I have been advised on May 20th that I have been put on the list for a heart transplant. Anyone that would lke to tell me their experiences I would so much like to hear.
I just got out of the hospital 7 weeks ago. I did not have transplant but had my mitral valve repared and while they were in there they found a benign tumor behind my heart which did not show up in all the exrays I had. I would think that a transplant would be pretty close to the same and the recovery would be the same. Only difference you would have to take alot more meds that I do. I also have a friend that is #8 on the transplant list and he is the one person I got all of my insperition from. Just stay positive and remember these sort of operations are done every day and the drs really know what they are doing. While you are in the hospital the nurses are taking care of your every need 24/7. Good Luck and let me know when you hear anything.
mel8801--I am curious, did you have the tumor removed at the time of Mitral Valve replacement? My son was diagnosed with a heart tumor this year and they are just watching it. They said this is a 1 in 2 million chance. Sounds a little like what they found in you. His is located in the middle of his heart on the valve strings at the bottom. It's not affecting anything right now. I do hope you come back to answer this. FLFLOWERGIRL
Hi FlFlowergirl....the surgeon did not even know I had the tumor because it was located behind my heart and it did not show up in any of the tests I had done. It was removed during my valve operation and I guess it was quite a surprise to my surgeon also. Good luck to you and your son.
Hi Lindabyland...I have a friend that just had a heart transplant He was on the transplant list for only 3 months. Two weeks after his surgery he was allowed to come home for the week-end. He lives in Sacramento Ca and his surgery was done in San Francisco, which is about 1 1/2 hour away. He even sent me pictures of him holding his old heart in his hands. He has to stay in San Francisco for about 45 days to make sure all goes well. So far all is great. He is on a lot of meds but he has his life back. God Bless and take care. Mel8801
Holy god , he was holding his old heart in his hands? Thats unbelieveable that they would allow him to do that. I mean its not like he had his alternator changed in his car and they give you the old part. Thats amazing. Just imagine looking at and holding your heart that kept beating inside you all these years to keep you alive and on this planet. Normally this is reserved for the guy who gives you your autopsy.
Last edited by Lutheran122; 07-20-2008 at 04:46 PM.
Hi Mel8801, I have had 6 tumors removed from my heart. They were located in the left and right atriums. Could you tell me a bit more about yours. I am very interested. I am also from Sacramento, CA. I had my surgeries at Sutter Memorial and Mercy General. Where and when did you have your surgery. Hope to here from you!!
Hi FLFLOWERGIRL, I have had 6 tumors removed from my heart. I was just wondering about your sons. Where is the tumor. Mine were in my left and right atriums. I am very interested. Any information would be great and if you have any questions, I would be happy to answer them if I can. Hope to hear from you!!
Hi Jak88....The tumor I had removed was called a Thymoma and it was located behind my heart and the only way they found it was when they removed my heart to repair the mitral valve my dr saw it Thank Heavens....I had my surgery done at UC Davis. The only thing I know sofar about my tumor was that it was benign and I have to go to another Dr on the 12th and he has to keep tabs on me to make sure it dosen't come back. Were your tumors located directy on your heart and did they remove them all? Nice to talk to someone from Sac.
Sorry dont have any experiences of Heart Transplant yet but my son is due to be on the list in next few weeks, he is 14. Has Hyp L HS and has had open heart surgery 4 times and now has a pacemaker. He recently caught one of the hospital superbugs and been on antibiotics for 6 wks IV and now that is our final option. Sorry cant be more help, I am also hoping to hear some positive news from anyone x
Re: Heart transplant 
I just got out of the hospital 7 weeks ago. I did not have transplant but had my mitral valve repared and while they were in there they found a benign tumor behind my heart which did not show up in all the exrays I had. I would think that a transplant would be pretty close to the same and the recovery would be the same. Only difference you would have to take alot more meds that I do. I also have a friend that is #8 on the transplant list and he is the one person I got all of my insperition from. Just stay positive and remember these sort of operations are done every day and the drs really know what they are doing. While you are in the hospital the nurses are taking care of your every need 24/7. Good Luck and let me know when you hear anything.
