It’s funny, I found this US News & World Report article in my feed recently. The timing is uncannily perfect because my doctor & nurse practitioner were giving me the cliff notes version of this discussion in my last appointment. Which I’ll have in full in a meeting on 23rd of this month when I sign surgical consents & the center will discuss such instances with me to find out what organs I feel comfortable accepting.
It’s a very personal decision & not one to be made lightly. I’ve blogged about similar subjects on occasion & related ones about less than “pristine” organs, & my thinking has pretty much remained unchanged throughout my journey.
I do know recipients who have accepted compromised organs or others that were deemed “higher” risk & done well.
It’s been an interesting week for me. My blood test results were back Tuesday, so now it’s just waiting for the drug clearance window to be past.
As this week wore on, it was finally sinking into my head the reality of how close I really am now to taking that final leap.
Also the full weight of the realization that this listing is no longer “still in planning” or a “few months down the road.”
It’s almost REALLY “officially” here. Some time this month I will begin my wait.
I’m ok with that. But no one can prepare themselves in advance for that moment when the full realization hits their brain.
Even though I’ve watched & learned from others for at least 12 years, I’ve seen the best & worst this journey has to offer.
In a way, as tough as that was to have such a wide a variance of friends make it & then others that didn’t over time, it has made me more settled with my own journey & decisions since embarking on this path myself.
I’m under no false hope or trumped up fear. I’m the healthy amount of concerned & apprehensive.
To say that I never feel uncertain, sometimes ambivalent, emotional, or even afraid at points would be a lie.
But this decision (while one of the toughest to make) is a worthwhile gamble that I have no regrets over going for.
The only true shame would have been if I had been too stubborn or afraid to take that leap when it was recommended I needed to because the time had finally come to put this card on the table.
I feel ready & in preparation for my meeting I’ve been mulling over such subjects in advance occasionally, but am keeping an open mind until I hear everything that the team has to say in way of advisement before making any final decisions.
[UPDATE 3/5: In light of a few questions I have this to add: The way my center handles high risk donors: at the pre-listing meeting (where I learn about all the different donor types) if I sign the consent, that means I agree to accept receiving the calls for both high risk donors & donors alike. It is not an auto-acceptance or pre-consent for the organs themselves. Only that I agree to consider the high risk donation pool.
At the time the organs become viable, I am given the history of why this donor is considered high risk & the potential illnesses I could be exposed to.
If I do not feel comfortable with the history, I can pass.
Usually high risk doesn’t mean smoking history. It means prison records or substance abuse in most cases.
(They also say homosexuality but only because of the risk of transmitting certain sexual diseases that could be also be passed through the blood. I think it’s time to take those instances out of the equation entirely, but that’s just me. )
They are considered high risk donors only because they put me at risk for disease transmission for illnesses I normally wouldn’t be at risk for.
In all of these cases, the risks can be mitigated & the organs are tested for these risks prior to transplant to see if any issues are actively present.
(A prison record can also mean a history of substance abuse as well but it can also mean perfect health with a penchant for bad check writing, they don’t discriminate. But there are also potential institutional-based diseases that are present in prisons that I would also need to be informed of.)]
High risk! Yes, my wife heard those exact words the day we got the call. My donor had been exposed to both, Hep-B and Hep-C …….. but I was dying. I had “coded” (flat-lined) over a hundred times in two weeks, my Ejection Fraction that fateful morning was 3%. Yes, three. She accepted the heart on my behalf and I was monitored very closely for the first year ….. I have done well, with no signs of any Hep.
I was just reading an article last week that the entire profile of where organs are coming from has changed in the past 18 months, due to the renewed heroin epidemic …….. the “high risk” organs are increasing daily.
I wish you a short wait, while on the list!
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thanks DAP as always for chiming in. Your perspective is valuable. I’m lucky that as a youth one of my first jobs was in the nursing home so I have been vaccinated against HepB which seems to have increased prevalence in institutions these days. I am less concerned with the risks of high risk donors because I know they test as rigorously as they can to head off any issues prior to transplant, but most of the diseases that put me at risk are treatable. I know they’d monitor me closely & that also makes me feel better. That said it puts me at ease knowing it is my choice whether to accept or not after I’ve been informed of any & all risks. The transparency is key to me. I’m glad you’re doing so well. People are human with problems, I think because of the shortage being so severe pre-transplant patients do have to think a bit ahead about their thoughts surrounding high risk organs. It’s certainly a personal decision but trust & faith in your center could mean they find a good match in a shorter time frame even with a small risk than a longer wait. My anticipated wait time is around 6 months once I’m fully active, but they told me it may be less. If it’s a little longer, so be it. But I’ve donned the battle armor & am gearing up 🙂