KT/DA PEN PALSThe following people are interested in exchanging e-mail with other patients or anyone interested in renal disease and its treatment. Just click on a name to send e-mail. If you would like to be added to the list, just send us a message with your name, age, and a little about yourself. We would appreciate it if those listed below would occasionally e-mail us updates. The KT/DA takes no responsibility for the content of any messages exchanged through this page.
Pen Pals 1964 -2014 E-Mail accounts may be outdated
My name is Adele. I am 38 years old and a dialysis RN. I would like to communicate with anyone having or interested in renal failure, dialysis, or a transplant. I am a very faithful penpal and friend.
Hi my name is Amanda and I am 25 years old. I have chronic renal failure and a wonderful little boy and a strange sense of humor about my disease (because I believe that if you don't laugh then you will get worse). I am interested in hearing from people close to my age with the same things going on with them. Maybe we can compare notes and keep our spirits up at the same time. I am going on dialysis soon and don't really know what to expect. so drop me a line or two and let's talk.
Hi, my name is Amy and I am a 23-year-old hemodialysis patient from Indiana. I started CCPD when I was 12, was on for 7 years, then on hemo for 1 year, then recieved a transplant that lasted for almost 3 years. I went back on dialysis in January 1999, about 1 week after getting married. I am very fond of gardening, reading, and keeping animals, and would love to hear from anybody with renal problems, so please drop me a line.
Hi, my name is Angela I'm 33 years old and I come from Edinburgh. I was on CAPD for 18 mths and successfully received a cadaveric transplant in 2000. I was diagnosed in Germany with ckd (I used to be a flight attendant and lived in Bahrain). I'm off prednisolone and only take Tacrolimus, Azathioprine (immunos) and Doxasozin for BP. Not once have I experienced any problems or rejection. I'm very healthy and happy and would love to offer my insight to life with kidney failure.
Brian is aged 39 and a polycystic disease patient from northeast Ohio. Brian began hemodialysis on Feb. 14, 1997, had a cadaveric kidney transplant on Oct. 14, and returned to work Feb. 2, 1998. After six months post tx he feels great, is having no real problems, and will answer your questions if he can.
Hi. My name is Marguerite Burgess. I am a 35 -yr.-old mother of 3. I have been on dialysis for 5 months, due to polycystic disease. My husband of 17 years will be giving me a transplant in late April of 98. I would love to hear from others going through this.
My Name is Penny Clair and just this last year I was diagnosed with PKD. I am 55, and it is apparently late onset which is supposedly to my advantage. Other than the sonogram showing several large cysts on both kidneys and flank and side pain, my function is still good. I have been trying to learn as much as I can and would love to compare notes with others. I am a single parent of 4 children; three are on their own and the 17yr old daughter is still with me. I work full time in Human Services and live in central NY.
My name is Daniel Cronin. I'm 36 years old and live in Wareham, MA. I would love to correspond with other patients. I am a transplant recipient. I was on dialysis for 11 months before receiving a cadaver kidney. May 8, 1998, marked my 15th year with the transplant (1983).
My name is Dave and I am 31 years old, from Ohio, going on my 3rd year on peritoneal dialysis. I had a cadaver donor transplant in November of 1993, but it failed to work any more. I am currently on the waiting list at University Hospitals in Cleveland for a second kidney. I thought that I didn't have any possible living related donors until last Tuesday, when I was told that my sister with O blood type could donate to me, who am A positive. She is willing to be tested, and we are hoping that this will work. I need to get this thing through by March of 2004, since I will no longer have my health insurance coverage. I lost my job when I became ill due to cutbacks. I am currently unemployed, but keep busy talking to people about my disease. I would love to hear from any of you that would like to chat. Please feel to email me anytime. Thanks, and God bless you all
Debbie is 32 years old and donated a kidney to her father in April 1997. She has 3 children and is pregnant with her fourth child. She says the kidney donation and tranplant went great, and she would be glad to talk to someone reluctant to let a child donate to them or to someone considering donation
Nicole Ell: I am 14 and my father has been a hemo-dialysis pactient for 4 months. We live in a small town in Southern Alberta and have a machine in our home.
My name is Francesca and I am looking for a pen pal. I have been on dialysis for 6 years almost, and because of advanced age I am not eligible for a transplant. I would like to find some friends who share the experience. Please write! (added 9/16/10)
My name is Gary. I recieved a transplant in 1988. That transplant lasted 16 years. The kidney failed at the begining of this year. I am on hemodialysis 3 x a week for 4 hours each time. I tried PD, which is what I did for 3 years before my first transplant but the fluid was going up into my lungs this time. The doctors feel that I had some sort of a tear somewhere allowing the fluid up in my lungs and around my heart. That is what brought me to hemodialysis. They have started my work up for another transplant for which I have at least 3 people willing to be tested that have my same blood type. We are hoping for a living donor as the doctor said if I can get a living donar it will be the last transplant I will have to have. If we end up going on the list and getting a cadavar kidney I will need another transplant in my lifetime. If a living donar is not possible then they told me that the average wait for my blood type is 5 years. I am hoping that is not going to be the case as I do not want to be out of work for 5 years. I am a workaholic and not being able to work is not something I enjoy. They did tell me that if I end up waiting for a transplant they might let me try PD again and then I will be able to return to work at least part time. I look forward to hearing from anyone who has or is going through this.
My name is Gary I and live in Owen Sound, Ontario, Canada. I started hemodialysis in January of 1978 and received a transplant in November of 1978. My transplant lasted for 18 years. In 1996 I had bypass surgery and had to return to hemodialysis. I am currently working for the same company that I started with 29 years ago. I am on the transplant list and life is going good. Would like to hear from anyone who would like to chat about anything.
My name is Garry V.and I'm from Cleveland. I am 38, and I received a kidney and a pancreas on Dec. 7th 1996 (the same day Pearl Harbor was bomed). I was a diabetic for 33 yrs., then I developed end-stage renal failure and was placed on CAPD.My surgery was done at OSU and took 6.5 hours. I never thought I would ever hear the words "you're no longer a diabetic." Chills ran up and down my spine. I would enjoy e-mailing messages to anyone who would be interested.
Hello, my name is George. I was on hemodialysis for 2 years 8 months and 21 days before I received my transplant on the 1st of June, 2002. Everything is going well and I feel fine. I am 60 years of age and in my second year of college studying to be a registered health information administrator.
My name is Shari Gilford. I am 37 and have been an ESRD patient since I was 11. I have had two transplants lasting a total of 20 years, and have been on hemo and PD, currently on hemo after a major bout with peritonitis. I like discussing diet, especially potassium-related questions and concerns. I also would like to be an encouragement and help to any child or teenager who is on dialysis or who has had a transplant. I learned a lot being a child with this disease. I am a Christian, and my faith has helped me a lot. I may soon start a program of nocturnal home hemodialysis six nights per week. I'm happy to answer any questions about kidney disease. I also currently write articles for and help edit our local dialysis newsletter and am constantly learning more and more. (March 2003)
My name is Ginny and I'm looking to exchange emails with anyone who believes regaining kidney function, in some cases, is possible. What's out there that might work? Would love to share perspectives and successes. I don't always feel my best interests are being served by the medical profession. Not interested in bad mouthing; just looking for more pieces to the puzzle.
Hi, all! My name is Heather. I will be 25 years old next week and will be married in less than two months. No kids, just a big dog and a fat cat. I began having renal failure at age 3 months. My left kidney was removed when I was 5. My right kidney finally failed at age 15. I was fortunate to never have to go on dialysis. I received a kidney from my mom. It will be 9 years on Sept 24th!!! On a side note, I am also a Dialysis RN. However, I've only worked in dialysis for a little over two months, so I'm still learning. So I definitely know more about dealing with renal failure and transplant than dialysis, but I'm catching on to dialysis more and more every day.
Hello. My name is Isabel and I am currently on hemodialysis treatments due to kidney failure . I am 53 yrs old and have been under treatment since July 1999. My sister is going to give me her kidney. I hope to receive my kidney in the early spring. I would like to be in contact with other people who are is in the same situation.
My name is Jenni. My 6 year old son James is in renal failure secondary to renal malformation patient. He is hypertensive, dehydrates easily, tends to have difficulty with bladder control and seems to have chronic pain. I will be his donor in the future ( if all goes well of course), and I would love to just have someone to talk to who knows what any part of this is like.
My name is John, I'm 43 and have been on dialysis for several years. Two years ago I had an aborted transplant attempt. I've recently relocated to Central Pennsylvania and I'm interested in corresponding with others.
My name is Karen and I'm 25 years old. I've been married for over 5 years and have a 4 month old son. I've been diabetic for 23 years and the pregnancy last year was very rough on my kidneys. The pregnancy caused my kidneys down to rapidly progress to end stage renal failure. I will be starting dialysis soon, and I'm trying to decided whether to have just a kidney transplant or a kidney/pancreas transplant. I would like to talk to anyone, of any age that has Renal Disease. I'd like to talk about anything, kidney disease and life in general.
My name is Laura. I live in Hamilton, Ontario, Canada. I am 41 years old, married, two dogs, no children. I have been on dialysis for 3 years - 2 years PD, one year on hemo. My kidneys failed due to FSGS. Also have osteoporosis. Would love to correspond with all those on dialysis.
My name is Lucy. I am 56 yrs old, from Kenya- Africa, with a 20 yrs diabetes history. My kidenyis have failed, was in a coma, better now and am on dialysis 3 times a week. i have been told that transplant is the solution, and i would like advice from others and also to compare notes (4/5/05).
Hello, my name is Lynn. I am a 25 y/o student, African American female. I live in Kansas City, Ks. I had a kidney transplant in June of 2000.. I am just really looking for someone who likes to write back and forth. I like to share my experience because I believe it helps others deal with it who might be getting ready to go through it.. If anyone wants to email me I would love it. Hope to hear from you soon.
My name is Michael. I am a 24 year old kidney transplant recipient from a living related donor. I have lived with the disease my entire life and have been through dialysis, open heart surgery and a transplant(all within 2 months of each other!). Would love to help anyone with questions or anyone interested in talking.
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My name is Nancy, I am 57 years old, a wife, mother, and grandmother. I commenced on kidney dialysis in January 2000, due to diabetes and consistent high blood pressure. My doctors had been treating me for flu, and finally when I had what appeared to be an asthma attack, my husband took me into the ER, where they discovered my kidneys had failed -- it came as quite a shock! A week later, I was in surgery getting an access implanted in my arm. I was amazed at how much better I felt, once on dialysis, but now am getting educated (I know nothing) on kidney transplants from a cadaver and wondering if those who have had transplants would have rather they stayed on clinic hemodialysis, or are glad they made the choice to have a transplant? What do you think about the medicine you have to take? Does it make you sick? Does it have any affect on how you live? Are you freer now than when you were on dialysis? What are the pros and cons you struggled with when making your decision? As I read over the Pen Pal List, each person listed is a hero or heroine in my book. I know when I go to dialysis, we all encourage and support one another -- it is a very special fellowship -- not many people know what it is about. I am just learning. I would appreciate hearing from anyone who would like to share their story and their walk.
Hi my name is Nicole. I'm 28, married, and live in Australia. I was diagnosed with Iga Nephritis in '92 and received a transplant from my mum in '95. I would love to hear from all tranplantees, especially those interested in starting a family. I enjoy reading, music, cooking, nd doing crossword puzzles. (added 7/13/02)
My name is Cathy Rafa. I just recently found out that I need a kidney transplant. I'm 24 years of age and in college. If there is anyone who can help me with questions I might have, plese e-mail me because I have a lot of questions that have to be answered.
My name is Rajaram and I am 22 years old and I am from India. I had kidney problems from birth. Actually my ureters were twisted and so the doctors had to operate and set it right. Until now, I have undergone 10 operations. My mother donated her kidney to me and I will always be grateful to her. I had my transplant on May 5th 2000. I would like to talk to people who are experinced, i.e, who have had a transplant or students who are interested in my case.. Thank you!.
Gary Riback has been on dialysis for 2 1/2 years and on a kidney transplant list. His wife Laurie is currently being tested to donate a kidney to him. His kidney failure was caused by diabetes, and he's had other complications of that disease. He would like to hear from other dialysis/transplant patients and living kidney donors, and any advice, tips, suggestions, etc. of things that have worked for them. He and his wife are really hoping this spousal donation will be compatible and successful.
My name is Rich. My 31 year old partner and I are dealing with his diabetes (over 20 yrs. diabetic), related renal failure and all the issues that cascade from it. He's been on PD for about 7 months now, having started with Hemo back last June. We're both struggling to stay positive and keep the faith-- but lately it has been so hard. He's in pain. I'm at my wits end. I think we'd both benefit from knowing we are not alone. (added 4/21/05)
My name is Rick and I had my transplant in August 1999 and everything is good very well. I still having trouble with my diabetes as my sugars run all over the place but I feel good and keep my self active. Any questions or concerns that I may help with I will be happy to.
Hello my name is Ruben; been in dialysis since I was 8, now at 34. I'd like to talk to anyone who is between 18 -27.
Hi my name is Shane I am 34 years old and I live in in the United Kingdom I have been on dialysis for 6 years after having a lot of problems all my life. I have been on CAPD, hemodialysis and had a living donor kidney from my Mum, which I sadly lost due to a renal blood clot. I think from my own personal experiences, both myself as the patient and my Mum as my care giver will be able to help others if only a pair of ears for listening. We have started our own website which we hope by telling our story will be helpful to others. Please get in touch .We would love to hear from you and hopefully be able to help you. Thanks
My name is Ruth, I received my transplant on 2-17-94. I was on dialysis while in college. Last year I was diagnosed with colon cancer. I continue to be active, despite everything going on in my life. I prefer to correspond with someone in the age range of 40 to
Hi my name is Rae. I'm in Calgary. I was diagnosed with end stage kidney failure in April 1996. Started dialysis in May 1997, and my brother gave me a kidney in September 1997. Diabetes caused my kidneys to fail and I am interested in talking to anyone in any stage of kidney failure or tranplantation.
My name is Ray. I am a 32-year-old hemodialysis patient from Chesapeake, Va. I have been on hemodialysis for two years now and having a hard time with it. I clot so easy. I had a new graph put in and they stuck it twice and it clotted off. I am getting tired with it all. Maybe If I can get a pen pal my mental state will get better. (Added 11/2001.)
Aloha! my name is Robyn. I just celebrated my 38th birthday last week (September 2003), and I am thrilled to "still be here." My life has been an adventure in many ways, especially my health. I choose to focus on how wonderful life is, no matter how challenging it may be. Some of my health challenges, in a nutshell: diabetes discovered at age 5, a successful pregnancy at age 25 (a daughter, 2 1/2 months premature, delivered by c-section), but an incredibly healthy 12-year-old now! That kicked the dickens out of my kidneys. ESRD diagnosed 1997, CAPD for 2 years, then simultaneous kidney/pancreas cadaveric transplant in 1999. Pancreas is going strong, but transplanted kidney just barely. Hemodialysis since March 2002, and on the waiting list again for another kidney. So I am a rare combination being both a transplant patient and a dialysis patient. I would love to correspond with others in the same boat! I am also into holistic, alternative therapies, and would like to find someone who also seeks outside of allopathic mainstream medicine. I have had tremendously good results with acupuncture and Chinese herbs, for example. My main beef with western medicine is the recommended "renal diet," as I am, and always have been, a whole grain girl, and mostly vegetarian. I have trouble with high phosphorus levels, but I really can't stomach white bread. I believe very strongly in treating the whole body and mind. I have yet to come across another renal patient who thinks "outside of the box," so if you're out there, let me know! I live in Hawaii where renal patients have surprisingly few support/chat/sharing opportunities, so I am eager to hear from anyone that would like to "talk story" as they say here. Mahalo!
My name is Karen Kennamer Scott. I am 37, married with a son in college. I am a cadaveric kidney/pancreas transplant recipient of 8 years. I was a lifetime diabetic and went into ESRD because of high, untreated, prolonged blood pressure resulting from that disease I was on hemodialysis for one year and on transplant waiting list for 3 months. I am taking minimal immunosuppressants as well as BP meds. I was transplanted in Galveston, while living and coming from dialysis in Fort Worth and now live in Austin, TX. I am currently the VP of the Lone Star Chapter of AAKP , another patient oriented group. I have an extensive renal e-mail contact network as well as "snail mail." I am a writer and therefore an e-mail addict. I help with Diabetic Support meetings locally, and I also facilitate a Low Vision support group here in Austin. I am, of course, involved with the two transplant support groups here in Austin. One includes all organ transplants, and one is renal. I enjoy music of all kinds at different times. Reading, computing, cooking, gardening, walking are some interests. Coincidentally, I am also legally blind and use adaptive equipment and software. adaptive computer equipment and software.
Hi, my name is Susan and I am 33 years old. I received a kidney transplant almost 3 years ago and I am doing very well. My husband and I are thinking about starting a family, but we are worried that it could be too big of a risk to my health. I would love a chance to talk with others about their experiences with pregnancy after transplant. (added 6/5/02).
Hello my name is Tawana, I'm a 32-year-old kidney/pancreas transplant patient. It's been a little over a year since I received my transplant. The recovery process was very difficult and slow; however once I got over the complications from the surgery I felt fine. Also for anyone who would like to discuss their transplant issues or patients on dialysis I would be more than happy to share my experience as well as my expertise on the subject with anyone interested. Also since my surgery I had problems with anemia, low white blood count, low red blood count, low potassium, and phosphorus on a consistent basis. I understand that some of the anti-rejection medications can cause these problems. However I would like to know if anyone else has problems in these areas. Please email me with any questions or concerns, and please attempt to answer my questions regarding the health problems mentioned above. (added 4/15/05)
HI! My name is Teri and I am a 24 year old female. I was just released from the hospital after a successful kidney transplant. I would love to talk to someone who has been through a similar situation or who is about to go through this. Feel free to contact me with any questions or stories or if you just feel the need to talk. (2/17/05)
My name is Tonya. I am 33 years old and a transplant recipient. I recently had a bilateral kidney transplant on October 27, 2001. I tremendously blessed with two kidneys. I have been doing excellent. I haven't had any signs of rejection at all. I did have to start taking blood pressure medicine and wear a weekly patch. My kidneys failed in 1997 and I was put on hemodialysis for 3 weeks. I had abdominal surgery for peritoneal dialysis but had to wait for my site to heal before I could use the catheter. I tried the CCPD and the CAPD. I liked the CAPD best and was on that for 3 years and 10 months till I received my call on October 26, 2001. I would be happy to talk to anyone who has any questions or just someone who wants to talk and have someone to listen.
My name is Tony and I am on hemo for 24 years and I must say in a pretty good shape. I live in Greece and I do home dialysis. Are there still people on home hemo? There used to be so many sometime ago but I think for some reason people don't like it any more. I would really love to hear from home patients and exchange experiences
Hello, my name is Valerie Gould and I am a member of the Ktda and would like to be added to the pen pals list. I myself had a kidney transplant 14 years ago on March 22, 1990 and would like to hear from anyone who has questions or concerns. I would be glad to talk to them.
My name is Senita Wesley. I am 27 years old and just received a kidney transplant in May 1998. I was on hemodialysis for 5 years. I am still trying to learn information about the body after kidney transplantation.
Hi! My name is Penny Young. I am 42 years old. I am married and have a 10 year old son. I was diagnosed with ESRD in December of 1999. I was not diabetic. Kidney disease did not run in my family. I was not hypertensive until I developed the kidney problem. No one has ever been able to tell me why this happened to me. I was on hemodialysis for four and a half years. I did very well. I did not think I even wanted to get a transplant, but I was told that the longer I stayed on hemodialysis, the more my overall health would deteriorate. After being on the transplant list for about three and half years, I received a cadavaric kidney transplant on August 24, 2004. Things are going pretty well so far. I am handling all the medications fairly well, but have experienced quite a few side effects. Nothing I can't live with. I have gained about 13 pounds in two and a half months. I am having some problems with my skin and hair-- hair loss on top of my head, hair gain in just about every other place. I am most concerned about the weight gain. I am finding it very difficult to control it. My nephrologist just "graduated" me to every other week visits. I am feeling a little insecure about that. I liked the feeling of being looked after.
I would like to correspond with other people in my "age bracket" who have had successful kidney transplants. I would like to know how you are feeling, what you are doing with your life, what medications you are taking and how they are affecting you, etc. My doctor is encouraging me to go back to school or to start a new job. I don't really feel ready for that yet. I was an elementary school teacher for 16 years when I became ill. I know I don't want to go back into teaching. Too stressful and germy.
Please write to me and tell me about your experiences. I would be glad to hear from anyone who feels like sharing.
Pen Pals 1964 -2014 E-Mail accounts may be outdated
My name is Adele. I am 38 years old and a dialysis RN. I would like to communicate with anyone having or interested in renal failure, dialysis, or a transplant. I am a very faithful penpal and friend.
Hi my name is Amanda and I am 25 years old. I have chronic renal failure and a wonderful little boy and a strange sense of humor about my disease (because I believe that if you don't laugh then you will get worse). I am interested in hearing from people close to my age with the same things going on with them. Maybe we can compare notes and keep our spirits up at the same time. I am going on dialysis soon and don't really know what to expect. so drop me a line or two and let's talk.
Hi, my name is Amy and I am a 23-year-old hemodialysis patient from Indiana. I started CCPD when I was 12, was on for 7 years, then on hemo for 1 year, then recieved a transplant that lasted for almost 3 years. I went back on dialysis in January 1999, about 1 week after getting married. I am very fond of gardening, reading, and keeping animals, and would love to hear from anybody with renal problems, so please drop me a line.
Hi, my name is Angela I'm 33 years old and I come from Edinburgh. I was on CAPD for 18 mths and successfully received a cadaveric transplant in 2000. I was diagnosed in Germany with ckd (I used to be a flight attendant and lived in Bahrain). I'm off prednisolone and only take Tacrolimus, Azathioprine (immunos) and Doxasozin for BP. Not once have I experienced any problems or rejection. I'm very healthy and happy and would love to offer my insight to life with kidney failure.
Brian is aged 39 and a polycystic disease patient from northeast Ohio. Brian began hemodialysis on Feb. 14, 1997, had a cadaveric kidney transplant on Oct. 14, and returned to work Feb. 2, 1998. After six months post tx he feels great, is having no real problems, and will answer your questions if he can.
Hi. My name is Marguerite Burgess. I am a 35 -yr.-old mother of 3. I have been on dialysis for 5 months, due to polycystic disease. My husband of 17 years will be giving me a transplant in late April of 98. I would love to hear from others going through this.
My Name is Penny Clair and just this last year I was diagnosed with PKD. I am 55, and it is apparently late onset which is supposedly to my advantage. Other than the sonogram showing several large cysts on both kidneys and flank and side pain, my function is still good. I have been trying to learn as much as I can and would love to compare notes with others. I am a single parent of 4 children; three are on their own and the 17yr old daughter is still with me. I work full time in Human Services and live in central NY.
My name is Daniel Cronin. I'm 36 years old and live in Wareham, MA. I would love to correspond with other patients. I am a transplant recipient. I was on dialysis for 11 months before receiving a cadaver kidney. May 8, 1998, marked my 15th year with the transplant (1983).
My name is Dave and I am 31 years old, from Ohio, going on my 3rd year on peritoneal dialysis. I had a cadaver donor transplant in November of 1993, but it failed to work any more. I am currently on the waiting list at University Hospitals in Cleveland for a second kidney. I thought that I didn't have any possible living related donors until last Tuesday, when I was told that my sister with O blood type could donate to me, who am A positive. She is willing to be tested, and we are hoping that this will work. I need to get this thing through by March of 2004, since I will no longer have my health insurance coverage. I lost my job when I became ill due to cutbacks. I am currently unemployed, but keep busy talking to people about my disease. I would love to hear from any of you that would like to chat. Please feel to email me anytime. Thanks, and God bless you all
Debbie is 32 years old and donated a kidney to her father in April 1997. She has 3 children and is pregnant with her fourth child. She says the kidney donation and tranplant went great, and she would be glad to talk to someone reluctant to let a child donate to them or to someone considering donation
Nicole Ell: I am 14 and my father has been a hemo-dialysis pactient for 4 months. We live in a small town in Southern Alberta and have a machine in our home.
My name is Francesca and I am looking for a pen pal. I have been on dialysis for 6 years almost, and because of advanced age I am not eligible for a transplant. I would like to find some friends who share the experience. Please write! (added 9/16/10)
My name is Gary. I recieved a transplant in 1988. That transplant lasted 16 years. The kidney failed at the begining of this year. I am on hemodialysis 3 x a week for 4 hours each time. I tried PD, which is what I did for 3 years before my first transplant but the fluid was going up into my lungs this time. The doctors feel that I had some sort of a tear somewhere allowing the fluid up in my lungs and around my heart. That is what brought me to hemodialysis. They have started my work up for another transplant for which I have at least 3 people willing to be tested that have my same blood type. We are hoping for a living donor as the doctor said if I can get a living donar it will be the last transplant I will have to have. If we end up going on the list and getting a cadavar kidney I will need another transplant in my lifetime. If a living donar is not possible then they told me that the average wait for my blood type is 5 years. I am hoping that is not going to be the case as I do not want to be out of work for 5 years. I am a workaholic and not being able to work is not something I enjoy. They did tell me that if I end up waiting for a transplant they might let me try PD again and then I will be able to return to work at least part time. I look forward to hearing from anyone who has or is going through this.
My name is Gary I and live in Owen Sound, Ontario, Canada. I started hemodialysis in January of 1978 and received a transplant in November of 1978. My transplant lasted for 18 years. In 1996 I had bypass surgery and had to return to hemodialysis. I am currently working for the same company that I started with 29 years ago. I am on the transplant list and life is going good. Would like to hear from anyone who would like to chat about anything.
My name is Garry V.and I'm from Cleveland. I am 38, and I received a kidney and a pancreas on Dec. 7th 1996 (the same day Pearl Harbor was bomed). I was a diabetic for 33 yrs., then I developed end-stage renal failure and was placed on CAPD.My surgery was done at OSU and took 6.5 hours. I never thought I would ever hear the words "you're no longer a diabetic." Chills ran up and down my spine. I would enjoy e-mailing messages to anyone who would be interested.
Hello, my name is George. I was on hemodialysis for 2 years 8 months and 21 days before I received my transplant on the 1st of June, 2002. Everything is going well and I feel fine. I am 60 years of age and in my second year of college studying to be a registered health information administrator.
My name is Shari Gilford. I am 37 and have been an ESRD patient since I was 11. I have had two transplants lasting a total of 20 years, and have been on hemo and PD, currently on hemo after a major bout with peritonitis. I like discussing diet, especially potassium-related questions and concerns. I also would like to be an encouragement and help to any child or teenager who is on dialysis or who has had a transplant. I learned a lot being a child with this disease. I am a Christian, and my faith has helped me a lot. I may soon start a program of nocturnal home hemodialysis six nights per week. I'm happy to answer any questions about kidney disease. I also currently write articles for and help edit our local dialysis newsletter and am constantly learning more and more. (March 2003)
My name is Ginny and I'm looking to exchange emails with anyone who believes regaining kidney function, in some cases, is possible. What's out there that might work? Would love to share perspectives and successes. I don't always feel my best interests are being served by the medical profession. Not interested in bad mouthing; just looking for more pieces to the puzzle.
Hi, all! My name is Heather. I will be 25 years old next week and will be married in less than two months. No kids, just a big dog and a fat cat. I began having renal failure at age 3 months. My left kidney was removed when I was 5. My right kidney finally failed at age 15. I was fortunate to never have to go on dialysis. I received a kidney from my mom. It will be 9 years on Sept 24th!!! On a side note, I am also a Dialysis RN. However, I've only worked in dialysis for a little over two months, so I'm still learning. So I definitely know more about dealing with renal failure and transplant than dialysis, but I'm catching on to dialysis more and more every day.
Hello. My name is Isabel and I am currently on hemodialysis treatments due to kidney failure . I am 53 yrs old and have been under treatment since July 1999. My sister is going to give me her kidney. I hope to receive my kidney in the early spring. I would like to be in contact with other people who are is in the same situation.
My name is Jenni. My 6 year old son James is in renal failure secondary to renal malformation patient. He is hypertensive, dehydrates easily, tends to have difficulty with bladder control and seems to have chronic pain. I will be his donor in the future ( if all goes well of course), and I would love to just have someone to talk to who knows what any part of this is like.
My name is John, I'm 43 and have been on dialysis for several years. Two years ago I had an aborted transplant attempt. I've recently relocated to Central Pennsylvania and I'm interested in corresponding with others.
My name is Karen and I'm 25 years old. I've been married for over 5 years and have a 4 month old son. I've been diabetic for 23 years and the pregnancy last year was very rough on my kidneys. The pregnancy caused my kidneys down to rapidly progress to end stage renal failure. I will be starting dialysis soon, and I'm trying to decided whether to have just a kidney transplant or a kidney/pancreas transplant. I would like to talk to anyone, of any age that has Renal Disease. I'd like to talk about anything, kidney disease and life in general.
My name is Laura. I live in Hamilton, Ontario, Canada. I am 41 years old, married, two dogs, no children. I have been on dialysis for 3 years - 2 years PD, one year on hemo. My kidneys failed due to FSGS. Also have osteoporosis. Would love to correspond with all those on dialysis.
My name is Lucy. I am 56 yrs old, from Kenya- Africa, with a 20 yrs diabetes history. My kidenyis have failed, was in a coma, better now and am on dialysis 3 times a week. i have been told that transplant is the solution, and i would like advice from others and also to compare notes (4/5/05).
Hello, my name is Lynn. I am a 25 y/o student, African American female. I live in Kansas City, Ks. I had a kidney transplant in June of 2000.. I am just really looking for someone who likes to write back and forth. I like to share my experience because I believe it helps others deal with it who might be getting ready to go through it.. If anyone wants to email me I would love it. Hope to hear from you soon.
My name is Michael. I am a 24 year old kidney transplant recipient from a living related donor. I have lived with the disease my entire life and have been through dialysis, open heart surgery and a transplant(all within 2 months of each other!). Would love to help anyone with questions or anyone interested in talking.
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My name is Nancy, I am 57 years old, a wife, mother, and grandmother. I commenced on kidney dialysis in January 2000, due to diabetes and consistent high blood pressure. My doctors had been treating me for flu, and finally when I had what appeared to be an asthma attack, my husband took me into the ER, where they discovered my kidneys had failed -- it came as quite a shock! A week later, I was in surgery getting an access implanted in my arm. I was amazed at how much better I felt, once on dialysis, but now am getting educated (I know nothing) on kidney transplants from a cadaver and wondering if those who have had transplants would have rather they stayed on clinic hemodialysis, or are glad they made the choice to have a transplant? What do you think about the medicine you have to take? Does it make you sick? Does it have any affect on how you live? Are you freer now than when you were on dialysis? What are the pros and cons you struggled with when making your decision? As I read over the Pen Pal List, each person listed is a hero or heroine in my book. I know when I go to dialysis, we all encourage and support one another -- it is a very special fellowship -- not many people know what it is about. I am just learning. I would appreciate hearing from anyone who would like to share their story and their walk.
Hi my name is Nicole. I'm 28, married, and live in Australia. I was diagnosed with Iga Nephritis in '92 and received a transplant from my mum in '95. I would love to hear from all tranplantees, especially those interested in starting a family. I enjoy reading, music, cooking, nd doing crossword puzzles. (added 7/13/02)
My name is Cathy Rafa. I just recently found out that I need a kidney transplant. I'm 24 years of age and in college. If there is anyone who can help me with questions I might have, plese e-mail me because I have a lot of questions that have to be answered.
My name is Rajaram and I am 22 years old and I am from India. I had kidney problems from birth. Actually my ureters were twisted and so the doctors had to operate and set it right. Until now, I have undergone 10 operations. My mother donated her kidney to me and I will always be grateful to her. I had my transplant on May 5th 2000. I would like to talk to people who are experinced, i.e, who have had a transplant or students who are interested in my case.. Thank you!.
Gary Riback has been on dialysis for 2 1/2 years and on a kidney transplant list. His wife Laurie is currently being tested to donate a kidney to him. His kidney failure was caused by diabetes, and he's had other complications of that disease. He would like to hear from other dialysis/transplant patients and living kidney donors, and any advice, tips, suggestions, etc. of things that have worked for them. He and his wife are really hoping this spousal donation will be compatible and successful.
My name is Rich. My 31 year old partner and I are dealing with his diabetes (over 20 yrs. diabetic), related renal failure and all the issues that cascade from it. He's been on PD for about 7 months now, having started with Hemo back last June. We're both struggling to stay positive and keep the faith-- but lately it has been so hard. He's in pain. I'm at my wits end. I think we'd both benefit from knowing we are not alone. (added 4/21/05)
My name is Rick and I had my transplant in August 1999 and everything is good very well. I still having trouble with my diabetes as my sugars run all over the place but I feel good and keep my self active. Any questions or concerns that I may help with I will be happy to.
Hello my name is Ruben; been in dialysis since I was 8, now at 34. I'd like to talk to anyone who is between 18 -27.
Hi my name is Shane I am 34 years old and I live in in the United Kingdom I have been on dialysis for 6 years after having a lot of problems all my life. I have been on CAPD, hemodialysis and had a living donor kidney from my Mum, which I sadly lost due to a renal blood clot. I think from my own personal experiences, both myself as the patient and my Mum as my care giver will be able to help others if only a pair of ears for listening. We have started our own website which we hope by telling our story will be helpful to others. Please get in touch .We would love to hear from you and hopefully be able to help you. Thanks
My name is Ruth, I received my transplant on 2-17-94. I was on dialysis while in college. Last year I was diagnosed with colon cancer. I continue to be active, despite everything going on in my life. I prefer to correspond with someone in the age range of 40 to
Hi my name is Rae. I'm in Calgary. I was diagnosed with end stage kidney failure in April 1996. Started dialysis in May 1997, and my brother gave me a kidney in September 1997. Diabetes caused my kidneys to fail and I am interested in talking to anyone in any stage of kidney failure or tranplantation.
My name is Ray. I am a 32-year-old hemodialysis patient from Chesapeake, Va. I have been on hemodialysis for two years now and having a hard time with it. I clot so easy. I had a new graph put in and they stuck it twice and it clotted off. I am getting tired with it all. Maybe If I can get a pen pal my mental state will get better. (Added 11/2001.)
Aloha! my name is Robyn. I just celebrated my 38th birthday last week (September 2003), and I am thrilled to "still be here." My life has been an adventure in many ways, especially my health. I choose to focus on how wonderful life is, no matter how challenging it may be. Some of my health challenges, in a nutshell: diabetes discovered at age 5, a successful pregnancy at age 25 (a daughter, 2 1/2 months premature, delivered by c-section), but an incredibly healthy 12-year-old now! That kicked the dickens out of my kidneys. ESRD diagnosed 1997, CAPD for 2 years, then simultaneous kidney/pancreas cadaveric transplant in 1999. Pancreas is going strong, but transplanted kidney just barely. Hemodialysis since March 2002, and on the waiting list again for another kidney. So I am a rare combination being both a transplant patient and a dialysis patient. I would love to correspond with others in the same boat! I am also into holistic, alternative therapies, and would like to find someone who also seeks outside of allopathic mainstream medicine. I have had tremendously good results with acupuncture and Chinese herbs, for example. My main beef with western medicine is the recommended "renal diet," as I am, and always have been, a whole grain girl, and mostly vegetarian. I have trouble with high phosphorus levels, but I really can't stomach white bread. I believe very strongly in treating the whole body and mind. I have yet to come across another renal patient who thinks "outside of the box," so if you're out there, let me know! I live in Hawaii where renal patients have surprisingly few support/chat/sharing opportunities, so I am eager to hear from anyone that would like to "talk story" as they say here. Mahalo!
My name is Karen Kennamer Scott. I am 37, married with a son in college. I am a cadaveric kidney/pancreas transplant recipient of 8 years. I was a lifetime diabetic and went into ESRD because of high, untreated, prolonged blood pressure resulting from that disease I was on hemodialysis for one year and on transplant waiting list for 3 months. I am taking minimal immunosuppressants as well as BP meds. I was transplanted in Galveston, while living and coming from dialysis in Fort Worth and now live in Austin, TX. I am currently the VP of the Lone Star Chapter of AAKP , another patient oriented group. I have an extensive renal e-mail contact network as well as "snail mail." I am a writer and therefore an e-mail addict. I help with Diabetic Support meetings locally, and I also facilitate a Low Vision support group here in Austin. I am, of course, involved with the two transplant support groups here in Austin. One includes all organ transplants, and one is renal. I enjoy music of all kinds at different times. Reading, computing, cooking, gardening, walking are some interests. Coincidentally, I am also legally blind and use adaptive equipment and software. adaptive computer equipment and software.
Hi, my name is Susan and I am 33 years old. I received a kidney transplant almost 3 years ago and I am doing very well. My husband and I are thinking about starting a family, but we are worried that it could be too big of a risk to my health. I would love a chance to talk with others about their experiences with pregnancy after transplant. (added 6/5/02).
Hello my name is Tawana, I'm a 32-year-old kidney/pancreas transplant patient. It's been a little over a year since I received my transplant. The recovery process was very difficult and slow; however once I got over the complications from the surgery I felt fine. Also for anyone who would like to discuss their transplant issues or patients on dialysis I would be more than happy to share my experience as well as my expertise on the subject with anyone interested. Also since my surgery I had problems with anemia, low white blood count, low red blood count, low potassium, and phosphorus on a consistent basis. I understand that some of the anti-rejection medications can cause these problems. However I would like to know if anyone else has problems in these areas. Please email me with any questions or concerns, and please attempt to answer my questions regarding the health problems mentioned above. (added 4/15/05)
HI! My name is Teri and I am a 24 year old female. I was just released from the hospital after a successful kidney transplant. I would love to talk to someone who has been through a similar situation or who is about to go through this. Feel free to contact me with any questions or stories or if you just feel the need to talk. (2/17/05)
My name is Tonya. I am 33 years old and a transplant recipient. I recently had a bilateral kidney transplant on October 27, 2001. I tremendously blessed with two kidneys. I have been doing excellent. I haven't had any signs of rejection at all. I did have to start taking blood pressure medicine and wear a weekly patch. My kidneys failed in 1997 and I was put on hemodialysis for 3 weeks. I had abdominal surgery for peritoneal dialysis but had to wait for my site to heal before I could use the catheter. I tried the CCPD and the CAPD. I liked the CAPD best and was on that for 3 years and 10 months till I received my call on October 26, 2001. I would be happy to talk to anyone who has any questions or just someone who wants to talk and have someone to listen.
My name is Tony and I am on hemo for 24 years and I must say in a pretty good shape. I live in Greece and I do home dialysis. Are there still people on home hemo? There used to be so many sometime ago but I think for some reason people don't like it any more. I would really love to hear from home patients and exchange experiences
Hello, my name is Valerie Gould and I am a member of the Ktda and would like to be added to the pen pals list. I myself had a kidney transplant 14 years ago on March 22, 1990 and would like to hear from anyone who has questions or concerns. I would be glad to talk to them.
My name is Senita Wesley. I am 27 years old and just received a kidney transplant in May 1998. I was on hemodialysis for 5 years. I am still trying to learn information about the body after kidney transplantation.
Hi! My name is Penny Young. I am 42 years old. I am married and have a 10 year old son. I was diagnosed with ESRD in December of 1999. I was not diabetic. Kidney disease did not run in my family. I was not hypertensive until I developed the kidney problem. No one has ever been able to tell me why this happened to me. I was on hemodialysis for four and a half years. I did very well. I did not think I even wanted to get a transplant, but I was told that the longer I stayed on hemodialysis, the more my overall health would deteriorate. After being on the transplant list for about three and half years, I received a cadavaric kidney transplant on August 24, 2004. Things are going pretty well so far. I am handling all the medications fairly well, but have experienced quite a few side effects. Nothing I can't live with. I have gained about 13 pounds in two and a half months. I am having some problems with my skin and hair-- hair loss on top of my head, hair gain in just about every other place. I am most concerned about the weight gain. I am finding it very difficult to control it. My nephrologist just "graduated" me to every other week visits. I am feeling a little insecure about that. I liked the feeling of being looked after.
I would like to correspond with other people in my "age bracket" who have had successful kidney transplants. I would like to know how you are feeling, what you are doing with your life, what medications you are taking and how they are affecting you, etc. My doctor is encouraging me to go back to school or to start a new job. I don't really feel ready for that yet. I was an elementary school teacher for 16 years when I became ill. I know I don't want to go back into teaching. Too stressful and germy.
Please write to me and tell me about your experiences. I would be glad to hear from anyone who feels like sharing.
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