John M. Interview

Two days before this interview, John discovered while surfing the Web that Greg (Transplant Central's founder) lived in a nearby town. Awaiting transplant and anxious for information, John joined us in a previously-scheduled day of interviews.

John: My name is John and I’m 49 years old and I’m a minister. And I’ve known for about 20 years that I might suffer the consequences of a failing liver. Just in the course of a routine physical probably I think it was for employment purposes, the kind of physicals that we all take from time to time as we change jobs, the blood test results turned up a very rare liver disease. Uh a disease that followed followed to its conclusion would result in liver failure. And I think it was a little shocking initially but then on the other hand I was in my 20’s and I was invincible and, you know, young enough to deal with something like that, and also the future held great promise in terms of technology. Uh technological advances would certainly occur between then and the time of my liver failure, which reasonably could be expected to be 10 to 20 or even more years. Well it’s now been about 20 years since that initial diagnosis and liver failure is is imminent as evidenced by blood tests and clinical symptoms.
Q: So what goes through your mind when you found that out?
John: Well as the deadline approaches of course the anxiety level increases a little bit. The reality of it all is is is much more compelling, more more realistic. Uh and I know that I need to seriously make plans to adjust to this procedure, transplant procedure, and to my life after the procedure.
John: Well as a prospective transplant candidate I guess I have very many questions about the quality of my life just prior to the transplant, the procedure itself, my life after the transplant. I have lots and lots of questions. Now there are a lot of very informed people out there, both in the medical community and patients, and many most of them are very willing to share the knowledge that they have but my window of opportunity to ask these people questions is rather small. Uh typically I meet with a specialist at at my hospital... (noise)
John: …can identify with, people that can identify with me. People that have the same concerns people that have the same health challenges. It would be very nice if I knew who some of those people were. I don’t know who those people are, I don’t know how to find those people. Uh I know that you are very interested in the cause of organ transplantation and I became aware of your existence by surfing the Internet the day before yesterday, just in a happenstance kind of a way, I came across a a letter that you had written to anyone wiling to listen. And I ready your letter and and I probably wouldn’t have even acted upon your letter except that you mentioned that you lived in a town near myself. And I wow this is a local person, a real person, not an ethereal computer-generated you know non-human, this is a real human being that’s reaching out, I should contact him. And I did that. I gave you a call and , as I said this was just the day before yesterday, and just being here for an hour this morning talking to some of your acquaintances and some of your friends I get a real sense of community, a good good sense that there are others that have the questions that I have, other that facing the challenges that I face. It’s it’s reassuring, it’s very reassuring. It’s something that I needed and I think it’s just a shame that there’s no way that, I guess I should say it’s a shame that I had to stumble across this resource by accident.
John: Well I certainly think that it would be very useful if other patients, other candidates for transplantation, were able to locate a resource such as your own, through means other than happenstance. Uh as I said I stumbled across you on the Internet just by chance, and I’m here today because of that. And to get things you want in life it’s probably a bad plan to depend on fate, happenstance, luck, things like that. If there’s a dedicated, directed, method to achieve your goals in anything in life that’s a much a much preferable course of action, generally speaking.
Q: What kind of information are you looking for? What specific questions do you have?
John: I think primary in my mind right now is I know that there is a long waiting list for, to receive an organ of any type. So there are more patients in need of organs than there are organs available, I know this. Uh and I also know that there’s a a order of sort of , the waiting list is not quite numerically ranked but what I understand is that you have to be pretty sick to rise to the top of the list. Uh foremost among my questions is how sick will I get before I get to the point to where I’m offered an organ. Because I’m enjoying relatively good health today but yet I’m sick enough, as evidenced by blood tests, to be um on the liver transplant list. So I’m on that list. But, as I said, I’m relatively healthy. I I feel fine, I look reasonably well, but my understanding is I’m going to get progressively ill and I wonder how ill will I be, how poor will the quality of my life become before I get that call for that new organ. That’s that’s a real interest to me. How sick to I have to be to get what I need. That’s a major question I have. Uh what will the quality of my life be post-transplant? Uh as I said I’m enjoying a relatively good quality of life today, if by the grace of God I receive a call today and received a transplant next week, would I be as healthy next week as I am this week? That’s an important question that I would like to ask of others. What is the quality of their life post-transplant?
Q: How is your spouse handling it?
John: My spouse is a wonderful person. Uh she’s very supportive, very knowledgeable, very very hands-on. She’s very interested in my well-being, emotional, physical, and otherwise and , she’s also without a real resource to obtain some of the information that she needs to know from the spouse’s point of view as to what to expect of me as my condition deteriorates.
Q: What are your greatest fears as you look forward?
John: Well I suppose everyone that’s on a transplant list is their greatest fear is they will not be offered an organ and they will succumb to their disease. That’s a realistic, I don’t know the figures, but they’re well publicized, that a good number of people who are on the transplant list of various types die because they do not get the organ that they need. So foremost on my list of things that I’m worried about if you will, that I’m concerned about, is I may not get the organ that I need when I need it. Uh another realistic consideration is is cost. Uh it’s very expensive to get an organ transplant. Depending on who you talk to it’s three-quarter, a quarter of a million dollars, a half a million dollars, I don’t really know that the cost is. Uh post-transplant the cost of medications are variously described as many thousands of dollars per month. Uh I have insurance, many people do not have insurance. Um will my insurance cover what I need when I need it. I don’t know that. I think I need to know that to sleep better at night.
Q: If you were to interview me, knowing that I’ve been through it, what would you want to know?
John: Pretty much those questions that I just outlined. I’d like to know how sick you were prior to your receiving a transplant.