Comments and Thoughts from Patients 2002 

The best of times...

* My husband [who had a transplant] competed in two national Veterans Wheelchair games where he received a total of 4 gold and 3 bronze medals. Allotransplant 1991

* I just celebrated being 10 years cancer free by hosting a party in my new home with my husband, family and close friends. I am a newlywed of 4-1/2 months. I love my job-first grade teacher-and I love my life. Autotransplant 1992

* Two bone marrow transplants #1 March 1988 #2 October 1992. Cured! Alive and well! Few problems. Thank you. Autotransplant 1992

* At 70 years of age, I am running a telecommunications company .... I do get tired after an 8 hour day at work Could you fax this? It takes time away from my hobbies-fishing and photography. Allotransplant 1990

* I have been working for 2 years and after the first few months, I resumed my position as managing director of a 200 million dollar business and manage as well as ever (if not better). I enjoy work and its challenges. Allotransplant 1999

* After I made contact with my donor, we met in Los Angeles and spent the day at Universal City. We kept in touch, and I was able to go to his wedding in Wisconsin .... He and his wife are from immigrant Polish families. I am proud to have their blood in my veins. Allotransplant 1998

* My daughter's health has been exceptionally good. She has had one cold in 12 months. She rides horses, she skis all day on weekends. She is exceptionally social-which somewhat inhibits her progress at school. I don't think we can blame that on her BMT. Allotransplant 1999

* I am very active. I work as a construction electrician. My job requires a lot of driving. I also do blacksmithing as a hobby. I live in the country. I am constantly digging up a water line or planting fruit trees, doing yard world and currently building a large workshop. I get tired and stiff and sore, but I am able to enjoy living. I would like more energy, but so would most of my friends. Allotransplant 1992

* My son re-entered school this year as a junior. He has been able to play basketball and maintain a 4.0 GPA, as well as a normal social life. He has felt well and stayed healthy, with the exception of a couple of colds. We are looking forward to a complete recovery and along and happy life for him. Allotransplant 2000

* I feel better than ever. I even joke with people and tell them I recommend everyone have a BMT. Allotransplant 1999

* In all honesty, I rarely even think about my transplant other than to offer encouragement to people having health problems. I am in extremely good condition these days. I play tennis 3 times per weep work out twice a week, and chase my husband's granddaughter around one day every week Allotransplant 1990

* My wife and I bought an existing chicken farm along with 88 acres of land. Our chicken houses hold about 115,000 chickens. My wife runs and operates the farm. I work as an account representative in the oil and gas business. I told you this so you would know I have a full time job by day and a full time farm to keep up. On November 20, we will celebrate our 20`h wedding anniversary. We got married 3 months before my transplant. I celebrate life everyday and want you to know that we are living our dream. Allotransplant 1983

* My husband has been feeling great with no .complications, since the initial transplant and 6 months thereafter (he got Pneumocystis pneumonia). He has also not taken any meds since the pneumonia. Can't believe it's been 17 years already. He is so busy-working 12 -13 hours days that he didn't have time to fill this out!! Allotransplant 1984

* I do miss the "congratulations on your 15th year as a survivor" that came with the questionnaire before. It really made me fell good! Allotransplant 1987

* I too miss the yearly "congratulations. " Allotransplant 1990

The worst of times...

* I am very sad to have to tell you that my wife [who had a transplant] died at the age of 51, waiting for a liver transplant. We received the diagnosis of Hepatitis C in the summer of 2001. The doctor believed a liver transplant was my wife's only hope for survival-we had no idea how short a time she had. I am sorry that we were not able to learn of this earlier, as I have heard that there is a treatment available to control the disease in earlier stages. Allotransplant 1978

* I feel like I've done really well after the BMT, until I was diagnosed with melanoma last October. I had noticed this spot and told my then oncologist, but he said it was nothing. I went to a dermatologist and she biopsied it, and it was cancer .... I wish I'd known ahead of time that this melanoma was a good possibility for transplant people. I would have been more aggressive. Allotransplant 1996

* I am continually surprised as to the effect the transplant had on my life in general. The physical and emotional stress is something only someone who has been through a transplant can understand. I am depressed when I realize that this might be as good as it gets. 1 am sick and tired of being sick and tired. If I could only wake up one morning and feel good, I would be most grateful. Allotransplant 1997

* My first year post-transplant has been a lot more difficult and the recovery much slower than I ever imagined. It definitely takes a lot of time and patience to get through it. I didn't expect to still be on so many pills a year later, but I am very grateful to still be here to take them. Allotransplant 2001

* I wish I had understood and been told how long it would take to be able to have a "normal" life and that maybe it was impossible. Physically, emotionally and financially, life is much harder than I ever realized it would be at this point. Allotransplant 1999

* I can no longer afford health insurance. I'm unable to qualify for any state services. I'm on Medicare and unable to work. I'll have to sell my home in order to continue to pay for medical costs. Autotransplant 1992

* Looking back, I wish I had been given more information about what to expect when I went home. Not just the 100-day after transplant, but the entire period of recovery. I have a very difficult recovery that lasted 2 1/2 years. My husband and I had no idea it would be such a long ordeal. In our minds, we were thinking that I would need 6 months to recover, and then everything would be back to normal. Allotransplant 1997

* Just wish I didn't get so tired. I must realize that I, along with a lot of healthy people I know, have a hard time keeping up with a 2 -year old child. Allotransplant 2001

* I suffer from anxiety and panic disorder that can be very limiting to my social activities at times. I still feel that I think about the transplant very often, and I want to "get over it"--I get angry with myself for not being able to "let it go. " Allotransplant 1990

* Terrible financial problems! Mainly as a result of my BMT. I feel very guilty that my husband is having to face this at the end of his life. When he has tried so hard and worked so hard to have us financially secure at the end of our lives. Financial problems are driving a wedge between us-sometimes I wish I had not wanted to live so much that I would use all he had with a BMT. I never realized I would be so incapacitated or that the costs of the procedure and after-costs would be close to $2 million-far outweighing our financial resources. Allotransplant 1996

* It's hard for people to understand what I have gone through unless they have gone through it themselves. I think more information could be given out to any future patient regarding post-transplant side effects. No one can imagine the recuperation period of a transplant. Little did I realize that I would feel the way I do. It hasn't been easy on myself as well as my family. Autotransplant 2001

* I am very depressed, but I am taking an antidepressant, seeing a counselor and occasionally attending a women's cancer support group. I am finding my loss of physical function and pain to be very difficult to cope with, and even though I am very glad to be alive most of the time, I do experience episodes of depression so severe that I wish I hadn't survived. I am scared of the dying process, and that is contributing to my poor mental health status, yet my mental health status is contributing to my lack of energy for rehabilitation. Allotransplant 2001

* If I had it to do over, I would not have a stem cell transplant. I still don't have hair and have never been the same. I had a near death experience (6 days on a ventilator)... .1 have short-term memory loss, and it's extremely hard to concentrate. My husband and I have no sex life. Autotransplant 1999

* Sometimes I feel like I'm living in hell. I still have frequent bouts of nausea and lots of medicine to take. Prednisone and cyclosporine are making me sick ....1 am feeling more sick now than ever before. Allotransplant 2001

* My kidneys are now failing. I am on peritoneal dialysis, but I am in the process of starting hemodialysis. My sex life is non-existent. Along with other problems, I wish some of the after-effects of BMT had been explained to me before my BMT. Allotransplant 1995

* I never expected to have so many problems after transplant. If I knew I was going to change this much, I may have reconsidered having the transplant. I feel like a 90-year old woman. I'm weak and tired all the time. I've had diarrhea for 3 years straight. Can't anyone change me back to the way I was before leukemia? Allotransplant 1998

* I have had major problems with my teeth since being treated for my cancer. The chemo and radiation caused loss of saliva and weakening of the teeth over the last 3 years. I have all but 4 of my lower teeth removed. Autotransplant 1995

* Mostly I am very happy I survived, but I have some guilt and a great deal of frustration because I have lost so much (stamina, career, fearlessness). Allotransplant 1996

* I'm having a very difficult time transitioning from lots of care and attention at FH to being alone, in pain, and wondering, "What is the new normal" here at home. I don't think I was prepared enough for such a major transition from FH care to home care and a new way of "living. " Allotransplant 2001

* My health is marginal. ... It seems to be harder to walk up stairs without heavy breathing, and I never have any reserve energy. I have smelly loose stools but not to the point of diarrhea .... The doctors are trying to find out why 1 am not absorbing fat. ...I don't have the strength or the endurance like I used to have. I feel that I am always in first gear. Allotransplant 1996

My husband had the GVHD come back after he was taken off the immune suppression. His skin gradually got worse every day. Then he lost his appetite, and the stomach cramping started every time he would eat. His stomach cramping was getting more severe every day. Then he started with diarrhea. Allotransplant 2001

A few expressions of appreciation of life (among many)

* I now have 60 weeks or months without any thoughts of the transplant. In a way that is great; in other ways I should remember how lucky I am. Allotransplant 1988

* My experiences over the last 4 years have taught me a lot about the value of life. I am ever grateful to the Hutch for giving me back my life. I have learned to be thankful for every moment. I am rarely stressed, because all problems are now in the proper perspective. The only things that really bother me now are seeing others who rush through life with no regard for it. People who drive dangerously really piss me off. Allotransplant 1999

* I was able to attend diabetes management clinic. That really changed my attitude. I felt like if I could manage CML for 10 years and fibromyalgia for 8 years, another chronic illness was manageable. Thank you for the training I received those 21 years ago during my BMT. Allotransplant 1981

* I have a fabulous, full life thanks to the treatment I received there, and my kids still have their mommy. Autotransplant 1998

Memory loss and coping strategies

* After 6 years, I am fortunate to have minimal medical problems and good health .... My chief complaint is memory loss, poor memory and other related cognitive deficits. My speech has been affected and ability to learn and retain information greatly diminished. These are not unbearable, but often frustrating and maddening. Allotransplant 1996

* In general, my major issues: A) memory loss (so very frustrating to both my wife and me). 1) past memories (childhood, youth, other memories pre-TBI); 2) current events-some recent events are not remembered, even entire blocks of time, like an evening with friends. B) quickly become tired and even weak during work or physical exertion. C) lack of concentration-BIG time-but maybe I also have ADHD--who knows now? Allotransplant 1983

* After 13 years post-transplant, my memory issue does not seem to have improved, but I've learned to cope with it ... not getting upset when incidents occur, explaining the issue to friends and co-workers so that they understand, and simplifying my life so there are less opportunities to forget things and it's easier to recover from the incidents that are bound to happen. Allotransplant 1989

* Just don't try to remember why you went to the kitchen, or sometimes you throw away items in your hand and have to empty the garbage cans. But you know what? I sure have found a lot of checks. Don't change the location of apiece of jewelry, clothing or important paper, thinking this would be a better location. All these items I have lost [during] the past 12 years are still lost. Just don't sweat it. Laugh at yourself! Allotransplant 1990

* I have come to the realization that I now rely heavily on the "visual".... and with the 'photogenic memory" in mode, moving anything can be disastrous. I'11 never find it again .... So "routine" and "visual placement" became very significant for memory and clear thinking. Allotransplant 1994

My daughter has some accommodations at school, like extra time on tests, or she can bring them home to finish. She also is allowed to use her notes on tests if she needs to. This year she seems to need the accommodations a little less. She definitely has memory problems and has a lot of trouble with math .... She's a whiz in English and loves science. Allotransplant 1995

* I'm not comfortable doing purely technical accounting since my transplant, as I can't retain the numbers or tax codes like I used to. My strength now is operations and process, as that seems logical to me and easy to lay out on paper. I've lost much of my ability to calculate in my head. People think I'm really organized because of all my notes and files .... What I'm seeking is a way to feel mentally clear. I miss that. Allotransplant 1992

* One major concern I have is my short-term memory, which is a change since transplant time. I really think working would be impossible for that reason, as well as my stamina. Noise and commotion seem to bother me, as anything fast paced. I have a hard time playing games with the family. I'm curious if other transplant patients experience these symptoms. All in all, I'm thankful to be alive and able to make life style adjustments. Allotransplant 1997

* I've noticed these things-increased difficulty to concentrate for long periods (i.e., a typical working day at the office); some curtailment of ability to recall events, information, etc.; strong difficulty to focus on or hear someone speaking one to one with me in a crowded, noisy room; accelerated tooth decay; some foot pain, first noticed during transplant days. Allotransplant 1992

* I'm so very grateful to see an interest and recognition of our problems. I've spent 5 years now, knowing my compromised mind and body isn't what it used to be. Throughout that time period, I felt alone in my quest for normalcy and acceptance of compromised cognitive thinking processes. I will probably continue to struggle, but it's encouraging to know these are real problems, not imaginary, and there are probably others out there like me. Allotransplant 1997

* It's been 16 years, and I remember it like it was yesterday. Even the dream I had when I was in my coma. But hard to remember last week!!! Allotransplant 1986

* More emphasis before discharge on issues of fatigue and cognitive impairment would have been helpful. I have been surprised by how exhausted I have been. Some days getting a shower was more than I could manage, and it varies from day to day. My short-term memory is not good, I have difficulty concentrating and synthesizing complex information. I think SCCA could do a much better job of preparing patients for the side effects of prednisone and the impact after the taper. I found it one of the most difficult components of my time in Seattle. Allotransplant 2001

Other problems and a few suggestions

* I am interested in information you may have about my Hepatitis C. I had a liver biopsy that showed I have a very low level of damage to my liver. I will watch this over time. Allotransplant 1984

* This has been our most challenging year since my daughter's transplant 11 years ago. We've seen evidence of endocrine system problems, and this year, she has begun taking supplements of both synthroid and estrogen/progestin. The plan is to continue growth hormone for 3 - 6 months more and then evaluate. We feel so fortunate that this is the extent of her medical problems .... We accept that many of our questions related to long-term effects of hormone replacement therapy beginning at age 14, fertility questions, etc. are simply unable to be answered due to lack of data. Allotransplant 1991

* Major problems: vaginal stenosis, dry eyes and cataracts, lung problems/asthma, hard to stay focused and concentrate, dry mouth and major dental problems. Allotransplant 1989

I spent several years trying to get back my libido. I tried a lot of things and did a lot of reading and research. I finally asked my doctor for testosterone ointment. It made a big difference. Helped a lot with vaginal dryness and libido. My relationship with my husband has improved greatly. I hope this information may help someone else! Autotransplant 1995

* My hair is still extremely thin. As a young woman, I am bothered by this and the extreme vaginal dryness I have. I had hoped that these two issues would have improved by now, 3 years post transplant. Autotransplant 1999

* I also have a big problem with no libido, which causes big problems in my marriage. Is there some sort of support group for this? Any new medical treatments/supplements? The gratefulness for being alive is offset every day by reminders that I am now asexual and this will probably never get better. Allotransplant 1994

* I was using toothpaste with extra whiteners in them. I noticed a big difference once I switched to toothpaste with no whiteners. My mouth was not as dry. Allotransplant 2001

* My only complaint is that I had heard only that cataracts were possible (they happened) and that I should use sunscreen. Now you're telling me things I wish I had known earlier-and I'm doing them. Allotransplant 1989

* The sinuses are the most frustrating, irritating problem I've ever had. ... My face hurts, my eyes hurt, my ears ache and my teeth ache. If I don't get the pills right away my energy level goes down to zero and my joints ache like I have the flu. I hate it. I really can't get used to being sick all winter long. Allotransplant 1983

* My only complaint, health-wise, is a lack of "quick" recovery in my muscles. Play 18 holes of golf or shoot a bucket of balls at the driving range and arm muscles are sore for 3 - 4 days. Allotransplant 1993

* A big limitation of mine continues to be lack of thermoregulation, especially in hot weather or when I'm cooking. It seems like there could be a problem with my ability to sweat. My face especially turns red during showers, exercise, cooking and when I'm out in hot weather .... My face and chest get so red when I'm at the gym that people I don't know sometimes stop to ask if I'm OK. Allotransplant 1992

* I am concerned that the billing process has not been completed after 4 years. This is a constant reminder of the difficulties related to being a transplant patient, and that I struggle to meet financial needs. Alrotransplant 1997

* I have to find health insurance. That is a huge problem. Allotransplant 1992

Children and grandchildren

* Since 1994, I met my wonderful husband, married, journeyed down the road of adoption and adopted a beautiful son! ... Adopting my son was an amazing process, and he as brought more joy to us than we can explain. Allotransplant 1989

* My biggest sadness is the fact that I cannot have a child. My sister had a baby 2'/2 years ago, and he's my life. But it killed me while in the delivery room to think that out of all the joys I look forward to in life, this will be one I can't experience. Allotransplant 1992

* I'd like to let you know that through the miracles of in-vitro fertilization, I have 3 wonderful sons and a terrific husband, who has stuck with me since my transplant when we were only 18. Allotransplant 1984

*  I'm pregnant and due in February. Getting pregnant was very difficult. We were fortunate to have frozen embryos prior to transplant. ...I wish there was more information on pregnancy after a BMT even with a surrogate egg donor. Also we need more information on premature menopause. These are serious issues that I feel are almost brushed aside. ... Emotionally, I was devastated by the thought of never having children. Of course, I was thankful to be alive and healthy, but to honestly feel whole again, I needed to have a baby. I hope there is more open discussion of the options-freezing embryos, egg donation, surrogacy and adoption. And that as more people attempt it, there is more publication of possible obstacles. Allotransplant 1999

* You have given me time to see my children graduate college, my daughter med school, and my son starting med school, and wonderful years with my wife (the best event in my life was marrying her!) Allotransplant 1985

* I sent my only son off to college in September. He was a year old at the time of transplant when I only imagined what it would be like to see him grow up. Allotransplant 1984

* Fourteen years ago, I thought that I would never see my daughter grow up. Now she is in her senior year of high school, preparing for college. I am here .... My life is far from perfect, but 1 am thankful every day, good or bad, that I am here alive and with my family. Allotransplant 1988

* I've seen all 4 of my children graduate from college and get married. I now have 2 wonderful grandchildren. I tell people constantly that life after cancer can be very rewarding. Allotransplant 1989

* I have survived to see children married, more grandchildren, and even a great-granddaughter. For this I am forever grateful. Allotransplant 1987

* Thanks for the last 20 years. When I had my transplant, I had a 4 year old daughter. Now I have a 4 year old and 21/2 year old granddaughter to fight for. Allotransplant 1982

Perspectives from a distance

* I am more tired now, but I am also 8 years older. I try to stay healthy. I've recently ended mental health therapy. Eight years, two cancers, a BMT plus life's normal hassles were a bit much. I'm feeling fine now. I have a grandson, a 51/2 month old. I never thought I'd live to have this joy. Allotransplant 1994

* I have been discharged from the hospital with the following diagnoses: chronic gastritis, irritable bowel syndrome, multiple ovarian cysts, and peripheral lymphocytosis. The rest was all right. This was not serious, but everything was debilitating. However, I am all right, my health is not great, but I am OK! Allotransplant 1983

* I had both of my intra-ocular lens transplants done in 1994 and my left hip replaced in 1995. In the mid 90's they diagnosed me with Hepatitis C. Last year my creatinine level went up to 5.2 and my blood pressure 200/120. I was hospitalized for one week. ... My stamina and physical condition is much better now than ever before. My daughter is going to be 17 next year, my son is going to be 14, my wife is sweet like we met on day one. .. God bless the world. Allotransplant 1989.

* 1 am still working with the effect the sexual function aspect of this process-to go into it fertile and sensual and to come outpost-menopausal and libido-suppressed takes a longer time than anything. I'm now able to achieve orgasm, but it took years of patience and a wonderful husband! Allotransplant 1993

* My first year post-transplant, I was in and out of the hospital 4 times with pneumonia. On the first anniversary of my transplant, I went back to the FHCRC for a follow-up visit. You put me on prednisone, and I've never been back in the hospital since. I am now 54 years old. My children are 29 and 26 years old, and I have 3 beautiful grandchildren. My quality of life has been excellent over the years, except for the normal bumps in the road. I still work full time, and I think I have less aches and pains than some of my friends and co-workers. Although I don't particularly like getting older, I cherish my birthdays and celebrate with joy! I've been very blessed. Allotransplant 1979

* I cannot believe that it has been 21 years since my transplant. I am in really good health and haven't had any bad side effects. The first couple of years was pretty hard, got tired of being tired all the time. I had great support at home, and that is so very important. Autotransplant 1981

* After having my bone marrow transplant at the age of 3, I am now 19 years out. The first time I filled out one of these surveys, it really upset me. I had tried all my life to be like everyone else, and all the questions just made me feel really abnormal. But now, as I fill it out, I understand how lucky I am to have, recovered as well as I did.... The problems that I face day-to-day are the same any anyone else. Stress from work and school, stress over the search for "Mr. Right, "I am a normal 22 year old just trying to find my place in the world. I am just a bit luckier because my biggest battle is over and done with, and anything else that comes into my life is easily handled and taken care of Allotransplant 1983

* I have recently been diagnosed with Hepatitis C. Currently I'm not taking any medication, but plan to start this fall. My doctor has been contact with someone at FHCRC.... It's been 18 years now, I think I've managed pretty well. I have 40 acres of land, a beautiful wife, 6 horses and 6 cows. We also have 6 Australian shepherds that guard the house while we're at work. ... Sometimes I forget that I ever had leukemia. Allotransplant 1984

* I lived 15 years before my transplant, and 18 years (and counting) after .... I've finished high school, graduated from Yale University, met and married a beautiful woman, and enjoyed 18 years of life. Not every day is wonderful, but I enjoy and appreciate the whole experience of life much more than I did before I became sick. I don't think about my transplant experience every day, but every so often, something comes along (like your questionnaire) that reminds me how lucky I am. Allotransplant 1984

* I feel so blessed. Seventeen years is a long time ago, yet it seems like yesterday. P.S. If the Hutch would like to call me, I would be happy to answer any questions that may benefit others. However, this is the last questionnaire I am answering. It is all gloom and doom for me at this point. I am forever grateful to the wonderful, dedicated people at the Freddie Hutch. Allotransplant 1985

* Can't say enough about what it means that over the past 15 years post-transplant, I have seen my younger sister and brother marry and have kids; started a new career as a computer tech; survived a divorce; and have a much stronger faith in the faithfulness of God. Transplantation is a strain (to say the least), bit it was a blessing to my family. We were drifting apart, and this brought us all much closer together. Allotransplant 1987

* I was diagnosed in 1991 with Hepatitis C and cirrhosis, ,but I had 5 wonderful years after my BMT and before my liver disease became critical... .Even after my liver disease became life-threatening, I've had the joy of seeing my youngest brother grown into a man. My mother became a nurse. I saw the both of my nephew and niece who are the children of my donor .... 1 dream of having a life where I can work and not depend on my parents for everything. Even though I am bed-ridden most of the time, I still find things I can laugh about. Allotransplant 1988

* In reading the comments sent in by other post-transplant patients, I realized that my symptoms such as depression, short-term memory loss, etc. are not uncommon. I am very happy to have seen my daughter graduate from college, my son enter high school, and to celebrate my 25th wedding anniversary. Allotransplant 1993

* Going on 26 years and feeling extremely fortunate to be alive and healthy. After reading some of the other comments and lists of drugs that some people must have to take, I truly feel blessed. It's funny how day-to-day life and work can get hectic and frustrating at times, but when you reflect on your health, it's easier to put it all in perspective. Autotransplant 1976

* I tend to experience every little physical blip as possible recurrence. My joke is that cancer gives you hypochondriasis. Autotransplant 1998

* Yes it has changed my life; physically I'm not the same, and mentally I'm not as I would like to be. Debilitated? No. Anxious? Most of the time .... Those things are still minor when I look back at my situation, as a young woman facing leukemia who just wanted to live to see her children grow up. They were 2 and 5 then. Now they are 16 and 20. Allotransplant 1987

* The first two years, I thought I would never heal up and feel right again .... By early 3rd year out, I was feeling good and normal on the inside again .... In my 4`h and 5` years out, I had two bouts with heavy congestion as a result of colds .... I got over it and have no problems since. ...I have been using Viagra for 2 years .... The little blue pill has really worked well in my case. Six years out, it also seems like it didn't even happen to me (a distant memory) not always foremost in my thought like it was the first 2 years. Allotransplant 1995

* Eighteen years after my treatment, I am doing very well. I am in medical school, following the example of my parents, eldest brother and all the health care professionals who treated me and my family at FHCRC and my hometown hospital. As I become more involved in the health care profession, I realize how much goes into the treatment of the biological, emotional and utterly disheartening aspects of disease. Allotransplant 1983

* Most of my joint problems are because of my age (44). I'm beginning to fall apart, but it sure beats the alternative. Autotransplant 1996

* The first year after transplant felt like 5 years. The last 4 years have gone relatively quick. We cannot believe that my husband has seen his 5-year post-transplant date, our 19`h wedding anniversary, our youngest child now in 4th grade, trips to Disneyland, etc....Life is not the same as pretransplant, but we would not trade it. Allotransplant 1997

Compliments, complaints and suggestions

* I especially remember Chuck, the outpatient receptionist. He took what could have been a very dismal waiting room and made the atmosphere goofy and fun. I hope he knows how much he meant to so many patients and caregivers. Autotransplant 1998

* It would certainly be nice for FHCRC to be able to be contacted via e-mail. Those of us in the Eastern Time zone have a limited time frame to contact you and get a response back the same day. If not e-mail, an 800 number would also be good to have. Allotransplant 1998

* Leaving the FHCRC-"the cocoon "--vas very difficult. Fortunately, the follow-up clinic has been very available to my local oncologist and to me-to answer questions and concerns, which has been very reassuring and probably, decreasing my stress, which improves my immune system. Allotransplant 2002

* Not satisfied with the responses my doctor got when he called for directions. Took 4 - 5 days. Allotransplant 1997

* Before the transplant my team explained to me about the risk to have a transplant and the possible side effects of the medications that I have to take after the transplant. However, they never told me how long the sickness originated by these medications would last. ...I really feel tired to deal with those side effects. I thought that when finishing the MMF pills, things will be better. It was not. Now I am waiting when we start to reduce the cyclosporine. I hope I will be better after that. My opinion about this situation is that I should have received better information about the duration of the medication's side effects. Allotransplant 2002

* One of the most difficult things for post-BMT patients is returning home to cities in which no one including physicians-has even a remote clue about the hazards and protocols for post-BMT issues and follow-up. Our lives are truly dependent, oftentimes, on the knowledge and assertive action of our caregivers, interacting and communicating with doctors, hospitals, and FHCRC (from a distance). Allotransplant 1994

* My experiences over the past few years since my transplant in attempting to discuss questions and issues that arose have been frustrating and disappointing. I would like very much to be able to consult with FHCRC clinicians about my concerns, but I was not able to do so and was stymied by your so-called triage system. I was actively discouraged from contacting you further. Autotransplant 1998

* I would love to see some of the results of this research. Allotransplant 1987

* I think a narrative should be created for caregivers on what it is like to be with someone on prednisone, e.g., sleeplessness, repetitive thinking, personality amplification, etc. Allotransplant 2002

* It would be good if you mailed "Thoughts from LTFUPatients" to each of us sooner. It would have supported me very much if I'd known that I was experiencing what was "normal" right away. Allotransplant 2001

* This was my 20-year anniversary of my transplant. I haven't been back to Fred Hutch since, so I hope you have changed a few things. For example, my mom and I didn't see a social worker until the last week we were there, and I had a new doctor every month. I felt like a monkey in a cage sometimes because not only was I in a laminar air flow room, but every morning, about 10 -12 interns, students etc. would come by and talk about my case like I wasn't there. Allotransplant 1982

* For the most part, the Hutch did a wonderful job with my case. The staff were uniformly excellent, though the rotation of doctors was a pain I didn't need. The psychological counseling was severely lacking. The process is a pain to go through, and I usually felt more like a lab rat than a person undergoing treatment. There needs to be more focus on the person. Allotransplant 1997

About the questionnaire and the thoughts and comments from patients

* It is impossible to accurately assess the emotional well being of an individual over a period of 4 weeks when it changes on a daily basis. It seems that it would make more sense to ask the same questions daily for a period of 4 weeks. The emotional battle is unique to the individual. Allotransplant 2000

* Your survey is too long. Allotransplant 1998

* I found the information sheets you sent this year were helpful to know you're not alone out there. I did find I didn't relate to most of the patient's individual comments, but I think it's because I'm further out than they are. Allotransplant 1982

* Is there a shorter form for those who do not take any BMT meds or problems from BMT? Since my answers here were all "no" (with few exceptions), I see no point in marking it the same every year. Allotransplant 1986

* I found this lengthy questionnaire a bit much, and several of the questions irritating (my sex life and weight are irrelevant to your research). If you intend to send out this kind of questionnaire next year, please take me off your list of participants. Allotransplant 1990

* I realized, by going through this survey, that I have few reasons to complain and should be screaming at the top of my lungs every single day for my health! While I have long-term effects from my unrelated BMT for CML, they don't keep me from a normal life of a full-time profession and love of spouse and family. I am so very blessed to be here! I also want to tell you how much it meant to read those comments. While it brings back some tough memories, it also puts perspective on my life and what I am not struggling with 8 years post-transplant. Allotransplant 1994

* I thought my questionnaire for this year was supposed to be pared down based on my answers I had given last year. This is the same time-consuming questionnaire. Being 6 years post-transplant, most of the questions thankfully don't pertain to me. This questionnaire is good for newly transplanted patients, but there should be a shorter version for patients who are more than 5 years post-transplant. Allotransplant 1996

* Thanks very much for sending along the comments from others. They were supportive and interesting. I never thought that anyone would send us findings from any of the research (despite asking for it). That's exceptionally considerate of you. Allotransplant 1997

* I really enjoyed the thoughts from LTFU patients that you sent. I am 3 years post-transplant and completely cured, but I am still in this hazy, gray zone where I am not completely healthy and 100% yet. To read the same thoughts and concerns from people similar to me is both a consolation and a strengthener. I had the transplant 3000 miles away from home. As a result, I don't have the history with, or the access to, others in my situation at home. This has been one of the most difficult situations post-transplant-the loneliness of it. Allotransplant 1999

* I believe that if a patient is still being treated at FH because of GVHD, you should have a different type of questionnaire. This one applies to long-term people that you don't see.... The questionnaire made me feel that you have no clue even though we are in contact weekly because of the cyclosporine and the GVHD. Allotransplant 2000

* This is so good to be informed for all the long-term care we patients should do for ourselves. I gradually understand that "back to normal" is somewhat impossible, though hard to accept it. Allotransplant 1998

* What if my fingernails and toenails look unusual but it's not a problem for me? This form of question is subjective and relative. Autotransplant 2001

* As I sat reading the comments others have written, I found myself crying. Not knowing if this was the depression talking or just overwhelmed at the knowledge that someone else feels like I do. I get tired easily, I've got depression and forget things easily... .Maybe I'm not as alone as I feel sometimes. Allotransplant 1984

* I am so glad you keep in touch with me, because I know I wouldn't find the time to contact you, most likely. It is slightly depressing yet strangely comforting to fill out these forms-sometimes I feel a need to communicate my experiences at FHCRC, and it is nice to know that someone is still listening. Autotransplant 1998

* I extremely happy to tell you that I have never experienced post-transplant problems similar to those I read about in the pamphlet enclosed in your mail to me. Allotransplant 1993

* I don't see where I accomplish much by filling out this questionnaire except for being frustrated by my inability to write. Autotransplant 2000

* Really appreciated the "Thoughts from Former Patients. " It helped to read that others are having difficulties as well and that patients further in recovery (years later) are much more positive. I really hope that FH will develop a post-transplant program the assist us in reaching a full recovery and a better quality of life. Allotransplant 2001

* It was very good to receive and read all the other thoughts from other transplant patients. I don't feel so alone. It's such a traumatic experience. No one knows but another transplant patient. Autotransplant 1999

* When I read the comments from others today, I nodded and smiled--so helpful to hear real stories from people who are living the experience, sharing the stories--particularly the hugely successful ones-is so powerful. Allotransplant 1993

A final thought

* I am just flooded and overwhelmed with so many thoughts and emotions .... Six years have passed. I'm here. Definitely different. Living in a world I couldn't have imagined. Alive. Stronger in many ways. Very weak and tired in others .... I have accomplished professional milestones. But the truth is that I simply can't do what I could do before the transplant. I tire easily and suffer from post-traumatic stress disorder and depression. My mind is not as sharp as it was before and it's harder to concentrate. Overall, if you saw me, I look healthy .... It's hard getting used to my new life. I don't think of the BMT that often, although I remember all of it-every detail-and wish I could forget. But I know I can't and won't. And I still owe something--forever-to those who will come after me' and have to struggle through a BMT. The saddest thing-and perhaps the best thing-is that some day, BMTs will be a thing of the past, obsolete. New medical techniques will cure leukemia without the brutal, high-risk approach that I and others suffered through. Allotransplant 1996