Echo NOT good news --- 4th OHS Imminent

[deek]

I'm glad you got approved for the Revatio, Dee. That drug is EXPENSIVE isn't it??? Wow, I nearly fell over when the pharmacy told me that if I didn't have insurance, it would cost me over $1000 for a 30 day supply!!!! Thank God for insurance!

How much of a dose are you going to take? I was taking 20mg a day but I now upped it to 30mg since last Tuesday when I found out my PH was elevated again. And strangely enough, I'm not getting the headaches I used to get. That's a good thing though.

Good luck to you!

It sure IS! My cardiologist thought I was going to have some trouble getting it approved...she had to write a letter to insurance company...but when husband spoke with the nurse from health insurance company she said, "$5000.00 for a 90 day supply is nothing compared to the other drugs...so if this is working, GREAT, let's approve it. I am on 20mg x 3 a day and cardiologist wants to tritrate me up here soon. There is a question of whether I have secondary PH, PVH to surgically created mitral stenosis/diastolic dysfunction or primary PH. The PH specialist I saw who did RHC said it was secondary to annuloplasty ring being too small/tight, causing stenosis...but my surgeon (ex-surgeon) said no...so, I still don't know. Thank God for my wonderful cardiologist who is treating me with Revatio as whatever the reason, PAP's in 70's is not normal and needs to be brought down. Gosh, I sure hope the increase works for you. Please keep me informed. Last time I chatted w/ you I thought it cut them in half? How long did it stay down? Have you considered any other treatments for your PH? I do know there is a difference in how you treat secondary vs. primary PH and yours is secondary to your failing mitral valve correct? Anyway, I am thinking of you and hope for the best. Be strong and God bless you, girlie! Dee

 

[scott.eitman]

Break down it is OK. Heck going into the surgery this year, I couldn't control myself as they wheeled me in.

I agree with Rob, but then we had the same surgeon. You are going to a great hospital and if I were you, I would make the same decision that you are making. One question that I suggest asking is about the surgeons experience with redos. This is were the skill will come into play.

I wish for you the best.

 

[queenie]

njean, I am so sorry to hear of your situation. You and I talked a little privately after my 2nd OHS in 2008, and a little after I found out a year ago that I have pulmonary hypertension as well. I am going to have a RHC soon, and my new aortic valve is headed south as well. I am hoping to get another year and a half before having to go in for the 3AVR. I am waiting for my surgeon at CC to let me know if I will still be a candidate for surgery. I'm longwindedly trying to say I feel your pain!!!!! I know you want to be strong for your family but, please give yourself permission to feel any way you want to right now and express it any way you want to. Share with your husband, you need each other more than ever now. I am thinking of you and hope you can get a quick surgery date and have an uneventful recovery!!!! Hang in there!!!!!
c

 

[DebbyA]

Norma,

I'm so sorry you have to go through this yet again. My thoughts and good wishes will be following you in the coming weeks.

Debby

 

[New Guy]

Njean,

That's some tough news to get and I'm sorry to hear it. The good news is that you've beat this thing before and now you'll do it again. You will be in my prayers.

Doug

 

[ShezaGirlie]

Houston just replied!!!
And since I still feel strong enough and seem to have gathered extra cajones, I just want to get it over with!

Well geez Mizz Norma girlfriend... I'll throw in a few cajones for you too and am wishing you buena suerte..!

If y'all are driving IH10 to Houston, let me know and we'll hook up for lunch/dinner or just get wasted..:biggrin2:

All the best to my girlfriend..!:thumbup:

 

[Lynlw]

Houston just replied!!!

I will be scheduled for a consultation with Dr. Duncan (the surgeon), and subsequent surgery, in January sometime. His secretary will be in touch with me to set up times, instructions, etc.

At first they wanted me to go up as an outpatient, just for the consultation but I flat told them, that I did not want to wait any longer and wanted to get er done! The way I see it, my heart is not going to heal itself. And since I still feel strong enough and seem to have gathered extra cajones, I just want to get it over with!

I'll let you know the dates when I have everything!

xox

I am sorry to hear this I know it has been a concern for a while, but sorry to hear it is time. You sound like Justin, just wanting to get er done, when he was told he needed his last 2 surgeries and they wanted to know when, he said "tomorrow, that way I can get on with MY work and start my recovery and then I don't have much time to think about having another surgery".. but he had to wait.
You know you are in my and so many people's prayers, I hope you can feel them surround you. I'm glad you have faith in your surgeons and the hospital. it is such a help emotionally when you made a decision and feel at peace with it. I've changed surgeons and hospitals before because I didn't feel in my gut it was the "right" choice and when we switched I felt that peace.

I understand the crying and wanting to hide your tears, ..I tend to do mine when I'm in the shower.

 

[olefin]

Norma Jean, I'm so sorry for the bad news.

Dr. Duncan was my surgeon. He was first recommended to me by my cardiologist in Odessa. I met Dr Duncan for the first time the day before surgery.

I wish you the very best and you will be in my prayers. God Bless.

 

[njean]

Well friends, there is a date now:

I spent most of today talking to the doctor's secretaries and finalizing plans. They left it up to me to pick a date in January that we could work with. So after looking at my busy calendar and trying to squeeze something between The View and Judge Judy...just kidding :biggrin2:/I]) I chose the week of January 10th.

I will be meeting in consultation with Dr. Duncan (surgeon), Dr. Stainbeck (cardiologist) and Dr. Cooley beginning Monday, Jan. 10th. Their plans are to perform another Echocardiogram and other heart related tests (?), review all my reports plus my file there from the last OHS and then present their findings and recommendations to me as a group and if all are in consensus, make plans for the surgery.

I was told to go prepared to stay at least 2 weeks. I feel good that everything will be looked at with a fresh pair of eyes, those of Dr. Duncan and Dr. Stainbeck's.

So tomorrow I will be making flight arrangements....(sorry Janie.....can't get smashed with you this time, Amiga! ) and hotel accommodations.

Can't thank you enough for your show of love and support! You fill my heart and soul with hope!

 

[nngbwh]

Thanks for the update. Sounds like a good plan.

 

[Mentu]

Norma Jean, I'm sad to hear that you must face yet another surgery. It is a possibility we all fear. I am happy to hear that you are now dealing with it in such a straight forward manner and it sounds as though you are already in the hands of the best Doctors. Dr Coolley, afterall, is probably the most respected heart surgeon on the continent if not in the world. Thank you for sharing your thoughts with us. It is painful to hear but it also helps us to face our own prospects with more courage than we might otherwise feel. Take care.

Larry

 

[tobagotwo]

I understand very well the feeling of git 'er done. When you've got the inertia, and you know you've gotta do it, there just doesn't seem to be any point to consulting and talking and waffling. What? They're going to say you could wait another six months? But what about your heart? You feel it getting weaker the longer you make it work this hard. And who can stand to wait and watch? That's the way it appealed to me. Besides, somehow it just seems like a thing you've got to face and stare down.

On the other hand, it really, really sucks, too...

I'll be tuned in to what's happening with you. I hope they don't dawdle if you're ready to go through it. The waiting can be so hard. See if you can go somewhere you really like first, and find your center.

Very best wishes,

 

[Cooker]

Norma ... you know that I have you in my prayers ... sorry I was late posting, I've had my head up my @#$ lately ... try and enjoy the holidays (((((((((((hugs))))))))))))

 

[njean]

njean, I am so sorry to hear of your situation. You and I talked a little privately after my 2nd OHS in 2008, and a little after I found out a year ago that I have pulmonary hypertension as well. I am going to have a RHC soon, and my new aortic valve is headed south as well. I am hoping to get another year and a half before having to go in for the 3AVR. I am waiting for my surgeon at CC to let me know if I will still be a candidate for surgery. I'm longwindedly trying to say I feel your pain!!!!! I know you want to be strong for your family but, please give yourself permission to feel any way you want to right now and express it any way you want to. Share with your husband, you need each other more than ever now. I am thinking of you and hope you can get a quick surgery date and have an uneventful recovery!!!! Hang in there!!!!!
c

You have always been in my mind too, Queenie because our cases are so much alike. I pray that there is a solution for you and that you hear positive news from your doctors at CC.

Keep the faith!

 

[njean]

I am sorry to hear this I know it has been a concern for a while, but sorry to hear it is time. You sound like Justin, just wanting to get er done, when he was told he needed his last 2 surgeries and they wanted to know when, he said "tomorrow, that way I can get on with MY work and start my recovery and then I don't have much time to think about having another surgery".. but he had to wait.
You know you are in my and so many people's prayers, I hope you can feel them surround you. I'm glad you have faith in your surgeons and the hospital. it is such a help emotionally when you made a decision and feel at peace with it. I've changed surgeons and hospitals before because I didn't feel in my gut it was the "right" choice and when we switched I felt that peace.

I understand the crying and wanting to hide your tears, ..I tend to do mine when I'm in the shower.

I include Justin in my prayers always, Lyn. He has been through so much and it's such a darn shame because he just a kid. He should be enjoying his life without having this black cloud hanging overhead. One thing is for certain though, that his experience in life has made him wise beyond his young years! And he will preservier. Of that I'm certain!

God Bless

 

[njean]

I understand very well the feeling of git 'er done. When you've got the inertia, and you know you've gotta do it, there just doesn't seem to be any point to consulting and talking and waffling. What? They're going to say you could wait another six months? But what about your heart? You feel it getting weaker the longer you make it work this hard. And who can stand to wait and watch? That's the way it appealed to me. Besides, somehow it just seems like a thing you've got to face and stare down.

On the other hand, it really, really sucks, too...

I'll be tuned in to what's happening with you. I hope they don't dawdle if you're ready to go through it. The waiting can be so hard. See if you can go somewhere you really like first, and find your center.

Very best wishes,

I'm not tolerating anymore waffling Bob!!!

 

[njean]

Norma Jean, I'm so sorry for the bad news.

Dr. Duncan was my surgeon. He was first recommended to me by my cardiologist in Odessa. I met Dr Duncan for the first time the day before surgery.

I wish you the very best and you will be in my prayers. God Bless.

Yes Dayton, I remember Dr. Duncan worked on you and on Danny too!

 

[Lily]

Just saw this thread Norma, feel more deeply than I can express for what you and your husband are going through, and I'm so glad to read further that your plans are in motion with this excellent bunch of doctors -- you and I have discussed before how we feel about our wonderful Dr. Cooley

You have my continued best wishes

 

[jjay32]

Best wishes Norma, you will be in my prayers.

 

[malibu82]

gosh i am so sorry that is terrible news. you are in my thoughts and prayers!