So if you can get a heart, that means your cardiac issues are basically solved, no? What's it look like as far as availability and etc. with the transplant?
My physical defects will no longer be an issue, correct. Of course, there will then be all the anti-rejection stuff to worry about, and where as now a fever means calling my doctor for some antibiotics, it will mean a trip to the ER. Due to the drugs I have to take my immune system will be as effectively compromised as an HIV/AIDS patient.
What threw me off was when I asked about quality of life if we do a transplant and my doctor began saying things like, "survivability rates are 80% for 10 years and 75% for 15 years." My mind heard 20% chance of dying in 10 years, 25% in 15. Now, all things considered, being told I have favorable odds for 15+ years would be fine, but I can't stop thinking about my daughter. I want a guarantee of at least seeing her graduate high school, and won't honestly be happy with anything short of seeing her married.
I have since calmed down a bit and realized those statistics are based on averages, which are predominantly based on people in their 50s and 60s. Hell, 10-15 years for them is average lifespan anyway. I am finding stories of 30-something heart transplant patients who have been going well over 20 years now with a normal quality of life. That has done a lot to alleviate some of my stress.
Is it possible for them to do the operation THEN a transplant? While you're sitting on the transplant list waiting for that one-in-a-million chance of a good match, you still have issues with that conduit.
But see, that is the kicker. The doctor suggesting a transplant doesn't believe I will survive the surgery to replace the conduit. If the surgery was an option in his mind then transplant wouldn't have been mentioned. The doctor that thinks I can survive the surgery still can't give me better that 75% odds, and that was with a "pulling this out of my butt" face. So, best case scenario is my choice is 25% chance of dying now or 25% chance of dying in the next 15 years.
But as you point out, I will be looking at a reduced quality of life while I wait.
It was scary, that time. My wife (then my girlfriend) and I were taking her to dialysis almost every day, our college grades were suffering, and the bills were incredible. And there was often the thought that she would die before we got a transplant (that is, until her sister volunteered).
The one blessing I have come out of this with is the discovery of my family's apparent secret wealth and generosity. I have had an exceptional number of offers to help pay bills and make sure that we only have to worry about my health if it comes down to it.
I'm not specifically familiar with FK's case, but his descriptions indicate at least a Patent Ductus Arteriosus (infant hole-in-the-heart) with some kickers (malformed aorta?). He mentioned it being part of a relatively unknown syndrome too and I'm sure has remarked on other congenital issues, possibly associated with that.
Transposition of the great arteries with septal defect, tetralogy of fallot, and multiple leaking valves. My floor nurse in the hospital this weekend admitted she had to Google transposition of the great arteries because she had never dealt with it before, after multiple years working on the cardiovascular floor.
There's a potential for a lot of drugs for quite some time after the operation, but I suspect he already takes quite a few and it'll be a case of supplanting some of those or changing the dosage.
To emphasize the number of drugs I am taking, here is my schedule sent home with me from teh hospital. Some are for allergies/asthma, but there it is.
I hope this thread re-inforces with those who maybe haven't got around to it, or have forgotten, that joining the organ donor register is a very good thing (
here is a link to the US register, most countries have one). It doesn't cost anything and it gives you the very warming thought that should something happen to you, then you can help give several people the gift of life
Indeed, not sure about elsewhere but in Australia they give you the option to sign up when you get your drivers license (no confidence in probationary drivers?
) or renew it. My whole family is signed on.
Also need to make sure your family is aware of your wishes. I have heard many sad stories of relatives blocking the donor of organs even if the donor signed on the register.
In my state you can just sign the back of your driver's license, but there are all sorts of fake horror stories about EMTs not working as hard if you have done so and whatnot.
But your family does actually make the decision, so you do have to emphasize to them that is what you want. Since it often means removing you from life support after maintaining you on it just long enough to harvest your organs that is a hard decision for some.
Here's the takehome message. You outlived this guy. You with all of your health problems and your medicine and surgeries and genetic raw deal out-lived the uber-healthy, marathon cyclist. This guy woke up last Friday, like any other day, everything going perfectly normally, no major health problems, put on his helmet, got on his bike, and was pronounced dead shortly thereafter.
You're also guaranteed to outlive the guy who's heart you're going to get if they do the transplant. While you're worried about whether his heart will be accepted by your body and keep you alive, that guy didn't make it. His family, much like the bicyclist last weekend, will take some comfort in the fact that their child/husband/father/brother (I assume gender matters in a transplant), will be helping to keep you alive with their organs. A lot of people got bad news last weekend, some of them wished they could have been getting yours. That's not to say that you didn't get a raw deal. You did for sure. But you never know when your time is up and for at least one guy who looked like he'd live forever, it was last weekend.
Honestly, I have given this a lot of thought. It is honestly hard for me to feel good about the idea that my life will come at the cost of another. I do know that there will likely be a letter written to some family whom I have never met assuring them that I will not waste the life their loved one had given me.
