Looks like heart transplant may be in futire for me

[alicia]

Sadly my cardiologist tells me today if my heart function keeps detereating, I will need a heart transplant. He wants my cardiologist at Duke to talk to me about a left ventricular devise thats supossed to be new and Duke has used them. Its similar to a pacemaker/defib. So far as the valve is concerend, he thinks the valve may be too small but a larger one would probably not have fitted due to the size of mny heart so another valve replacement is not needed for now.

I go back to Duke on March 5 for them to do their own echo and to talk to me about this new devise. My local cardiologist said Im seeing a heart transplant specialist and they should take good care of me although he is still seeing me and overseeing my care here locally. Its kind of nice having 2 cardiologists looking out for me.

I broke down in his office and questioned why they advised me to have the valve replaced and he said I would have needed it done in the future anyway. I feel so lost and confused now. Im trying my best not to fall into a depression over this. They all hoped the surgery would help my heart function but its worse now than before and we are all at a loss for words. He just tells me we have to take it one step at a time.

Sorry to go on and on about this but I had to get it out and now I feel better. Well a little bit anyway. Thanks for all your support and prayers.

 

[Bunny_Rabbit]

Hi Alicia,

I'm sorry to hear about all the troubles you've been having. Especially the new info you've just received. I haven't been in your shoes, but I know one day I'll be faced with some scary options myself.

All I can say is stay strong, and stay positive. Your mind can do a lot of things. Keeping your spirits up, and keeping optimistic are the best things you can do. Trust your doctors, and never be apologetic when it comes to venting. Stress can do no good.

Chin up, and take care of yourself.

 

[Nancy]

Hi Alicia-

I'm so sorry to hear this. Have you considered maybe getting a second opinion? I know that where you are going now is a fantastic place, but with this kind of diagnosis, perhaps it wouldn't hurt to have another opinion from an equally as good center.

Are they talking about a left ventricle assist device (LVAD)?

During Joe's recent hospital stay, he was actually in the heart transplant unit, although not for a transplant. While he was there we saw a couple of transplant patients returning for a visit just to say hello to the nurses and doctors. They were looking very well.

Take care, Alicia and keep us up to date. We're all your friends, you know.

 

[hensylee]

Oh, Alicia - my tears are for you and my prayers. We have another member who has a heart transplant (Jessica O). We were so worried about you before, and we are worried again. You know that our prayers will be yours all the way through whatever you must face. Please stay with us because we are here to help in any way we can. God bless

 

[EVELYN]

Hi Alicia

I'm so very sorry to hear of your of your latest situation. I agree, I would also get another opinion....you have nothing to lose with a second opinion.

I will put you in my prayers that all will be well. Please don't give up....you will get through this!!!

Evelyn

 

[Les]

Alicia,
I (we) continue our prayers and thoughts for you.
__________________
Les AVR '93 / 95

 

[Ross]

Bunny said it best so far, I'll leave it at that and continue my prayers for you.

 

[Jean]

Alicia, adding my prayers for your future. Keep coming to us for support because all the very fine people here will extend their shoulders and helping hands at all times. God bless.

 

[Creed3]

Alicia,
I am so sorry to hear about this latest blow. This has to be an extremely difficult time for you. I can't even imagine. Please lean on all of us here, we all care very deeply about you. I too agree that you should get a second opinion. It sounds like you are getting very good care where you are right now, but it can't hurt to get a second opinion when the docs are talking about a possible transplant. My thoughts and prayers continue to be with you.

Take Care!
Gail

 

[alicia]

nancy they are talking about a left ventricle devise and IF that doesnt work AND my heart funtion keeps declining THEN I will need a transplant at Duke. This is coming from my local cardiologist and my cardiologist at Duke so I do have 2 agrreing opinions. In light of the girl at Duke getting the wrong transplanted organs for her heart/lung transplant scares me. Im hoping and praying in time and with that LV devise maybe my heart function will improve and I wont need a transplant. Theres alot of ifs,ands, and buts associated wiht this latest news for me.

 

[LUVMyBirman]

Hi Alica,

We will all be praying for you. It will be a high mountain to climb. Once you are on the top things will be brighter for you.

Keep the positive thoughts flowing. And just think, no more valve concerns when your transplanted! Brand new plumbing!
All the best......

 

[Nancy]

Hi Alicia-

I just read about that little girl. I was really torn about whether I should mention it to you in a private message or not, but you already know.

The LVADs apparently do help some people recover more normal heart function.

You will be in my prayers that this will be the case for you. You really deserve a big break. God Bless.

All the best.

 

[pegne]

ahh ali

ahh ali

I am soo sorry that you don't have better news. I feel so bad for you and that wonderful husband of yours. Please keep in perspective that there are many new advances in medicine and maybe, just maybe a miracle will come along. My brother in law had a heart attack two years ago. He was only 44 at the time. they put a stent in and then did bipass surgery. After he had 2 more heart attacks. They put a defibulator in. But then he had problems when thay were vacationing in Hawaii ayear ago last Sept. the doctors there told him he lonly has like 37% of his pumping capacity and he would probably be looking at a transplant. He now lives a sedate lift style compared to what he did before (he owned a painting and decorating business). He has his baby of a business which is propriator of 200+ storage units. He is only there 2 hours a day Mon thru Fri. I'm there on Sat. for him. My point is, they have been talking transplant for at least a year now and he even met with the Loyola Medical center transplant team but they feel it isn't time yet. It will happen only when or if things deteriorate. He was hospitalized two weeks ago for CHF and they are wanting him to come in about every 5 weeks to get intervenous Lasix. I think my sister is in denial. She thinks or at least acts like everything is fine and dandy. I know it is such a scary situation. I hope you don't need anything like that or at least they are able to hold off for a long while. I'll continue praying for you dear and I hold you in my thoughts all the time. Love Peggy

 

[maxximom]

Oh Alicia..My heart( Seriously) goes out to you. I just read your post..never appoligize for venting..that's what we are all here for.I am so sorry to hear your news. I agree with the others..It can only be to your benefit to get another opinion. Duke is a great place..but it never hurts to get a second or even a third opinion. I am not sure what hospitals you should go to..but Cleveland certainly comes to mind. I also know that in NYC ..Columbia Pres has a very good reputation for transplants and has a lot of LVAD experience. I'm sure that someone in the NYC area will respond to this.Allan and my prayers are with you and your family and we know that you WILL get through this.If you need to stay with us when you go down to Duke..we have lots of room for you and your Husband and you are welcome to stay as long as you need to. I will be in touch with you by phone
Love
Joan

 

[richie rich]

alicia

i am so sorry to hear about your continuing problems with your heart. hopefully things will get better in time. stay strong and positive.

rich

 

[Mark Wagner]

re:

re:

Hi Alicia. I am very sorry to hear of your setback. Please know your in all our thoughts and prayers. Try to just take one day at a time, and remember where always here for you. From what I can see, we have some pretty big shoulders in this group too. ... Mark

 

[ccrawford]

Keep on chugging

Keep on chugging

Alkicia- Keep the chin up. You obviously have a lot to deal with and a lot to figure out. A tough process, but you can do it; especially with the help of all your friends here. Keep on venting too-that helps. Thinking about you. Chris

 

[terry40]

Alicia

Alicia

Since I've read your post, I've become speechless. You've been through so much already, to be dealing with this now, just 1 month post-op.

My thoughts and prayers are with you for a better solution than transplatation,that the LVAD will do the trick.

Take care,

Terry40

 

[Perrster]

Best of Luck

Best of Luck

Alicia,

All of us wish you the best in this serious ordeal of yours.

If it helps, vr.com member Jessica B. (somewhere in Sweden) had a transplant and the last we heard was doing pretty well. Perhaps you can contact her for support. There are also tons of books out that are written on the subject, many of which are written by people (not just surgeons) who have first-hand experience with transplants or are transplant survivors themselves. If you dove into the research or even started to write down your own experiences, I think it would ease your mind.

God bless.

Sincerely,

 

[alicia]

Thats a good idea Perry. I think Im going to start a journal and record all my thoughts and plans for the future. Im not giving up and I will be strong! Im praying when I go up to Duke on March 5 that the echo will show some improvement and I wont need a LVAD or a transplant! Thats my goal for now.

Thanks for everybodys well wishes and love and support. I feel it so much from this GREAT site!!

Special thanks to Nancy and all her wisdom. I love each and every one of you for all the emotional support you've shown me.