"Being strong doesn't mean that you are never weak. Hanging in there doesn't mean that you never let go. Being tough doesn't mean that you are never tender and don't cry. Fighting for your life doesn't mean that you never drop the sword and let down your guard. You still take hits. You still hurt. You still have moments when you just can't handle the battle.
Strength comes from the ability to pick up and move on when you've been knocked down. It means that you are willing to ask for reinforcements when you can't handle things alone. Strength is apparent when you are still willing to cry out for mercy when circumstances seem overwhelming.
Admitting that you need help does not mean that you are weak. It just means that you are struggling to hang in there alone and even though the rope burns start hurting, you refuse to let go completely. It means that you just need someone to help you pick up your sword, stand by your side, and fight along with you. Strength simply means that you will do whatever it takes to get through any challenge and that when you fall from being weary in the fight, you figure out what you need to do to get back up and continue."
-Carissaism, 2011
Tuesday, December 27, 2011
Monday, December 12, 2011
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.
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.
Saturday, December 10, 2011
Peace for the mission
What's on my mind? A lot...Just resting today. I'm really, really tired and had a rough night. Did I mention yet how happy I am to be home again? I keep coming home and think I'll be ok, but then keep going back. I hope we can slow that down. I need to be home. It's been a tough few months. I've lost track and it all runs together, but I'm sure I've been in the hospital way more than out since mid-July.
I feel so peaceful though...I can really feel like people are praying for me because I just have so much peace. That doesn't mean this is easy, doesn't suck, that I like it, and that I don't get frustrated or scared, but I am at peace and have accepted things. I still have hope. I feel like people really are surrounding me with love and prayers and it's really sustaining me through this.
I don't know what I'd do without my faith in God. I know He is there for me and knows every minute detail and struggle I have. He cares. He intervenes. He calms my fears when I give them to Him. He knows what is best for me, even if I don't think it is best! I know He is using me and my challenges to do His work. I don't know why it has to be so hard, but He is with me every step of the way guiding me and helping me realize that even though I am so physically weak, He is still able to use me. By being weak I am actually really strong.
I am always amazed how I can be so upset and scared, but then a prayer lifted up for me by someone, or through my own prayers and Bible reading, I develop a peace that can't be described. You just have to experience it. I'm human...of course I struggle with turning everything over to Him when I know He could fix everything with one act, of course I question, but for some reason He has chosen to use me and my circumstances to complete some mission He has for me here. He doesn't want anyone else to do it. He knew before He created me what He had planned for me and created me with the ability to complete it. I know He has my life in His hands, He is in control, and that He will sustain me and provide me with everything I need, including the strength, to complete the mission He has for my life.
Thanks for the prayers. They are working and I definitely feel them!
I feel so peaceful though...I can really feel like people are praying for me because I just have so much peace. That doesn't mean this is easy, doesn't suck, that I like it, and that I don't get frustrated or scared, but I am at peace and have accepted things. I still have hope. I feel like people really are surrounding me with love and prayers and it's really sustaining me through this.
I don't know what I'd do without my faith in God. I know He is there for me and knows every minute detail and struggle I have. He cares. He intervenes. He calms my fears when I give them to Him. He knows what is best for me, even if I don't think it is best! I know He is using me and my challenges to do His work. I don't know why it has to be so hard, but He is with me every step of the way guiding me and helping me realize that even though I am so physically weak, He is still able to use me. By being weak I am actually really strong.
I am always amazed how I can be so upset and scared, but then a prayer lifted up for me by someone, or through my own prayers and Bible reading, I develop a peace that can't be described. You just have to experience it. I'm human...of course I struggle with turning everything over to Him when I know He could fix everything with one act, of course I question, but for some reason He has chosen to use me and my circumstances to complete some mission He has for me here. He doesn't want anyone else to do it. He knew before He created me what He had planned for me and created me with the ability to complete it. I know He has my life in His hands, He is in control, and that He will sustain me and provide me with everything I need, including the strength, to complete the mission He has for my life.
Thanks for the prayers. They are working and I definitely feel them!
The strength in the scars
I look at my abdomen, my neck, arms and chest. They are battered and bruised, sliced, off colored, and malformed. I have one vertical scar that goes from my pelvic area all the way up to my chest with scars beside it from over 70 staples. That scar is crossed with a long horizontal scar that goes across my entire abdomen from side to side. Next to it there is scar tissue from over 70 staples which were placed to hold 5 new organs in place. Both of those scars are at least a foot long. I have scars on my chest from years of IV lines. I have a hole in my abdomen from which a tube emerges. There is a large cut on my chest with a bulging area where a port is located under my skin, and it is not a pretty sight. Both the tube and the port are my lifelines right now.
My abdomen is not pretty. My neck is covered with scars and indicate the challenges of years of chronic illness. My arms and hands are purple and off-color. I have areas in my abdomen where I appear to have several belly buttons from old j-tube and g-tube sites. My scars are not beautiful to see. They are ugly. But I love them. They are a constant reminder of the battle I fight and how much I can overcome. They show me every single day that I am STRONG and can overcome pain and suffering and still move on with life. I don't hide behind my scars. I will show them off proudly if you ask because they show my strength and remind me that I can overcome anything. They are an indication of the pain that I have endured. They prove that I will do whatever it takes to keep fighting. The pain I deal with in life is worth the opportunity to keep living. Pain brings strength and leads to healing. So often pain must occur before healing can begin.
“Scar tissue is stronger than regular tissue. Realize the strength, move on.”
Henry Rollins
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars" - Kahlil Gibran
"It's a shallow life that doesn't give a person a few scars." - Garrison Keillor
"Every winner has scars." - Robert N. C. Nix
"Turn your scars into stars." - Robert H. Schuller
My abdomen is not pretty. My neck is covered with scars and indicate the challenges of years of chronic illness. My arms and hands are purple and off-color. I have areas in my abdomen where I appear to have several belly buttons from old j-tube and g-tube sites. My scars are not beautiful to see. They are ugly. But I love them. They are a constant reminder of the battle I fight and how much I can overcome. They show me every single day that I am STRONG and can overcome pain and suffering and still move on with life. I don't hide behind my scars. I will show them off proudly if you ask because they show my strength and remind me that I can overcome anything. They are an indication of the pain that I have endured. They prove that I will do whatever it takes to keep fighting. The pain I deal with in life is worth the opportunity to keep living. Pain brings strength and leads to healing. So often pain must occur before healing can begin.
“Scar tissue is stronger than regular tissue. Realize the strength, move on.”
Henry Rollins
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars" - Kahlil Gibran
"It's a shallow life that doesn't give a person a few scars." - Garrison Keillor
"Every winner has scars." - Robert N. C. Nix
"Turn your scars into stars." - Robert H. Schuller
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