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Comment by Karoger87 on February 17, 2012 at 12:12pm

Hi joe :)  I am a heart transplant patient also, I am almost 2 years out.  I am almost 25 and I had my transplant two days before i turned 23 :)    I live in north florida and had to go to tampa general for my transplant.  I have had tons of tests and stuff done.  but i have other health issues too.  If you ever have any questions feel free to message me :)

Comment by Judee on February 17, 2012 at 1:53am

Joe,

I am a double heart transplant of 12 years this past week.  I am not the typical transplant, but have been through so much, there isn't much I haven't experienced.  I am the administrator at Organ Transplants Across the Globe on Facebook.  You & your daughter would be welcome there.

I would be happy to answer any questions you may have & my private email is xchangeofheart@yahoo.com or see me on Facebook.    I have had numerous prodecdures, caths, ablations, several different ICD's, pacemaker, defibrillator, etc.  I used the Cleveland Clinic because they are # 1 in the world for cardiac care & heart transplants for like 16 years or something.  I was very ill & they have saved my life numerus times.    I am not familiar with your particular transplant center, but a friend of mine lives closer there & she may be.  Cindy Scinto, has had a heart transplant & recently a pancreas transplant.  I am currently in Florida, but travel around & always go back to the Cleveland Clinic for my tricky care.

Depending on how well your daughter is doing currently, you can decide many things.  If she is happy there & getting good treatment, stay.  If she has a tricky case, you may want to investigate where her best chances lie.  Some transplant centers do more transplants than others & have more experience.  Also have better mortality rates.  My cousin is a cardiologist & told me to go to the Cleveland Clinic.  I am glad I did.

I would be happy to answer any questions.  I am usually up late.  It's nearly 1 AM here, but do sleep in.  You can also learn alot by reading the comments on our transpant site on Facebook.  We have nearly 900 members from all over the world.  There are doctors, patients, donors, recipients, family members.   I hope the very best for you & your precious daughter.     Is she living at the hospital or able to be home?    Judee

Comment by Joe on February 16, 2012 at 5:16pm

Holly,  Thanks for the response.  I'm getting started with some book suggestions.  I expect to check in periodically, especially if I'm "freaking out"--sometimes I'm very calm and cool, then the "emotion" kicks in about this and I just get damn scared.  

...congratulations on your "new life".  

Joe

Comment by Holly on February 16, 2012 at 5:10pm

Joe,

I am a heart transplant patient-3 years out YEAH!!!! From what I read it sounds like your daughter has a defibrillator-pacemaker and possibly a LVAD? I was actually on a Total Artificial Heart for 61/2 months waiting for my transplant. It's amazing what modern medicine can do. My biggest advice I can give your daughter is try to keep excercising everyday. The more ib shape she is going into the surgery the better and faster she will come out. I know a lot of people on LVAD's and they say they actually feel like they have nothing wrong! Take that and use it to your advantage. I'm from the Cleveland area and the waits here seem to be running from 6months to 2 years. You just never know when that match will come in. This site is a great place while your waiting to get answers, blow off steam, scream and yell in frustration. We all understand on some level. Hope we get to know you better.

god Bless

Comment by Joe on February 16, 2012 at 2:52pm

David,  Thanks.  I have a reading list and that's going to get me started.  Dad Joe

Comment by David on February 16, 2012 at 7:14am

Hi Joe , am 20 months post heart tx.  and I had an LVAD  for 15 month plus a pace maker / dephibulator for bout 5 years,  any ibfo I have is yours .. just ask away ..   

                                                 David ..

Comment by belizeangaijin on February 15, 2012 at 11:34pm

Hi Joe.  Welcome to the community.  My family and I were living in Seattle when I ended up on the transplant list for a heart as well.  I never had the LVAD, but got my transplant in May of 2007 down at Stanford in California which is partnered with the VA.   Ask away!  What would you like to know?

Comment by Pete on February 15, 2012 at 5:50pm

Joe, Thank you for reaching out.  I have had an LVAD since April of last year.  I am 38 and am 1B on the transplant list.  I am happy to talk to you about everything I have learned in the last year to get ready.  I can also suggest some awesome books to read that are page turners and that will educate you.  Shoot me a PM and I will share with you anything and everything I have.  I will also give you my phone number if you want to call.

Comment by Hostess Rise' on February 15, 2012 at 5:09pm

Hello Joe

Are you a member of our heart group here? http://www.transplantfriends.com/group/hearttransplantrecipients

Once you join you can send a message to the group of heart patients. Please note in your post

to please visit the heart group and respond to your message. Some people that are new are not familiar with how to post messages and to be honest it can be confusing for many of us.

 

Are you a member of the transplantbuddies.com forum? The link to the forum is at the bottom of all pages on the right hand side. Click on the globe.  You can also visit http://transplantbuddies.com

and click on Support forums.

 

Perhaps your daughter would like to join us?  You can also start by asking questions.  I will post this thread in our heart group on the buddies forum.

 

There are so many members here and also on transplantBuddies.

 

Take care

Rise'