Educational Process and Screening/Evaluation

And I was, I think, in my-yeah 30’s you know, when the decision- when I made the decision to donate, you know, but I hadn't really researched it until the transplant team got in touch with me and the social workers sent videos, sent lots of information, you know, just because I wasn't sure what I was getting myself into long term…I think there was a, you know, a video, VHS at the time, that long ago, you know, of what the surgery entails, what the possible health consequences could be for me, as well as some of the psychological. You know, They were concerned about my mental health and everything else as well. And so, you know, some of it looked like a marketing pamphlet, but it was all really good information…So the transplant team, the social workers, everything, they were incredible, and-and I felt I was able to make an informed decision once that information was put in front of me.

I had let them know when I was going through the evaluation process that I did have some history with mental health issues, and at that time it had been pretty, you know, pretty under control for a while. I was seeing a therapist just because of like everything in my life that was going on, including the-the upcoming donation. But there were other things too. And- But I hadn't been on any kind of medication in years. And they of course wanted me to be evaluated by their own person to see if I was like even okay to do it. And I spent like two hours talking to her, and she said she felt like I was probably fine to go ahead and do it; that she didn't feel any hesitation about it. But, you know, she just said, "If you do have any issues afterwards, you know, you can always talk to us and let us know, and we'll figure out what we can do to help you through it."

…they do a really good process. They do a health screen on you, and they say, "Yes, you're a match." And I go through the whole health screening process, and I found out I'm very healthy. I'm like, "Oh yay, I'm healthy." Like, great. Well, do I say I'm healthy, and bye? Because they always give you an option to opt-out, you know. Like, "If you're not comfortable with this, you can opt-out…” In this time, going through all of this-- and then, they have to- you have to see a therapist to make sure that you're mentally stable to handle this. And at the time I got checked, I got cleared. I'm mentally stable… I feel like [university] did a really good job of educating me 100%...the the education process, like, "Okay, this is what's going to happen. This is how the surgery is." And then, once you are educated, they said, "We're going to contact you for all the testing," so I was really impressed, like, they got all my blood work-- I mean, I think it was like 18 blood drawns. You know, like, you just sat there and they're just drawing your blood. And I was like, "Oh my goodness." And then, they're like, "Okay, your blood is drawn. We're going to do this next. You're going to go see the heart department." So then, you go see if your heart is great. After the heart, they go, "Okay, we're going to do a scan on you…And they were really good about making this whole day, so you don't go back multiple times…I was very like, "Wow. I'm impressed with this whole kidney process." And then, they really answer all your questions…And then, that social worker is always there to answer your questions, so I loved that.

four hours away. So taking her to these visits, taking her to all these classes, getting all our testing done, it was- it was kind of hard doing it, you know, on my own…So I'm very thankful that they did educate us, but it was draining. It was draining to, you know, travel so much. It was like, probably four or five times a month that we'd have to go up there and see her doctors, get her dialysis, and then do those classes, and then get a hotel, and then travel back the next day. It was- it was a long process. And it was very, very hard and emotional…The only thing that really I feel- I wish was improved, like I said, my daughter's kidneys were failing. And they said, if we can get our kidney transplant date soon, she would never have to have gotten dialysis. But because my testing process took so long, she did have to do seven months of dialysis. And I wish that wouldn't have happened. And it's just- it’s just trying to get in to those appointments. I mean, if I was already cleared and they said, yes, you are a match, I feel like that should be rush priority. Okay, so the next day or sometime this week, let's get you in and get all your testing done in one day. Get everything knocked out, so we can get this done as soon as possible. But that wasn't the case. I know my mammogram took a long time from the time they told me that I was a match for my daughter. It was probably two and a half months before I could get scheduled for a mammogram.

And since I wasn't a match…They said that I wouldn't be able to donate to him directly. They said that what people usually do in that situation is a paired exchange, and that they'd put us both into a database, and when somebody comes up in the system who we'd be able to like trade with, then we'd be able to do it…We were kind of told to expect to wait a while. And there- there were just a lot of things that happened, , you know, that he kept getting taken off the list temporarily for different reasons. And he was kind of getting sicker and sicker. Just kind of getting to the point where any little thing would put him in the hospital. And uhm, I started worrying that if we didn't do it soon, we weren't going to have a chance because , you know, if you're not well enough, then you can't-you can’t do it…his [doctors] actually had given him an article they cut out of the newspaper about a non-matching pair donation…So I called the donor coordinator and I said, , you know, "Hey, we got this article. I don't know if it's possible for us to do that or not." And she said, "We were actually going to talk to you guys about doing that and see if that was something you're interested in." I said, "Yeah, definitely…I think it was maybe three or four months later that they said, "Okay, well, we'll go ahead and, you know, start the process." And it takes forever. It just did. It takes a really long time. You just feel like it's never going to get done because there's so many things that have to come for it, and then when you think you have all that done, then it's been a year, so they have to retest and you have to do that first. And uhm…so the first- the first step just in being able to do a non-matching donation was to get it approved by the insurance company. So they had to do that first. That took about a month to get, not the transplant itself approved but the, uhm, the apheresis and the other procedures that he would need to not reject my kidney...After that, it happened pretty quick because once they start doing all of that stuff, it only takes a few weeks. And, uhm, and then when-when they're ready, they're ready.

…I got a phone call from that Advocate, and she told me that the committee had met and that she was calling me to tell me they really did not feel they had the expertise to do the surgery. And they felt the surgery could happen, and that it could be very successful, but they didn't feel like their surgeons and their team were prepared for the complexities of my sister's medical condition, and that they strongly encouraged me to go to [state 4]…they would make the connections for us so that we didn't have to start all-- trying to figure out how to do that process…We were devastated again because, you know, we'd gone through all the testing and now we're being told no, but we were being told a different kind of no. We were being told No at this facility. But a possible yes, somewhere else, and that was a different kind of no for us. It was… discouraging that it wasn't going to happen right away, but it was encouraging that there might be another round… So in January of 2016, we were connected to the hospital in [State 4] and they contacted my sister right away and had her fly out and go through testing because first, they wanted to know, "Do we feel that we have the expertise and the ability to do this? Do we feel she's a good candidate to receive-- that she could do this surgery?" all of that. So she went out first.…then she contacted me and said, "I've been given a green light in terms of being a recipient." So then I went out in February 2016, and they put me through a number of tests.

He had to go and do an antibody testing, a treatment for antibodies. And then from there, we were pretty much ready with me. Same thing, I had to get a lot of tests done and I was good to go. I'm telling you, it all took around a year for us, like his testing and my testing getting done, and it was pretty good…I had lab work done, CT scan, checking that I was good, like my health-wise, checking everything. With him as well, he had his own testing done. We went to maybe-- I'm thinking it was three meetings before surgery where they would talk to us about it. All the counsellors we actually talked to. I got to talk to a surgeon before surgery, counsellors. We had like a whole group of support which was great. They answered all of my questions.

So I called them, and I was like, "Hey, I want more information and I want to get this process started." And they're like, "Okay, come in." I mean, it was like a week or two later. "Come in, and get-and we'll show you all the information, all the statistics," a lot of that stuff. Well, they’ll-they were the ones to reach out to my doctor and everything like that. The only thing was- I had to do was show up to a lot of the appointments, getting everything tested and scans and all that stuff, and then dealing with the military side of things… I was excited, I was really happy. Because the whole process to get up to that point took about-- I think it was like six months from when I started to set up everything, when I reached out to the transplant clinic at UNM, and then by the time I was actually in the waiting room getting everything scheduled.

It was the best birthday gift I could have ever gotten. I got the news on my birthday. So I remember, uhm, that I couldn't wait to call my family and tell them that I was a match and that uhm, that it was honestly the best birthday gift I could have ever asked for. It was just another thing that confirmed to me that this was meant to be.

And I remember the phone call that I got-- after the bloodwork, that initial bloodwork where they took all of my blood [*chuckles*] out of my body. That's what it seems like. I've never seen that many vials, by the way. But anyway the, that after that, the first couple of blood tests certainly the one to see if we were match was first and-and that, I remember that phone call from, uhm, from the department there-- the transplant department. And the woman said, "Jan, I- we got the results on your- on your blood test, on your screening and you and your uncle matched beautifully." That's the way she put it. And I remember saying, "All right." Well, that was our first obstacle and so off we went. And then-then it was more of that testing.