I saw my heart surgeon yesterday and no surgery scheduled yet

[Dawn-Marie]

Hi everyone -

I saw my surgeon in Erie yesterday and got some answers. He told me from the TEE and the cardiac catheterization results that the good news is that my arteries and heart are perfect...no problems at all. But, i have a congenital deformation of my aortic valve and the stenosis is so bad that it is "critical". He said the main problem (which i already know) is that it's very unlikely i will get off the ventilator after the surgery. He's going to talk with a cardiologist in Erie today and ask him if he thinks he could do a Valvuloplasty on me, which he said will buy me 3 to 6 months time and in that time he wants to have me use a sleep apnea machine at night (even though i don't have sleep apnea) to see if it will build up my lungs at all. My main issues that cause me not to breathe well or cough at all are that when i had cancer when i was 29, besides being in my spine it also spread into my right lung, so they had to remove part of it. Plus i'm paralyzed at the level where i have no ability to cough at all, plus my back collapsed to the side after the surgery and i have severe scoliosis. All of this combined is going to cause me major problems with this surgery.

He told me i'll have to make the decision of how long i want to stay on the ventilator after the surgery if they can't wean me off. I know for sure that i don't want to be on it for life. I'd be stuck in a nursing home, laying in bed with a machine breathing for me, and that is not my idea of what life is all about. He told me i'd have to think about 2 weeks time or 2 months, or longer. What i'm not sure of is if i can't get off of it in 2 weeks, what would make the difference where i would get off of it in 2 months? I've been on a vent before after surgery twice and i HATED it!!! I don't want to prolong my suffering for nothing...i'd just rather be taken off of it (even though it will be terrifying i'm sure not to be able to breathe)!!

If the cardiologist doesn't want to do the Valvuloplasty, then he just wants to go ahead immediately and do the AVR, as he said it's just a matter of time when i'll have another episode of congestive heart failure (which i had happen the beginning of last November).

So, that's where it stands for me right now. Thank you very much for being here for me and letting me vent. I have no family at all and it's hard having nobody to talk to. You're a really nice group of people.

Dawn-Marie

 

[WayneGM]

You've got good reason to vent so vent away. I'm sorry to hear about your situation. Best wishes and good luck for a successful resolution.

 

[hensylee]

oh, Dawn-Marie, I am so sorry to hear this. You have some hard thinking ahead of you. Wish you had someone (in person) close and near to help you out. In the meantime, we are here and will be here every day 24/7. Vent away or just chat when you feel like it. Wishing the very best for you. Blessins............

 

[marie]

You certainly have a tough decision to make. You're in my thoughts and prayers. We'll be here for you.
Earline

 

[Mary]

I am very sorry to read your news, and I regret that you are forced to make a decision on your care.
If you were to remain on a ventilator for a long period of time, I believe they would transfer you to a facility that cares mainly for patients on ventilators. Unfortunately, those facilities are often far from the originating hospital.
Perhaps the availability of care is another avenue that you should ask about. It might help you reach a decision more easily.

 

[PJmomrunner]

Dawn-Marie it looks like you're stuck between a rock and a hard place! It seems like if there was some kind of machine/technique to help you expirate mucus (like a coughing machine) you'd be in a much better position. My searches show that at least a couple US patents have been granted for such machines, but I didn't find anything very recent and I'm not sure any of what I did find was very successful. Have you (or has your surgeon or other doctor) consulted with a pulmonologist and thoroughly explored the latest research relative to assisting quadriplegics to cough?

You certainly do have a full plate. I will keep you in my thoughts.

 

[njean]

My Dear Dawn-Marie,

I wish there was something I could do for you other than just ask God to get you through this. Cases such as yours makes cases such as mine seem so small in comparison!

You mentioned you have no family --- we are your family & we're here to listen to you whenever you want or to lend a shoulder to cry on when you need one. I will be praying so much for you that you will come out of this all right & be able to have a normal & meaningful life. Best wishes my friend!

 

[Nancy]

(((((Dawn-Marie)))))

This is such a hard place to be in. But there seemed to be a glimmer of hope with the valvuloplasty and the (I guess) C-Pap or Bi-Pap machine and it possibly making your lungs a bit stronger so you could better weather surgery. Hope is always a good thing.

Your surgeon sounds like a gem of a guy and he really cares for you.

God Bless.

 

[Curtsmum]

So sorry, sending thought hugs and payers your way. Sorry i can't be of any help, will be thinking of you best wishes.

 

[Jkm7]

Dawn-Marie.... You have family here. This community is a real family IMO and when you need to vent, cry, scream, laugh.....we are here.

You certainly have hard decisions to make but it sounds like your caring surgeon will help you see your way through what you face.

Sending warm cyber hugs and all the very best wishes.

 

[ctyguy]

Dawn-Marie...

You really sound like a trooper. Makes my AVR seem like small potatoes. I can't offer you any real wisdom about the choice you have to make but I can say that you will be in my thoughts and prayers. I hope the Valvuloplasty option works for you and gives you the lung capacity you need for the surgery and recovery.

 

[Dawn-Marie]

Hi everyone -

Sorry it took so long for me to get back to you, but i had an appointment in Buffalo today at a wheelchair clinic, since i'm getting a new wheelchair. It's a 2 hour drive each way and i was at the clinic 3 hours, so it's been a long day.

I wanted to thank you so much for all your thoughts and prayers. They help more than you'll know.

I'm doing much better today with this than i did Tuesday (after i saw the dr.) and Wednesday...About all i did then was sob on and off and that doesn't do much good. I've faced death before when i had cancer when i was 29 and it came back 3 times, and i've made it through. I'm not scared of death at all...i've truly always had a strong belief in God and in Heaven. I think death is as much a part of life as birth. The thing that scares me the most is being stuck in a nursing home on a ventilator. So I, too, am hoping that doing this Valvuloplasty and then the sleep apnea machine will help me. I've never heard of this sleep apnea machine helping quadriplegic's lungs, but i guess they want to give it a shot. What they usually do with quadriplegics is something called a quad assisted cough, but they wouldn't be able to do it after heart surgery since it is somewhat like the Heimlich Maneuver. The Pulmonologist that he consulted apparently thought it "might" help. If it doesn't, i guess he'll just go ahead and do the surgery and take the chance i'll get off the vent. He does realize i don't want the ventilator and he'll let me be taken off after the time i've decided upon. It won't be easy but, as i said before, life on a ventilator wouldn't be the life i would want. Plus i'm really worried about having a stroke (which i guess is a complication of the Valvuloplasty). Having a stroke on top of spinal cord injury probably would also make me get stuck in a nursing home. I'll just pray that everything turns out okay (or that God will give me and ability to be at peace with it if something bad happens). There's not much else i can do.

Thank you again everyone for everything. It helps so much to have people to talk to. You're a really GREAT group of people!!!

 

[maggiemay]

all my prayers

all my prayers

DEAR Dawn Marie, my thoughts and prayers are with you, like you said you have been through a lot and look who is still here YOU! Best wishes.

 

[cp172]

Hi Dawn Marie,

You are in my prayers. VR members are prepared to chat with you anytime. Our common problems make a strong bond that runs across the internet linking folks around the globe. We are family and we are here for you.

I look forward to hearing good news from you in the future. I believe in angels and miracles. I pray God's hands will be upon you.

 

[hensylee]

glad to hear from you, but the news must be so daunting for you, although you don't seem to have any choices but to get on with it. It must be truly hard for you to be stoic in circumstances such as this.

What you will have to go through sounds so complicated, but then you are starting out with a complicated set of things. We will join hands to walk along with you all the way in this awesome journey. Some of us have harder roads to travel - yours is maybe one of the hardest we have seen. Blessins.........

 

[njean]

God Bless you a hundred times over! I know your inner strength is God given & I pray that everything turns out positive for you!