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  • Introduction - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    Disease GVHD and take medications on a daily basis And my energy while allowing me to function normally is a fraction of what it used to be I certainly cannot travel to all the places I once hoped to visit or have the career I once imagined for myself Emotionally the story is more complex Overall I am content and happy possibly more so than before the transplant I appreciate life more I am more accepting of my shortcomings I treat myself more kindly and I am more focused on enjoying this short life I also still grieve the early loss of my health vigor fertility appearance and the imagined trajectory of my life had it not been for the aftereffects of the transplant Navigating the bumpy post transplant journey is not easy particularly if we experience transplant aftereffects Very few if any of our friends experience our symptoms And often the physicians caring for us outside of the transplant center are not savvy about the late effects of transplant This guide provides information and resources to help you on your journey in the years and decades following your transplant Much of the information in this guide was obtained from surveys that were filled out by 61 long term survivors a few caregivers peer reviewed scientific journal articles lectures by experts in the field and discussions with survivors and medical personnel The kaleidoscope of shared struggles losses and resilience speaks to the incredible capacity of individuals to weave together meaningful and rich lives despite adversity and in many cases ongoing health problems Keep in mind that the information recommendations survivor quotes and products medications mentioned in this booklet are not endorsements nor intended as medical advice Always consult with your physician about your medical decisions and treatment Please note that

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_introduction.htm (2015-03-27)
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  • Defining Long-term Survivorship - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    term encompassing all of these types of transplants For the purposes of this book we refer to them as transplant or BMT More than 50 000 such transplants are performed worldwide each year of which 20 000 are performed in the USA As treatment statistics improve and more individuals are added to the community of long term survivors the number of people experiencing chronic health conditions from the aftereffects of their disease and its treatment will grow as well It is therefore increasingly important to provide a realistic picture of the post transplant experience in all its complexity and diversity The goals of this guide are to shed light on the challenges that individuals face after a transplant and to provide useful information and resources on how to cope with these challenges Although many of us may continue to experience some chronic health problems as a result of the transplant it is important to remember that we can live good lives despite post transplant challenges With persistence and good follow up treatment many of the aftereffects can be reduced Back to Survivorship Guide Main page Acknowledgements Prologue Introduction Defining Long term Survivorship Late Effects of the Transplant Quality of Life

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_survivorship.htm (2015-03-27)
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  • Late Effects of the Transplant - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    as adults who have never had a transplant Overall survivors did not experience more hospitalizations or outpatient medical visits and had similar rates of conditions such as asthma diabetes high blood pressure and high cholesterol as people who had not undergone a transplant But they did report a higher incidence of certain medical problems including musculoskeletal complaints stiffness and cramping sexual problems and a higher use of antidepressants and anti anxiety medications 3 Survivors are also more likely to experience cataracts thyroid hormone deficiency bone thinning osteoporosis and secondary cancers 4 Although some survivors view their health as worse than a typical person their age they also report positive changes such as greater personal growth 1 an enhanced appreciation for life greater appreciation of friends and family different priorities and a shift in life expectations How these gains and losses play out is different for each individual with some people experiencing more of the benefits and others feeling the losses more acutely Here is how several different survivors sum up their experience I feel that I lead a more balanced life now I definitely take more time to appreciate what life has to offer However I am constantly fearful of what health problems lie ahead relapse secondary cancers etc Since the transplant I have experienced physical problems as well as depression fear and profound anxiety that have been very debilitating Life after transplant is tough I realize the transplant is always going to be part of my life I have a scar where my Hickman catheter used to be I have a bump on my scalp where a port was in my head I wonder why I got sick since I had led such a healthy lifestyle before I never even took aspirin before I got sick My world has

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_effects.htm (2015-03-27)
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  • Quality of Life Post Transplant - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    deterioration in health or sexual functioning may be counterbalanced by strengthened social bonds or enhanced spirituality all of which go into the general mix that makes up what we call quality of life Overall survivors do more poorly on many measures of quality of life when compared to individuals who have not undergone a transplant 2 4 Despite this however 60 of survivors are satisfied with their lives and report good to excellent quality of life in the initial years post transplant 2 As survivors get further away from the transplant they tend to report a better quality of life 5 Several survivors reflect on their quality of life after transplant Before the transplant I took my good health and so much else for granted Now I deal with many small lingering health issues but I use a different measuring stick to evaluate my life What I once would have considered only acceptable I now consider good and I appreciate both the big and the little things more The transplant experience helped me grow as a person I learned things about myself and fellow humans that I would not have considered prior to being sick I think I am a better happier person as a result of the experience Overall I feel a bit depressed more often than before I become anxious easily now in the face of unexpected changes in plans I am weaker in mind body and spirit I continue to try to strengthen all and accept that both age and illness take their tolls I m actually a happier and more well balanced person than I was before the transplant I treat myself better and try not to take things too seriously I don t always succeed but I do recognize when I m blowing things out

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_quality.htm (2015-03-27)
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  • Adjusting to the New Normal - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    to deal with fear of recurrence chronic health conditions changed stamina and changed perceptions of self However over time a large majority of survivors do incorporate the changes of the transplant into their lives and a new normal emerges One of the greatest challenges for me after the transplant was learning to identify with and like my new self the one who is not very athletic who gets sick easily who has bags under her eyes For a long time I kept wanting to apologize for this new self because in some sense I didn t see it as the real me Now I can look at this new self with more acceptance but liking the new me is still a work in progress I can no longer wind surf kayak mountain climb mountain bike downhill or cross country ski or jog I can walk snorkel swim hike garden and bird watch The transplant tremendously impacted my perspective I used to think I was invincible The transplant was humbling The new normal is not a bad normal just different Perspective is everything Life goes on This is how I am now Back to Survivorship Guide Main page Acknowledgements Prologue Introduction

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_adjusting.htm (2015-03-27)
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  • Depression and Post-traumatic Stress Disorder (PTSD) - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    frightening thoughts or memories about their trauma They may avoid the places or things that remind them of the traumatic event may have angry outbursts a feeling of being on edge or a feeling of being emotionally numb The symptoms of PTSD can develop shortly after the trauma or sometimes years later I suffered from severe PTSD after the transplant I had gone through a long period of cheerful façade kept everyone feeling positive After many setbacks when things finally started looking up I crashed emotionally and it took a while to get back to being the positive active courageous person I was before I am sometimes inside for 3 5 days hiding from the world I have a lot of anxiety Everything involving confrontation is overwhelming After calling to correct a billing error I got so upset I shook for hours afterwards People with depression or PTSD often cannot pull themselves together and may need some type of treatment to resume a healthy emotional life Treatments for continuing depression include talk therapy counseling and antidepressants In cases of mild depression alternative treatments such as acupuncture guided imagery relaxation and other therapies can also provide relief 7 PTSD is different from depression and is often treated with cognitive behavioral therapy that teaches people to separate their strong emotional reaction from the memories of the event 8 A therapy called Eye Movement Desensitization and Reprocessing EMDR has also been found to be effective 9 Other useful techniques for treating PTSD include group therapy 10 and relaxation tools such as guided imagery 11 and hypnosis Medications to treat depression and anxiety may also be helpful in resolving PTSD Therapy and antidepressants have been very helpful in dealing with my depression I was referred to a psychiatrist who was wonderful and put me

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_depression.htm (2015-03-27)
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  • Emotional Well-being - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    your mood and how you cope Befriending Uncertainty Finding a way to make peace with the unknown is one of life s biggest challenges Although everyone faces the unknown and cannot know with certainty what tomorrow will bring the transplant experience shines a light on these uncertainties and forces us to acknowledge at some level that the unexpected can happen anytime and that some things are out of our control Years after the transplant many of us still face uncertainty regarding how much of our stamina and health we will be able to regain Many wonder about the risk of recurrence or a new malignancy How we deal with uncertainty is different for each of us and may vary at different times in our lives Sometimes choosing distraction or denial to avoid thinking about uncertainty and the fears it brings is a very legitimate and appropriate way to cope At other times it can be helpful to explore our fears with curiosity and to befriend the uncertainty Sometimes it is by getting closer to that which we fear that we can lessen its power over us One way to befriend our fears is to shed light on them This can include talking about them in a supportive atmosphere with a good friend or a therapist or exploring them through writing or other forms of expressive art Living life while recognizing its inherent uncertainty requires us to have not only courage but compassion the compassion to be non judgmental to give ourselves the time and space to experience and examine our fears and to realize that even in unknown waters there can be solace hope and joy Before the transplant I would spend a great deal of effort trying to control the direction of my life Now I realize that many things are out of my control So I try to set my priorities and steer my life in a general direction But if the river takes me in another direction I don t try to fight the current as I used to I go with the flow knowing that life will lead me down many unknown paths My challenge is to find ways to enjoy the ride When I am fearful I stop myself and take stock of the moment The moment is usually just fine Finding Meaning How we interpret our challenges has a lot to do with how we experience life s obstacles If we believe that our discomfort is for a good reason our level of emotional suffering may be substantially less than if the reason for our suffering is not clear or seems unfair or pointless A marathon runner may experience a great deal of leg and foot pain in the last miles of a race but will push on through the pain with a feeling of accomplishment However if that same degree of leg pain were to be experienced without explanation it would cause great suffering and distress So how we understand our physical experience affects our emotional response and also our level of suffering Knowing that I am a more compassionate and caring person than I would have been had I not gone through the transplant helps me deal with all that I have to go through I get tremendous benefit from talking with other survivors and hearing their stories I also benefit from mentoring others who find themselves needing a BMT Every story inspires me in some way I believe in the power of connection with other people on an emotional level I had set several goals when I was told of my cancer I was not going to die before I had accomplished these goals I have two left to do Although we may not be able to change our medical conditions and general health we can try to find meaning in the experience reframe it learn from it or use it as an opportunity to do something that we wouldn t have done otherwise And if there is some purpose for what we are going through it is easier to find the courage to walk the twists and turns of our path Many survivors find purpose and meaning through volunteering Volunteering allows survivors to put their experience to good use by making a difference in the lives of others I have found that volunteering is the best way to deal with problems I have encountered Finding ways to help other people always makes me feel more thankful for having been given a second chance at life Talking with other survivors speaking at blood or platelet donor dinners telling my story at schools and participating in focus groups have been very helpful to me If I can help one person then I feel that the experience was worth it Adjusting Expectations How much we suffer or enjoy a particular experience has a lot to do with our expectations If it rains unexpectedly throughout a vacation we may be very disappointed If we go to a place like Scotland however where we expect a lot of rain the same amount of rain will not detract from our sightseeing and enjoyment of the trip Similarly if our expectation is that our health and strength will return to how it was pre transplant we may be more frustrated and disappointed than if we accept that our new normal may include discomfort associated with chronic health problems Accepting that some health challenges may be part of life post transplant may allow us to cope with the setbacks with less frustration and fear The key is to readjust plans to what is possible A few days ago I suddenly came to a point of acceptance acceptance of my new life the new normal I realized that this is how my life is going to be and it is time to stop hoping fighting for something different I felt so peaceful And then just a few moments later I realized that this feeling of peace and acceptance will

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_emotional.htm (2015-03-27)
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  • Changes in Appearance - Survivorship Guide for Bone Marrow/Stem Cell Transplant - Resources and Support - National Bone Marrow Transplant Link
    this has had no effect on my life Changes in body image can cause great distress and can lead to feelings of shame embarrassment inferiority or anger These feelings can have a profound impact on quality of life and can restrict our activities in many ways including Reluctance to leave the house Reluctance to date or meet new people Embarrassment to undress in front of others Shying away from intimate contact and sex Inability to accept the new self Coping with a Changed Appearance It is helpful to remember that our appearance is only the tip of the iceberg of who we are Most people appreciate us not just for our looks but for our actions compassion humor skills integrity vulnerabilities and strengths In the end it is behavior much more than looks that determines how well a person will do in social situations Here are some ways of coping that others have found helpful You can try one or more strategies at the same time As much as possible stop comparing what you look like today to what you looked like before Find ways to embrace and value the things that you still like about your appearance Look at yourself with compassion maybe a little humor and to whatever extent possible let go of self judgment Reframe the situation Change your perspective and find ways to see beauty or meaning in the imperfection What may be an ugly scar can also be seen as a badge of courage a testament to all that you have gone through As one person stated in their tag line Scars are like tattoos but with better stories Continue to do the things that promote health and well being such as maintaining an active lifestyle exercising eating well sleeping enough doing things you enjoy A healthy lifestyle may not restore your appearance to what it once was but it will help you look and feel better Consider going to a makeup specialist a stylist or to a program such as the American Cancer Society s Look Good Feel Better program www lookgoodfeelbetter org to help you spruce up your appearance through makeup and changes in hair style or clothing If you can t learn to love your new look try to stop caring about what others may think about your appearance This may require changing what you value about yourself grieving what you have lost and pushing yourself to change your priorities Keep in mind that beauty is in the eye of the beholder and it is subjective Your body image is what you believe about your body but does not necessarily reflect what others see What you find unattractive may be attractive or not noticeable to someone else Have a sense of humor One survivor with blotchy discolored skin noted Guess I won t be modeling bathing suits anymore unless it is the leopard skin print Continue pursuing relationships friendships and activities that you love Relationships succeed or fail all the time based

    Original URL path: http://www.nbmtlink.org/resources_support/spg/spg_appearance.htm (2015-03-27)
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