Welcome to Gil's guestbook 2000!Name: Ted Hoogland Hometown: Bay City, MI Sent: 7.12 PM - 12/16 Dear Gil, your messages are outstanding and I really learned a great deal form your related experiences and am glad that you now have yopur arms around your problems. I congratulate you and will correspond more at a later date. Best regards to a new friend, Ted Hoogland Name: Tony Villani Hometown: New Castle,Pa Sent: 2:04 AM - 12/4 My name is tony i am 20 years old and i have hrydronephrosis in both of my kidneys. i have 20% kidney function left in both of my kidneys. i have been through 20 surgeries so far in my life but the big one is still to come. i have a bad bladder also on top of that which i was born with a small bladder but i got that inlarged when i was 9 and they inlarged it with a piece of my intestine. i have had numerous of surgeries. i have had bladder stones, i had a bladder augmentation, i had a ostomy bag put on me, i had blockages removed, i had nephrostomy tubes put in my kidneys twice and that means they had tubes sticking out of my kidneys to give my kidneys and bladder a break so the urine would go into the tubes and drain iin a bag. right now i have no doctor they are afraid to touch me cause my case is so rare. i'm the only one in the u.s.a with this problem and doctors don't know what to do. i've been through hell and back so many times. my parenrs wrote to hillary clinton about my case and she wrote back cause the reason why we wrote her is because i have no insurance because my surgeries we too much money and all the antibiotics was too much money and the insurance company couldn't keep up with me. i had them tubes put in me last year at this time and i got a blood test done 2 weeks before i went to the doctors to get a check up and i went there and he told me that my kidneys got worse and there was nothing he could do for me and he dropped me. when i was 15 i got scopped by my home doctor that is a urologist and he said i was blocked so they rushed me to pittsburgh to get my blockage removed and i went to see my doctor so he could see the x-rays and he said i wasn't blocked and he told me to tell my doctor at home that "he was full of shit". after that i kepy complaining of kidney pain and my kidneys was dropping so my doctor sent me to a pshycologist cause he said it was in my head so we went for a second opinon and we went to a different doctor in pittsburgh and he put the nephrosomy tubes in me for the first time. he did a whitaker test on me as soon as i was done with the surgery a the test is a test were they put die through the tubes to see if i was blocked and i was blocked for 2 years. that doctor sent me to that pschyologist when i was 16 and i got that surgery when i was 18. so that was 2 years that went by were my kidneys dropped. the doctor that put them tubes in said i could have been blocked for 9 years. were i stand now i have no doctor cause they are afraid to touch me and i don't know what to do. if anybody can please give me information on anything or any doctor that would be great email me at Voo1121@aol.com cause i need help. i'm only 20 years old and i need help fast. i lost 5 pounds this month and i weigh 114 pounds now. i have no appitite and i'm afraid i'm going through kidney failure as i speak. if anyone has any questions or any information please email me please. i've been lookin for doctors on here but haven't found anyone around were i live. i've been to cleveland clinic, youngstown,ohio, colubus,ohio, akron ohio, pittsburgh,pa and new castle,pa cause thats were i loive. i need a doctor or information soon. pleas email me. gil your story is an insperation to everyone and your wife seems like the best ever she was there and never left your side. she loves you so much and you could tell. she was there for you through the good and bad times and i'm so happy to see that your ok and i just hope the best for you and your family. my prayers will be with you gil i will say a prayer for you tonight. your wife is like my girlfriend is cause my girlfriend hasn't left my side and never turned her back on me and she has been here since the beginging. thanks for your story and this is the best website. gil if u get a chance email me. thank you for your time and i hope you read this. trust me there is so much more to my case than this i tried my best to minimize it. thank you for your time. tony Name: Curtis Hometown: Plattsburgh, NY Sent: 6:26 PM - 12/3 My name is Curtis and I'm 36 years old. I have had Polycystic Kidney Disease all of my life. In March 2000, I started CAPD. On September 6, 2000, I was fortunate enough to receive a transplant. So far everthing is going along great, with no problems. Good luck to you and God Bless! Name: debbie gonzales Hometown: stamford, texas 79553 Sent: 8:50 PM - 12/1 I am about to receive a kidney transplant after 14 months of hemodialysis. My donor is my husband. My transplant date is December 5, 2000. Name: sonia Hometown: Queens, NY Sent: 9:41 PM - 11/29 I am a Dialyis patient for 12 years and I agree with everything you have said. It isn't easy in the beginning but your body adjusts to it. Name: monica lowell Hometown: Massachusetts Sent: 11:35 AM - 11/25 Educational!!! Thanks so much for sharing your experince. A very close relative went on dialysis a couple of months ago and it was a painful experience since his kidney failure came as a complete surprise. I am still trying to learn more about this disease- your comments have been so helpful!! Your tips' section should be publish in the Kidney Foundation's web page, and other patient educational materials. Best of luck, and I'll keep you in my prayers... Name: Patricia Hometown: Hertford, North Carolina Sent: 9:28 PM - 11/16 I really enjoy reading your web page. I'm 35 years old and have kidney failure. I just found out about it two months ago. I'm still trying to get use to going to dialysis three times a week,but I don't think you ever get use to going to the treatments. Hopefully one day I'll get a kidney transplant. HOPEFULLY we both will get one soon. GOOD LUCK Name: joanne Blight Hometown: Toronto, Canada Sent: 8:32 PM - 11/15 Dear Gil: What a great site!! I am a Registered Dietitian, I found your site intereasting and informative. Name: Carol Hometown: Pasadena,TX Sent: 8:32 PM - 11/15 You are an inspiration!I had kidney disease from age 3 to 15 but after taking large amounts of steroids(which was an experimental procedure when I took them in 1960)I was told that I was cured. I have been fine until 2 years ago I was told my creatinine was high but was due to previous scarring of my kidneys. Then I find out this year that I have chronic renal failure and my function is 22% and going.I am now 52 and am trying to learn as much as I can about all this.Thanks so much for an honest explanation. Name: Sidney Sent: 1:14 PM - 11/12 Good solid information. The potential problem with PD for normal sized men is not well communicated by the kidney professionals. Thanks for your history. (My history: PD, TX, HD)(Male, 49) Sid Name: Sharon Kaup Hometown: Las Vegas,Nevada Sent: 4:38 AM - 11/10 Hello I read most of this, my husband started on dialysis, September, 2000, Yours were horror stories, really I don't know how you ever made it this far, lots of prayers I am sure.It was just yesterday that I decided to write "our side" of this new text in our lives. It seems as though when he feels good for 24 or 36 hours something else happens that sets him back, I call this stones and rocks and bricks to stumble over because we are left in the dark to stumble. In the next 2 weeks I hope to have this written out and will get it to you somehow. God bless you and keep you, hoping we can be friends. Sharon Name: Lisa Hometown: Wichita, Kansas Sent: 11:40 PM - 11/9 Hello Gil, Enjoyed reading your page. I am 25 yrs old and have been a hemodialysis patient since Feb of 2000. Mykidney failure is hereditary. Somewhere way down my family line. I read your storys and its amazing how things are different all over the world. I moved here to Kansas 3 yrs ago and then learned that I had kidney problems. They were just fine until Feb where my one kidney that worked went down to 5%. I was put in the hospital and put on hemodialysis. It was very hard at first. Its hard cause I have a wonderful husband of almost 6 yrs, and two wonderful girls ages 2 and 4. I think about them alot. My decisions I make about my life right now are based around them and myself. I have been suffering with this Chronic Renal Failure for all my 25 yrs, and never knew it. I knew I got scik sometimes but when I would go to the doctor they would tell me it was my iron and slap me on iron pills. Well that was in Arkansas where I have learned that doctors are not all good. I give thanks to the doctors and nurses here in Wichita Kansas. When I first started out they calmed me down and let me know that they were here for me and all that. I am going through all my dental work to knock out my infections i may have in my gums so the infections will not make my new kidney(when I get on the list..lol) to reject. I will then go through my medical workup and then hopefully put on the list. I am anxious to recieve it so I can get to feeling 100%. I keep all kidney patients inmy prayers and thoughts. And that means you too! You take care and will pray for you! Thanks Name: Sue Hometown: Bloomfield, N.J. Sent: 9:34 PM - 11/9 Gil, thank you for your honest appraisal of hemo and PD. After being on hemo for less than 2 years, I have been informed that my arms will no longer support any grafts or fistulas. So PD is now my option. I had the cath. insertion and am now awaiting my training sessions. As for your surgery stories , I have been in the OR nine times for thrombectomies between Jan 99 and Dec 99. I had another procedure in Jan 2000 to try to open the graft in the radiology dept. Before doing the procedure the doctor informed me he can solve the problem 99% of the time. However I awoke with a neck catheter and a clotted graft that can not be unclotted. I hope my experience with PD is better than yours, I am very agressive in my own health care and I like the knowledge I'll be calling the shots. At least I'll be able to shower again!!! I am on the transplant list for a pancreas-kidney. After being diabetic for 38 years I'd like to try life on the other side!!! May you get your 3rd kidney and may it be a complete success! Name: Robyn Hometown: Carbondale, Illinois, USA Sent: 5:30 PM - 11/8 Gil, I am a physician assistant student in my first year. I ran across your homepage while searching for information on PKD, and couldn't tear myself away. Thank you for contributing to my education in a profoundly important way. Robyn Name: Zeb Jessup Hometown: Gilbert, Arizona Sent: 8:57 PM - 11/2 Thanks for your honest appraisals. I have great respect for the medical profession, especially the nurses as I have had bladder/prostate cancer and heart bypass. I am happy to be on hemodialysis which appears to be working. I'm older, 74, and happy for every month I get. Hope yur next transplant works well! Zeb Name: Joan Iamele Hometown: B.C. Canada Sent: 1:24 AM - 10/25 I have two childern with kidney disease, My daughter was diagnosed at age 15 and was on dialysis for 1 1/2yrs she recieved her fathers kidney and is doing well. Of coarse with her ups and downs as I always say everyone has a story. My son is 16 and has been on dialysis for 1 1/2 yrs he is on the list to recieve a cadavor kidney My husband matched both childern I have a differnt blood type. Both my childern were/are on the cycler we have no hemodialysis in our community. If they had to have hemo we would have to move to a larger center. We live in a rural area in northern B.C. at times I find this very frightening but we have been able to manage. I hope all is stable for now and God Bless your in our prayers. Name: Barb Hometown: Gibraltar, Mi, USA Sent: 3:16 PM - 10/23 Gil, Your story was interesting to read. I am a ccpd patient now, but previrously hemo. For me hemo sucked big time. I'm glad in works for you.The cycler was my surivor. Good Luck and God Bless. Name: Angelo Rizzo Jr Hometown: Taunton,Ma Sent: 9:06 PM - 10/10 Dear Gil, My wife and I read your story.I can relate to you 100%. I am currently on dialysis and this is going on my third year. I had received my 1st transplant in may of 1990 and it started rejecting sometime in 1996. I ended up in the hospital on 3/17/97 witha perferated colon due to the high does of steroids i was taking. I would very much like to hear from you to see how you are doing today.I too am on the transplant list Name: Hans Hometown: Den Haag, The netherlands Sent: 9:14 AM - 10/5 Gil, what a story and thanks for sharing your experiences with PD and tips for hemo. I hope you are okay now. I've have saved your URL as I may have to go on dialysis within a year. Name: Martha Spice Hometown: Maryland Sent: 6:19 AM - 10/5 You have proven something that I have always believed (and have come to appreciate even more strongly during the last year especially) and that is that there are lessons and blessings inherent in even the hardest of times. I recently told a near-ESRD patient that she was starting to embark on a journey that was going to be hard but would also prove to be uniquely interesting and ultimately positive. It seems to me that, while ESRD patients may not be the most physically healthy people in the world, they do tend to become stronger, wiser, and warmer in the most important ways. I am 48 years old and I am successfully using PD. I do CAPD and I am fortunate in that my experience with it has been a positive one. I am also what you described as the best candidate for PD - a small female. I am not a good candidate for a transplant due to problems with medications and so I will probably be doing PD for the rest of my life. Thank you for writing your story. I shall be telling other people about this site. One thing for sure, the ESRD community is a warm one and that is a lovely thing indeed. Take good care, everyone, and celebrate life. - Martha My Credo: Count Your Blessings And Not Your Troubles. Name: Bridget Homepage: http://groups.msn.com/PolycysticKidneydiseasechatcommunity Hometown: Syracuse New York Sent: 6:17 PM - 10/2 Gil , great page and wonderful imformative site. I'll keep you in my thoughts and prayers. I hope everything works out well. Take care and god bless Bridget Name: jeff nicol Hometown: Sydney, Australia Sent: 2:32 AM - 9/30 Hi Gil,I read your story with amazement I am 43 years young(male)had CRF at 27 had never been ill (Apart from colds minor injuries etc)before had no family history of kd(both parents still alive and well also an older brother).Was diagnosed in August 1984 had a Fistula (AV) fitted then went on PD 4 xchanges 2 ltrs per day, back then the bag you filled your tummy with was used 4 hours later to drain the waste so I would roll up the empty bag with line attached and put it in my back pocket I never had any problems with it, 6 months later i received a donor kidney which I had for 11 years, that kidney failed in 96 I've been on the cycler 3/3ltr xchanges 1/2.5ltr every 3hrs at night plus I do 2/2.5 manual changes during the day I tried Haemo at home but found it to stressful I think I must be one of the lucky ones as I feel relatively normal and tolerate pd well I am 60kilos ringing wet but could easily tolerate 3ltrs every change I watch my diet to a certan extent but still indulge myself now and then I hope others in our situation can take heart in my letter I am waiting for another transplant.Thanks Gil Ihope everything goes better for you this time. Name: peggy Hometown: chicago il Sent: 2:49 PM - 9/22 dear gil what a frightening story my husband is down to 10% kidney fuction and is hoping for a transplant before he must go on dyalisis this has been a nightmare for us and we really havent had to face any of the things you have had to deal with is this what we have in store for us I thought this type of thing went out in the 60s why have you had to wait so long for a third transplant? may god bless you and grant you all your wishes you have by far suffered enough Name: Sue Hometown: Clinchfield, Ga Sent: 11:22 PM - 9/9 Hi Gil, Just read your page, Im new to internet. Your story was scary. I had renal failure since age 12, needed the "D" word at age 33,(1985). Signed up then for cadaver, waited 6 months, was transplanted 4/86. Never had a rejection, was a near perfect match. Still doing well after 14 1/2 yrs. Im hoping God will smile on you as he did me. You hang in there your day will come. Get well soon. Name: fred Hometown: denver colorado Sent: 8:04 PM - 8/6 I couldn't finish. too painful. but I'll come back and try again. Its too familiar. My mother died of kidney failure in 1963. Dialysis was just an experimental process then. My brother had two transplants in the early 70's. The second lasted almost 2 years. He died from his refusal to go back on dialsis - though it took alot of effort. I've been in dialysis now for nearly 3 years and my history is much like yours - I knew it was coming and have seen my kidney doctor ever since my brother died in 76. I'm on the list and yet terrified both of not getting a transplant and of getting one. Both are frightening. Thanks for writing these pages. fred Name: Penny Weir Hometown: Selinsgrove, PA Sent: 6:46 PM - 8/5 Very touching. I printed out the 22 tips! My mother had a heartattack in April and has had to go on dialysis and is having a difficult time with it. She thinks it is the end of the world and we keep telling her it is. Name: Emily Sent: 3:03 PM - 8/2 Incredible story. I am speechless. Name: Nathan Flatman Hometown: Richmond-Upon-Thames Sent: 11:48 AM - 7/20 Hi Everyone, I have just found out I have 30% function and its not looking good, this is all new to me, I have never been ill! Its sharing views and ideas, and taking strength from others which has helped me in the last few weeks. If anyone has some advice to offer I will be glad to hear it. Thanks Name: Dan Hometown: Marshall,MI Sent: 10:43 AM - 7/1 Gil, just read your PD Adventure, i'm at a loss for words, thank god your as strong as you are, I am just starting down the road of Kidney failure, still have a few months left before they fail, got to let my doc know if I want PD or Hemo ? right now i'm leaning in the Hemo direction, thanks so much for the article, it will help in my decision, gods in your corner my friend. Name: J. M. Biggers Homepage: http://htt://pancreas-kidney.tripod.com Hometown: Charlotte, NC Sent: 9:50 PM - 6/30 Enjoyed the site. True terror tales from the early '80's! I had similar experiences with PD: seemed to work at first, but became a mental and psychic drag, and I gained weight dangerously fast. Plus, the PD changed the texture of the duodenum,requiring the transplant docs to stitch the new pancreas into a "second-choice" position. PD may work for a lot of people, but I was not one. --JMB Name: Darlene Hometown: Chicopee, MA Sent: 10:08 PM - 6/22 Gil, thank you SO MUCH for telling the truth about the hassles of PD! There really isn't any time to do anything else when you have to do 5 treatments a day! I was on it for 3 years and I got 4 peritonitis infections. I had to go back on hemo, and when they did a nasal culture for a suspected sinus infection, guess what they found? I'm a staph carrier! No WONDER I had peritonitis four times-- I was contaminating my catheter every time I hooked up! To add insult to injury, I found out that a simple test could have shown that I carried staph, and that would have disqualified me from being a PD candidate! I've been on hemo for almost 6 years now. It's a pain, but at least I have four days out of the week for ME! Great site-- ooops, I know you should never say 'site' to a hemo patient! Take care! --Darlene Name: Chris Hometown: Fort Collins Colorado Sent: 7:37 AM - 6/1 I read your transplant story. It sounds like everything that could go wrong did go wrong. I'm glad to hear you made it through it all. My daughter should be getting a transplant eventually. I hope we don't have anything like your "adventure". Good luck and God bless. Name: Gary Sent: 11:24 AM - 4/2 I found your web site very informative. Better times are just ahead for this planet. Name: Freda Homepage: http://hometown.aol.com/domesrd/index.html Hometown: Ohio Sent: 7:46 PM - 3/15 Hello Gil! Thanks for adding your homepage to Dominic's page. I hope everything is well. Take care and talk to you later! Name: Terri Hometown: Birmingham, AL Sent: 12:50 PM - 3/12 I have been on dialysis since 1978. Your site has been the best I have found so far. Name: Cath Donohue Hometown: Brisbane Australia Sent: 12:29 AM - 3/8 WOW! The tears are running down my face as I write!How do you come through so much with such humour? God bless you, your wife & your children, I hope you are well now & forever more, please let us know how you have been since then & how are your children? & I thought I was badly done to!!! Name: STAN A.STARKS Hometown: Fresno,Ca93722 Sent: 1:35 AM - 3/3 45 pound kidneys,Transplant,Told I was dying 5 times.Doing OK now.Was a Millwright Gen.Forman 20 years cert.welder 30 years,Union business rep.10 years.Into learning computers now.Retired teaching myself for the most part cad-cam-EDM,Mech.drawing,computer repair,programing and anyting to keep brain working.Like your site very much.You can e-mail anytime.Typing at 50 very hard.I can build anything almost.Pkd was bad for me to.But It could have worse. I know. GOOD LUCK Name: Janice Hometown: Cerritos, CA Sent: 1:18 PM - 3/2 You've lived through hell, but must be very strong to have survived. I hope your next transplant is the one that will work perfectly. My PKD is progressing too fast, and UCLA Hospital wants to transplant me with my husband's kidney before I go on dialysis, but we are both scared. Hopefully, it won't be necessary for a long time. Best of luck to you and your health. Name: Cathy Homepage: http://members.shaw.ca/vanderwyst/PKD.html Hometown: Alberta, Canada Sent: 7:51 PM - 3/1 Gil you have left me speechless. What an incredible story. I can't believe what you have gone through but by telling this story I have learned so much. Thank you for sharing and keep that wonderful sense of humor. *HUGS* Cathy! Name: Bill Kelloway Hometown: Ottawa, ON, Canada Sent: 5:06 AM - 2/25 Gil: I have been following your observations and comments posted on the board and have been struck by the usefulness of your shared experience to others, such as my self. Your web page is equally as useful ... please continue to present your personal findings and observations. Now, I am attempting to descover the costs/benefits of hemodialysis versus transplant, as a treatment, as I have realized many benefits while on hemodialysis that I do not want to lose by going for a transplant. Any thoughts on the relative advantages/disadvantages of each modality of treatment? Bill Name: Steve Homepage: http://members.xoom.com/erbmovie/index1.htm Hometown: Rancho Mirage, California Sent: 11:22 PM - 2/13 Very informative site. I learned more in 30 minutes than I've learned in a year of dialysis. Stephen Lodge Name: Becky Hometown: Royal Oak, MI Sent: 7:14 AM - 2/9 Gil- The web page looks great. Hope you are doing well on CAPD. Becky Name: JudyO Hometown: Concord, CA Sent: 9:18 PM - 1/10 Your story is heartwrenching... My husband was fortunate to get a transplant from his father in 1970 and another from his brother in 1977. The 1977 transplant is still going strong!! Name: Chrissy Homepage: http://www.geocities.com/HotSprings/Falls/7375 Hometown: Boston, MA Sent: 3:13 AM - 1/7 Gil, I really enjoyed your homepage. What a lot of good information. Thanks also for sharing your personal stories with us. Chrissy Name: Teri Hometown: Edmonton,Alberta Canada Sent: 10:54 PM - 1/6 What a horror story and you lived to tell about it. My husband just started dialysis on Dec. 10/99. He has a temporary line in his jugular and booked for a fistula on Jan. 25/00. Best of luck to you in the future. God bless. Name: Maureen Hometown: Framingham, MA Sent: 9:25 PM - 1/6 Great page! I'm sorry you went through such a rotten time with your transplants!! My brother was transplanted in 1983. Longer hospitalization than now and more precautions taken, but not bad at all compared to your story. Now it's a breeze!!! Name: Nerissa Hometown: Chicago Sent: 6:53 PM - 1/4 Gil, I read the transplant story and look forward to the rest. Looks great! Nerissa Name: CoolMaw Hometown: St. Louis, Mo. Sent: 11:55 AM - 1/4 Congratulations on your Page!!! It looks like it has alot of helpful info in it. The more information that families can find out about renal diseases...the better!!! Name: Cindi Hometown: Manitowac, WI (now Saginaw MI) Sent: 12:55 PM - 1/3 Hiya Gil! Very nice job on your webpage! I'll have to keep the URL handy to refer people to when they need information. Best of luck to you and Penny for ever and ever! Cindi Name: Karebearv Hometown: NOTB Sent: 7:20 PM - 1/2 Darn, I really wanted to be number one!! But you're still @1 with me!!! Congrats on a great page. Hope it can help others as much as you've helped so many of us! Kare Name: Angela Homepage: http://www.angelfire.com/nv/angelakay/index2.html Hometown: Sioux Falls, SD (Las Vegas) Sent: 6:43 PM - 1/2 Gil- Great WebPage! Keep up the good work. Happy Year 2000! *hugs* |