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If you have had an organ transplant then you may want to also become a member of these communities if they are applicable to your condition to share your experience:
Diabetes and Kidney Community
Kidney Disorders Community
WebMD Diabetes Community
WebMD Hepatitis Community
WebMD Heart Disease Community
Hi Luci!
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NotYetAlive posted:
Hi Lucibelladonna...hope you're having a good day today. Be safe and know that you are cared for. It's awesome having you for a friend. Have a blessed day... NYA
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Lucibelladonna responded:
Thank you! I hope you had a good day too! I'm glad we've connected through this... happy december 1st! ~luci
 
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NotYetAlive responded:
I'm so glad too, my friend. And thanks so much for all your awesome postings. I just put in a response to your latest post on the "Transplants and Mood Disorders" thread...absolutely awesome. Take care...NYA
 
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Lucibelladonna responded:
Thanks! I really appreciated your response, too. Though I haven't had time to respond just yet!
 
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NotYetAlive responded:
If you don't mind my asking, Luci, what happened that you're needing another heart transplant? How long have you been on the list? Any idea how long it might take to get a new one? I was just wondering, because though I know kidney transplant patients often have to have multiple transplants due to infections, I am unfamiliar with multiple transplants for other organs. If it's not too personal, can you tell me more about this? And if it is and you don't really want to talk about it, I understand and that's fine too. Anyway, take care...
 
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Lucibelladonna responded:
I need another transplant because all the rejection episodes I've had made my heart muscle weak and it doesn't work as well anymore. That actually wouldn't be such a problem, but since it's coupled with coronary artery disease, it's more serious. Heart transplant patients all eventually develop CAD, but it's not like the regular kind where the arteries are blocked with buildup of plaque, it's where the actual arteries harden. A transplanted heart can't be completely connected back to the body, which is why when I exercise, my heart rate takes several minutes to realize adrenaline and to calm down once I've finished exerting myself...and it's also why CAD develops. I eventually developed chronic end stage heart failure, where my only option was/is another transplant. The list is divided into 3 categories... Category 2 is for people who are sick and need another transplant but who can live their lives pretty much normally and are not on iv meds or ventricular assist this is where most are listed. Then 1B is for people who are on some sort of life support, whether iv meds or ventricular assistance, but who can do relatively normal activities still. Then 1A is for the sick of the sick...on ventilators, or who need to be in the hospital until their transplant. I am under 1A...because I have a constant IV drip. I can do normal stuff, but not without life support. I have been waiting 22 months so far. That is a pretty unusual amount of waiting time...the average is under a year. But people do wait 5 years or more sometimes. I literally have no clue whatsoever when I'll get the call...I have my cell phone with me at all times, and whether I'm eating lunch, sleeping, or taking a shower, I could get my call any moment. I will get that call when a person dies who is: preferably female, younger, same blood type, same antibodies (which means from the same geographical location as me), who is a donor, who dies in a very specific way without damage to organs but with damage to the brain, who didn't do drugs or smoke or have cancer. ETC!!! Its all very complex and I fear I'm at the mercy of fate. But heart transplants are pretty much as fleeting as any other type of transplant. The average life span of a transplanted heart is 10 years...some people live happily for 20 years or more sometimes, but that is definitely rare.
 
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NotYetAlive responded:
Wow...thank you so much for sharing all of that with me, my friend. You're definitely fighting an extremely tough uphill battle. It's astonishing to me that you're in the 1A category but are still waiting after 22 months! Unbelievable! I never realized a transplanted heart could give out so quickly...I mean, 10 years is not a long time by any means. I would imagine you tire pretty easily, and I could see how all the exertion of exercise would be a challenge, necessary as it is. It also sounds pretty scary: once your heart rate starts to realize that adrenaline rush, I'm guessing it really starts beating hard, huh? I'm really sorry you're having to deal with all of that, and wish I could do more to help. Do you have a roommate or someone nearby who can help when and if you need it? You know, I thought I was having a heart attack in 2007, and went into the emergency room, where they ran an EKG and determined that the posterior side of my heart wasn't beating at all...clenched like a fist. I was on a medication for it for awhile, but it's failed to unclench, so I'm kind of waiting with bated breath for something to happen. I liked your statement to Ella where you were talking about having no intentons of taking any further meds. I can definitely relate; it seems like any given medication, while solving one problem, creates nine others. I'm fortunate to only be on a few medications now, though I was once on as many as ten at one time. :angry: I was fortunate especially to get off of Prednisone after seven years, though it was too late to stop the severe osteoporosis that adorable little medication gave me. Is that how you got your osteoporosis, too? Well, anyway, thanks so much for telling me more about your situation. You're in my thoughts and prayers... NYA


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