QUESTION: Was there a user here who was waiting for a heart transplant?

[HappiestGirl]

I seem to recall someone saying they were waiting for a heart transplant ??

[cashhound]

I believe that is sweetcindy.

[sweetcindy]

Yes, I have been to see the transplant doc at UPMC--Pittsburgh. I am not listed yet. My new cardiologist says...very bluntly...he doesn't believe transplants work and I would be very lucky to get a few years from one, if that. So, we are working on getting as much mileage out of my own heart. I have 80% damage and my chance of survival is 50% for 5 yrs and 25% for 10 yrs. It has been a year and a half since they diagnosed me so I am still up and walking around. I am not on oxygen at home yet, just at the hospital.
To be quite honest, I don't want a transplant and have told my family that unless I am hooked up on machines, I won't even consider one. I figure God has given me all the time He wants me to have. I pray each day for just 11 yrs, until my youngest is grown up. That is all I want. The bottom line is, what God wants for my life, I want the same, His will, no matter what it is.
Most people with cardiomyopathy die from sudden death, from irregular heart beats, I am on a wonderful drug called Coreg that lessens the chance of that and makes it easier for my heart to work. Coreg has been shown to add years to patients lives, I am praying that is so in my case.

To be honest, I could die today or 5, 10, 15 yrs from now...but so could we all. We are all going to die someday. For me, it is the quality of life, not the length of it. I count each day as a gift, as we all should. The recent passing of elf has really upset me...she has been ill for some time and we had a lot in common with hospitals, meds and such. It has made me so upset...not only because I am going to miss her terribly but also because it has reminded me of my own vulnerability.

I guess what I am trying to say is...life is just so precious. Each breath is a gift, a real gift. I think we all take that for granted. Those who appreciate the life that is given them are those who really live.

[WallyK]

Have you head of some sort of assist device called a lion heart?

[sweetcindy]

No, I haven't heard of that? I know of the LVAD, it is supposed to be a temporary bridge to the tranplant...maybe that is the same thing?
I read an article about the AB180...a woman, age 20, had the same cardiomyopathy as me...they put in the experimental pump AB180 for two weeks. Her own heart stopped completely, she had no pulse but was still alive, the pump did the work of her heart and let her own heart rest. She is back to normal now, all her heart needed was a rest. This is still experimental but I would love to try it. I am trying to look for more info about it. I think that is what my heart needs, complete rest for a week or so...it is something I would definitely want to try.

[HappiestGirl]

Ok, here is why I asked, I was at the hair salon here in PA... and one hairdresser said to another.. did you hear LuCinda died? And the other said no... and the first said, yeah, don't you rememember, she was waiting for a heart transplant, she didn't get one, and she just passed away.

Well, anyway, that sounded REALLY familiar to me... and I thought "Wait a minute! Wasn't there a Cindy/LuCinda in PA on DOD waiting for a transplant Wierd... I wonder if its the same person... "


And then when I saw the post about Elf (whom I did not know).. It reminded me of what happened at the hair dresser.

Anyway- I guess its not you- Glad you are alive and healthy. Thats really creepy that there is a "Lucinda" and a "SweetCindy" both in PA, both needing heart transplants- there can't be too many of you!! DO you know her?

Glad you are well though!!!

[sweetcindy]

You just gave me chills!!!!!!!!!!!!!!!

My real name is LaCinda!!!!!!!!!!!!!

OMG!!!!! That is too wierd!!!!! Oh, how strange...there was a Lucinda....how sad...this is absolutely freaking me out here.

Oh, how awful...I hear of many who are waiting for a heart and they die waiting...there are just not enough hearts to go around...

I am just in shock here...wow....

What part of Pa was this hair salon?? I am in Altoona PA.

[WallyK]

The lion heart is a device that does not replace your heart,it improves it.It allows the heart to not have to work as hard.Used mainly in pts unable to tolerate transplants.

[sweetcindy]

Originally posted by WallyK
The lion heart is a device that does not replace your heart,it improves it.It allows the heart to not have to work as hard.Used mainly in pts unable to tolerate transplants.

hhhhmmmm....now that sounds very interesting...I am going to ask my cardiologist about that!! Thank you so much for the info!!

By the way, I am sending much love and prayers to you and elf's family...I fully intend on seeing her again one day...words don't do justice...just know I care deeply and am praying for you all.

[WallyK]

I do not know how to send you to their web site so here is information that will help you find out more on it.I know Elf had printed this out for a reason.
Arrow International Inc. Announces First Human Use of A Fully Implantable Left Ventricular Assist System.

[sweetcindy]

Oh...thank you so much....I will look it up online. Oh, dear sweet Elf...

thank you again

[wss4]

Hi Cindy,
I was just reading this thread about your transplant and wanted to share some of my experience with you. Don't know if it will help but felt the need to share.
Both my father-in-law and my aunt were diagnosed with heart disease. They both had 80% damage. My father-in-law was diagnosed about 5 years ago after a long life of abuse. Alcoholism, which he is trying to battle with some succes, and a long history of heavy smoking. Needless to say he does not qualify for a transplant because of other health issues, but he is doing well.
Now my aunt was just the opposite. She was diagnosed about 3 years ago after a life of very little abuse. It just tends to run in our family. She was on the transplant list. The docs has decided to admit her into the hospital untill a heart became available even though she was doing relatively well out of the hospital. She had just decided not to have the transplant because the docs had told her that even with it she would be quite ill and possibly bedridden for what extra life she would gain. She did not want that. She wanted to remain active. Two days after deciding not to have the transplant she had a massive heart attack and passed on. But knowing that she would have wanted it to end that way made it acceptable to us.
I don't know if this will help or even if it is anything that you care to hear about but I thought that you would like to know. To me it shows just how God puts his hands on our lives every day. Even though it may not appear so.
God bless you and best of luck in life.

[sweetcindy]

Thank you for sharing that...

I was so mad when I first got diagnosed...I was 31 at the time, never had a thing wrong with my heart, didn't drink...etc. I do smoke but the doctors have told me that didn't cause this. I have ideopathic cardiomyopathy...although they believe it was caused by the flu virus attacking my heart. One doc said this is so rare, like I won the lottery in a bad way. My arteries are not blocked at all...my heart is enlarged and doesn't pump like it should, my heart muscle was damaged 80%, most likely it was viral so antibiotics wouldn't have helped. I could not have prevented this nor can I get rid of it...it is a most lousy disease.
I think I could have accepted this at age 60, 70...but at my age, it is so hard to understand. When I had my echo today...the woman told me of a boy, age 15, the flu attacked his hair follicles..he lost most of his hair. He is extremely lucky that the virus didn't attack his heart. What I am trying to say is, I had no idea how dangerous the flu can be. I go to my cardiologist and the waiting room is filled with elderly people...my doc said I have the heart of a very sick 80 yr old.
I fear that my life may end as your Aunt's did...I worry about sudden death each day. It makes no sense...but I do know God has a perfect plan...whatever happens, His hand is in it, I know all will work out for the best.
Besides, there are children, babies with this disease...how can I whine when those dear children won't see as many years as I have? I must thank God for what I have been given...I say to myself...no matter what the doctors say...God has given me a day to be born and a day to die. After many tears, I have accepted His will, even though I can't imagine why He would take me home before my kids grow up, I still trust Him.
A very strange turn of events...
First I was in shock, then I was so mad, now I am peacefully resigned...and thankful for this illness. Crazy? No...facing death has shown me how to live, what irony...
I am 100 times the person I was just a year ago...I have untold joy and peace...I am assured victory over death and I have eternity to look forward to...there will be no tears or pain...I live and breathe this every day...for years I didn't. At one time in my life I even considered suicide...now I count each breath as a sweet gift.
I don't care about money, pride, material things, jealousy, etc.
I still get shutoff notices for my electric bill...they just don't ruin my day anymore.
I go to God....I say...here you go God, take care of this...I am gonna have a wonderful day and smile...let me know how it works out.
Now that is life!!! Peace, joy and contentment!!! I have a wonderful life!!! No matter how long it lasts!!

Gotta be the goofball still...
So, I asked God...since I figured out this living deal...can I do some more of it? LOLOL

I am waiting patiently for His answer.

[HappiestGirl]

The hair salon was about 20 mins outside of philly.

Glad you are okay.
Glad its not anyone on DOD that they were talking about.

[sweetcindy]

Originally posted by HappiestGirl
The hair salon was about 20 mins outside of philly.

Glad you are okay.
Glad its not anyone on DOD that they were talking about.

Thanks for letting me know.