My update

[Gisele]

Boston has spoken.........finally!

Boston has spoken.........finally!

I saw my local cardiologist today and although he hadn't yet spoken to the cardiologist in Boston he did have calls out to him leaving several different phones numbers he could be reached at including his personal cell phone number. Again I left a bit disappointed knowing that Boston hadn't contacted my doctor but I also knew that I was in a wait and see game.

Around 5:00 PM my doctor called--he had spoken to Boston. It seems that the cardiac docs there are not keen what so ever about replacing my valve due to the anticoagulants given while on the pump. Their plan of action at the moment is to resume Coumdin after my Oct 2nd visit with the neurologist and hope that I don't bleed again. Now you have to understand this is a far cry over what the neurology surgeons where saying when I arrived in Boston which is "You can never go back on anticoagulants-next time you bleed it can kill you". Those words you don't forget.

I asked my doctor-if it were you in my shoes-what would you do? He then started to tell me how nervous he is for me as we are playing russian roulette. Then he told me that he would opt to replace the valve.

So for now, I wait until my visit to the neurology team on Oct 2nd, when I will get a CT scan. If the cardiologist still feel the same my doctor said we will go for a second opinion. I trust my doctor 100% and he knows I fear having a stroke again as much as I fear having another bleed. Seeing as replacing the valve is not what I WANT to do, I feel it is what I HAVE to do.

So I guess I will let you know in a month how this all plays out.

Thank you all so much for your support........................

 

[Nancy]

Tough choices for a tough gal, Gisele. These decisions just don't get any easier do they? I find it very telling that your doctor said he would go for the valve replacement.

October can't come soon enough, I bet.

 

[bvdr]

Gisele,

Thanks so much for the update. I doubt that everyone will ever come to a true agreement but at least they are all talking to each other. Do you know if your stroke was a result of a bleed or a clot?

Remember, we are going through this with you.

 

[Gisele]

Betty

Betty

The stroke was a few hours after my burr hole procedure or sometime during that day. I remember the incident but I have no concept of what time or how long I had been back from the recovery room. Boston initially told me that the pins and needles sensation that I felt as it rose up my foot was due to the swelling in my brain from the surgery. Then upon discharge they stated that they may have nicked my cortex during surgery and this feeling might be permanant. They weren't really sure why my foot was numb.

I went home for one day and was admitted to a local hospital for heparin. Baseline CT scan taken during my admission revealed a CVA. My doc feels that it was due to the fact that I was not anticoagulated-which naturally was necessary to stop the bleed and proceed with the surgery. I had received several injections of Vit K and also 6 or 7 units of fresh frozen plasma. My INR wasn't even high-I was in range.

My outlook is to remain positive.........hey look at it this way, at least we don't have to clean the house tomorrow, right? How are you coming along? Are you feeling stronger each day now? I am thinking of you and also Melissa.

 

[MelissaM]

Hi Gisele,

Glad you are getting some feedback, even if it isn't answers. I'll keep you in my prayers and hope that as the doctors keep talking a reasonable solution wiggles itself out from between the rock and the hard place you find yourself in. All is well here. Pain is going day-by-day. Just need that personal masseusse to show up and work the final kinks out of my back. . .and neck. . .

Hang in there!

Melissa

 

[Karlynn]

Gisele,
Continue to be hopeful. You are such a soldier. I'm so glad you have such faith in your doctor. It's hard to stay up when you continue to get hit with disappointments, but I know that there are so many praying for you. Once you have all the information, I know you will know what is best for you to do.

My continued prayers,
Karlynn

 

[bvdr]

Gisele,

I'm doing pretty good. I've got rid of the 14 extra lbs of fluid that I left the hospital with and about 5 more. It makes a big difference in how I breathe. I can lay down in bed on my back with two pillows and not feel like I am suffocating. My abdomen is no longer so swollen so my incisions are shrinking.....kinda like drawing on a balloon and then letting the air out . I still have some problems with sob when walking but it is improving. Tonight my husband took me out to dinner and after our walk in Walmart (we have no malls in our area of N.C) we stopped for a non-fat frozen yogurt. Maybe too much too soon but am pretty miserable right now with indigestion.

I saw my PCP yesteday and he was pleased. The paperwork is being processed for my home test unit. It was the one of the first things he said to me after he hugged me....."Bets, we have to get you your own home unit so you won't feel so tied down.".I do like that man.

Melissa, I am glad to hear you are coming around again too. I guess there isn't any way around it.....we all need some time to heal. When do you head West again?

Gisele, do you have someone there to help you out?
Both you gals have a good night's rest ok?

 

[Gisele]

Hi Betty

Hi Betty

Yes I do have someone to help me out. I have a great husband who has been absolutely wonderful throughout all of this. My daughter and my son have also been great. Monique who is 22 calls or visits every day. She will sometimes call me from work just to make sure I have taken my medication. She has been like my very own private nurse. This has truly touched my heart. My son came over this afternoon and cut the lawn (3/4 of acre of grass) as my husband had sinus surgery last Friday and the doctor told him he was not to cut the grass (hmmm, or so he said.......I wonder) LOL

I am very fortunate to have such a supportive family. I'd be lost without them!

Have a good night.

 

[nadi]

Gisele,

I am so sorry they haven't come up with a definitive answer or game plan, I know the waiting would drive me insane(more so than I already am I sure wish there was a Samantha or Jeanie to twitch or blink and make it Oct for you.

I will keep you in my prayers.

 

[hensylee]

Gisele - I am so sorry for all you are having to bear and still to not know what's next. I think of you often and keep you in my prayers. Ann

 

[alicia]

Dear Gisele, I have just read all the posts and I am amazed at how calm you are. This has got to be tough! You are a strong woman to be facing all this and still keeping a good attitude. I admire you. I will be praying for you my friend.

Alicia

 

[HFK]

Hi Gisele, I am so glad your husband and kids are with you,family and friends make the road a little less bumpy. My prayers and thoughts are with you.

HFK

 

[Sunshine susan]

It's a date....!

It's a date....!

Gisele, I have been following this thread, and just want you to know you continue to be in my thoughts and prayers. I'm very concerned. From a 30,000 mile view though it seems that a new replacement operation with tisssue would keep you off the future coumadin and the doctors should be able to monitor you during the operation. But what do I know and that sounds so easy. I have an appt. this Tueday and I am going to ask about it. In the meantime, we have a date for a Calidesi Island picnic whenever you are ready!! We'll even have some Miller Lite! Nice beach and great place to relax! Hang in there, girlfriend--God's in his Heaven and it will all work out......Later, Susan

 

[Johnny Stephens]

Hang in there, kiddo

Hang in there, kiddo

Gisele, I'm so glad to read that you have such a supportive family. I think you can see from the number of posts to this thread that lots of other people are pulling for you too.

Keep up your positive outlook -

Johnny

 

[Anne-Marie]

Giselle,
I just saw this thread and can't believe what you're going through. I'll keep checking for updates (as will a zillion others here) but in the meantime, I'll keep you in my thoughts.

 

[sylviayasgur]

hi gisele,
i'm sorry i haven't chimed in sooner... i've been reading all the posts and my heart truly goes out to you.
i cannot even imagine how you manage to keep such a positive attitude!!! you are amazing!
having the family support you do must be so uplifting. your kids and husband sound wonderful and so attentive.

i'm so sorry that you have to be in this position. it's such a difficult one.
your cardiologist, however, seems to be so supportive (as though he would treat his family this way too), and i'm glad you have him to advocate and direct.
this is such a tough decision. as nancy said, october 2nd can't come soon enough, i bet.
please know that you are in our thoughts and prayers and please keep us posted.
we are all here for you.
all the best, sylvia