V Meeting the Rest of the Transplant Team and a Terrifying Decision to Make

After being a “chemical” for two and a half days I met in rapid succession with a social worker, a nurse, a nephrologist  and finally with one of my surgeons. My session with the  social worker lasted for an hour. Its’ purpose was to subtly verify my motives and to ascertain whether I had thought through all the implications of what I was doing. Had I thought about work? Was my husband supporting my decision?  Had I told my mother or children? (In both cases not yet.)   I had done quite a lot of preparation and research but I was tired and my voice reflected my fatigue. But when she asked what I hoped to achieve for Taro I heard my voice ring out. It was a pleasure to be able to tell them at last. I said I wanted him to live longer and I wanted him to have a better quality of life. I wanted him to live to see his grandchildren. She seemed satisfied that I had taken everything seriously and that I did not have unrealistic expectations.

Her place was taken by the nurse who  told me many stories of donors who had backed out – including at the very, very last moment.  I told her the steps leading to my decision and that I had offered with the intention of going through with it.  She seems to have concluded that I knew my own mind and then explained the roles of the nephrologist and the surgeon.  The nephrologist was my kidney doctor and so was concerned with my health in that regard but the surgeon’s only role at that point was to operate on me.  The recipient and donor each have their own team of doctors. This is not just for the operation but throughout the process. This is necessary to prevent a conflict of interest.  It ensures that a donor is not being cleared for operation because the same doctor is treating the recipient and has placed the recipient’s interests first. It’s a way of protecting the donor. The nurse warned me that the two professions tend to have different styles. She explained that as a personality, nephrologists tend to be warm and friendly but that surgeons although perfectly nice are more distant in manner.  I was glad she warned me. The nephrologist  was the epitome of the doctor with the warm, wonderful bedside manner. I was surprised that many of his questions about my health were unrelated to my kidney but he explained that while his chief concern was my kidney health, at NIH they try to help people who “step up” more generally, if necessary.

My surgeon while certainly very likeable was a little more detached and crisp in manner. It felt like a pleasant business meeting.   He described the two methods of transplant surgery.  First there was the straight traditional open nephrectomy in which they open up the side where the kidney is located and take it out. The advantage is that it’s simple: open up and take out.  The kidney is right there. The disadvantage is the size of the cut is long, thus the chance of infection greater. This type of surgery is also associated with a longer period of recovery and greater pain than the second type, laparoscopic surgery.  In a laparoscopic transplant they bloat the patient, send in a camera and bring the kidney out through one of the small incisions. The main advantage is a faster recovery period and smaller incisions. The disadvantage is that they do not have a straight route to the kidney so there is potential for damage to other organs on the way out.  I had read about these types on surgery and the surgeon and I were getting along just fine until he dropped the bombshell. He concluded by telling me that  I was the one who had to choose which surgery to have. I was appalled and blurted out “which one are you better at?!”  He smiled and said he could do both but laparoscopic was “more fun”.  I found myself musing on young men and their gadgets.

That was the end of the interview and my three days of testing.  I left feeling reasonably nervous. Why was the least informed person in the process making such a major decision?  I don’t like to think back on the testing but when I do reflect on the experience I see days jam packed with needles and tubes, EKGs, constant blood pressure readings  MRIs, mammograms  and anything else they could think of punctuated by moments in which I was reminded of the gravity of what I was proposing to do. The transplant nurse was up front about the possibility of death however remote and my interviews made that point as well.  This information however was relayed in a way that conveyed admiration and gratitude for my being there.  The testers in the rest of the hospital working early shifts may have been a little impersonal but on the transplant unit I was surrounded by respect, friendliness and care.  I thought back to my earlier belief that if I offered without checking prevalent blood types in Japan they would laugh.  It seemed a crazy assumption now. These people cared about their patients and they cared about donors. They treasured every person who “stepped up.”    But I still wanted them to choose the surgery for me.

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