Learnin' Stuff
It's been an interesting couple of weeks in which I've learned some things from my transplant cardiologist, experienced some wonderful feelings of normalcy, and had some big setbacks.
I'm kind of pooped today and Duke is playing in the NCAA tournament, which means my editor is preoccupied. So let's just concentrate on the learnin' stuff for now, and I think I'll just bullet-point it for ease.
I met with Dr. Masri (my transplant cardiologist) on March 15. Here's what I learned:
There are 9 cardiologists and 3 transplant surgeons on the UW Heart Transplant Committee. These 12 people are the ones who decide if you make "the list."
Your assigned cardiologist presents your case to the committee for consideration.
Typically, this cardiologist is sort of "in your court" because she has come to know you during your evaluation period, while the remaining committee members are able to be a bit more subjective because they've never met you. You are simply a case under consideration to them and they look at you clinically.
The UW committee vote was unanimous that I should be added to the list. There was not a single argument against me. #NailedIt
Despite my competitive streak, UW won't divulge how many people are currently on their list, but as of June 2017 there were 43 people listed.
Knowing how long it takes to go through the approval process and taking into consideration that some people get their transplant, others get better and are removed from the list and still others die without receiving a transplant, I'm gonna guess that there are currently no less than 40 and no more than 50 other people on the list at any given time.
UW performs approximately 68 transplants per year (remember, that waiting list is always just a snapshot in time).
80% of the people listed at UW are O Positive (including me) while only 40% of the general population is O Positive.
O Positive people are universal donors but can only receive O organs.
Being an O means a longer wait due to both factors listed above (# and limits).
Size matters a lot when it comes to moving "up" on the list because they will not give you a heart that is 10 cm larger or smaller than your current heart:
The majority of the people listed at UW are male and are quite a bit larger than I am.
The majority of the women listed at UW are larger than I am (I clock in at a diminutive 5.275 feet).
My relative small size will help me to get a heart faster as any of the smaller O hearts that come in to the region will be more likely to match to me in size.
Most of the time, recipients learn approximately 12 hours in advance that they have been matched to a new heart.
10% of the calls made to recipients to come to the hospital for transplant end in no transplant happening. This is because the patient learns of the heart before it is removed from the donor. Once the heart has been removed, unforeseen issues with it may arise.
So those are the facts... but the meeting with Dr. Masri was also very emotionally impactful. She shared with me that it was perfectly normal that to be not only happy about making the list but also extremely upset. She explained that this doesn't have anything to do with being optimistic about the eventual outcome or having a negative viewpoint, but rather it's a product of what I have been through. She reminded me that I have been slowly making behavioral modifications for 15 years and because they've been so slow and gradual (until last Fall), I still had a feeling of normalcy. I felt as though I was living a life as full as any other, even though I had given up a great deal already. I was comfortable. I knew my heart very well.
And now... well, now I'm being asked to take this giant leap. And you guys, it's fucking terrifying. And I'm pissed. And I'm really, really sad. I don't share it much here, but this is unbelievably hard and I don't want anything to do with any of it. I want to get in my car and just drive and keep on driving away from this and to some new place with a different reality. I don't want to be stoic or brave or heroic.
And it was beautiful to hear from my doctor that of course I feel this way. She even said that if I didn't have these feelings they would do a psychological exam to make sure I was mentally fit enough for the procedure. God, you guys, it was such an incredible release because sometimes I'm ashamed of how ungrateful I feel for this impending "gift" and I find it hard to think of it as a gift because even though I desperately need it I DO NOT WANT IT.
And yet I do. If I wasn't already so tired all the time, the emotional roller coaster would be exhausting.
Here are some FAQs, because you've asked and in layman's terms because that's how I understand it all:
Q: How are donor hearts matched to recipients?
A: There are four factors in the matching process:
Geographical: The donor heart sits within a certain geography and must first be matched to a recipient within that geography. These geographies are called "regions" and there are 11 of them in the United States.
Within that geography, the heart will be matched based on blood type and size, and maybe some other factors I don't know about yet.
Among those recipients matched to the heart, the sickest will be at the top of the list, in this order.
Stage 1a (unable to live outside of the hospital)
Stage 1b (living outside of the hospital with mechanical assistance)
Stage 2 (living outside of the hospital without mechanical assistance)
I am listed as Stage 2.
Assuming all other factors are equal, the person who has been waiting the longest will get the heart.
Q: How many heart transplants happen every year in the U.S.?
A: Approximately 2,000. Sadly, most donated hearts never make it to a recipient. This is because there is a 4-hour shelf life on a heart once it is removed from a body. There is a new protocol in final clinical trials that I am participating in called "Heart in a Box" (no, it's not like "Dick in a Box," pervs). This extends the shelf life of a donor heart to 10 hours.
Q: You are listed with the University of Washington Hospital. Can't you be listed with multiple transplant centers to up your chances of being matched?
A: Yes, due to the shelf life of a donated heart, you can go through the matching process with any heart transplant center that you can physically reach within 3 hours. Because I live just outside of Seattle, only other heart transplant center that I could possibly reach within 3 hours is in Portland (and that is traffic-depending). However, the Portland hospital is still within my geographic region and it is rather pointless to list with them as donor hearts are mapped to a region, not a hospital.
Extremely wealthy transplant patients with access to private jets (famous example: Steve Jobs) have an advantage here as they can get to more transplant centers by jet than the average person can by car. I believe there are also some transplant programs that will provide private jets to the sickest people... but I am not among the sickest people.
Q: I am extremely wealthy. Can I provide you with access to a private jet that will stand by and wait for the call so that you can be listed in multiple regions with multiple transplant centers?
A: Yes, and thank you. I have no pride when it comes to saving my own life. That being said, as UW is rated #6 in the nation for heart transplants, there are only 5 other transplant centers that we would consider, and they are listed in terms of ratings for success: They are: The Mayo Clinic (Phoenix), Cedars-Sinai (Los Angeles), Vanderbilt (Nashville), Duke (Durham), University of Pennsylvania (Philadelphia).
Q. (This is for my Houston friends, because I know you're thinking it.) Shouldn't you move back to Houston as it has the greatest medical facilities in the world?
A: No. Even if I could handle the stress of purging my house, listing my house, selling my house, packing my house and moving cross-country, the University of Washington transplant program (at #6) is much higher-rated than the highest-rated Houston transplant center (Methodist, ranked at #15).
Q: What is the typical wait time for people on the heart transplant list?
A: Due to all of the factors listed above, there is no "typical" wait time. I have things working both for me and against me. It's kinda the luck of the draw. My transplant surgeon guestimated I might wait 2 years. And we have perhaps shortened the time as we're participating in "Heart in a Box" as well as have agreed to accept a heart from a high-risk donor.
Q. What is a high-risk donor?
A: A high-risk donor is a known drug user, sex worker or person who participates in high-risk sexual behaviors. The risk here is HIV or Hepatitis C.
HIV and Hepatitis C take 48-hours to confirm via testing. So a high-risk donor who dies without being tested for these things within a 48-hour window may have HIV or Hep C. That being said, due to medical advances, I have a better chance at living with HIV or Hep C than with my own heart.
The opioid epidemic in the United States has a ghoulish silver lining for those awaiting heart transplants: There are a disturbing number of young, otherwise healthy people who overdose on opioids. These overdoses do not harm their hearts... but they are considered high risk donors.
Q: Has UW ever given a heart transplant recipient HIV or Hepatitis C?
A: No. This has never happened.
Q: What is the recovery time for a heart transplant patient?
A: 3 days in ICU, then 7-10 days in the hospital, then 6 months to a year, many factors depending.
Q: Will you be able to return to work after you recover?
A: I get this one a lot and it kind of amuses me. Can we just save my life before we stress about this? Some people are able to return to work, some people aren't. There are no guarantees.
Q: How long will you live after your transplant?
A: Again, there are no guarantees. The median age for survival for heart transplant is 13 years. I plan to live longer than that.
Q: Will you be able to drink alcohol after you get a new heart?
A: Depends on who you ask. You might be surprised how little this actually matters to me.