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CathyK.

I had an appointment with my card this a.m. and was set to get a surgery date set. Well, that didn't happen. He is going to be flying to Chicago later today to see an Uncle in the hospital. Apparently this Uncle just had a valve replacement and they don't think he is going to make it. So my Card was a little gun shy on me today. I will see him in 3 months then we will see he said. I am waiting more for him than for myself. But I am sure I can without energy for 3 more months. A little disappointing though. He knew I was going to go in today and say okay, lets schedule a date. However he wasn't in the right frame of mind. Even though he isn't going to be the one doing the surgery, I said fine, we will see what Jan. brings.

So, still in the "waiting room" for 3 more months.
 
Thanks cooker! It is very hard to wait when your mind is finally made up. Oh well, I guess it was meant to be. Maybe someone else is trying to tell me that I am ultimately not the one in charge!:rolleyes:
 
If you rather just get it over with can you just call the surgeon yourself or does you insurance make you get a reference, Lyn
 
Just my opinion, but it doesn't sound like your Cardiologist is acting very professionally. If he can't separate his personal life from his professional one, he shouldn't be taking patients or offering his opinion. I am, however, glad that you have as positive opinion about it as you do. Best wishes going forward.
 
Have you selected a surgeon yet?
or even interviewed one?

If not, you can refer yourself and go 'surgeon shopping'.

Best to have someone lined up IN ADVANCE because as someone (TobagoTwo?) said:
"The Worse it Gets, the FASTER it gets WORSE"

That, and the fact that surgeons like to operate BEFORE irreversible damage is done to the Heart is why I think it best to let the Surgeon decide WHEN to operate.

FWIW, I had to wait a couple of months to get an appointment to see the surgeon my Cardiologist recommended and another few weeks to get out schedules to work out. I believe I got to surgery "Just in Time". NOT a good way to go. :eek:

'AL Capshaw'
 
I have already seen my surgeon. Actually my Cardio was the one that thought I should think about surgery because in July the Echo showed some change. I then had a TEE and Cath done and saw the surgeon. The surgeon said he thinks I have a little more time to wait but could operate tomorrow if I wanted. He said he can more than justify doing the surgery whenever but due to my age (44) would like to see me wait as long as possible. So now I am going every 3 months for Echo's but ultimately, they both said the decision is mine as to when I have surgery. So for now, we will see what Jan. brings and get through the holidays.
Cathy
 
I'm with Mike. Don't really like the cardiologist's response.....

Did you say that you DID have symptoms? What are your symptoms?

If you are experiencing a lot of symptoms, how long are you going to be willing to wait? I guess I'm wondering since these things do have a tendency to go downhill rather quickly towards the end of the ride. Do the surgeon and cardiologist think you can stay in this mode for 10 more years? If so, then by all means keep waiting. But if it's only going to be a matter of months that you are waiting, you need to tune into YOUR OWN feelings and decide what is best for you.

I was in just your position last year. The cardio was really hopeful that I could last another few years. I swear, I think I may have willed my valve to get worse since I had no patience for waiting. I was very very impatient to have the surgery done. I felt awful. I was sick of it. Didn't seem to me (but I'm 52) that waiting was doing me any favors at all. I knew I'd go tissue regardless, so why bother waiting.

You need to decide when this all fits best into your life. YOU get to choose. That's kind of the gift of being in the Waiting Room.

I chose to see a second surgeon....just to hear it from someone not affiliated with my cardiologist. I still went with her surgeon (and am thrilled that I did), but it was important for me to hear that everyone was on the same page.

I encourage you to do the same. Even if it's just another surgeon who did something for your friend's uncle or something. See if your insurance covers it. Mine did.

GOod luck. Keep us posted.

Marguerite
 
They haven't really said how long they think I can wait. Probably cuz they can't guess on what the valve is going to do or how fast. I do have that same attitude as far as why wait if I am only going to wait a few months.
Symptoms - very tired, some SOB, some edema to lower legs. The tiredness is what is driving me crazy. My mind is going full speed but the body can't keep up. I know the ultimate decision is mine but that alone is a heavy burden to bare. I question myself on what is going to be best. Nobody can really say for sure so I quess I will stick with fate. Since I was all ready and something unusual happened, well, let's see what Jan. brings. At least that is where my mind is right now.:confused:
 
CathyK. said:
They haven't really said how long they think I can wait. Probably cuz they can't guess on what the valve is going to do or how fast. I do have that same attitude as far as why wait if I am only going to wait a few months.
Symptoms - very tired, some SOB, some edema to lower legs. The tiredness is what is driving me crazy. My mind is going full speed but the body can't keep up. I know the ultimate decision is mine but that alone is a heavy burden to bare. I question myself on what is going to be best. Nobody can really say for sure so I quess I will stick with fate. Since I was all ready and something unusual happened, well, let's see what Jan. brings. At least that is where my mind is right now.:confused:
Click to expand...

I'm concerned that with your symptoms, you are doing permanent damage to your heart the longer you wait. Symptoms mean that your heart is under stress. Continued stress causes damage that may not reverse after surgery. Tiredness, SOB and edema are all big signs that your heart is under stress. You have a "hat trick" of symptoms that together are pretty alarming. The edema is telling you that your heart is not pumping as it should. It's having to work hard at pumping and that is not good for the overall condition of the heart. I'm really surprised that the surgeon is telling you that you can wait. What's the difference between 44 and 45, or even 46? There isn't going to be a magical surgery that pops ups in the next year or so. The surgeon saying he wants to wait because you're 44 tells me that you may want to look for one who does more VRs. His comment makes me think he doesn't deal with a lot of VRs because if he did he would be seeing people of all ages and see that it's not the age that important but the symptoms and condition of the heart.
 
I agree with Karylnn whole-heartedly (so to speak). Many people can live for years without symptoms because the heart can compensate for the problems for a long time. When symptoms begin, it means that your heart is weakening and isn't able to compensate for the defects any longer. This is the time to get it fixed - before permanent damage is done.

After surgery, you'll have more energy and will feel much better than you do currently. Why does your Cardio want you to put that off? Life is way too short to spend years with a decreased standard of living due to a correctable problem.
 
Karlynn - My surgeon and another surgeon do about 250 vr's a year and up to 650 heart surgeries. I am not sure as to why he is hesitant except he knows I want to go with tissue and is concerned about the future because I am 44.
 
Okay, as long as you feel safe with your numbers. That is, as long as you know there isn't any significant enlargement of the heart due to the added stress it may be under.

Here are some tricks to get you through the holidays.

Watch out for caffeine (chocolates, too) and extra salty "fun" holiday foods. The caffeine can start up some PVC's to your poor tired heart. The salt can, of course, affect the water retention.

Start taking naps. They are wonderful!! If you can take a power nap every day you will not feel as tired. Listen to your body. Sometimes 2 hours after I woke up, I was tired all over again. So I just lay down for 20 minutes and felt enormously better. Maybe it happens twice in a day. Listen to the tired you and give it a rest.

Don't book too much into the holidays. You will be in tears. Really take it easy and spread things out. Too many committments in one week will leave you unable to muster the energy to do anything for 2 weeks! Let someone else do the big dinners this year. (I, of course, did not listen to my own advice which is why I can tell you.....listen to me!! ;) )

Take elevators and escalators. No sense in testing out how you'll feel at the top of the stairs.....you'll feel lousy.....ist isn't going to change until you're fixed. Don't even bother.

Do not do ANY heavy lifting. NONE! Don't go pushing furniture around or hauling anything. Pretend you've hurt your back, or something.....just keep that blood pressure stable.

Get all your ducks in a row (personal paper work, living wills, power of attorney, etc. etc.. Start thinking about who is going to care for you, how you will manage, etc. Look at recliners on sale in January, etc. Then, should you go into the surgeon and they give you a :eek: let's do you tomorrow....you can just smile and let them roll you on in.

Okay....lecture over...... April is a nice month for surgery :p . Springtime recovery is awesome.

Take care!! Marguerite
 
I'm glad your surgeon is experienced. That being said, it would make more sense if you were saying you were just going to wait until the first of the year in order to not be recovering during the holidays. But I think we're all a bit confused as to why the surgeon thinks a few months here or there is going to be better for you. As Rachel posted, if he said you could wait another 5-10 years, or even 2-3 years, that would make sense. But a preop patient who is bad enough to be monitored every 3 months is bad enough to have surgery.

I'm still very concerned about your reported symptoms. Occasional tiredness and SOB can just be traits of a particular valve disease years before surgery is needed, it was with mine. But throw in edema and you're talking some serious stuff. Your heart is being taxed. The longer your heart exists under stress can, at the least, impact your recovery time.
 
Marguerite - thanks for the advise, it sounds good! I adready do the 20 min. to 1 hr. naps. I do this alot on a day to day basis since I am still working and am worn out when I get home. I am wondering too if my Cardio is thinking that after the holidays will be a better recovery? Or maybe they don't realize how yuky I am feeling. I tell them that I am very tired all the time but to look at me, I try to hide how I feel and I don't think people can tell how I really feel. (thats just me). I grin and bare it, so to speak.:D
Karlynn - I am on HCTZ which keeps me from having edema but if I don't take it for a couple of days the edema is there. I am also on Cozaar and my BP is low anyway so that just adds to my tired state. I do agree with you on what will 3 months do for me. I guess for now I will get through the holidays and start the new year out with a bang! However, the surgery will take place the first of the year!
Thanks for all the advice and concern. It makes decisions and waiting alot better!
 
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