Rejection

A Transplant Patient's Experiences with Heart Rejection

by Jim Gleason, recovering Heart Transplant Patient (transplanted 10/19/94)

This is one in a series of short articles sharing this heart transplant patient's experiences in some area of common concern. Included in the series are similar articles covering Nutrition, Weight Change, Biopsy, Rejection, Medication, Exercise, Motivation & Boredom, Transplant Surgery, and Fear & Facing Death. These are not meant to replace any professional medical advice, but rather are one layman's interpretations of actual experiences he had while waiting for, undergoing, and finally, recovering from, a heart transplant at the University of PA Medical Center. While each person will have their own unique experiences, many have found this simple sharing to be of value in reducing their own concerns seeing that such feelings and experiences are part of the normal recovery process seeing that there is light at the end of what may now appear to be a very dark tunnel through the eyes of another who has passed this way ahead of them and, most importantly, the light at the end of that tunnel is not a train engine coming directly at them, it is the light of another sunny day, another gift of a day of life. May you find joy in that daily gift of life as I have through the miracle of this medical science known as transplantation.

"The phone's ringin' off the hook..."

"You'd better get right home here - the phone's been ringin' off the hook!" said my wife, Jay. I was calling from the hospital's Cardiac Rehab program to see if I could bring home something for supper. It was 3 months since the heart transplant and I was exercising 3 times a week with the rehab group at Phoenixville Hospital, feeling very good this Friday after an hour long treadmill workout - quite an improvement over the initial 10 minute walk when the program started in early December. By early March my goal was to be in shape to return to full employment - exactly 6 months from when I left work to undergo this heart replacement. Yesterday we had gone for biopsy at HUP (Hospital of the Univ. of PA), and fully expected the day after results call from Heather (or Cathy, the transplant coordinators) to repeat the message we had received every other week for 3 months now: "No Rejection!" While Jay had not said what the calls were about, I guessed that there must have been signs of rejection this time. We had been told to expect rejection, but with each passing biopsy we felt that we would be the exception. "No rejection!" became the badge of success. Well, at the 1st big home milestone - the 3-month point - God decided to remind us that "pride goeth before a fall."

Looking back after the experience, everything we had been taught by the transplant team fell into place. "Rejection," they had warned us "was to be expected." "We will know before you do that rejection is occurring." "When rejection comes, we know how to handle it, so don't YOU worry about it." Easy for you to say, I thought. It's not their heart being rejected. While I didn't worry about the possibility of rejection, the actual experience made me glad that I hadn't wasted any energy worrying. Come, share the moment with me so that when you go through it yourself, it wouldn't be complicated by anxiety...

Rejection Reaction

Driving home to see what this pile of phone calls was all about, like I said, I assumed this was notification of rejection. Well, I had to face the fact, the Great Adventure, as I had called it in the Human Heart Story, was about to add yet another chapter to the experience. Scared? No, as I have detailed in Fear & Facing Death, the transplant team had developed in me such a sense of confidence in their abilities to handle whatever would come to be, that fear was not a reaction, only one of challenge and adventure. Nice job on all their parts: "Thank you, again!" Once home, Jay confirmed my assumption, only with a story that caused us to smile. When she had gotten home from work, the message on our answering machine was from a home drug company, announcing they were called to schedule delivery of the medications and equipment we needed for 6pm that night. "What meds?" we asked each other - neither knew the answer. But a visiting nurse had also called to schedule her training visit (training for what?) for early Saturday morning. Ok, things seem to be happening - and fast. The mystery was finally solved when the transplant coordinator called to give us the results of yesterday's biopsy and told Jay that "we would be hearing from a visiting nurse and the home delivery service shortly to schedule..." - we were impressed with the speed of the reaction and assured her that indeed, they had already called. One hour later a large box of paraphernalia was delivered to our door - an IV pole, bags of medication, tubing, and everything else that a small hospital should have (I exaggerate, of course!). We awaited the nurse's Saturday morning training visit and, feeling fine, went out for my usual exercise walk. I still had no symptoms that would indicate rejection was taking place (as they had promised, they would know before...). After a restful night's sleep (i.e., no worrying about this), the nurse arrived on schedule, and very thoroughly explained everything slowly and carefully. She did the hard part - inserting the heploc into a vein, leaving the inserting of the needle into that rubber stopped connector (i.e., the heploc) to me. Not so bad - so far. In fact, rather interesting - as Jay said later, "Boy, you're really going to be unbearable if you have to go back into the hospital and they need to put a line in again - what with this training and experience, the nurses wouldn't know what to do with you!" True, so true.

The next part was all mine - I was to lay down for an hour and allow the slow drip to empty the bag - slowly so as to not cause a headache (Kathy, our transplant coordinator had warned me). Turned on my favorite music and just lay there on the sofa - I could do this! Again, we had found my special skills - laying down still. This would be repeated Sunday and Monday (a total of only 3 times) - and two weeks later, yep, you guessed it, another biopsy to see that the rejection had been halted. Our nurse insured we understood everything, having us go through the whole procedure "on our own" at least once before she left - but even then, she would only be a phone call away if we needed her for anything.

Sunday, we did everything as trained - no hitches. No headaches. Pleasant music listening hour of laying on the couch. I was getting good at this. Remember about pride going before the fall? Well, Monday's session didn't go as well. This time the insertion point for the heploc seemed to be filling up as the fluid drained from the IV. Didn't seem right - but I was doing my laying still right, wasn't I? A quick call and response from the same nurse resulted in her coming by within the 1/2 hour to move the heploc from where it had somehow backed out of the vein which caused the infiltration seen as the swelling. "Piece of cake" I said, as the final infusion took place, now without further incident. We packed up the leftover supplies and the pharmaceutical company picked them up later - very convenient.

Rejecting Rejection

Two weeks and one biopsy later, the usual results were returned in a message from Kathy, back to the "No Rejection! Congratulations. I have some medication reductions for you..." message we so enjoyed hearing. The rejection had indeed been turned around (i.e., rejecting the rejection? I like the thought of that, don't you?) and messages went out to concerned supporters to thank them for their concern and prayers. Reflecting on the total experience, it was good to see that all the earlier promises of the transplant team had been kept. Again, there had been no pain, no problems that couldn't be handled easily by the joint usthem team. This too had turned out to be yet another positive experience in the ongoing adventure of the heart transplant for me.

Reflections

Rejection is really a good sign that the transplant team is aggressively trying to cut back on the steroids (and other immune suppressant meds). This is very important since the body is open to attack by so many enemies while immune suppressed - a condition necessary to keep that same immune system from treating that "foreign" heart as an intruder and rejecting it. In other cases, speaking to other transplant patients who have experienced rejection, they have been treated for the rejection by just increasing the oral doses of some of the pills they were already taking - an even simpler process than I went through - and mine wasn't bad at all.

Danger!

Please don't underestimate the seriousness of rejection - without treatment it is fatal! When you experience your own rejection, don't get upset or worried, just do what the team prescribes and have trust in them. Listen to them carefully and report anything unusual for them to decide its importance. Remember, too, that this is a description of my own actual experience. Yours may be different. I hope and pray that you will find, as I did, that rejection is just another step in the long road to recovery in this new life we both share as transplant recipients.

Sincerely and with HEARTfelt thanks,

Jim Gleason