Interview with Ray Johnson

Interviewed by Ashley Post on October 24, 2000

BIOGRAPHICAL SKETCH: 

 

The person interviewed was Ray Johnson of Graham, North Carolina.  He is a man who has had a liver transplant.  He had to have this liver transplant because of having the hereditary disease Alpha-1 Antitrypsin Deficiency.  He was diagnosed with Alpha-1 about 17 years ago and was told he was going to have a transplant two years ago.  He was on the waiting list for about 14 months and only had his transplant four months ago.  Ray had to have two transplants, almost back-to-back.  His first transplant was in late May and his second transplant was the first of June.  He has a wife and two children.  At the time of the interview, his son was 18 and his daughter about 27 years old. 

 

Excerpts from Transcript

 

Excerpt 1 | Excerpt 2 | Excerpt 3 | Excerpt 4 | Excerpt 5

 

Excerpt 1

 

Background: 

This excerpt describes how variable Alpha-1 Antitrypsin Deficiency can be.

 

Excerpt:

The Alpha-1 Antitrypsin, itís there but you have no symptoms of it. People can live with Alpha-1 Antitrypsin their entire life and die and never know they have it, but then some people can certainly have Alpha-1 and it attacks one of two of your main organs, your lungs or your liver.  Unfortunately it manifested itself in my liver.

 

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Excerpt 2

Background: 

Here Ray talks about how the restrictions were during these four months and how his family was towards him during this period.

 

AP:  How is your family for the past four months?  

 

Excerpt:

RJ:  I reckon that the biggest change that you notice is once you come home from the hospital, the closeness and everything is a lot closer, because for the first 90 days youíve got some many restrictions on you.  If you go out to a restaurant you canít eat salads because they may have chemicals on it. I donít know what that chemical is that they put on for freshness all that good stuff, but you canít have that. When you do go out to a restaurant you have to tell you waitress, "Now when my food gets ready, please donít let it sit in the kitchen prepared with everybody.  Please bring it on out."  Because they donít want it sitting around in the atmosphere where germs or something may get on it because there is so much more susceptible to germs.  They donít want you ordering a medium well steak. They just want everything cooked done, I thought EEW. [Laughs]  

 

The family was very protective during this time.  "Donít do this, donít do that."  And I couldnít work out in the yard for that ninety days, because you would have so many germs thatís in the dirt. I thought, "This is no fun." ...During the ninety days, whenever, they were just all on my case about donít do this, donít do that, and everything.  After the ninety days you could kind of tell where that kind of faded.   It didnít just go away instantaneous; everyone just said, ďYou need to be careful about this.Ē   I said, ďWell I am careful about it.Ē  In all of this time, the ninety-day period, I am still learning how to walk.  

 

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Excerpt 3

 

Background: 

Here Ray talks about some of the rehabilitation facilities that were offered to him.

 

Excerpt:

That is something that is interesting is when I went to the rehab facility at Chapel Hill, when you first go into it, there is so many physical therapy things involved in it.  Cause youíve got physical therapy, physical therapist, for occupational therapist, physical therapist, psychological therapist, religious therapy, I mean recreational therapy and you have all these things.

 

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Excerpt 4

 

Background: 

In this part of the interview, Ray discusses his struggles during the rehabilitation period. 

 

Excerpt:

That was another thing during that time frame.  Mentally I would want to do something, and I felt like I could do it. I mean my mind's two steps ahead of my body, 'cause my body is not functioning right.  I canít walk and Iím sending signals to my feet, saying, "Let's do this," and theyíre getting there, but the feet not responding.

 

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Excerpt 5

 

Background: 

Ray was very excited to talk about an organization that helped him throughout his transplant and he wants everyone to know that it is out there.

 

Excerpt:

Well there is a National Society for Alpha 1... and I would like to mention something like this because it was so important to me and it is today.  After I was diagnosed with it, I got on the Internet and I found something about it and there was a telephone number and I called the telephone number and I told them my situation. There was a particular gentleman that I met on that phone call and he was involved in the Alpha1 Antitrypsin National Organization.  So we found out well when you make this telephone call they asked if youíve had a liver alpha problem or a lung.  So I told them I had a liver and they sent out a packet of information.  This organization, they have two major goals and that is to for peoples' education and sharing of information about Alpha-1 Antitrypsin.  Itís a phenomenal support group.

 

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For more information, contact Dr. Mary Jo Festle, Associate Professor of History at Elon University.

Email: festle@elon.edu

This page last updated 11/24/02