Jon, being on a list requires waiting (a year, 2 years or longer?) from my understanding, and I am coming from the perspective that transplant statistics for the population is not very relevant for the individual, and who can say if there is not some advancement breakthrough within the future that will make the issue of life expectancy of heart transplants less relevant.
For some insight on the statistics, there are a number of factors that influence life expectancy ( the population and not the individual) after heart transplant including age, patient compliance, immunological match of donor to recipient and the year in which you were transplanted. However, according to American Heart Association, as of June 5, 2009, the one-year survival rate was 88% for males and 77.2% percent for females; the three-year survival rate was about 79.3% percent for males and 77.2% percent for females. The five-year survival rate was 73.1% percent for males and 67.4% percent for females. Way back in the year two thousand, there was a covered story about a heart transplant survivor, in which it said that the longest heart transplant survivor was a 73-year-old American from Michigan who had lived 24 years after the surgery. So, in the best of circumstances, heart transplant life span can be as long as this, or in all likelihood, longer.
Heart transplant is usually only considered when all other avenues have been exhausted. Even though it is not really a choice. However, it is also an option that offers hope. After a heart transplant, life expectancy is extended and usually a better quality of life is also achieved. I didn't know you were already associated with a heart clinic...I was under the impression you were not. That makes a difference because they probably know how quickly available are donated hearts for you that match your type, etc. and you probably have or should have already consulted with a surgeon rather than wait for an emergency selection.________________________________________________
QUOTE: "So I switched which seemed to be going well until now.I am now being monitered by a transplant clinic doctor and my cardiologist.I have a defibrillator they implanted back on 4/9/2009 just before my release from the hospital".
>>>Ok! That was something I had in mind when I stated an implant heart rhythm device ... recovery and pace. A pacemaker option has been ruled out by the doctors and there is no reason to question that decision, and you are under more extensive care than I had gathered from your first post.
Q:"They want to extend my life as long as possible by trying to get as much time out of this heart as possible with what medicines will do".
>>>Medication, a defrib and watching, and if you are asymptomatic, that certainly would be a consideration (but I would still get on the list). I have asymptomatic severe mitral valve regurgitation, and that condition is in the watchful category so I can somewhat identify with what you are looking at. Apparently your quality of life is not an issue, and there is a risk that quality of life would be less than you presently facing...Your situation is a life or death decision and you certainly need guidance as your decision may not be objective.
You make a good point having a doctor you can trust with your life.Because how and when they make a choice for your care can have consequences for the long term.I have already switched cardiologist once and that seemed to benefit me.I always ask questions about treatments because I trust how my body reacts to different treatments.
They being doctors again. all thought after my surgery back in 3/2009 that i would as they termed it bounce back because i was young and had fought hard to live. I believed all of that and i am sure it was positive enhancement at the time. They told me it would be 10 to 15 years before i would need transplant options. 1 year later I am dealing with it now.
Thanks for the reply. I have had to push to just get to this point. I have switched doctors once already and he switched me onto different meds right away. The origanal doctor just didn't seem to be addressing my situation. So I switched which seemed to be going well until now.I am now being monitered by a transplant clinic doctor and my cardiologist.I have a defibrillator they implanted back on 4/9/2009 just before my release from the hospital. They being both transplant clinic and my doctor at this time don't feel adding the pacemaker option to my implant won't help my heart. The 2 years is a rough idea because like you said nobody can predict an exact date.They want to extend my life as long as possible by trying to get as much time out of this heart as possible with what medicines will do. Because a heart transplant
will only last 10-15 years.I wonder if the quality of life they are offering for me at this point in time is worth the wait when getting a new heart would allow me more freedoms possibly. Then there is the time once i am on the list it could take. There is so much to wrangle through. I just keep steering this and hope i am going in the right direction with the doctors guidance.
The main reason for donor shortages in the UK are...
1. seat belt law which caused far more people to survive accidents.
2. Religious confusion.
It's amazing how many people are scared stiff they will enter heaven with their organs missing, or be resurrected to be without their vital organs. I have signed up for donorship even though I don't have anything much good to leave now, but I urge everyone to do the same. If it's left to family when you pass away, the result is usually negative because in mourning it's difficult to imagine a loved one being mutilated.
The word resurrection means 're created', recreated to perfection. No original parts are required because everything will be new. Resurrection would not require all the old parts to be used, they are worn out. We witness our bodies decaying and we know they break down into simple molecules again. If our bodies needed all the original parts for resurrection, the world wouldn't have any form of decomposition, our bodies would lie in the ground in great shape until the last day. What about people who have burned to death or drowned in the oceans to have their bodies scattered over thousands of miles, are they not deserving of resurrection because of their method of death.
So I ask everyone to seriously consider filling in a donor card and informing their family of their decision. Also try to convince friends and relatives to do the same. Rather than let our organs decay, we can at least have them used to give someone a chance to continue their life.
You certainly make a good point as well, but it makes me wonder which is the best course of action. If the average life expectancy of a heart transplant is around 10 years, would you not be better off getting as much time out of your old heart before a transplant is done? I agree, it takes time to get a match and it would take a considerable amount of faith in your cardiologist to know when to place you on the list. It would be very important to have a doctor who is very experienced in the process, tough choice..........
Jon
QUOTE: "I am now on disability, they are giving me 2 years with this heart before they put me on the transplant list.
doing this by maxing out my meds as need be unless i take a turn for the worse I am 41".
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Without a doubt you should be put on a list. No doctor or anyone else can reliablely predict the time you have left on your current heart. There a waiting period, and in the event your heart has completely collapsed its workability, there would not be any heart to transplant available. Nobody can tell you when the call will come or how long the wait will be. Sadly, this part of the transplant process falls outside of human control.
For some insight: The demand for donor hearts is greater than the supply. At any given time, about 3,000 patients are on the national patient waiting list for a heart transplant, but only about 2,200 donor hearts become available for transplantation each year. In the United States, the United Network for Organ Sharing (UNOS) determines priority for a heart transplant by grouping patients by the severity of their heart condition.
You are relatively young, and that is a favorable consideration. An EF below 29% is heart failure range, there is global hypokinesis (wall movement impairment and probably the underlying cause for the low EF.) and you should have a rhythm pacing device implanted to maintain a normal heart rhythm based on your experience with cardiac arrest and the probability the oversized heart chambers can cause arrythmia.
I am so sorry to hear about how much you've been through. I would put my trust in my doctors and get as many years as possible from my old heart before I get a new one as a new heart will not last forever either..
Trust your doctors and good luck,
Jon