A Transplant Patient's Experiences with Biopsies

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.

Setting the Stage

"Hi!, I'm Dr. Duane and I'll be doing your biopsy today. You can call me Doogie (as in the teenage TV doctor)." What a great way to experience the first in a long string of biopsies following my heart transplant what was then just 3 weeks ago. Right up front let me say, as of now, 7 months after transplant surgery, having undergone biopsies just about every other week - so, what's that, about a dozen procedures? - the experience has been that positive, if not more so. Monday I go in again to have the team do their magic and there is nothing but positive outlook in my anticipation, a real tribute to the professionalism of the entire biopsy staff. But again, I get ahead of myself. This is written so that fellow patients (and their families) can better understand the biopsy process, not so much from the technical standpoint (the HUP staff do an excellent job in educating you in that subject), but more from the patient's experience - the fears, emotions, thoughts while on the operating table - as well as some suggestions as to how I have learned to benefit from this required experience without any negative side effects. I hope your own experience will go as well. With each biopsy, as I lay on the table, I pray for all of you. Keep that thought in mind when its your turn - and, oh yes, please "say a little prayer for me.

"Why Am I Doing This? (the biopsy, that is...)

Being the proud recipient of a new heart - i.e., being reborn - as of October 19th, 1994, our main job as a patient is to prevent the protective body of ours from rejecting that new "foreign" heart. This, I believe, begins with your mental outlook. I use internal dialogue (yes, I talk to myself...) and say to myself (the immune system, the white cells, the whole body...) "Hey guys (and gals) in there, this is a new friend of ours. Treat him (her) well. Without his (her) help, we're all in a pile of trouble - so go easy. Don't attack that new heart!" The second thing I do is everything and anything the doctors tell me - i.e., exercise (see the monograph on Exercise), medications (see the monograph on Medications), eat well (see Nutrition), watch my weight (yes, there's one on Weight Changes too), and attend clinic and undergo biopsies as scheduled. To date that biopsy schedule has been just about every other week, with some month long intervals, but I do admit to feeling more comfortable with the bi-weekly process. That way I can be sure they (the medical team) can live up to their half of the bargain, which was a promise that they would know of any rejection before I, the patient, had any symptoms or signs of that rejection, and thus could treat it before any real damage resulted. This has been the case so far. Even out this far, the good progress reports have consistently resulted in reductions in medications, and every time they do that, biopsies are scheduled in the near future (i.e., 2 weeks) to make sure the adjustment in meds doesn't open up the power of the body's immune system too much so that rejection occurs. I guess that's the real secret of understanding this whole thing. The team is trying to reduce the meds - specifically those dreaded (but miraculous) steroids - as fast as possible but without going too far. The steroids keep the important immune protection system under check. As you lower the meds, that system comes back "on line" - a variable for each individual, so there is no exact right level. They have to keep reducing the meds until rejection starts, then they back up (at least that's my vision of it). Its almost to say if they don't run into rejection, they haven't been aggressive enough in reducing the steroids - so don't be too concerned with rejection (see monograph on Rejection) - its expected - and they know how to control it. So how do they know early enough that the rejection (i.e., your body - white cells - are actually defending against the invader heart by literally "eating" the transplanted organ, just like they do with any infection or foreign life form) is happening? From samples taken from the heart walls through the biopsy procedure.

The Biopsy Procedure

Come with me as I go through a typical biopsy experience - you watch, I'll undergo the surgery. Later, you can be the patient, OK? If you're family reading this, hopefully this will be the closest you will ever have to get to the real experience. Understanding what goes on behind the big automatic doors to the surgery rooms may ease your waiting anxiety - imagination can play terrible tricks with what you don't know.

It's Monday morning, which along with Thursdays, are the normal clinic/biopsy days at the Univ of PA Medical Center. By rising very early (i.e., 5:30am) we beat the impossible rush hour traffic into downtown Philadelphia. By 7:30 the transplant team is meeting with patients and folder in hand, we find our way through the maze of buildings and corridors to the 8th floor of Founders building where the surgical rooms await the stream of biopsy patients - all proudly boasting of the miracles of heart transplants. The passing nurses and doctors - our caretakers in the same area for months of waiting for the hearts, surgery, and finally the 10 day recovery period - rave in supportive awe at how great each of us looks. And we each revel in the glow of that shared joy. It does more than even the medications do to speed the healing to hear such beautiful words. Wow, talk about your attitude adjustment! Of course we talk among ourselves about the challenges and experiences, so common to all, yet so unique to each individual. Its great just to see each other - alive and well (still) - despite various side effects that always seems so trivial compared to someone else's story. Leaving the ever growing folder with the biopsy teams, we return to wait in the room for the call to come back in for the surgery. With 4 rooms of surgery active, it still seems like too long before I get my call. I did bring a book to pass the time, but that usually means I'll get called fairly soon. The conversations make time fly - especially when you get to explain something to one of the newcomers - a more recent heart recipient. My wife, Jay, always comes down to sit with me - just in case I might not be able to drive home. While the biopsy is scheduled to be done via a neck entry point, there's always the possibility they may have to go in from the leg (groin) area, in which case the recovery time is several hours long and would prevent me from driving. Even without that excuse, it's great to share this with a supportive loved one. While waiting, we often have the opportunity to visit patients on the floor awaiting their own new heart - full of concern and questions for the experienced pros. "Wow, you had a heart transplant? You look so good!" - hopefully the sight of so many successes will reduce their own anxiety level. Many a new friend is made in this area of common experiences. "Hey, Dave's no longer here!" - he got his heart last week and is now upstairs recovering, waiting his turn to go home. (Note: it's still surprising, even as I write this piece, the tears come to my eyes just thinking of Dave getting his new heart! "Welcome to the zipper club, Dave!" "Take good care of him, Fran." "Enjoy your new lives together!" "Our prayers go with you both!") Dave had his life extended past that normal point of no return with the new LVAD (Left Ventricular Assist Device - a portable heart machine - wow! amazing) and it turned out to be long enough to find a donor heart. Congratulations, Dave! Congratulations transplant team - you saved yet another one! See you at biopsy, Dave.

Biopsy Time

My name is finally called - its almost 9:00 by now. I say good-bye to Jay who finishes her conversation with another family, sharing the experiences they have yet to go through, this time from the patient's spouse's viewpoint - quite a different view - a much tougher one, I feel - and she goes down to the hospital cafeteria to read her own book and finally get some breakfast. Going into the closed off surgical area, family waits outside, imagining what their loved one is doing behind those doors. Most of the time we are laying inside, waiting - and waiting - and waiting some more. The family/spouse gets worried because its taking so long. Must be some complications, right? No, in my case (and most of the time), I'm laying there on the skinny surgical table, having entertaining conversations with a most pleasant and friendly surgical staff, while we await the doctor to arrive from other surgeries/rounds/whatever... Sorry I can't relieve your anxiety with a message of "Nothing's going on in here yet..." - that's why I say the family has the tougher role. The patient knows what's going on - "Nothing!"

Finally Doogie (Dr. Duane, or one of the several other surgeons) join the team who have been preparing me. That preparation started with my removing just my shirts (pants and shoes stay on for a quick getaway) and climbing up on the cold table. In fact the whole room is refreshingly cool (or cold, if you're sensitive to temp). One of the team disinfects the entry point by painting a very cold liquid all over the area of the right neck/shoulder (usually). We carry on a fun conversation. "How have you been Mr. Gleason?" "You're looking great!" What a morale boost these beautiful people give you. They play music in the background if you would like - even allowed me to bring in my own choice of music! A plastic cover sheet is draped over the chest, neck, and face - with your head turned sideways looking out to the open room. "Please push up against my hand on your neck." requests the doctor. He looks for the vein to stand up and give them a good target entry spot. At this point its time for my tough role - I lay on that table. Yep, that's what I do. I lay there. And they say I'm very good at it, too. Well, I've practiced every day for at least 8 hours (sleeping at night), I guess I should be good at it. The professionalism of the HUP biopsy teams (there are at least 5 of them) is amazingly consistent across the teams - and all are excellent and so very personable and friendly. They make me feel like family every time. I'm made to feel so safe (despite the required signing of papers that say something along the lines of "this is a life threatening procedure" and "we'll do our best, but..."). Here's something I read the first time and just sign without thought from that time on. I know its dangerous, but getting anxious and worrying about it is only going to complicate matters. I concentrate on my tough part: the laying still, head turned to the left, so they can do their tough part - something they do every day, many times over, successfully - taking out the heart tissue samples for biopsy study.

A slight anesthesia is inserted at the neck entry point, and if you work at it you can anticipate the pain of the needle prick and feel it (they tell you everything before they do it), but I feel why bother feeling it. I just imagine the painlessness of it all - and, voila!, it is painless! From that point on, the area gently numbed by the shot, surprisingly, there is no pain - like I said, unless you generate it with your anxious anticipation. I choose not to - simple. Seems like the easy choice to make. The X-ray monitors overhead provide an interesting show - if you're up to it - showing the wormlike biotherm (long tube-like device that slides down the vein into the heart and snips an ever so tiny piece of the heart wall for later examination under the microscope - looking for the telltale attacking white cells of the immune system) as it goes down and across the chest into the heart chambers. Three (or five) times the insertion/retraction process is completed - painlessly. "Out!" "In!" interrupt the ongoing conversations as the nurse announces each milestone for the recording cameras. After several biopsies you may find the TV show boring. I would suggest yet another approach which involves going away while they work on you. Not totally, they do need you to interact several times throughout the process, and of course they warn you to let them know if you feel any sharp pain. Right!! Well, to date I haven't had any such pain to report. So like I say, get out of there - mentally. I transport myself to anyplace - i.e., some past (or future) vacation or fun experience (avoid active sexual memories, it makes it hard to do the laying still part), even to visit relatives in the afterlife (heaven) via visual imagining. It works and makes the time pass very pleasantly.

About 20 minutes or so later, the doctor announces he is through and you get to lay there longer while they measure heart pressures for what originally was 15 minutes, but now with a more recovered heart, it's only 5. They also took a blood sample while they were busy, so there is no separate stop for that to be done later. The clock runs out, pressures OK, and its drape removal time. "Sit up, Mr. Gleason." "How do you feel?" she asks. I feel great - yet again - this being #14 for me. Even now, I can't get over the smoothness and painless nature of this very critical procedure. A simple band-aid is applied after the wound area is cleaned, and its time to get off the table and put shirts back on. With good-byes and thanks to all involved, I bound out the automatic doors, feeling like a million bucks with this new heart of mine. The bright sunshine fills the hallways as I take the elevator back down to the cafeteria where Jay has had to worry about the unknown goings on over her breakfast. Must not forget to finally take my morning medications, withheld until now so that the blood samples wouldn't be misleading with them in the bloodstream.

Now, Awaiting the Results...

Jay and I return home, and then off to work, or maybe we'll take the rest of the day off to do work at home. The results of the biopsy wouldn't be available until the next day. By Tuesday evening the lovely voice of either Kathy or Heather, the transplant team coordinators, will usually announce "No rejection! Congratulations! I have some medication changes for you . . ." and "We'll see you in two weeks for another biopsy." "Piece of cake!" I reply, and with thanks to them (and God), I go on to update my medicines record form for the new protocol. Family members are updated in person and by phone: "No Rejection!" And they celebrate the good news with you.

What happens if they do find rejection, you ask? Not a big deal, but I do describe it fully for you in yet another paper - see the one on Rejections.


Ok, that's my experience. Next one is yours. Hope all of yours are equally painfree and positive. It's my understanding that we'll be doing this - at a more stretched out schedule - well into the next century - that's really a great thought, not the biopsies, but the being alive into the next century - especially in light of where we've come through, right?

Sincerely and with HEARTfelt thanks, Jim Gleason

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