KIDNEY FAILURE - A PERSONAL JOURNAL

[Peter Langley]

A Personal Perspective

My wife, Pat, has suggested that I add a more personal perspective to my journal, giving the reader my insights into the process as a result of having been through it, more an emotional approach than a nuts and bolts as I have attempted in the foregoing.

Simply put, the entire process is emotionally overwhelming. If I had been a pin ball machine, I would have yelled "Tilt" any number of times. The highs are amazingly high, and the lows threatened my equilibrium on occasion. Kidney failure: the entire concept is frightening, although my doctors made every effort to make it appear to be commonplace and something that a person can deal with. Both through their interaction and their nurses, as well as printed materials which were provided, the entire problem, available processes, and choices for treatment were well presented and made the entire issue more manageable.

What were the most important aspects of dealing with the emotional issues is a question I have been asked more than a few times. I would say that there are four main points of support which are essential to dealing with what is, after all, an overwhelming concept: (1) a family which is supportive - especially a spouse - and which can deal with the emotional issues which you are dealing with; (2) doctors who are equally supportive, and who will take the time to discuss the matter fully, even to the point of understanding the questions which you put forth so inartfully because you don't really know what you want to ask; (3) sources for information and answers to questions which might come to you at any time; and, (4) someone to talk to who has had the experiences you are going to be facing.

I was most fortunate in that my wife, Pat, has been an absolute rock of support throughout the entire process. She would take time off from work to go to doctor's appointments, presentations, and clinics whenever I felt the need for her support, and often when I was simply a little unsure of myself and thought I could handle it myself. She also helped me think out the questions and concerns I had, and we would often reduce questions to writing to ask the doctors and other professionals. Both of my children have also been their throughout for both myself and for Pat.

My doctors, starting with Dr. Locay and his nurse Debbie, including Dr. Neustein who prepared me for peritoneal dialysis, Dr. Howard and Dr. Rice who were with me through the transplant, and all of the doctors and residents at the clinic at Shands have been wonderful. They have taken the time and evidenced the concern that gives me support and helps me deal with the changes in my life. The nurses at the dialysis center in Ocala were supportive and treated me more like family than a patient. I realize that they treat everyone like this, but it is a welcome change from the almost automated process which one experiences in many medical settings. Likewise, the coordinators at Shands have been there through their respective portions of the process, from being on the list through surgery and now through the recovery and dealing with the reality of life after transplant.

The Internet and such sites as Transweb have been invaluable in obtaining information from another prospective, although some sites were somewhat out of date. The written materials provided along the way were likewise essential to my mental well being.

Claire Stafford in England and the two women I spoke with in Levy and Gilchrist Counties were a great source of support in that, while their situations were different from mine, I could speak to someone who had been through this life-altering experience and realize that I, too, could survive and survive well.

When I see people at clinic, and when I saw people at the dialysis center and at Shands who were alone, and who had other physical ailments, I was amazed that they were able to cope. I do not know how well I could have coped without all of the support which I received.

Likewise, I cannot imagine what the process would have been like had I not had the types of doctors I had, real people with whom I felt a connection. I know that the entire thing is a process, that I am a number to some extent, and that everyone is treated the same. However, the effort made to make me feel that I was special and had meaning as a person was successful. I feel and I have felt throughout the process that these medical professionals - despite the vast numbers of persons who go through their offices, their operating rooms, and their clinics - saw us each as individual persons, and were treating the total person, not just the kidney and its replacement.

All of that being said, I must add that many people asked me how I kept an upbeat attitude throughout the process. A cousin of my wife congratulated me on my attitude and said he could not have maintained that attitude had he been in my place.

In response, let me first say that I am - by nature - a positive person. My mother used to look at me and say, "See the happy moron." Perhaps that is the attitude that best assists you in a situation such as this.

When people would say to me - as many did and do - how can you stick your finger five times per day and give yourself shots for blood sugar several times per day, I answer truthfully, but somewhat flippantly, "I decided I can either do it or die, and I am not ready to die." This is an attitude I have attempted to maintain throughout this process, and have been more successful than unsuccessful. I believe that a positive attitude has been responsible for much of the success of my treatment and transplant. I know that it is easier said than done, but I strongly endorse any effort one can make in this regard.

This is not to say I have not had fears or doubts. When I kissed my wife before being wheeled to the operating room, I cannot say that I was not terrified that this would be the last time I would see this wonderful woman who has meant so much to me my entire adult life. Likewise, I cannot say that I did not wake up several times during the night in the hospital awaiting surgery with the same fears and doubts. However, we have often said that our lives are complete, and that we would not change anything that has gone before. This helped me deal with the possibility - however remote - that the surgery or the anaesthesia would spell the end to my life.

Likewise, before I went in to be prepared for peritoneal dialysis, which required surgery and anaesthesia, the same fears surfaced. Of course they did. Just as the idea of peritoneal dialysis was terrifying. Looking back at how easy it became, I can laugh at my trepidation: can I do it without contaminating myself; can I ever do it in a car and, if so, how; will it destroy my life; what if I make a mistake. Of course, thanks to Diane, I only had to perform the dialysis for a matter of months as opposed to years, but I had gotten into a groove. I made mistakes, but they were the type which could be corrected by merely throwing out a bag or taking other steps to avoid any possibility of contamination.

The decisions I faced were myriad: did I want to attempt peritoneal dialysis or go to the kidney center to be hooked to a machine; did I want to go on the list or continue with dialysis; when my son volunteered to be a donor, did I want to take any chance with his health by accepting his offer; when Diane appeared, did I want to endanger her for my own benefit; did I want to wait for a cadaver donor so that I could also seek a pancreas transplant to eliminate the blood sugar issues. Side issues like the inconvenience and expense of dialysis as measured against the side effects and costs of the lifetime of medications were involved. While I wrestled with each issue initially, after Pat and I discussed the options and made a decision, I was comfortable with that decision. There was no going back and agonizing over the correctness of the decision. One reason was another bromide that Pat and I have endorsed over the years: "Everything happens for a reason." I found that I could accept this thought, even when my health and my life were the issues involved.

Perhaps my approach to this has been simplistic. In fact, I would venture to say that it has. Perhaps my faith in my doctors was a result of my generally Pollyanna-like personality. If so, thank God for my Pollyanna-like personality. Perhaps my ability, and Pat's ability, to deal with these life and death issues resulted from our faith in each other and our ability to look at the surface of issues rather than dealing too much in depth. If so, thank God for our love and faith, and our - in this case - shallow approach to these life and death issues.

Perhaps both Pat and I were assisted in keeping up a happy front out of a desire not to frighten the other and in order to provide support for the other. If so, thank God that we cared enough about each other to make the effort.

What made it all work and allowed us to make it to this point? Faith in each other; support of each other; support of our families; support of our friends; support of doctors, nurses, coordinators, and the entire medical field which was involved; support of women who had been through it that I would never had spoken to otherwise; the attitudes and support of Diane; a feeling of predestination, perhaps. All of these contributed to our successful transplant, and I emphasize "our", because I truly feel that Pat has been through this every bit as much as I have. Okay, I have been cut on a few times, and I have a "new" kidney whose picture is proudly displayed with my journal, but Pat has been the one awaiting word of the success of the surgeries while I blissfully slept through the entire thing. In many ways, I feel it has been rougher on her than on me. When she asks me for the tenth time in an hour how I am feeling, I can feel the emotional investment she has in me. It is probably a larger investment in me than I have, because I know how I feel. I do not have to ask.

If I have not said it enough, and I do not know how to say it enough, let me say it once again: Thank you Pat. Thank you Lynne and Peter. Thank you Diane. Thank you Drs. Neustein, Locay, Howard, Rice, Skidmore, Clare-Salzler, Crabtree, and Silkerson, and all of the residents, fellows, interns, and o thers that provided medical care and treatment. Thank you Debbie, Thelma, and all of the other nurses who got me to the point of the transplant. Thank you Claire and the other people who have shared their experiences with me. Thank you to my friends who supported me, and to the attorneys who assisted in my practice while I was out of commission. Thanks to all of you, I am a new person. I just hope that I was worth it.

April 2000 Update