Still no surgery date in future

[Kathie]

Hi all,

Saw my cardio to review the results of my last echo - still in the low moderate range. He said no surgery in the near future at all. Said that they like echo to show severe before surgery. Now I am completely confused. This is the same cardio who said they like to do the surgery early on (the sooner the better), and is now saying I have to wait for it to get into the severe range. ????

So he put me on Florinef to raise my blood pressure, and I have to admit it has given me more energy. So, I guess I'm still waiting around......

Hope you are all well

 

[LUVMyBirman]

Hi Kathie,

Take that news and run with it. It could be 20 years or never!

Great news.

 

[ALCapshaw2]

It can be confusing can't it?

My recommendation would be to have annual Echo Cardiograms and if you become aware of any worsening of symptoms, especially shortness of breath, over-tiredness, chest pain, etc., call your Cardiologist and ask to be evaluated asap.

Try not to be paranoid, but do be aware.

Hope this helps.

'AL'

 

[Ross]

Kathie don't sweat it. The longer it can be held off, the better for you. Like Gina said, it may be never and that would be great!

 

[epstns]

Kathie,
I think what they really mean, rather than "early" is "almost late." In other words, they name phases for the severity of the condition, and in the earlier stages like mild or moderate, they just watch for symptoms. Once you get into severe or critical stages, then they may consider surgery "early" in those phases.

I'm watching the same sort of progression. Hope it takes its time getting there, though!

Please enjoy The Waiting Room. If you need refreshments, reading materials or help with the entertainment center, please feel free to ask the attendant. . .

 

[Kathie]

Trust me, the longer they can put this off, the happier I am. I was just confused (a permanent state LOL). And yes, I do think we should start offering refreshments in the waiting room - God only know how long we will be there

 

[ALCapshaw2]

Here's a possible clarification on the 'early vs. late' debate:

My understanding is that when a valve becomes severely stenosed, pressure builds up in the associated heart chamber and the heart may begin to enlarge due to this increased workload and pressure.

IF that enlargement is allowed to progress 'too long', then permanent damage can be done to the heart walls. Surgeons like to operate when the enlargement is in the 'early stages' which usually results in the heart returning to it's normal size.

Enlargement can be monitored by the chamber dimensions measured during an echo or by comparing Chest X-Rays with previous pictures.

To be sure, you may want to confirm this theory with your cardiologist.

'AL'

 

[Kathie]

Al, that is exactly what he FINALLY told me, so I feel a lot better about it. He also gave me Florinef and my blod pressure is coming back up and that helps a lot. Thank you, you all make me feel so much better just being able to post here and get some answers from the "been there done that" people.

 

[bvdr]

Hi Kathie,

Since I too seem to be a semi-permament fixture in our waiting room I do know how you feel. I know you also have problems with more than one valve. Do you have stenosis, regurg, or a combination? Having multiple problems makes things very confusing as to what to fix first and when. The valve problems develop together over a long period of time and have a wonderful way of compensating for each other....up to a point. When that point is reached, they should intervene. Even so, pay attention to changes in your body and call your cardio if something seems to be heading in the wrong direction.

And in the meantime, we have alot of traffic through our waiting room and we could use a hand in keeping this place tidied up.

Betty(bvdr)

 

[Kathie]

Hi Betty,

I volunteer for the dusting of the waiting room, as long as someone keeps the coffee coming. Both valves are regurg,and since I have been on the florinef to raise my blood pressure I feel much better. Still have days, naturally, but am able to do more now while I wait. I think we need new magazines in the waiting room.......

 

[ccrawford]

Wating is a pain

Wating is a pain

Hi Kathie- Sounds like you are pretty comfortable with the prospects of future surgery and that's good. Steve and Betty and a whole lot of others will keep you good company in the waiting room. I'll add another item to the good advice AlCapshaw gave you. If your stamina starts to get worse, then be sure and talk to your cardiologist. Sometimes these symtoms can change pretty fast, and in some cases can be dangerous if you don't get them checked out. I had a discussion with my cardio that resulted in speeding up my 6 month checkup. Two days later I had my surgery. My only regrets were that Steve had just gotten some new magazines for the waiting room. Chris

 

[MelissaM]

The waiting room is such a wierd place. You sit there seeing everyone else going in and have been told you will eventually be needing a major operation. Not too soon mind you, and not too late. A bit like Goldilocks, you have to find the time that is "just right."

I've found that the waiting room is filled with mind games. Is that fatigue from the additional stress at work. . .or is my heart starting to give out? I used to be able to hike that mountain. . .although its been awhile. . .maybe I am just out of shape. Seems like it is getting harder to breathe. . but I am nowhere near "short of breath."

With such vague symptoms, it can be really, really hard to guide cardiologists, and vice versa. With me, all of my tests are within the "normal" range, but the regurgeant jet it spitting right into my pulmonary vein, giving me all kinds of symptoms and fits.

The waiting room is hard and the not knowing is sometimes aggravating. But at least the company is good and the coffee hot.



Hoping my name will be called soon.

Melissa

 

[carlapv]

Boy was I glad to see your post! I was beginning to think that I should not ever go to the doctor alone.... because my interpretation seem to come from somewhere in left field. I went to my cardio yesterday and he put off the TEE until the 22nd, and referred me to a pulmonologist to rule out any possible lung involvement in my SOB. He talked with me in March about surgery to replace both MV and AV as the only option , now yesterday he is talking about valvuloplasty of only the mitral valve (which is mild to moderate) when the aortic regurgitation is moderate to severe. It makes me think he forgot about the AV. He said that the murmurs did not sound severe but the TEE will tell. I had valuloplasty of the MV in 95 and I'm not sure that is the right course to take. I am terrified about surgery, however I am really tired of waiting for the other shoe to drop. In 95 when I had the valuloplasty, I had no problems with the AV. Now I do. I am really frustrated with the SOB and not being able to do any of the things I want to do. I was on a little vacation last week and went to the Congaree. It is about a 1.4 mile trip one way. I was so embarrassed because I kept having to sit down and catch my breath, I was sweating like I had been digging ditches. My clothes were wet, my hair was wet. My face was purple. It was very attractive. People were staring like they thought I would drop dead any second. I know it embarrassed my husband, but he would never tell me that.

Sorry, that's enough whinning for one day!

Carla

 

[fyrfytr]

Hey Kathie,
Enjoy the waiting room. Keep yourself strong.
Dave

Keep your fires small!
___________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[bvdr]

Yep, the waiting room is a strange place to be alright but it's nice to be among people who are dealing with the same issues as you are.

Sometimes I feel like I'm caught in the middle. My husband had an appointment with our medical doctor recently and brought home a "prescription" for me to go to Dr. Chitwood in Greenville ASAP rather than the Drs. I'm seeing at Duke. He has had some bad experiences with patients of his that he had referred to Duke. My next appt. at Duke is next Tuesday. We'll see what happens then. I have enough to deal with without getting involved in a turf issue too. I expect they might need to repeat some tests since I haven't had anything in over 6 months.

I sometimes feel like I'm running in Molasses. Everything I do seems slow motion to conserve energy and breath.

Anyway, in the meantime, I'll keep the coffee fresh and take my turn answering the phone for reports on those in surgery.

I hope everyone has a good day today.

Betty(bvdr)

 

[ccrawford]

Hey Carla - Go ahead and whine.You're in great company for it. I remember (presurgery) being in the middle of a super Walmart wondering if I had enough energy to get back to the car so I could grab a mini nap. Read all you can about the surgery process and you'll start to figure out what is scaring you, and eventually you'll be ready for it. When I started all this mess, I was terrified of the prospects of surgery. Thanks to an awful lot of great people, by the time they wheeled me in, I was ready. With all these folks here to help, the waiting room isn't such a bad place to be. If we could just get Steve to quit dropping popcorn on the floor !! Chris

 

[bvdr]

Chris,

You mean it is Steve making the mess with the popcorn? I thought it was some of the kids and grandkids on the real busy days. Do you have an extra whisk broom we could put in the closet? Since some of us spend so much time here it really helps to keep it tidy. Did you notice we got a new water cooler?

Betty(bvdr)

 

[carlapv]

Chris,
Thanks for the response. I am tryring to learn all I can about my heart problem and the surgery. I already know what is frightening me......I have an absolute irrational fear of waking up on a respirator. I know everyone says that you don't remember but I am still afraid of that moment. Even as a child I was always terrified of not being able to breathe and it hasn't gotten better with age. I guess I am being really silly but I can't seem to convince myself that it won't be too bad. So I am content being in the waiting room. I haven't really noticed the popcorn on the floor I guess that's because my favorite resturant has peanut shells on the floor. Each table has a bowl of peanuts and everyone throws the shells on the floor. So I thought the popcorn was supposed to be there!

Again, thanks for the response,

Carla

 

[epstns]

NOT ME!

NOT ME!

Hey, Chris, it isn't me dropping opcorn and peanut shells on the floor. I've been on a restricted fat diet for 20 years (family gallstones) so I don't get to partake of those delicacies. Must be one of the others, blaming me. . .

Kathie - I think Chris is giving you some very good advice in telling you to be very aware of your capabilities and watch for any adverse change. This is the single point of advice from my first (fired) cardio that I still follow. He did, however, caution me not to panic if I have a "bad day" but to be watchful for trends or abrupt changes that do not self-correct in a day or so. The way I manage this now is to do my daily work-out in a fitness center that has timers/monitors on their machines and to wear a heart rate monitor when I exercise. I keep a diary of my daily (5 days/week) work-out as to miles run, speed, time, max heart rate and any unusual things. I also chart my weight and blood pressure. This way I can keep it all under control.

Stick around a while.

 

[ccrawford]

Carla - I thought maybe that your major concern might be the respirator. I kinda know all about that fear. If you'll go back into the November/December time period in the pre-surgery posts, you'll find a whole lot of activity by yours truly and a lot of very helpful people who helped me make it thru my concerns. This topic really bugged me for a long time, and it turned out to be not an issue. I let my surgeon and cardio know I had some residual concerns about the respirator. They kept me pretty well under sedation post surgery until it was time to pull the tube. I have a very faint memory of the tube being pulled, but no memory of it being in and certainly no discomfort. Go find those posts and read them all, then make sure your cardio and surgeon know about your concern. I bet this story will have a happy ending. Chris