The transplant clinic

I had my monthly appointment at the Transplant clinic yesterday. I am now at 5 months tomorrow since my surgery. Just last month I was deemed fit to be seen just once a month. Given my commute time (2 hours each way) it was awful tough when I began my recovery to go there twice a week. I did that for a month. Driving 4 hours in excruciating pain was not fun. The second month I went down to once a week and then twice a month. I was pleased last month when they reduced it to monthly and I made it a point to thank my Doctor. He said, “Don’t thank me, you’re the one who is making it easy on yourself.”
“How’s that?”, I inquired.
“Because”, he said, “you are doing great, top 2% of all post-transplant patients at this stage.”
I told him that at 4 months I should think so. At that point I was back in the gym, detailing cars and working part time at another gig. Apparently, I am the exception according to my doctor who told me that, at 16 weeks most are still at the “bitching and moaning phase”, still in a lot of pain and struggling to follow instructions, and still quite in need of frequent check-ups. As imcomrehensible as that was to me, it gave me some relief to know that I was crushing it.

I looked around the waiting room as I waited to be called. I studied the patient’s in the room, optimistically looking for someone who looks like they’re doing well despite the battle they are fighting, the one I know all too well. It’s a true mixed bag of patients, both pre and post-transplant. On any given clinic day there are as many as 12 patients at a time being seen. It’s impossible to deny my people-watching inclinations and I take a lot of mental notes. What I noticed is that, with rare exceptions, the pre-transplant patients look a heluva lot rougher than I did before the surgery and the post-transplant patients, some having received their gifts many months or years before me, just don’t look very healthy. The lobby is cluttered with wheelchairs and walkers and these people look so very sick. It breaks my heart.

I can attribute my expedient return to thriving existence to a few advantages I suppose. I am a bit on the young end to have had 2 Kidney Transplants. Youth, even at 56 I am considered young, is always perceived as a benefit with regards to illness.
Another advantage is my ability to conceal my illness. Having been diagnosed at 17 I have had a lifetime to learn how to deal with this disease. If you have ever read me before, you will have no trouble understanding that “dealing with this” means that I have mastered how to not “look sick”. As soon as we had children, I became a Jedi master at hiding my symptoms. For better or for worse, it worked for me.
The last, and perhaps most important advantage is that I always prioritized my physical conditioning. Even at my sickest, during dialysis, I managed to exercise and keep my weight within range. By Range I mean the parameters set by my transplant team. If I was 40 pounds overweight when I got “the call” I would have been passed over. When I learned that, I knew that I always had to be ready to go. With both transplants, I entered the operating room at an ideal weight and in decent physical condition. Not only did I not look sick, and I was, but I also looked fit. To illustrate this point, when being prepped by the anesthesiologist, he remarked that he wasn’t expecting a guy that “looked like he could kick my ass” to be on the table. We had a good laugh. His was the last face I saw before I went under. I know I was smiling when the silly juice kicked in.
I’m on the other side now and I’m still smiling.

I wish more than anything that the other patients are able to push themselves to be the very best patient they can be. Some of them are very advanced and it is unlikely that they would be able to embark on the regimen I did. But there are also many who are just morbidly overweight and past the point that they can fix it now. Even if they know that they will likely be passed over if they didn’t. All I can point to is that I was able to do it and I’m not special. I just think ahead, and I naturally think of the worst-case scenario and I then over-think it. In this case all I thought about was being called and not being ready. That made me worry just enough to do something about it.

It gives me no joy to be at the top of the chart in recovery. That was just a plan coming together successfully. I wish that the other patients find the strength to get themselves ready when they get the call and enjoy the same gift of life that I have. I further hope that my fellow post-transplant patients have a plan to get well, to get strong and get back to living. From where I stand, and I have been there, until you commit to doing everything you are required to do with every ounce of strength in your body and mind, the thing called “good health” will continue to elude you.

At that point you are merely existing, not living.

the waiting room

If the sun is out I take the motorcycle to Dialysis. If I have to be there then I’m going to arrive and depart with a smile on my face.

Most days I spring out of my chair, exit to the waiting area, grab my helmet and go. Sometimes there are people in the waiting room, waiting to pick up a patient. I know most of them and who they are waiting for. For the last 2 weeks there has been a new face, a woman, 70ish with a kind face, that I deduced was waiting for the new patient Bob. Bob is a 70ish ‘Nam vet who just started treatments. I’d never spoken to him but he looks like a nice guy, with a new unpleasant development in his life.

Today, as I exited the clinic and grabbed my helmet she spoke to me.
“Can I tell you that you’re amazing?”
“Amazing? Hardly. But thank for you for saying that. And while we’re on the subject, why exactly am I amazing?” I replied.
“You bounce out of here, helmet in hand and ride a motorcycle out of here. After Dialysis. I don’t know how you do it.”
“I have to”, I replied. “It’s the only way I can make it tolerable.” I sat down across from her.
“I see Bob wears a lot of Harley stuff, is he still able to ride?”
“No.” I had touched a nerve. “He can’t support the weight of the bike anymore because of…”she motioned towards the clinic door, “this”.
“I get it.” I replied. “This is tough”.
“Not on you. If it is you don’t act it.”
I explained to her that it is quite to the contrary. That I have a tough time with it sometimes but I put on a strong face and do my best to make the most of when I feel good. She politely nodded as I talked, looking down at the floor.
I asked her how Bob was handling it. She told me he is feeling pretty lousy but getting used to it. I found that to be a good time to tell her that I was the clinic’s Patient Advocate and offered to talk anytime she or Bob may want.

At that moment Bob came through the door. His wife immediately said “This is Bill. He’s the one with the Bike. “
“Hey, Bill. Nice to meet you.” Bob wearily sat down in the chair. “Nice bike.”
“Thanks”, I replied.
“Bob”, his wife spoke up. “Bill is the Patient Advocate for the clinic.”
He looked at me and said “What do you do?”
“I’m here if you need advice, recommendations about the dialysis process or just here to talk if you need it.”
“Talk about what?”
“About Dialysis. About the emotions you will feel and the aches and pains you will experience. We all go through it.”
His facial expression showed total resistance. Then, before my eyes it changed. “Maybe I’ll take you up on it sometime.”

We walked out. He checked out my bike. I was careful not to ask him about riding. He then surprised me. “I’m thinking of getting a trike. I don’t have to worry about supporting the weight.. I can still ride that way.”
“That sounds awesome, Bob. The more you keep doing what you love, the less sick you feel.” I winked at his wife. She smiled.

I watched as they got into their car. She drove. As they pulled out she mouthed the words “Thank you” to me.

I’m not sure I did anything remarkable, I just shared the best kept non-secret I have. Illness only wins when you allow it to. Keep living your life.