Jeff's Journal

Another Heavy Hearted Friend

When the transplant attempt failed on June 3, I was listed on the national transplant list and the search for another live donor started again. So far, there have been no calls for a cadaveric kidney, but on the live donor front there has been activity. I mentioned in the last post how Memorial Hermann hospital has four stages to their process for live donations. The first stage is for the potential donor to call the transplant coordinator and arrange an appointment.

I’ve been told the profile they are looking for is someone in excellent health, around my age (preferably younger, but age 60 is the cap), O+ blood type (but, Rh factor does not matter) and about my size. Stage one assesses the potential donor with those factors as well as starts the basic lab work to explore the question of health.

When potential donors ask about donating, I give them the coordinator’s phone number and leave it in the hands of the potential donor. It is a huge decision for a potential donor to contemplate the idea of taking time out of their life to have a surgery that will remove a healthy organ from their body and offer that organ to another person with the hope it will help the other person. That is a very profound and personal decision. Each person has to come to terms with it on their own. As grateful as I am, I don’t want to sway that decision. After the soul searching, the potential donor has to make the first contact. From there, the coordinator does her job. If potential donors make it through the first phone call (I think part of the coordinator’s job is to scare the bejeebers out of people) they make an appointment to come to the clinic.

The transplant coordinator likes for potential donors to come to the clinic for the initial interview. The Transplant Clinic is the basement of the hospital. Navigating the labyrinths of the Medical Center can be intimidating, but when a potential donor puts his/her hand on the door of the transplant clinic, I’m sure the intimidation factor increases. (I know blood pressure increases.) Touching the door takes the experience beyond a conversation with me or a phone conversation with some unknown transplant coordinator.

Before June 3, the plan was to work with one donor at a time, single file, through all the stages until there was a failure. After June 3, the coordinator allowed those interested to call her and begin the process and finish stage one. It has been like a swarm. She tells me she is amazed at the number of potential donors and this is very unusual. (After the first week, she called and asked, “Who are you?”) Not everyone makes it past the phone call. Also, I have explained the criteria to some who have shown interest and some elements of the profile have eliminated some as potential donors.

As of last week, here has been the work since June 3 (There will be some modifications as you read this post):
Donor #1 failed at stage 4
Donor #2 wrong blood type
Donor #3 age
Donor #4 age
Donor #5 hep
Donor #6 wrong blood type
Donor #7 wrong blood type/hepB
Donor #8 in process
Donor #9 in process
Donor #10 in process
Donor #11 in process
Donor #12 in process
Donor #13 in process
(I look at this list and I am touched and overwhelmed.)

Back to last week. The coordinator called and said Donor #8 looked good to go to the next stage. Stage two is additional blood work for the donor and a cross-match test. In the cross-match, the donor gives a vial of blood and I give a vial of blood and our blood is commingled to see if it is compatible and if there are any antigen markers that match. It is not imperative for antigen markers to match. If the cross-match comes back as negative, that is a good thing and the donor moves to stage three. The clinic will only do one person at a time on the cross-match. I asked why we cannot do all the donors for the cross-match. My coordinator told me the cost for a cross-match is around $5000 and insurance makes the call.

So, last week, Donor #8 and I took an early morning trip to the hospital for a cross-match. The cross-match takes about a week to return. Ours came back negative. Donor #8 then started on stage three while the coordinator and I talked about possible transplant dates for August. All was going forward and then late Thursday afternoon I got a call from the transplant coordinator. Donor #8 failed in stage three that afternoon. (Because of medical privacy issues, the clinic will not give details about the donor to the recipient. All that is said is that there was a “failure.” There is no reason offered. I think that also helps if a donor decides to decline to move forward in the process. It is still the donor’s decision right up to the time of surgery.)

Donor #8 called me and we talked later that night. In his words, he was “heavy hearted” and felt “the wind had been knocked out of his sails.” It was Donor #1 deja vu. What I have been told is that a potential donor will face the door to the clinic with some fear and trepidation. As the weeks go by they either work through the trepidation or they bail out. When they work through it, they come to terms that they are facing surgery and as they pass through the stages they anticipate the surgery. When something happens and everything comes to a stand still, it is like hitting wall except the pain is emotional.

Donor #10 called on Friday to give me an update on his status. I relived the latest events with him and was candidly thinking out loud to him about what folks have volunteered to do and some of the emotional rides my friends have been on through these weeks. There is more than just lots of blood drawn; there is a huge emotional draw. I mentioned how I was wondering if it was worth it to drag my friends through all this and maybe the best thing would be to just resign and wait it out for a cadaveric donation. He had words of encouragement. Since we have known each other for over a decade, he told me in no uncertain terms I was not dragging him through anything and to pipe down. His words helped me understand the donor side better. It was good to hear as the weeks of testing (and waiting) and the process wear on you.

I was at the hospital early Friday for more tests. Blood was drawn for another cross-match. Donor #9 was scheduled to come in after me to draw his blood for the cross-match. We’ll know something in a week. Donor #1 is on vacation, but when he gets back, he’ll have a partner in the heavy heart club. Hopefully, there won’t be too many more members enlisted in that club.

posted by Jeff Waldo @ 9:55 AM