TRANSPLANT IS AN ADVENTURE INTO LIVING
 by Melissa Reta
mooselungs@hotmail.com
My Name is Melissa Reta.  I am 27 and had my living donor lung TX on  May 24,2000 at USC University because of cystic fibrosis. My uncle and a man that I had met twice were my donors.  I have been married to Brian for 6 1/2 years. We have no kids,  Like most, I have had a few 'bumps' here and there, but most have been easy to deal with. Having a transplant was the best thing I have ever done in my life. I would do itagain in a heart beat if I had to, but I hope that I never will!
(L to R) My Uncle Rickey, me and Jerry. This was only the 3rd time I had ever seen Jerry.  Sense I didn't really know him, it was hard for me to know what to say to him.  It is hard to find the words to say thank you to someone that is going to help save your life. With my uncle, it was easier to understand where he was coming from.  Jerry is just a good man who wanted to help. This is in the PFT lab where they were doing their final testing, two days before surgery.
These are my old lungs. The doctors said that there were so many puss pockets, they could have been popped like bubble wrap. The picture is of all my lungs, all 5 lobes. Notice how small they are in the blue basin compared to the pictures of just one healthy lobe.
This is now my right side, from my uncle Rickey. The reason this lobe is not smooth (like the left lobe) is because it has not yet been inflated; it also has a piece on it called an "attachment".There is no way to know if a lobe has this or not, however, it is an added benefit as it gives you extra air space.
This lobe is from Jerry -- my left side. In this picture you can see how large this (one) lobe is compared to my entire set of old lungs.


This picture is my open chest cavity with my new lungs inside. My head and arms are on the left of the picture with my arms actually tied up, behind those blue chucks.  The yellow coloring is from the tagaderm tape that is put on during surgery has iodine all over it. You can see how low the chest tubes are in this picture (with my chest still open), but in the picture of me stapled back together, you can see how high up they really are.  My momma still cannot look at
this picture without it making her stomach hurt..

My Uncle Rickey and me the day after surgery. I am getting RT at the time.
Jerry and me, the day after surgery.
In both pictures, you can see wet spots on the bed. I was so hot; I had cold wet rags all over me with the fan on high the entire time I was in ICU.  I woke up from surgery hot and sweating and don't think I stopped for a week.



 

Uncle Rickey's right lobectomy incision

 Jerry's left side lobectomy incision.
 

v

My incision, and the four chest tubes. For those of you wondering, the incision itself is a non-issue.  It did not hurt, even when I touched it the next day.The chest tubes are the real source of pain. As you can see, they are each attached by one suture. When they take them out, it is not that painful; it is over quick and gives instant relief.  When they remove them you have to hold your breath until they can tie them off. The thought of holding my breath, for any amount of time up to that point was terrifying, and I told the doctor that I would not be able to do it. He just smiled and said, "do the best you can". When he was done, he told me I could breathe again, but I kept holding it -- just to see how much longer I could do it!
My first walk. I was told that a good first walk was about 10 feet-- I walked 100! It took about 15 minuets to get out of bed and get all the equipment hooked up to the IV pole. After the walk, I slept for 3 hours, I was so tired.  It is a team effort to walk the first week. The PT has to watch your sats and make sure you don't fall. You need someone to walk behind you with a wheel chair (in case you can't walk anymore) and someone to walk in front of you with the fan, then, of
course, the "bucket" needs to be close by at all times too!


Uncle Rickey (left) and Jerry (right) the day after surgery. They look great, but both pushed it a little too much, and they were both very tired and sore that afternoon.  Their biggest complaint they had about their pain was when they woke up from surgery they both felt like their shoulder (the side they were opened on) was out of the socket,


 

Jerry and I met to celebrate at dinner, six weeks post transplant. This was
the first time I had done my hair and put make-up on in about five months.


 

UUncle Rickey and I -- two weeks post-transplant.

Me at the Second Wind conference -- 15 months
post transplant.
 


 

Pre and. . . . . . . . . . . . . . . . . . . . Post Transplant Chest X-rays

I believe that my life was planned out for me before I was born, at least the basics of it. I believe that there is a reason that I need to experience the things that I have to get me to the place that
I need to be. It is this thought that has got me through many nights.

When I was born, it was thought that I would not have a very long life, and the life that I did have, would be filled with Dr.?s, a lot of medications, treatments, frequent hospital visits, and in general, a whole lot of sickness. Well, it wasn?t quite that bad, but it wasn?t always a lot of fun. I was considered lucky though, I got to do things that others with cystic fibrosis never get to do. I always thanked God that I was blessed enough to do more than others with CF. I had slumber parties, went to my prom, got married, and to me, those were all gifts.

I am not sure how much of it was taught, or how much of it was in my nature, but I never (well, hardly ever), felt sorry for myself. I always thought of myself more as being blessed. I had a wonderful family, great supportive friends, and later, a loving husband. I can walk, and talk, and see and hear. I have always had a roof over my head, clothes to wear, and have never been hungry. How could I complain? Don?t get me wrong, there were things that were hard, especially as I got older, and as I did, reality was hitting me like a ton of bricks. I knew that I would not be growing old with my husband, that he would most likely be spending his later years with another woman. I knew that I would have to rely on someone else to see to it that my parents were taken care of when they couldn?t take care of themselves. I knew that there would be additions to my family that would only know me as a face in a picture. These are all things that I knew, and had to accept as fact at age 20, when I was told that I was a senior citizen, and part of a lost generation. When all of my friends were going to college, dating, going to bars, getting things in order to live the rest of their lives, I was writing down where I wanted to be buried, and what I wanted to wear in the casket. Making sure I said the things that needed to be said to those I loved. But through all of this, I tried to keep things in perspective.

One day, when I knew I was nearing the end of my story, I was offered the most wonderful gift. Although I was more afraid of this gift than I have ever been of anything else in my life, I knew the alternative, and this gift, was unknown. You see, I never looked at being sick as a curse. I never looked at transplant as something that I had to do. This was a privilege. The most wonderful gift I have ever been given. It has given me something that I never expected, not a second chance at life, as many that get to have transplant think, but my first chance at life, and a future.

Someone that had dealt with transplant in their life once said to me that I was lucky. That transplant was easy for me, and that because I had spent so much of my life in the hospital, I was use to being there, and that made it easier forme too. It took me a minute to get past that statement, and realize that I was lucky. Here I was, 26 years old, use  to being in the hospital. That I had to go through this at all. That I have not got to do things that regular, women get to do. But the more I thought of it, the more I realized that I am lucky. Because of being so sick for my whole life, and never getting the freedom of thinking that I had a future, I look at this new life in an entirely different prospective than most.  I have been given the gift of going through transplant. This is not an affliction. This is not punishment. I was not owed this, nor had I done anything wonderful for humanity to have earned this. This is a gift that I never had even hoped that I would get. I embrace each new gray hair, the beginning of crow's feet, the stretch marks, and the eyes going bad. This is a gift that I thank God, and my donors for, every day. I never expected it, and I will never, for one second, take one breath for granted.



Since there are several of those that asked about this, I will reply to all who want the information.  It was always assumed that my dad and husband would be donors. When that did not work out, my uncle came forward right away and said he would do it and he was a match. We still did not have a second donor. My mom was talking to her friend about what we would do, and her husband came forward withouthesitation to say he would do it, and I was very lucky, he matched perfect too. So I really did not have to "look" for donors, but know a lot of people that have. This is what seems to happen with them:  They put the word out. Word of mouth is wonderful. You don't need to ask from what I have seen. If people know that you are looking, they will come forward. You could write a letter, but a notice in the church paper (MANY donors come from church connections), talk to everyone you can. Just say something to the effect of this is what is going on with me, and this is the situation I am in. Explain what would be required from a donor, and what the process would be, healing time, time off of work, that kind of info. It may be better for someone else to write it, like a spouse, child, or parent. They could say that if they want more information on being a possible donor, they can contact you. I think that  people are usually surprised at the responses. It is a delicate situation, but people understand.  I remember one time when I was in high school, I was at a flower shop and there were flyers that a family had put out. Their family member was in a life and death health situation (don't remember what it was now), and had no insurance. The flyer was asking for donations and my mom took that flyer to donate. I asked her why she would do that, we did not know them. She said that is what people do for others in their community, if we can help, we should. I have never forgot that. If any of you want more information on living donation, you can contact me privately and I will share all I have. Don't be shy about letting people know what you need, if you knew someone that needed something to save their life, and you had that, and they did notask you because they felt awkward, wouldn't you think that was very foolish of them?



"MORE MELISSA PICTURES"
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"ORGAN DONATION CAMPAIGN"
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 "TALK TO YOUR FAMILY ABOUT ORGAN DONATION"
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Brian and I at the USC Christmas party, 18 months post transplant.
 

FYI

For those of you that don't know, everyone has 5 lobes to your lungs. Three on the right side, two on the left. The lower lobe is taken from 2 separate donors.  The first requirement is blood match. Then, the donor must be at least 4" taller than the recipient (to fill in the chest cavity) but 6" to 8" is ideal. That is why men are donors more often. Normally this procedure is done on people with cystic fibrosis (CF people is why this procedure was invented). I know of a few other illness's that have had this (IPF, PPH), but for the most part, it is CF. Dr. Starnes (my surgeon) was tired of seeing people with CF dying while waiting. Once we are able to get listed,it is often times too late, and we can not wait. We also can not receive one lung, we HAVE to have two. This was first done with very end stage only recipients, and blood related donors; only because they believed that blood related donors would be better. That fact has scud the information that is given on lobar. It is improving over time though on this type of surgery. As time went on, they became more picky with the donors, and then transplanted less sick people. That is why some people call it "living related". But no, it is not only living related now, anyone can be a donor.  The donor must be under 50 (this may vary from center to center). The donor has to then go through full PFT's, blood work, lung scan, CT, x-ray, EKG, stress test (again, this may vary).

It always interests me what it must do to a person that has to "wait" for their tx, how your life is not only on hold being that you are not able to breathe, but you are literally at the mercy of your pager.  As most of you know, I had a different situation. When you are sitting there, talking to your coordinator about how sick you are, and how you will not live a few weeks more, much less 2 years, it is entirely a different story. Then, a date flies out of his mouth, (for me, it was 4 weeks away) , and no matter how ready I thought I was, it still has the ability to make me fall out of my chair. There are benefits to knowing your date. You can make arrangements for things to be taken care of, people can plan on coming out of town. But you
also know that you may only have 4 weeks to live, with a real possible date in your lap. Either way, this is never easy. I went into that OR as many of you have. No fears, ready to die if I had to go on living like I had been, but praying it was not "my time" yet. It is just something that we all have to face- our mortality. For some, it is easier than for others. I don't think anyone should be condemned or praised for such a personal decision. We all know of the many complications that can happen, and have to decide if we are willing to take those chances. Either decision, it takes a tremendous amount of inner strength and insight as to who you are as a person and what you are able to handle.
PROS FOR LIVING DONOR:
CONS FOR LIVING DONOR:
~Much less ischemic time (when the organs are out of one body, and into the
 next).
 ~The benefit of having full medical history on the donors
 ~No trauma to the donating body (as what happens when whatever has caused
 brain death).
 ~ Get to pick from several donors to get the best for you.
 ~They are also finding that living donor recipients are rejecting less (I
 have something somewhere on this if someone wants a copy of it)

 

 ~Only 2 lobes. This is not a problem with breathing capacity. I am at 86%,
 and a friend is at 100%. This is really a non-issue. The problem is when one
 gets a cold or an infection, it usually settles into one lobe of your lung,
 and when you only have 2 to begin with...
 ~There are 2 lives at risk unnecessarily.
 ~If you need living donor, you are too sick to wait, so often times, you are
 very sick going into the surgery.
 These are really the only cons that were given to me. If you meet the
 requirements, that is eliminating some cons right there (height, age, illness)

CLICK BELOW IF YOU WOULD LIKE TO JOIN SECOND WIND

Melissa's Links

Second Wind Lung Transplant Association, Inc.
New Model Would Decrease CF Patients' Wait Times for Lung Transplants
University of Southern California Lung Transplant Program
A Comparison of Outcomes Between Living Lobar and Cadaveric Lung Transplantation
Lives Lost, Lives Saves
Aerobic training improves exercise performance in lung transplant recipients
RECYCLE THYSELF
EXPANDING THE DONOR POOL WITH LIVING DONORS

 Melissa 27 YOF w/ CF,
Diabetes, living donor TX #98
@ USC Univ. Hosp.  05/24/00
Whittier, CA.
 
 
 
 

Last edited on 2-28-2002