Welcome to Gil's guestbook 2002!Name: Jeff Strailey Homepage: http://www.ktla.com Hometown: Santa Clarita, CA Sent: 4.51 PM - 12/31 Gil, Your perserverance through all of your renal experiences is amazing. God bless you and your new kidney and lets hope this one is a keeper. I was on dialysis for 2 years and 9 months and thought it was forever. My call came one day at work, my new kidney is almost 14 months old now and is functioning perfectly. It was a cakewalk compared to your experiences. Good luck and thank you for sharing your story. Jeff Strailey Los Angeles Name: Mary Schultz Hometown: So. St. Paul, MN Sent: 3.51 PM - 12/28 Gil, I can't believe it has been over a year already for your transplant?!! Congratulations!! I am still waiting for that call. I found out a few weeks ago that my wait could be substantially longer than they anticipated. Not the 1-2 years they said in the beginning (that was 3 years ago) More like 4-5 years...and possibly longer. To those of you who read this and are not sick from kidney failure...Organ donation is a great gift of life. Please consider being an organ donor. Thank you. Mary Name: niki Hometown: sydney.n.s.w.australia Sent: 4.48 AM - 12/27 lots of good luck we've been following this site my son had his second transplant in may.. i loved the bit about being weighed at 3.a.m. he nearly had a seizure when this happened to him.. scared the bejesus out of him... everything is so familiar... jeffs mum.... Name: Andy Stavros Hometown: Dix Hills NY Sent: 8.34 PM - 11/30 Because it is based on your many years with Dialysis experience, your writings are some of the finest I have read. I have learned more from you than I have from kidney manuals and other sources. Many thanks. Name: Gary Zasuwa Hometown: Detroit Sent: 12.13 PM - 11/22 Fantastic website - a lifetime of effort and an amazing journey. I think you will give many patients courage and hope. Name: JOHN AND DARLENE REINSCH 111 Hometown: NEW HAVEN, IN. 46774 Sent: 7.58 PM - 11/20 HELLO GIL, THANKS FOR THE INFOMATION YOUR SITE IS VERY HELPFUL. MY HUSBAND IS GETTING READY FOR DIALYSIS VERY DEPRESSED BUT I'M TRYING VERY HARD TO GET HIM THOUGH IT I HAVE BEEN VERY BUSY TRYING TO GET ALL THE INFOMATION AND EDUCATE MYSELF AND HIM AND THIS SITE IS HELPING. WOULD LIKE VERY MUCH TO TALK WITH YOU BY VIA E-MAIL. YOU SEE MY HUBBY HAS A LOT OF OTHER PROBLEMS ALSO FIRST HE IS A DIABETIC,HAD A HEART ATTACK WITH RENAL SHUTDOWN IN MAY OF 2001. TO THIS DAY I STILL BELIEVE IT WAS THE O.D. DOCTOR THAT DIDN'T PUT HIM IN THE HOSPITAL IN THE FIRST PLACE WITH THE PHENOMIA THEN DIDN'T CONTACT US WHEN HIS POTISIUM GOT UP TO 6.3 THEN WHEN WE WENT INTO SEE HER SHE SAID AND I QUOTE "WELL DIDN'T THEY NOTIFIY YOU". ANYWAY IT HAS BEEN A BATTLE SINCE THEN AND WE PRAY EVERYDAY FOR THE LORD TO GIVE US STRENGTH TO BE ABLE TO COPE. AGAIN THANK YOU SOOOO MUCH. GOD BLESS GIL SINCERELY, DARLENE REINSCH Name: Kay and Mike Shore Hometown: Phoenix, AZ Sent: 11.27 AM - 11/9 It is so comforting to feel the support of others. Thank you for all the info. Name: De lores C Hometown: Festus, Mo. Sent: 6.00 PM - 11/6 Thank you for the most comprehensive information I have read! I sincerely appreciate all your effort and information. Name: Catsim (Cathy) Hometown: Roseubd, Australia Sent: 8.50 PM - 10/23 Thanks for the information, Gil. I'll spend some time, now, reading through it all. Probably more than once. Again, thanks for the information. Name: Kim Norman Hometown: ninety six sc Sent: 11.52 PM - 10/19 i am 34 and have pkd,know sence 1999 and my boys have it to there 6&7 i have alot of pain ,look like i could have baby any day (ha,ha) Name: BeCe Hometown: Connelsville, MO Sent: 9.16 PM - 10/18 Hi Gil, Thank you so much, your site is wonderful. Rebecca Name: Jay Sohotha Hometown: Brussels Sent: 3.16 AM - 9/19 Thanks for the patients view of what it means to have PKD - brought a smile to my face even in these circumstances. I wish you and your family well for the future. Name: THERESE Hometown: NEW ORLEANS, LA Sent: 1.54 PM - 9/13 New to your website, but it's given me such a good feeling to know I'm not alone in my kidney failure. Alot of people try to understand, but there's nothing like someone who has been there. THANK YOU! Name: Beth Sent: 6.07 AM - 8/29 Thank you for the information. The neph told me to start looking for a kidney, and now I know a little more about what to look for. Beth Name: Mary Hometown: Houston, Tx. Sent: 8.49 PM - 8/26 Thanks, so much Gil, you put a lot of time in documenting your experiences. I wish you well. And you helped me so much. I am going to have to start dialysis soon, they tell me. Name: Jan Josephson Hometown: Bradenton, FL Sent: 12.07 PM - 8/21 Thank you for the compassionate sharing and also the important information you pass on. You're now my White Knight in this crazy maze of dialysis vs the uniformed. My mother is 78 and started dialysis a few months ago and I am looking for all the information I can find. You have given me a wealth of information. Thank you for passing on your experience, strength and hope...Jan Name: Bob Van Loon Hometown: Calgary, Alberta, Canada Sent: 1.39 PM - 8/15 It was great to see your site I am going to put it in under the favorites on the computer. I am at pre dialysis now. It will be about a year before I start dialysis. good luck to you. Bob Name: Danielle Sent: 10.48 PM - 8/2 Gil, I want to thank you SOOOO much what a godsend this site is and your journal of being a renal patient. My best friend, Mike, was diagnosed ESRD 6 years ago and it's been one thing after another. recently he has had some complications and is on hemo now and having a VERY hard time remaining positive and enjoying life. I can't wait to show him your site and show him he's not alone. He has this belief that he has bad luck and only he has alll these continual challenges. Thank you for making your life public and being a true inspiration to us all. God Bless and Take Care, Danielle Name: Bonnie Hometown: Houston, TX Sent: 12.29 PM - 6/28 Hi Gil, My father had PKD and I was diagnosed with it about 10 yrs. ago. My aunt had it as well and was on dialysis. I wish I would have known 1/2 as much as I learned just from your web site. Many of the doctors have never truly explained things to us. Thank you for sharing this and my prayers are with you for continued good health. You are a wonderful inspiration and I also think your wife is a wonderful person as well. Sincerely, Bonnie Name: Aimee Lalonde Hometown: Ogdensburg, NY Sent: 9.03 PM - 6/15 I would just like to say thank you to Gil for such an informative site. I'm a hemodialysis nurse and am very much pro-pt. education. It's wonderful to have a site to recommend to my pts. (I must say...I've learned a few things from this site too.) Name: Sage Hometown: SEattle, WA Sent: 10.53 PM - 6/13 What a wonderfully informative site! You write clearly, compassionately yet matter-of-factually. Blessings to you. You educate both patients as well as those that love and care for them. Name: Stuart Hometown: Aberdeen Scotland Sent: 3.00 PM - 6/11 Gil, This page of yours has been a real find. I am not new to the game but you have answered many questions of mine and given me new ideas that can help me with my problems. Thank you so much!! Strangely it is good to hear that the problems and joys that we undergo on dialysis is the same worldwide, so I can feel that I am really part of a family than just another sick person. Thank you again!!! Oh and you should put all this into a book Name: Bill Murray Hometown: London! But I live in Santa Clara CA now Sent: 7.01 PM - 5/27 Gil, I'm writing to thank you for the info/advice that you have posted on: http://gil1.home.pipeline.com/esrd/dmachine.htm My mother-in-law has been undergoing dialysis for about three months. Your info has been of enormous help to us in dealing with the doctors, nurses and technicians. They are perfectly prepared to answer questions, but one has to know which questions to ask. You provided us with all of the pointers and a lot of the likely responses. Very importantly, you helped us to understand the process of dialysis much better than any of the other documents that we've seen. These docs are either at too high a level of abstraction ('dialysis cleans the blood') or too low ('The effect of varying this-that-and-the-other micro-parameter on the dialysis of elderly Esquimeaux women allergic to aspirin'). Your doc hit the spot. So, thanks a lot. Cheers, Bill Murray Santa Clara, CA Name: Patricia Hometown: Houston, TX Sent: 12.13 AM - 5/21 My 67 yr old father started dialysis at the end of Jan 2002. It has been very hard to take him & pick him up from his sessions b/c you never know what to expect when he exits. The low blood pressure and cramping are some times really bad (as was the case today & that is why I started looking for information on dialysis) Seems like it is to be expected every time they remove 4 plus units of liquid (typically Monday's b/c of the weekend). Does anyone out there have ideas about relieving the cramping??? Please make new patients aware of the need to make sure the CLAMPS placed on their grafts in their arms AFTER DIALYSIS should not be left on for more than 15 minutes or so. IT CAN DAMAGE YOUR GRAFT (THE DIALYSIS CENTER LEFT MY DAD'S CLAMPS ON FOR MORE THAN 50 MINUTES AND HE HAD TO HAVE 3 SURGERIES TO GET IT FIXED- IT HAD ONLY BEEN IN USE FOR 2 MONTHS - HE DID NOT KNOW ANY BETTER. THE CENTER HAS SINCE SENT OUT NOTICES THAT THEY WOULD RATHER HAVE THE PATIENTS HOLD THE BANDAGE ON THEIR ARM UNTIL THEIR GRAFT STOPS BLEEDING. THIS LITTLE PIECE OF INFORMATION WOULD HAVE SAVED MY DAD FROM TIME SPENT AT OUT-PATIENT SURGERY, PAIN FROM BEING PUT UNDER AND FROM THE SURGERY ITSELF, & NOT TO MENTION $$$. HE ALSO FEARED HE WOULD NEED ANOTHER GRAFT B/C THIS ONE WAS TOO DAMAGED. LUCKILY IT WAS SURGICALLY REVISED! THANK YOU FOR HAVING THIS MESSAGE BOARD. YOU TRULY ARE AN INSPIRATION. Name: Billie Ruth Edwards Hometown: Cheyenne, WY Sent: 8.27 PM - 5/10 I just found your web page. My husband has been told he must prepare to go on dialysis. No one has told him what that means. I visited a Dialysis Center in Cheyenne (Marv will be in DC) and was unable to sleep for four days and could not eat much for a week and keep it down. The needles gave me nightmares which I still have. I am not sure if it is me who is expected to acquaint him with what he faces, or the doctor. I know you say it is not an ending, but a beginning, but to those of us who are terrified, it seems very much like an ending. I appreciate your information. It is from a perspective I did not have before. Thank you! Name: Cheryl Hometown: Charleston, SC Sent: 9.11 PM - 3/30 I was seeking information about dialysis and found your web page and I am so glad I did. My Dad just started dialysis 6 months ago..he is almost 80 years of age. He has been very active all of his life, and is having a difficult time adjusting to all phases of dialysis. He is taking several different medications, that information I now have, indicates he should not be taking. I now understand that he probably should be sipping water (or liquid) while on dialysis (he is extremely weak and dizzy for about 2 days after treatment) just when he feels better, he has to take another treatment! I would appreciate any additional information that could be helpful for him. Thank you! Cheryl Name: Paul Sent: 1.55 AM - 3/6 Hi Gil, Thanks so much for putting this site together. I have found it very helpful and informative. You have done a fantastic job. Thank you for your inspiration and your help. Name: Martha S Hometown: Maryland Sent: 9.55 AM - 3/2 Gil, I love you. You are the most hereandnow person in the world and you sure do tell it like it is. Thank you for letting us share in your experience; this page is a tremendous and far-reaching gift - as are your bravery and warmth. Take care and stay strong, my friend. - Martha S Name: Judy Hometown: Knoxville, Tn. Sent: 11.49 AM - 3/1 Gil, Many thanks for all the information you provide for others. I sure hope you have continued success with your new transplant. We love ya! Name: Cathy Homepage: http://members.shaw.ca/vanderwyst/PKD.html Hometown: Fort McMurray, Alberta Sent: 8.28 PM - 2/25 Dear Gil: I've just been checking out your "New and Refreshing" site. I just wanted to say that it is excellent and is such a wonderful source of information for new and old patients alike. Thank you for sharing all of your experiences with all of us with this life sentence...:-) By the way, I think 50 kg is sexier...:-) Love ya my friend....say hi to Penny! Love Cathy! Name: KIM Hometown: FAIRFAX,VA Sent: 2.18 PM - 2/22 GIL GIVE YOUR WIFE A BIG HUG AND KISS FOR ME AND MY FRIEND MIKE.LIKE SHE I AM CARING FOR MIKE WHO WAS RECENTLY DIAGNOSED WITH RENAL FAILURE ON 11/7/01 AND 3 DAYS AGO HE HAD A PERITONEAL CATHITER PUT IN HIM BECAUSE HE WAS PRONE TO HAVING BLOOD CLOTS SO THEY COULDNT DO A FISTULA,A GRAFT SO WE DECIDED TO GO WITH THE PERITONEAL..THIS WAS ALL BROUGHT ON BECAUSE OF HYPERTENSION HIGHEST BP WAS 289/189..WE WANT TO THANK YOU FOR YOUR WEB SITE.. Name: Kathy Hometown: Batavia IL Sent: 2.21 PM - 2/8 Thank you so much for making your website. I happened upon it doing a search. I was diagnosed with Chronic Kidney Failure 4 years ago and I still don't know everything about this disease. I especially was interested in the info on medicare. I had no idea I would be entitled to that when I start dialysis. Name: Helen Hometown: Bronx NY Sent: 8.31 AM - 2/2 hi Gil, I've been to your website several times but never signed up before. it is so good to have a voice of experience when questions come up. keep up the good work. Name: Gary(scary gary in pkd group) Hometown: Rogers Ar. Sent: 4.20 PM - 1/31 Nice web page excellent! I'm just starting in this world of acute renal failure, but if I can handle it half as well as you have I'll do all right.You truely are an inspiration! Name: Jane Sent: 8.53 PM - 1/16 I knew you were on the list, but did'nt know you received a transplant..Congratulations! Like other patients have mentioned, YOUR story helps us who are still waiting. Best wishes for you and your kidney. |