ready at home for comfort when i came back from surgery.

For me the hardest thing was deciding on what valve type. Once I made MY choice I relaxed and took the rest in stride upto and including surgery and recovery.

I was really glad they let me go home after that initial cardio appointment, I was sure I wasn't lol.

 

[shellyb]

My husband has known for a long time (probably 20 years or more) that he would be needing AVR someday. We're feeling like we need more time. We were told that he has severe stenosis now. The surgeon he met with said that he needs the surgery soon but can take up to 3 months to get things worked out. Now I'm getting a little worried that his advice was not good. Does everyone get financial affairs in order? I'm planning on my husband being fine after the surgery (that's what the statistics show). Maybe it's fear surfacing now but you guys are getting me thinking about things I don't want to think about.

Shelly in SD

 

[DeWayne]

Surgery today is better than it ever has been. The outlook of survival is better than ever. BUT it is still a major surgery and there is always that slim chance something goes wrong. To not have financial stuff and everything else in place prior to going in puts those of your family in a bad place if it does go wrong. My advise is to have all your ducks in a row before hand. It also helps to comfort the patient, they can go in knowing everything is taken care of.
I knew I would be ok after surgery but I still wanted to make sure my family was taken care of and didn't have problems legally if something did happen

 

[tobagotwo]

I'll pitch in that in cases of stenosis, surgery is considered allowable as soon as the perceived aotic opening is below 1.0. As there is usually some regurgitation as well at that point, it's just as well to get it done fairly rapidly then. It doesn't mean you can't take the time to setlle things up first, though.

Fortunately, the highly successful history of this type of surgery says that all those preparations for the worst are going to feel a little silly in a month or so. Do take care of things, but don't take any extra concerns away from doing so.

Best wishes,