Getting Listed for Organ Transplant

Once again Susan Martin shares with us her writings.  She has put her experience of getting listed into words and we wanted to share this with you.  If anyone wants to share any of their writings please contact me.

I Got Listed…

Another Step Closer

Ever since I arrived to participate in Duke’s LungTransplant Program August 3, I have anxiously been awaiting the next phase…to be listed.  For over two months I watched people come and go. Every day we all waited for news:  who got listed….who got a transplant, and who is healed enough to come back to Center for Living and who is finally going home.

On September 29^th, I was notified by my transplant coordinator that I was officially listed with the United Network for Organ Sharing (UNOS) as a bilateral lung transplant candidate.  I learned that as donor organs become available, they are allocated to patients on this list according to size, blood type and severity of illness in accordance with the National Lung Transplant Allocation Policy.

Duke has no way of accurately estimating the length of time before donor lungs will become available for me.  While I am on the waiting list, they will continue to monitor my condition and provide care for me through regular visits to the Duke Lung Transplant Clinic.  The Team expects me to continue to follow the recommendations they have made to improve my chances for a successful lung transplant.  If there is any more significant deterioration in my condition, I will be reevaluated of my condition status.  

I was given an Allocated Listing Score (ALS) of 31.696 which is based on my physical and lab tests. Most patients are transplanted in the 30-40 bracket.  (Wow, my score was 69.) This relatively new system is a more appropriate format to assure the person who most needs the organs will receive it rather than who has been on the list the longest.  When donor lungs become available, a “match list” is created to match the lungs with suitable candidates based on blood type, distance from the donor hospital to their transplant center, and age group. If no appropriate recipient is found among the candidates closest to the donor hospital, potential compatible recipients at greater distances will be offered the lung(s).

So…now I am living in the “I’ve been listed” stage of this transplant process.   Many things won’t change.  I will still strive to live a healthy lifestyle, eating right, exercising at the same daily rate of 3 hours a day. I will be attending any education classes I have missed, and any clinic appointments or tests that will need to be performed during the wait phase.  It is possible that a candidate can be removed from “The List”…so I am diligently going to be doing my very best.  However, there are many things that WILL change.

I think the first thought, after getting over the shock of finally being listed, is the realization that this is really REAL and major surgery is right around the corner.  I feel fairly calm.  I can relate this to another time when my life was about to undergo a really big change.  When I was expecting and felt my children kick, that is when I realized the blessing of having a child really IS real! That’s also when I started thinking about names, shopping for baby things and “nesting” in preparation for bringing the babies home.   For the past week or so, I have begun making lists of things that need to be done, packed my hospital bag, talked to others who have been through the surgery, printed out phone lists and chore list of who to call, cancel appointments, bills to pay, or other needs that my husband / caregiver will need to tend to once we get “THE CALL”.  

Life Revolves Around My Phone

I have learned I am on a leash….only as far my cell carrier goes AND within 30 minutes of the hospital.   We have been instructed to have our cell phones with us at all times.  Of course, my phone has become my new best friend.  I sat down and went through all my available ring tones and found the loudest most obnoxious ring I could find.  I also raised the volume level up to the highest one available.  So…my phone is now ready. 

We made sure we had provided my coordinator with every phone number possible.  We have a home phone, temporary apartment phone, two personal cell phones – one from our home area code and one from 919 area code and my husband’s work cellphone from the Sheriff’s Dept, which he carries 24/7.  Having phones from the two area codes enables people at home to call without long distance charges, as does having one from NC for local business and medical needs.  The first week we were here we had to give our number to an office who said “Oh…that’s long distance”, so it just made sense.  

I am notorious for losing things…my keys, my glasses, my phone.  Last time I lost my phone was while I was using a weight machine at the Center For Living.  It slipped out of my workout pants pocket and one of the staff managed to figure out it was mine.  What on earth was I going to do to assure I had my phone with me at all times and more importantly that I don’t lose it?  Where are those free address labels I always get in the mail at home.  One of those would be perfect for sticking on the back of my phone for helping get it back to me if I do lose it.  I’m the kind of cell phone user who just keeps it in the car in case of emergency and only my kids and husband had the number to it.  I have never used it as a regular source of communication.  How am I going to develop a new habit of carrying it with me all the time and making sure it is charged every day. What to do….what to do???   Fortunately, my son had sent me a care package with a lanyard clip from his place of employment and I had an ah-ha moment.  I attached my phone to the clip and now carry it dangling from my neck like a big oversized weighty piece of jewelry.  In this case, my necklace will be the link to my next phase…”The Call”.

 We went to visit a local life and science museum and while inside we became engaged in hands-on exhibits. Both my husband and I got a sense of panic when we simultaneously noticed that our phones, with 2 different carriers, were not getting any bars!  We immediately left the building and spent the rest of the time viewing outside exhibits, where we were able to get 1-2 bars.  It was a nervous time of constantly checking the phone to monitor reception capability.  

We now plan all of our shopping, meals, errands and entertainment around the cell phone.  When my husband walks the dog, he carries his phone in case he gets the call. If I am the one to get the notice that my lungs are here, while he and Bobber Dog are on the trail, I can call him and let him know, so he can cut the walk short.  

And speaking of dogs…when we came to check out hotels and apartments last spring, we also had a list of 4 possible dog boarding facilities.  The funny thing is we visited all 4 – but we stumbled on one only two miles from our new home that we liked way more than any of the others.  We brought all our dog’s records and met with the facility owner and explained our situation.  We needed a place she could go to when we got “The Call”…even if it was 2 AM in the morning.  It has never ceased to amaze me how the Lord’s providence has made all of the arrangements and paths opened to us in wonderful ways.  This was one of them.  Anyone who owns a pet knows how stressful it could have been if we hadn’t been able to provide for our pet’s needs too!

I have to admit, I have developed a new phobic behavior. I live in a temporary apartment and the phone is typical hotel style “local service only”.  There is no caller ID service.   Whenever the phone rings I freeze, no matter what I am doing.  I gasp a deep breath and briefly hold it.  I look to see if my caregiver is close enough to grab it.  When I answer “Hello” and in that momentary pause of silence before anyone responds, I shiver and look to God for strength. Relief floods over me when I hear a familiar voice on the other end.  

…just in case I get “The Call”

I’ve had another shift in behavior as a result of getting listed.  I have found waiting has become an excuse for misbehavior with a claim of  “just in case I get “The Call”.   We have been told that there is no limit on what or when we can eat or drink, other than after we get “The Call”.  At that point we can no longer have anything to eat, or to drink to minimize any problems during anesthesia and surgery.   I have also heard from many patients that it is days or even weeks before they are able to eat normal food again.  I know there will be dietary changes that must take place post surgery.  I have caught myself several times rustling through the kitchen looking for items that will likely be taboo later…like my husband’s Krispie Kreme Donuts and my Brach’s Candy Corn!  (Who knows if I will ever be able to eat that again. This might be the last time! I argue to myself.)  But even worse, I’ll wake up at midnight and go rustle up a quick healthy bite and drink…just in case I get “The Call”. (After all, there’s no telling when I’ll get “the Call”. I wouldn’t want to wait on an empty stomach.   That’s not wise, but tends to be the emotional excuse I blame on my misbehavior.)  I’m working on this one….   I know one of our lecturer’s explained it was okay to keep eating normally because from the time we are called to the actual time of surgery hours later, enough of the digestive system has been performed to involve action in the small intestine, so there is little risk of being sick.

I have talked to another person who was listed the same day I was and she said she is going through the opposite effect.   She is hardly eating because she doesn’t want to have anything in her stomach…but this week at a dry run (a call to come…but the lungs later deemed not right for her) she realized that perhaps her behavior is not smart.  She got the call at 12:00 noon and she had to wait all day and up until after 8 that night before it was determined the surgery was off.  She had spent nearly 12 hours without anything to drink or eat.  By the time she got home she felt like she was “starving” and ate way too much before bedtime.

My trips home have now come to an immediate halt.  We only live two hours away from Duke, but even that is just too far to be able to respond in a timely fashion – which is one reason why I moved to Durham.  Now, instead of being able to go home on weekends, I have to have a caregiver with me 100% of the time.   Thus….it means having to impose on friends and family who will volunteer to babysit me for a day or two.  I have to ask them to leave their home and responsibilities in order to be with me…just in case I get The Call so they can take me to the hospital.  I am blessed because all three of my kids have volunteered, as well as a couple of friends, but the unknown time-frame is difficult to plan for.  I can’t imagine how stressful it must be for patients who live in other states and even so far as Arizona and California.  There is no respite available, no emotional “relief” or physical assistance available. 

When I first came to Duke as a pre-transplant patient, we were told that the average time from listing to transplant was 19 days.  Just last week, I heard those were old stats and that the current average is 12 days. (I waited 11 days.  My quest was getting on the list.  That took a long time.) Today, October 12^th is the completion of my 13^th day of being listed.  Now being slightly outside the current average, I know that every day puts me closer to “The Call”.  So far, this is probably the most emotionally intensive portion of this process.  Waiting.  

Susan Traxel Martin

Thanks again Susan!

Celebrate Life,

Alma