My update

[Gnusgal]

Hee hee! I loved it Ross. You said "eh" I'm from the south, and that word just makes me laugh. (no offense. I think it's cute.) Thanks for letting us hear your voice.

 

[Sunshine susan]

Gisele--it is Sue here again in St. Petresburg---I have been off-line for a while, but came back to see your situation is no better and I am really worried for you. Just know that you are in my thoughts and prayers. We still have a date for a picnic at the beach in just a few short years!! Susan

 

[Gisele]

Thanks Susan!

Thanks Susan!

Plan on having a picnic sometime in 2004, maybe at the beginning of May. That is my goal, anyhow. I just love Florida in the month of May. Tourists are gone, weather is nearly guaranteed to be perfect.........beaches aren't packed full.........what could be better than that? Of course I have to survive another cold winter first..............but that will make it all worth it!

Gisele

 

[Jane]

It is such a hard time for you.

It is such a hard time for you.

Gisele, I just hope you get some good news soon. I really don't know how I would cope in your shoes. Just know that I am thinking of you and remembering you in my prayers.

 

[mamsram]

hi Gisele,

Been going thru your posts,and----my heart is heavy and I feel a bit guilty. Here I am feeling so good in spite of my condition--It just ain't right.
I wish that I could do a couple of days of your headaches and give you a break, I really would!
I guess I will just have to mentally hold your hand and tell you I care.
Thank you for your response to my being back here.

Look up and look beyond, to returning good days--they'll be back!
RAM

 

[HFK]

Dear gisele, So sorry to hear about your subdural hematoma, coumadin for some is a major illness in and of itself,I would seriously consider talking with surgeos to to see what your best optios would be , you dont want to go thru this again! Take carhfk

 

[Gisele]

Dear HFK

Dear HFK

From what I was told while I was an inpatient at Mass General the doctors are doing a lot of talking about me...........must be why my ears were burning. Too bad they can't pass that info down to me. I am still waiting to hear what they are going to do about me. It is driving me crazy. Last night I woke up at 2:00 AM as my right arm had fallen asleep and was totally pins and needles. Naturally, the first thing that came to mind was that I was having another stroke. Fortunately, that wasn't the case but still nerve racking nevertheless. I supposedly don't resume my Coumadin until Oct 2nd!

I see my local cardio doc tomorrow (have been seeing him weekly with echos) and maybe he will have some news from Boston. I just wish someone would tell me what is going on.

Thanks for your concern...................Gisele

 

[Ross]

Do you think all 600+ of us should jump them for some answers?

I wish I had them all for you right now. Limbo land is not a nice place to be.

 

[Gisele]

Well..............

Well..............

I'll hold out on using the big guns until later on. Right now it is too soon to operate.........couldn't handle the anticoagulants on the pump, so I guess they must be taking care of more important things for now.

 

[HFK]

Hi Gisele, Tommorrow I would really try to narrow them down, not taking coumadin for that long might be a problem, you should at least have INR checked often! Its always better if you can to have a doctor or doctors in a proactive than REACTIVE! hfk

 

[Gisele]

hfk

hfk

The neurology team comprised of surgeons and medical docs along with the cardiac team are all in agreement that it is not in my best interest to resume any anticoagulants at this time. Heparin was resumed one week after my bleed and surgery and I started to bleed again. Actually, neurology doesn't want me on anticoagulants at all, but I believe this decision was agreed upon due to the imput from the cardiology team.

I realize that not having coumadin is like russian roulette. Each day I go stroke free is a bonus to me. However, I found that my bleeds were so painful that I don't think I could endure another one. The neurosurgeons upon my admission the first time around told me I might not survive another bleed.........fortunately I did, but it nearly killed me as it was so painful. Morphine did nothing to relieve my pain.

Let's face it....I am stuck. So I cross my fingers and hope.........nothing more I can do right now.

PS: no sense checking my INR-not on coumadin. Even if I go back on-I have a machine here, but subdural was spontaneous and while I was within my INR range. So that is rather useless too!

 

[bvdr]

Well Gisele, I'm sure that their decision was made with much deliberation and care and with your best interests in mind.
We are just going to surround you in prayer as you live day by day. Lots of love coming your way today Gisele.

 

[Nancy]

Hi Gisele-

Keep hanging in there. I'm sure your doctors are working very hard on a plan for you.

Maybe I've told you before about Joe having a bleedout after gallbladder surgery a year and a half ago. He had to have 33 units of various blood products to try to stop the bleed. He was a very, very ill man. His Coumadin was witheld for at least a week, maybe 10 days. Plus at the same time they had to administer Vitamin K and plasma to try to get him coagulated. A panel of doctors worked on a plan for him also.

It was the scariest time. I was so worried that he would throw a clot, ot that he might bleed to death.

I can relate to some of the anxiety you must be having, but your situation is much more difficult.

There was nothing else that could have been done for Joe at the time. He just had to wait it out and hope that his body would not betray him. It's really being between a rock and a hard place.

Keeping you in my thoughts and prayers.

 

[HFK]

Hi gisele, Iam thinking about you, and I ll keep my fingers crossed, keep us postedhfk

 

[LUVMyBirman]

Hi Gisele,
You are in my thoughts and prayers as always.
Do recall a few people mentioning there have been documented cases of individuals surviving just fine not taking the Coumadin with their mechanical valve.Hold on to that thought and hope for the best!

Your doctors and yourself have some very important decisions to make. I tried to put myself in your shoes. Would I want another surgery to install a tissue valve, etc? That's a tough one. Finally came to the conclusion of keeping what I had if it was working. Having another surgery could open up a whole other can of worms.

Bottom line, it's your choice. I am confident you will make the best decision to suit yourself.

Take care and keep us posted

PS. Wonder if having a glass or two of red wine daily would be benifical to you?

 

[Gisele]

Thanks Gina

Thanks Gina

You know that is one thing I don't really like..........wine. I suppose I could get used to it, but I am a Miller Lite gal. Right now I don't think any alcohol would mix with my anti-seizure meds. Think I could substitute a beer instead when I am done my meds?

As far as keeping my functioning valve, I don't think that is recommended...........can't handle the Coumadin.........don't want another stroke either. I was very lucky with my stroke that it only affected my left foot.....I can walk very well, but I just don't balance as good as a normal person does. I was able to achieve this through physical therapy.

I know that ultimitely the decision will me mine to make, but I have 100% confidence in my local cardiologist and I will be following his recommendations.

Thanks for your support. Gisele

 

[fyrfytr]

Hey Gisele,
Just remember that we are always here for you and we are wishing you the best! I hope everything works out. You are in our thoughts and prayers.
Take Care.

Dave
_________________________________
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[Lorraine]

Hi Gisele,

I just got done reading all the posts,( I actually had been tracking them since 8/5/03, just haven't had time to post) and WOW! I am so sorry you have to go through this. Here I worry about my INR getting out of range once in a while and you have had to contend with bleeding, stroke, headaches, not being able to balance.

I did have a question, though it may not help much. I know you can't be on Coumadin, but would taking an asprin a day, help in any way from possible getting a clot? One asprin a day shouldn't really put you at risk for bleeding would it? I was just wondering if it would be of any benefit at all. At least you could be taking a little something to reduce the risk of a clot.

Hey, I don't know about the wine, but like you, I like my Miller Lite!

I know you really don't want another surgery, but you are caught between a rock and a hard spot. I will keep you in my thoughts and prayers. We will all be praying for you. Please keep us updated. Take care.

 

[Gisele]

Hi Lorraine

Hi Lorraine

I am taking an aspirin 325 mg daily along with Plavix. As my doc said, it isn't as effective as Coumdin, but it is better than nothing.

Dave & Lorraine, thanks for your good thoughts......

 

[John & Joann]

Giesele, we are so sorry that we have not kept up on all of these posts until today. We have been busy and concerned about the pacemaker battery. Our problem is not major compared to your situation. We will keep you in our thoughts and prayers as you wait. We waited nearly 10 months for the first valve surgery in 1971. It was pure "Hell".

Have faith that God will guide the doctors, give you peace, and grant you patience.

God Bless!