Welcome to Gil's guestbook 2003!Name: Patti Schneider Hometown: Yakima, Washington Sent: 1.58 PM - 12/18 I'm real new at PKD, and got your website from Klix on a chatroom. Thanks to both of you. I have a lot of questions and a lot to learn. I'll be visiting your site every day! Name: Gwen DeBusk Hometown: Granbury Texas Sent: 10.30 AM - 11/9 God Bless you Gil for sharing your story and helping us caregivers that are so lost and scared due to medical professionals not educating us or sharing with us valuable information we need. I found your website thru the Kidney failure message boards on AOL. Thank you for allowing me to go forward with my husband's care (Hemo, and no chance for a transplant due to other illness)and be somewhat optimistic. Name: Victor Garcia Homepage: http://www.pkdforum.org Hometown: Mexico City Sent: 10.53 PM - 10/25 Gil, Your site is great, you have no idea how good you are giving to other people to share your life experience... I have made a WebSite related to PKD, please visit it: http://www.pkdforum.org Thanks... Victor Name: Karen Hometown: USA Florida Sent: 10.11 AM - 10/15 Thanks again Gil, Your Website is great and in lamin's term which makes it much easier to understand It has gave me hope and inspriration ...God Bless and Good luck to you... Name: Nanette Angle Sent: 10.54 PM - 10/11 I just happened on to this site and am so glad I did. As the Director of two chronic hemodialysis units and 1 PD clinic, plus an acute unit this web site has been very informational for me. I think the patient information and education is just wonderful and so easy to understand. I actually picked up some ideas for us to improve our delivery of care. Thank you. Name: Argel Flinn Hometown: Vienna,West Virginia Sent: 12.05 AM - 9/24 I stumbled onto your site. will be starting dialysis in the near future. very near. my Doctor discussed PD with me today,but I had already decided on hemo. I have a fistula in my left arm. Had it done in January.I am glad to have found your site, it has reinforced some questions that I had. Name: Julie Hometown: Wraysbury, UK Sent: 12.21 PM - 9/17 What an amazing person you are Gil. Your humour shines through all your struggles - good luck and best wishes for the future to you and your wife. This is exactly the kind of information my husband needs as he "prepares for dialysis" - Thank you so much. Name: Angie Homepage: http://www.angies-kidney.canadianwebs.com/ Hometown: Windsor, Ontario Canada Sent: 5.33 AM - 9/15 I am on Peritoneal Dialysis (CCPD) for 2.5 years now and I've just recently had removal surgery for hyperparathyrpoidism because my PTH levels were too high and my calcium was too high. My blood pressure was high and then one day it dropped to 75/37 so they changed my dialysis and now it is fine. My hemoglobin is always low so I always give myself 2 needles of 4,000iu of Epo (Eprex it is called here) per week. I just wanted to say I love how detailed your site is about your health and I read as much as I can. I need to go to sleep though .. but I am reading this as I am hooked up already to my CCPD machine. My computer is right near my bed. So much I read I could relate too. I like your site. It is done very well. Thank you for sharing with all of us :) - Angie, 29 year old past transplant who's on CCPD now. Name: Dianne Aker Hometown: Mishawaka, Indiana Sent: 1.48 PM - 9/7 Gil, What an inspiration you are. My son had a transplant last February. His sister donated her kidney to him. So far so good, very few drug reactions, slight tremors, and weight gain.He experienced none of your many synptoms and problems. I do also notice mood swings, even though he doesn`t think so. Anyway, thank you again for telling your story, and enlightening so many people of this dread disease. Dianne Name: Michelle Hometown: Chicago, IL Sent: 2.19 PM - 9/2 I read your whole story word for word. As a person on the kidney/pancreas transplant list, I am more nervous now. The hospital doesn't explain what could go wrong, they just mention all of the benefits. I am currently working full-time and have not started dialysis yet. The toxins are building and the test results are starting to get worse and dialysis is imminent, if I don't get "the call". After the surgery, I plan to return to work after 3 months. Maybe I shouldn't be too sure about that. I can't believe how hard you had it. It was wonderful of you to have the forethought to document all of your experiences. I haven't seen any other stories as complete as yours. I hope you are doing well these days and I hope that I won't have near the complications that you had. I wish you well. Name: Fred Hometown: Schiedam Netherlands Sent: 12.10 PM - 9/2 Thanks for sharing now I understand a bit more wat I am up against Fred Name: Ana Arche Hometown: San Diego, Ca. U.S.A. Sent: 6.27 PM - 8/23 Thanks for taking the time to share your struggles, experiences, knowledge and VICTORIES....I enter the PKD Family in 1987 and have been a researcher ever since. If you don't know the disease, you are at a loss in all counts. Great job, Gil. Shalom. Name: Janet Cahill Hometown: San Jose CA Sent: 1.12 PM - 8/22 I cannot thank you enough. I will be back often!!! Janet Name: Doug McCullar Hometown: Harrah, OK Sent: 10.57 AM - 8/21 THanks for the very good information and details of your struggles on your web site. My Dad died of PKD after years of fighting on August 6, 2003. During his last days I was told my Neph. that my kidneys were now failing too. Again thanks for your story as I look for hope in a transplant soon. Name: joe gray Hometown: lake cicott, ind Sent: 11.16 AM - 8/17 gil, it's good to meet someone with health problems like mine.my kidneys failed in 93.i got my tplant in 95.and just this year it had to be removed because of a tumor.now i'm back on dialysis. no matter how bad i feel,there's always someone who is in worse condition than me. 10 years ago there wasn't enough info about our illness.your web page has helped me alot.people like you are an insprition to all who have esrd.thank you. Name: Gary Raynsford Hometown: Leigh-on-sea Sent: 5.07 PM - 8/7 Hi Gil, I was transplanted back in '94 and it's good to hear about someone going through what we all have to go through and keeping such a very positive attitude. Congratuluations on all your good work and good humour. Name: Michal Hometown: Pabianice, Poland Sent: 1.41 PM - 7/31 Very good and interesting www Much more better then any polish site Good job and good luck Name: Nancy Hometown: Orlando, FL Sent: 8.12 PM - 7/30 You have really helped me. I felt very lost and alone in my disease, but you have showed me that i am not alone. thank you for your story and your on going strength, you are an inspiration to all. Name: Anne Uible Homepage: http://kidneygurl.diaryland.com Hometown: Cincinnati. Ohio Sent: 6.06 PM - 7/19 Terrific job on your website! I will be back to read more. Name: Lyle Adams Hometown: MO Sent: 4.00 PM - 7/12 Name: Dyane Crompton Hometown: Manchester England Sent: 6.02 PM - 7/8 WOW what a great site... im on hemo dyalasis since xmas, and doing work up to transplant. Age 34. I love reading other peoples stories their a great help. thanks for sharing your experiences. take care. Name: Hal Cohen Hometown: Liverpool, UK Sent: 9.41 AM - 7/7 Many thanks for a superb web site - so much great information. Good luck for the future, Hal Name: lorraine thompson Sent: 10.24 AM - 6/25 thank you. what more can i say. Name: Hans Hometown: The Hague, Holland Sent: 12.23 PM - 6/20 Hi Gil, Read about your creat figures, great, way to go. Hope your infection did not return. Wish you and your wife good luck and many healthy years Name: Sue Hometown: Woking, England Sent: 3.10 PM - 6/19 Thanks, I was diagnosed about 5 years ago when I was 40. I don't have to see any one at the moment. I was seeing a specialist once a year but they say I don't need to..? I am trying to watch what I eat and keep busy physically....it's been good to read about your experience. Name: Helen Roehr Hometown: Britton, SD Sent: 10.59 PM - 5/30 I'm so glad I found your pages. You are very knowledgable and I've learned a lot. Will be visiting you again when it isn't quite so late. Thanks Name: Lisa Hometown: Park Forest, Illinois Sent: 2.05 PM - 5/14 Gil, I love your website. You have some great information and it was nice to read about your story. I have PKD and have had it for 20 years and I'm about to start dialysis, unless I can get a transplant. I asked for some information on "Dialysis Online" and you responded with your website information. I must say that hearing your story has really touched my heart and I'm not as scared as I was when I was originally told that my kidneys are failing rapidly. Thanks again. Name: Krissi Homepage: http://www.worldadopt.org Hometown: Clearwater, FL Sent: 8.33 AM - 4/22 I've had chronic kidney disease for 12 years. Like any other 26 year old I hate the fact that it slows me down sometimes but I try hard to maintain a positive attitude :) Thank you for your wonderful website! As I move ever closer to dialysis its comforting to read someone else's experience... Name: Dee Hometown: Ventura Sent: 12.01 AM - 4/22 My Mom has PKD, she had to have emergency surgery 2 weeks ago and her kidneys shut down completely. She has recovered a bit but we are looking at probably having to have dialysis. The doc is checking her blood and we will be seeing him this Friday. Your information is wonderful. I have been filled with so many questions and this is the first time I have found answers. My Mom just turned 81 2 weeks ago and boy is she scared. Me too!!!!!!!! Thanks for your help. Dee Name: keith Hometown: Vancouver, BC Sent: 11.41 AM - 4/20 Hi Gil .. thanks for all the great information. I'm working on understanding diet and I found your site to be a great basis! Thanks! Name: DAVID Sent: 6.19 PM - 4/13 great page thank you Name: MGBADA JOE,ABA Hometown: ABA,NAIJA Sent: 2.10 PM - 4/12 I LOVE THIS PAGE. Name: Linda Hometown: Az Sent: 12.29 AM - 4/12 A wonderful site. I just found out Xmas time that I have kidney failure. It will take time to read all your information, but I am sure I will learn more info than I have to date. God bless Name: Brian Kelly Sent: 9.49 PM - 4/7 Thanks Gil. Your page is what we need. I have been on hemo for 18 months and luckily for me I do it at home. Name: Antonio Mafnas Hometown: Saipan, Northern Marianas Sent: 6.45 PM - 4/6 Gil, You may be geographically thousands of miles away from where I am, but your informational website is just a click in front of me. I work on dialysis machine doing repair and preventive maintenance, for Commonwealth Health Center (government hospital). Population: 60,000 people. There are 90 plus hemodialysis patients, and expecting more. PD is something new here, though some patients are very much interested. Many, many thanks for the very informative and educational website. Take care my friend. Warm island Hafa Adai from Saipan to you & yours. Antonio "Tony" Name: nicole Hometown: ede, the Netherlands Sent: 2.49 PM - 3/30 this is a great site. thanks for the information. good luck in the future. greats nicole Name: James Allen, Sr Hometown: south carolina Sent: 11.46 PM - 3/28 Thanks my husband just started dialysis and he hasone kidney and this info helped, all we have is medicare and i am paying everything our of my pocket, are they anyone i can get help from, he is also a diabetic and i know that the meds after a transplant is expensive, how can i pay for it, this is my husbands life i am playing with. I am a part time worker. I have two teenagers and one of them is adhd, are they any help for me availiable, just wondering. Name: Robert Mize Hometown: Onalaska, Texas Sent: 4.35 PM - 3/28 Gil, thanks for this great page. I knew for years that I had pkd but really did nothing about it until last year when one kidney hemorraged and I finally had it removed. It weighed 11 lbs...shortly after (late Aug,2002) I began hemodialysis and it has gone very well. I am inspired to learn more and take a bigger role in my future treatments by your experiences. I am very thankful for the opportunity to have dialysis as I am otherwise healthy at 64yrs old and remember my father's death related to PKD at age 61 and his father's at about the same age. Name: Diane McCarter Hometown: Sevierville, TN Sent: 2.13 AM - 3/28 I am in desperate need of any and all information for new dialysis patients. My mom just had shunt last Monday,3/24/03 and I know basically nothing about dialysis. I know the diet is very important and that is about it. The hospital gave her a book with the right and wrong foods but not the quantities of anything allowed daily. The dialysis hasn't began yet, hopefully she will be able to allow the arm to heal for 4 weeks before 1st time. Also, she has congestive heart failure, severe anemia, thyroid problem, and I am worried sick. She is 74 years old and very frail. Any information you might offer will be gratefully apreciated. Thanks in advance........Diane Name: Gem Hometown: Far East Sent: 11.12 PM - 3/19 Hi Gil When the news of ERSD hit me i was pretty lost...however thank God for folks like you. You have been an inspiration. Be blessed Name: Ron Behbahani Hometown: Alexandria, Virginia Sent: 10.32 PM - 3/17 Gil, Congratulations! You've done a great job in creating this site. Your honest, factual and funny observations are plain good reference material for anyone who wants to get a human-like glimpse into the world of ESRD. May God bless you and your family. Keep up the good work. Name: Cynthia & David Williams Homepage: http://pages.ivillage.com/cynthiadarlene/homepage/ Hometown: Temple, Georgia Sent: 9.46 PM - 3/14 Wow ... Great Site Gil. You have alot of important info here. Thanks for sharing your story ! Dialysis is hard and we appreciate all your effort putting this site together. Best Wishes, Cynthia & David Name: Sally Hometown: Liverpool, England Sent: 11.18 AM - 3/8 A brilliant site - answered many of the questions I had. You've gone into my "favorites" !!! Best Wishes Sally Name: Bob M Sent: 6.43 AM - 3/5 Thanks! Name: Diane Killen Hometown: Hicksville, New York Sent: 5.19 PM - 3/3 I love your webpage. I have been on dialysis for 7 years and have done both PD and HD. You have done a wonderful job explaining dialysis and sharing your life with us. Thank you. Name: Eve Alvir Hometown: Queens, New York City, NY Sent: 7.20 PM - 2/27 Nice to visit your website. All this time I've just been scouring the Patients' Forum. I noticed how well you come up with answers. Thanks. Name: Michelle (chelle) Hometown: Scottsboro, Alabama Sent: 7.20 PM - 2/23 I was on PD for about 3 years, now I'm on hemo and I have doing it for almost 4 years. In alot of ways reading your website made me feel as if I was reading my own story. I don't know all there is to know, but reading your website has given me that extra"humpf" to keep on learning. You are the"Greatest!" Name: Chip G. Hometown: Salt Lake City,Ut.84101 Sent: 2.51 PM - 2/23 Hey there: Great page and the info is super...will be comming back to this page again and again... Thanks again Chip G. Name: Cy Hometown: Palo Alto, California Sent: 9.45 PM - 2/22 Gil, I am so glad to have found your page. Thank you so much for creating it! My 12 year old son (who is also a computer programmer) has MPGN. You answered several questions that I have had for some time. Best of luck with your new kidney. I wish you and your family all the best. Cy Name: Dobi Hometown: Hampton, GA. USA Sent: 7.20 PM - 2/18 Dearest Gil, You are my HERO! I'm a veteran at this dialysis/kidney failure stuff and I still learn something new everyday from you. Thank you so very much for your unquestionable honesty and forth- rightness...you have a special place in my heart. Name: Lisa Hometown: Fresno, CA Sent: 2.24 PM - 2/14 I really like your site! It's informative and gives me inspiration to take more control with my own care. I've had ESRD since I was 11 (I'm 24 now), and have done PD, two transplants, HD, and back again to PD in that order. These most recent events have really been the first time I've dealt with my condition as an "adult," and it like's doing everything anew. Anyway, thank you for sharing your story, and best wishes for your transplant! Name: Julie Hometown: Bronx, NY Sent: 10.45 PM - 2/6 Gil Thanks, you are great. My 12 year old son got his transplant 3 years ago and he has had his ups and downs but we are still hanging in there. I am looking forward for the best. Good luck. Name: lorraint thompson Hometown: tehachapi, ca. Sent: 6.13 PM - 2/6 You are one great guy. Thank's for your inspiration and support for others with polycystic kidney disease. Name: Tom Ross Hometown: Lindsay Ont. Canada Sent: 6.00 AM - 1/25 Thanks Gil for the very informative information on dialysis treatments. I am starting PD very shortly, had capitor inserted Dec 2002. Present function is 17%. Your story has me concerned about the type of treatment I chose but if needed I assume HD could be introduced later. I am 56 years old, working male and hoping to still work while on dialysis. Presently driving transport. Hope to keep in touch with you for future correspondence and support. Thanks and good luck and health in future, Tom. Name: Diana Croft Hometown: Cut Bank, MT 59427 Sent: 4.20 PM - 1/21 My brother and sister have PKD plus two cousins. (Mom was on home dialysis early 70's with Dad the care giver) Younger sister donated to older sister--rejection and now dialysis. Brother getting fistula day after tomorrow preparing for dialysis and hopefully I will be a match for transplant for him. We need to have a successful transplant in the family. Wondering about transplant hospitals. Thank you for all of the information and good luck to you and your family. Diana Name: Vivian Schaffer Hometown: scottsbluff,Neb Sent: 5.27 PM - 1/11 I am geting ready to have surgey so the dr can put me on Dialysis. My kidneys are going down hill real fast. Can you tell me anything to help me get thought this. |