I Need Help / Answers!

Hi , my name is Sylvia. I'm 38 yrs old with a husband and a 17 yr old son. I got my bi ventricular device put in on July Th 2011. When he went to put me in to defib, I wouldn't come out of it... they had to shock me 15 times to get my heart back to regular beats.
I'm in CONSTANT pain where my incision site is and on the side of my left breast. Surgeon says everything is fine. BULLCRAP!
I hurt all the time! my heart doc did a echo last month and ejection fraction rate is still at 15% . So he refers me to St Luthrens Heart Transplant center for a consultation....
Errr, just passing me along { pisses me off } in South Bend Indiana.
Only two options there are a VAD { half a heart covering my left rotted heart lobe}, or a heart transplant.
I didn't go to the appointment. I don't know what else to do, I don't know how much time I have left to live, I'm scared and VERY depressed! SO very fatigued all the time ,
sleep sleep and more sleep!
I also have MS. { complicates my case} i'm on Coreg 12.5 twice a day and vasotec 10 mill twice a day.
Please Anyone have any advice for me on how to proceed or if it's even worth it? I need some help with ones who have been in my boat!
Oh this all happened form a UNKNOWN virus!
Now I'm stage 3-4 or stage D , from what I've read i'm on my last stage of life?
Thanks so much Sylvia ~

7 Comments

Dear Sylvia

by janetinak - 2011-10-28 03:10:37

You have certainly come to the right place for help & support. I wish I could offer some advice but do not have any knowledge to pass on. I just want to wish you the best & ask you to hang on. I am sure that with the wisdom of the membership here you will get some good advice.

Thinking of you,

Janet

janet

by Sylvia38 - 2011-10-28 04:10:01

Thanks so much !

Don't Give Up

by mike thurston - 2011-10-28 04:10:52

Sylvia,
I agree with the comment about Methodist Hospital. A fellow Mountain Biker I know around your age who also had a virus attack his heart recently (July) had a Heart transplant there. He is doing well and may even return to riding. You have a lot to live for so don't give up.

Mike

by Sylvia38 - 2011-10-28 05:10:15

From my posting it does seem I want to just give up huh? But I really don't. I need to lose weight , it's so hard when I take 80 mill of lasix twice a day. and let's face it , If I had will power , i'd be a size 10 along time ago...lol , i'm a size 24 and counting from all this fluid buildup. Thanks for the good wishes~
Good luck for you also ~
Always Sylvia ~
I will look in my insurance info and see if Methodist Hospital is on network, Thanks !

Dave

by Sylvia38 - 2011-10-28 05:10:45

Thanks for your comment. I guess Indianapolis is closer for me that Fort Wayne. I wish this was all a dream
{ nightmare } but in my heart I know it's real. I have to get online ASAP and look for a in network doctor who will give two shits about my life! Some are just so impersonal , like Ur a Guinea pig. I'm still in a state of shock , I thought having a bi ventricular implant would cure me , or add years to my life, but I still feel the same. i don't want a heart transplant! I just want to be normal , but I guess it is what it is. lots of tears with all this . site pain 24-7 , no meds touch it except Percocet 10/325 and two at a time , for 6 hours I get relief...
Once again Thanks you and God Bless .
Always Sylvia ~

hope

by Tracey_E - 2011-10-28 06:10:02

What a tough situation you're in! I'm so very sorry. Your dr sounds like a moron- everything is fine then a referral to a transplant center? You need a dr who listens when you talk and tells you what is going on rather than brushing you off. First thing I would recommend is reschedule that appointment and learn all you can. The news may not be what you want to hear, but it beats wondering and expecting the worst. What you've written sounds serious but not hopeless. The second thing I would recommend is some counseling. Sometimes we get overwhelmed and it can be helpful to get a neutral outsider to help us sort it out and process it. Whatever you do, do not give up hope! We're here if you want to vent or chat. Wishing you the very best.

Sylvia

by walkerd - 2011-10-28 06:10:12

I would recommend that you see if you can go to Methodist Hospital in Inianapolis, they have some of the top notch heart doctors and if need be transplant teams. I see a cardio doctor in South Bend, Dr. Ramon Mitra he is very good well at least he is for me as I credit him for saving my life. I have been told that sooner or later I will need a transplant. I have a friend that had a transplant over four years ago and you wouldnt know it if you didnt know he had one. I do know what your going thru to a point, Lutherens is a good hospital but I wouldnt trust anywhere well in this state other than Methodist. If I can be any help pm anytime.

dave

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