What IS Quality of Life, really?

When I first started going to Pittsburgh, I had to fill out a QOL (Quality of Life) survey. Today in the mail I got a five year post-transplant QOL survey. I think they try to test your sanity because the thing is like 15 pages long and they ask the same questions over and over, just in different ways. Seriously. I had to fill it out at my one year mark too.

Kareem starts the letter with "After our friendship for many years" and then goes on to say to answer the survey honestly about my QOL now in comparison to pre-transplant with no bias or intention to please him. He wants to know how to tell other patients what QOL is like several years after transplantation and to "help the medical community to better take care of precious patients like you." He ends it with "I love you and happy holidays." I know it is pretty much a form letter, although he personally signed it, but I also know he means what he says. The transplant doctors in Pittsburgh are like family for us...the whole team is from the nursing staff and coordinators, to the surgeons and other doctors involved in the overall care.

Anyway, I so wish I could answer the survey based on my QOL three years ago and not now. Now my QOL is comparable to that of pre-tx in physical terms. I have some days that are better, some days that are the same, and unfortunately, some days that are even worse than pre-transplant. The difference is now I have a greater appreciation for life and passion to fight. Pre-transplant I stayed in bed and only left to go to the doctor or the hospital. I had no social life to speak of and didn't care to have one. I didn't go to church or run my own errands. I wasn't driving at all. I had lost my passion for G-PACT and had little concern over whether our mission continued or not. My desire to have the transplant was more out of a fear of dying and an awareness that I had so little time and no options left. It was not as much about a desire to actually "live," be productive, and give back to the world.

Transplant really changed my perspective on the value and importance of life and made me appreciate things in a whole new way. It gave me great insight and a better understanding into things that few people get to experience unless in the same situation. It's a pretty incredible feeling to know that you have a second chance to change your life and to recognize what you want to do differently with the new life you have been given. It reminds me of one of my favorite, and obviously well- known, movies "It's a Wonderful Life." Although not given the opportunity to see what life would be like if I had never been born, the transplant did give me a new perspective into what I needed to change with my new life and provided me with the opportunity to do it. Not too many people face death and then have a chance to start over and make changes in life that they recognize during the dying process. I had "checked out" weeks before I received my transplant. I remember very little about those final weeks, but I believe that I had less than a week left in life by the time I received my organs.

My QOL is much better in terms of my desire to live, my drive to not let this ruin my life but "live" in spite of it, and my overall approach to my future. Now I still drive, work to be independent, run my own errands, attend church every Sunday I am not in the hospital, volunteer during the week, and have a passion for my work with G-PACT. In spite of how difficult it has been physically over the last three years, I would not trade my decision to have the transplant done because it has given me 5 1/2 years I never would have had. That has resulted in the development of some of the greatest friendships ever, awesome opportunities I never would have had, incredible spiritual growth, change in perspective of my life mission, and a chance to see G-PACT grow and make progress. I have a different love for all people from all backgrounds, and have matured and grown in so many ways that it's been worth the extra time. I absolutely love life and living.

It pains me that I can't honestly answer questions of my physical QOL being any better. In so many ways I physically struggle a lot more now than I did then. I have a lot more chronic pain and more difficulty walking and moving around. My muscles, while always weak, have become even more stiff, sore, and weak. I fall a lot more. My nausea never goes away and has reached even more of a debilitating level most of the time. My conditions have become even more complicated as they are opposite now and work against each other. I have developed more problems since, either as a result of the transplant or the underlying condition progressing. I am more limited in my treatment options due to my immune suppression, transplant medications, and need to protect the fragility of my transplanted organs and my body in general. This is still a new transplant with limited long-term statistics, so average lifespan of the new graft is still being evaluated. I spend many days in bed so weak and sometimes I am even unable to even roll over from one side to the other. I have to be more aware of any changes to my body and know that any change could mean rejection of the organs or a serious disease process beginning that my weakened immune system may not be able to fight off.

Mentally I am healthier and in that sense my QOL is much improved. Physically, three years ago I could have said that my health was also much better, but now...no. I so want to encourage Kareem and the transplant team. I would never go anywhere else or recommend any other center for this transplant. I want them to have incredible results with everyone and great responses to each survey after all the time and work they put into the life of every single patient...the long days of transplant (can be 16-24 hours depending, Kareem even has a cot in the OR), the long hours in clinic, middle of the night phone calls for emergencies awakening them from sleep at home and bringing them in, the long meetings and time poured into preparation, evaluation, pre-transplant care, post-transplant care, and lifelong follow up. Kareem has an uncanny ability to be able to identify that something is wrong and exactly what it is by a simple glance at a patient, an ability that is inborn and not learned. He gives his patients his personal cell phone number to call "anytime you need me." I want his program to show ultimate success. He and the Pittsburgh team invented it, after all, and do by far the most in people who travel from all over the world. Their success rate is the highest by at least 10 percentage points over any other center.

Of course, "survival" is one thing and "quality of life" is another. Am I success if I am alive with a poor QOL? I had a fabulous three years post-transplant with minimal complications, lots of good food, and few hospitalizations. I was able to rebuild a significant portion of my life during that time and started to do things that I can't even imagine stopping now, in spite of how my health has deteriorated. I could never imagine my life again without church, volunteer work, G-PACT, my friends, my Life Group, my social life, driving, or the many things I started to do to live normally again during my three much healthier years. In that sense, yes, I am definitely a success and my QOL is far, far better than it was 5 1/2 years ago in spite of increased and long hospital stays, tube feedings, IV fluids, and the many, many symptoms and complications I battle on a daily basis. Improvement in my QOL in those areas will take me so far in my ability to overcome the current and future physical challenges because I have more I want to live for. There are so many things I will not drop because during my three healthier years these activities and changes became part of me and things I can't imagine my life without.

So, although I will answer this QOL survey and know that physically my responses will not look good on the long term outcome of this transplant in me personally, at least at this stage in the process, my responses to any questions relating to the psychological, spiritual, mental, and social health QOL will put Kareem and the dream team at the top of the charts. While I wish I could rank higher on the physical side, I am glad that I can rank them high in terms of my recovery in the other very important aspects of my life. Aspects that are simply the result of recognizing how precious this life is, how "precious of a patient" I am, an how important it is to fight with everything I have got to NOT let this take me down or take me back to where I was pre-transplant. As long as I have a good QOL in all other aspects, I can manage the physical battle and decreased physical QOL much better than I could 5 1/2 years ago when I had a poor QOL overall.

Quality of life is much more than just physical well being and physical health. It also has everything to do with me as a whole person and my ability to live, dream, love, think, imagine, and still be able to enjoy life in spite of the very, very difficult physical issues I am forced to manage every single day.