My update

[ccrawford]

Hi Gisele - Sorry to hear of your current woes, but at least you've got the whole team with you, cheering you on. Keep us updated. Chris.

 

[LeoLillac]

my update

my update

Hi giselle.sorry to hear of your current situation.
I would be scared to go off coumadin for that long a time
I am having an ablation next week and even giong of it for 3 days makes me nervous .Hopefully, your doctors will come up with a good plan for u .
Good luck, Dara
Tricuspid valve replacement
feb9th2001 ( Dr Griepp surgeon.
Dr .Fuster ( my angel)
MAG( awesome NP
MT Sinia ( new york City )

 

[Rain]

wow... I didn't know all this was happening to you!

wow... I didn't know all this was happening to you!

Hey Girlfriend!

Talk about going through some scary stuff. Doesn?t it just drive you crazy when you see people who just take their good health for granted? Then here we are struggling to do everything right and STILL have these problems. It can be very discouraging at times. When I was at my lowest and scariest point with all this heart failure stuff... that?s what I told myself.... ?one foot in front of the other, Rain? that and doing my best to keep a positive attitude about the whole situation is how I got through it. My heart goes out to you, Gisele. I know how helpless it can make you feel. Please know how much we all care.

Best wishes,
Rain

 

[Gisele]

Cardio appt today..........

Cardio appt today..........

unfortunately, I didn't walk out of there with more than when I walked in. My local doc hasn't been able to talk to Boston docs. I think they are playing telephone tag. They did another echo today---they were looking for clotting around the valve. I asked what they would do if they saw a clot. Doc said that they would have to do surgery immediately and replace the valve. It wouldn't make any sense to just clean it out. My doc is nervous about my status (he's not the only one!).

I am going back next Tuesday so I am hoping that I find out more info at that time. By then Boston should have spoken to my guy and they can come to some decision. I am too scared to go back on coumadin as I don't think I could endure or survive another bleed however I am not too comfortable with just ASA and Plavix. So I sit here and wait.

Thanks so much for all your good thoughts. It means a lot to me.

Gisele

 

[Ross]

It almost sounds like you and I have the same Doc's. Maybe you need to hire Nancy to go after them and get them on the ball.
Woman you know how worried I am for you, so I don't need to go into that. Still praying like a madman on this end.

 

[ShezaGirlie]

Girlfriend Gisele.....!

Girlfriend Gisele.....!

Golly Moses, Gisele -- your plate is full these days! I'm so sorry to hear about the dilemma you're going thru and not knowing what's coming next.

Let's hope and pray the docs make contact with each other quickly and take wonderful care of you. And then one day soon you're as good as new!

Just remember....we're here and always will be.

 

[Kim]

Thanks for keeping us updated! You will continue to be in my prayers!

 

[Nancy]

Gisele-

I don't know how you feel about having that valve replaced.

If you ever come to the place in your mind when you have made your own decision about the direction you want to go in, and if it is to have the surgery, then why not press the issue with your cardiologist? It is really horrible to be living in such fear, worrying about getting a clot on your valve or having another neurological problem.

I know that when things are complicated, they like to wait until the risk of having surgery is less than the risk of waiting. Joe was in this kind of position when he had his mitral leak. He couldn't do anything at all, but sit on the sofa, and he wasn't even comfortable doing that. He could hardly walk around. His cardiologist found the decision very difficult to make because this would be Joe's third valve surgery and it would be risky for him. Joe finally made the decision for himself and decided to push hard to have it done. He really laid it on the line for the cardiologist and told him that he absolutely wanted to have it done, no matter what, that what he was doing wasn't living, and he wanted the chance to have a better life.

I believe that discussion took some of the burden off the cardiologist. But even at that, Joe still had to push hard to make it happen.

It was the right thing to do, and his mitral was repaired and although he has other cardiology and pulmonary problems, his valves are both fine.

I do believe the patient can have some influence in the decision making, if that is the direction you want to go in.

I'm not trying to influence you one way or the other, only giving you some food for thought.

Hugs,

 

[ALCapshaw2]

Gisele,

I'm sorry to learn of your dilema.

You may want to investigate the risks of low INR and / or NO Coumadin, assuming your valve is in the Aortic position. Ask your Cardiologist to rate the relative risks of keeping your current valve *without* Coumadin vs. the risks of another surgery to change valves.

I've heard that some countries do not routinely place patients with mechanical AORTIC Valves on Coumadin. Supposedly the higher velocity and pressures at the aortic valve lessen the likelyhood of creating a clot at that valve. Check with your Cardiologist and surgeon for more details!

I wish you well and hope your are able to come to a decision that brings you peace and comfort.

'AL'

 

[Gisele]

Thanks Nancy & Al & everyone who responded too!

Thanks Nancy & Al & everyone who responded too!

Nancy I don't think I have much of a choice here. I have had a total of three spontaneous subdural hematomas so Coumadin is no longer an option for me. Right now I am in a scarey place. Can't live with it..............can't live without it............ My cardiologist and I are both in agreement regarding the surgery but the problem is when you are put on the pump they load you up with anticoagulants. That is something I have to avoid right now. It's bad enough waking up from open heart never mind waking up with a really bad headache. I couldn't deal with that. So all the big guys over in Boston have to put their heads together to decide what how and when to take care of my problem.

Al, thanks for the advice, unfortunately my lucky valve is a mitral valve so I am really stuck there. Also, I had a stroke after my surgery so I am not a great candidate to keep off coumadin however I can't take it either.

Ross, don't worry, when I need the big guns to handle Boston I will call upon Nancy.....I think she is an effective advocate.

Thanks for all your support.

 

[Guest]

Gisele,

You know this, but I just want to remind you - there are no better doctors anywhere than those in Boston. (I'm not saying that others are not their equals - just that you cannont find better.) After this long a time whatever they decide will be the best decision than any group of humans can come up with for you. It is not a snap judgement but thousands of years of patient care judgements are pointed right at you.

One thing I can remind you of if the decision is to go the Lovenox route. They routinely say that it does not have to be monitored. This is true - rountinely. But you are not routine and anti Xa (Pronounced anti-10A levels) can be done. This is an effective way to be sure that you are not overdosing on Lovenox.

 

[Gisele]

Thanks allodwick

Thanks allodwick

I know I have to be patient as difficult as that is. I don't think Lovenox is an option for me at this time. The neurosurgeons told me no anticoagulants, including Lovenox. When my doc admitted me for heparin I started to bleed again. Besides I haven't had much luck with Lovenox. I seem to run into problems when I use it. In fact prior to all of this happening I had been on Lovenox for about four days one week before my bleed and I was covered with bruises. I was only taking 30mg bid instead of the 60mg which is indicated with my weight. I metabolize Coumadin rapidly, but seem to have the opposite reaction with the Lovenox if that is possible.

So, I sit here and wait. I am trying to remain positive and I am grateful that I am still here and doing OK.

 

[Guest]

I heard of a guy in Turkey who had a heart valve replaced as a teenager. He went back to his village and did not go to a doctor again or take warfarin for another 20 years. He had no problems. It is possible.

 

[LUVMyBirman]

Hi Gisele,

Are you starting to feel the Lovenox could be the culprit? It only rang a bell with myself just now as I recall having a small bleed in a nuckle while on it. Or at least that is what the hemotologist said it looked like.

As far as I have been informed.....there is really no way to measure the amout of Lovenox like we can with Heparin and Coumadin.

So sorry you are having concerns and hope you can get cleared very soon.

Keep us posted.

 

[Nancy]

Hi Gisele-

Please continue to post each day. I think we all want to be there for you and are concerned. You have a lot of burdens right now.

 

[Gisele]

Today's appt is moved.............

Today's appt is moved.............

to Thursday. How disappointing as I was hoping to get some info on when, where, how etc my surgery will take place.

One of the doc's in the practice had a death in the family and the schedule for office hours had to be rearranged to provide adequate coverage to the local hospitals.

Had a tough day yesterday with an upset stomach and a headache. I think I am getting sick of taking Darvocet. Will have to wait until Thursday to discuss that with my doc.

Well, today is another day......................let's hope it's a better one!

 

[mommywri]

Giselle,
I am praying that the docs at Mass General will come up with a solution for you. If you need some help, I live in the Boston area.

--Martha (mom to Christina, mechanical aortic valve)

 

[Karlynn]

Giselle,
Just a note to say I'm praying for you.

Karlynn

 

[Gisele]

Thanks Ladies

Thanks Ladies

I am hoping to have a better sense after my visit tomorrow with what is going on. My local group of docs all seem to be in agreement regarding replacing the valve, but Boston has to decide what the risks are pertaining to the actual surgery. I find the waiting is the hardest thing to do. Trying to keep busy at home as I can't drive until my next neuro appt in Boston in October. I keep on thinking it could be worse, so I am fortunate for that.

Thanks so much again.

 

[Ross]

Guess that means I can call you and talk to you just about any time huh? You know, I just might do that so that you know I'm not just all talk and actually do leave the computer from time to time.