| Author | Subject: Welcome New Bulletin Board Members |
| Beth Witten | Posted At 21:09:23 08/23/2001 Welcome to the Life Options Forum for Patients. This forum is for people with kidney disease and their loved ones to share your thoughts, concerns, and/or suggestions about living long and well with kidney disease. Please join us! |
| felecia smith | Re: Welcome New Bulletin Board Members (Currently 1 replies) Posted At 18:08:38 08/29/2001 I am looking for information on the lifesite hemodialysis access system. It is relatively new in the states, but I understand have been used in England for quite some time. If you know of a web site please let me know. |
| Clarence Rasmussen | Re: Welcome New Bulletin Board Members (Currently 3 replies) Posted At 11:20:26 08/30/2001 Hi! I have been on Dialysis since Mar.15-01 I get my blood cleaned on Mon Wed Fri After I spend 5 hours at the dialysis clinic, I can hardly move and I must goto bed for about 2 hours. Want TO Know If This Is Normal..... |
| sidneykidney | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 09:12:59 08/31/2001 Hi I am a dialysis patient and have been for 6 years in that time I have had a lot experiences which I would like to share with others. Please go to my website www.btinternet.com/~cross1 and read my story and then if you would like to get in touch please do so both myself and my Mum would like to hear from you |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 00:08:42 09/14/2001 Felecia, you asked for information about the LifeSite Hemodialysis Access System. The company that makes this device is VasCa. You can read about this system at www.vasca.com/patients_families/index_patients.asp. Clarence, you say that you must go to bed for 2 hours after your 5-hour hemodialysis treatment. Dialysis affects different people differently. Do what you can to make your dialysis treatments easier. For instance, it often helps to drink no more than your fluid restriction. The more fluid that needs to be removed each treatment, the more wiped out you'll feel. If you're eating more or less, notify your nurses. Your dry weight could need to be adjusted. You could be weak and easily fatigued because you're anemic or malnourished. Ask your nurse how your weight and labs are compared to what they should be. Many patients have reported that they feel better after beginning a gradual exercise program. We have a booklet on exercise posted on our website. Look at the Patient Interest Checklists on our website to get ideas of questions to ask members of your healthcare team. The more you know and participate in your care, the better you will do. And finally, Shane, thanks for sharing your experiences with people that visit our website bulletin board through your website. |
| Janelle | Re: Welcome New Bulletin Board Members (Currently 1 replies) Posted At 00:26:06 11/08/2001 Hi. Thanks for welcoming me. I find this really difficult to deal with. I have polycystic kidney disease. I received that diagnosis back in December of '98. But the doctors never talked about it or told me anything. My mom didn't have this condition affect her until later on in life so I thought I was pretty much okay and didn't think much of it. Well, just about a year and a half ago they had me make regular check-ups with a nephrologist. My Creatnin is at 3.3 rising steadily and my clearance is about 10%. I'm really scared. My doctor says I'll have to go on dialysis within 6 months to a year. Sometimes I'm positive and have a good attitude about this. Sometimes I get really depressed and resent the heck out of having to deal with this at the age of 27. Anyone have any good advice? Thank you for listening. |
| Janelle | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 00:26:51 11/08/2001 Hi. Thanks for welcoming me. I find this really difficult to deal with. I have polycystic kidney disease. I received that diagnosis back in December of '98. But the doctors never talked about it or told me anything. My mom didn't have this condition affect her until later on in life so I thought I was pretty much okay and didn't think much of it. Well, just about a year and a half ago they had me make regular check-ups with a nephrologist. My Creatnin is at 3.3 rising steadily and my clearance is about 10%. I'm really scared. My doctor says I'll have to go on dialysis within 6 months to a year. Sometimes I'm positive and have a good attitude about this. Sometimes I get really depressed and resent the heck out of having to deal with this at the age of 27. Anyone have any good advice? Thank you for listening. |
| frank | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 13:04:13 11/25/2001 I had a kidney transplant over 21 yrs ago when I was 21.For the last year my creatinine has averaged around 5.0. I've had nine people tested and my sister-in-law was a match until the last test, a cat skan where they found kidney stones. I have 2 others who will be tested this week and God willingly one will be a match. If not I will be going on dialysis very soon. My blood tests have been good but the symtoms of a failing kidney have begun to take its toll. I am very thankful for having 21 years plus with my transplanted kidney from my mother. I have 4 children and have been married for over 13 years. I was on dialysis for 6 months before having my transplant in June of 1980. I try to accept the fate that God has given me and appreciate all the freedom from my 1st transplant. |
| JUDIE DELL'ALBA | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 10:26:44 12/21/2001 THANK YOU FOR BEING HERE WITH HELP. MY FRIEND HAS RECENTLY STARTED HEMO DIALYSIS AND HAS TERRIBLE LEG CRAMPS AFTER HER TREATMENTS. DOES ANYONE ELSE HAVE THIS PROBLEM? |
| willie woods | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 15:09:43 12/27/2001 i have been on dialysis since april/97. recently i have aquired an unquenchable thrist. suggestions please!!!!!! |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 16:07:22 02/01/2002 I wanted to answer Willie Wood's question about Regarding unquenchable thirst. I am a nephrology social worker with over 20 years of experience. Thirst is a huge complaint of people on dialysis. Some things that might affect your thirst include hidden salt you're getting in foods you're eating, medications you're taking, and high blood sugar levels. I'd suggest that you talk with the dietitian, nurse, or doctor at your dialysis clinic and let them know about this new symptom and see if they can help you troubleshoot its cause. In the meantime, Life Options has several tips about thirst on our Showcase for People on Dialysis at http://www.lifeoptions.org/patient/showcase/index.shtml. |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 16:25:00 02/01/2002 Judie Dell-Alba asked about her friend's leg cramps. As a nephrology social worker with 20+ years of experience, I have known patients who experienced cramps during or after dialysis. Newer machinery and sodium modeling (settings that can be done on newer machines) has reduced this symptom a lot. If your friend hasn't told the dialysis staff and/or her doctor about her leg cramps after dialysis, she should do so. Cramps may be due to drinking too much and trying to take off more than dialysis is intended to take off OR taking off more than should be taken off and trying to get weight below the assumed dry weight. Your friend should do the best she can to stick as closely as possible to the fluid restriction her doctor and dietitian prescribed. Many people find that it helps to avoid salt (or foods with hidden salt), to watch blood sugar (if a diabetic), and to measure the amount of fluid allowed daily into a container and either drink from the container or pour off the amount of other fluid drunk. Foods that are liquid at room temperature (soup, Jell-O, ice, frozen desserts, etc.) should be considered in the amount of fluid taken in. This way it's easy to track what you've drunk and what you have left for the day. It also helps to weigh daily on a reliable scale wearing the same clothing (or nude) so you can see how much you've gained. Most of the weight gained will be related to fluid. You can find tips you can share with your friend on ways to control fluids on the Showcase for People on Dialysis at http://www.lifeoptions.org/patient/showcase/index.shtml Your friend should also report to the nurses if she has changes in her appetite that have either led her to eat better OR to eat less. She should also report if she has been vomiting or to having diarrhea. Any of these situations could affect her "dry weight." If the nurses know about her cramps, how well she's eating and/or what's happening with her bowels can help them adjust her dry weight up or down as needed. Hopefully between watching the fluid and being more knowledgeable about her dry weight, the cramps will be less or will go entirely away. If not, perhaps her doctor can suggest a medication for cramps. Whatever she does, she should not take any medication (prescribed or over the counter) or herbal supplement without consulting her physician. |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 18:09:36 02/01/2002 Life Options really appreciates the interest that you have shown to our Patient Community Bulletin Board. However, please do NOT post your message under the welcome message (here). People will not find your message to respond to it here. Instead, please use your "back" button now to go back to the Patient Community Bulletin Board screen and post a new message there. The topic you list in the "subject" will let people know what your question is so they can respond to it. Thanks for your understanding. |
| gwenwolpert | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 12:43:59 04/07/2002 greetings fellow dialysis patients. i am a 40 year old female. i want to know how to live my life to the fullest. i am on the list for a kidney transplant. i am scared ! i have been on dialysiss for two years. i volunteer at sinai hospital 2 days a week. i live in an assisted living facility. i hope to live alone after the transplant. please respond to my question. How DO I LIVE MY LIFE WHEN ON DIALYSIS AND WAITING FOR A KIDNEY?? |
| Jojo Jumola | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 04:35:37 04/15/2002 Hello everyone, to the staff and my fellow kidney patients. In our family, among 7 siblings, 5 of us have a hereditary kidney ailment diagnosed as Alport's Syndome. And 3 of us are already kidney transplants. I'm 30 yrs old, from Philippines. I underwent dialysis for 1,5 yrs and now i was transplanted 3 years ago and able to go back to my work again about 2 years already. Its really a difficult life for a kidney patient from dialysis and thru transplant life specially in financial areas, but consider us people, though we don't have resources we survive somehow in our case, as of now we struggle still but life goes on. we just left it to God. I just wanna inspire others somehow in my lil' way. |
| Jojo Jumola | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 04:38:14 04/15/2002 Hello everyone, to the staff and my fellow kidney patients. In our family, among 7 siblings, 5 of us have a hereditary kidney ailment diagnosed as Alport's Syndome. And 3 of us are already kidney transplants. I'm 30 yrs old, from Philippines. I underwent dialysis for 1,5 yrs and now i was transplanted 3 years ago and able to go back to my work again about 2 years already. Its really a difficult life for a kidney patient from dialysis and thru transplant life specially in financial areas, but consider us people, though we don't have resources we survive somehow in our case, as of now we struggle still but life goes on. we just left it to God. I just wanna inspire others somehow in my lil' way. |
| Jojo | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 04:56:14 04/15/2002 I just wanna know, if there's already a cure for Alport's syndrome, and if there's new anti rejection medicines at lower cost and few dose? |
| Anderson MagalhÊes Junior | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 08:20:37 04/26/2002 Hi ! I'm a physician from Rio de Janeiro - Brazil. I'm interested on internal medicine issues. I'd like to subscribe to post and receive letters by miling lists ! How can I do that ? Thanks. |
| Anderson MagalhÊes Junior | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 08:21:51 04/26/2002 Hi ! I'm a physician from Rio de Janeiro - Brazil. I'm interested on internal medicine issues. I'd like to subscribe to post and receive letters by miling lists ! How can I do that ? Thanks. My correct e-mail is : mdanderson@ig.com.br |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 10:45:56 05/16/2002 JoJo, If you look at www.rarediseases.org/search/rdbdetail_abstract.html?disname=Alport%20Syndrome (be sure to copy and paste this entire link), you will find a list of organizations that can give you more information about Alport's Syndrome. |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 10:51:35 05/16/2002 To find out information about listservs, you might want to check out the National Kidney Foundation's web site for the cyberNephrology project at www.kidney.org/professionals/cyber/index.cfm. On this site there is a long list of possible listservs you could join and how to subscribe. |
| F Davidson | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 08:14:48 05/25/2002 I have been diagnosed with diabetes for about 6 yars, and recently my doctor told me that my creatnin lvel was at 3.4. She did not seem to be concerned about this. Should I be? and if so what treatment should I be recieving? I would welcome any information by e-mail or whatever source, I'm worried. |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 15:39:20 06/02/2002 Unfortunately, many physicians who do not specialize in kidney disease are not concerned enough when a patient's creatinine level rises above normal. They either don't realize that creatinine is not a very precise measure of early changes in kidney function or they don't realize that progression of kidney disease can be slowed or even stopped with specific treatments. When creatinine rises above normal (usually around 1.5 depending on the lab), kidney function is already reduced to around 50% of normal. Diabetes is the #1 cause of kidney failure and people with diabetes are at greater risk of developing it. However, there are many things that can be done to protect kidneys as kidney function falls. To be sure that you have the best chance of prolonging your kidney function, you should seek *immediate* referral to a nephrologist (kidney specialist) who can test your urine for protein and more accurately measure your kidney function. Based on the stage of your kidney disease, he/she will recommend treatments (medications, diet, exercise, etc.) and education to help you keep your kidneys functioning as long as possible. For more information about new guidelines from the National Kidney Foundation that could help reduce the number of people with early kidney disease that go undiagnosed and untreated see www.kidney.org/general/news/kdoqi_ckdrelease.cfm. You can print this press release and show it to your doctor so he/she can be up-to-date on the latest information about caring for people with kidney disease. |
| Janet | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 04:41:17 02/17/2003 I was diagnosed with adult polycystic kidney disease 24 years ago and although I have attended the same hospital renal clinic for the last 20 years I have only recently met anyone with the same disease with whom I could discuss our problem. It is good to find a site with like minded people who understand the way I feel. It is too easy to feel isolated when friends and family don't really know the fears I have about the future. Since I have had my fistula made I know that dialysis is not far away, and am not looking forward to the future. How is it possible to live a "normal" life when 3 days a week are spent on the machine? |
| Jenn | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 03:25:49 02/20/2003 Hi, I'm new to this group and I'm here because of my boyfriend. He recieved a kidney transplant in December 1994 when he was 17, after 6 years of dialysis. Last week, he had a regular blood test and his creatnin level was a whole point higher than usual (it went from 1.5 to 2.5). He had more blood drawn yesterday and it was still higher than normal (2.4). He seems worried, although he tries to hide it, which really scares me. I'd like to know more about what signs and symptoms to expect if his kidney is starting to fail. What creatnin level is considered bad enough to need dialysis? What other blood test levels are important indicators? Is there anything we can do to help lower his numbers, or do we just sit and wait for him to get sick again? Please help, I'm so scared! |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 00:48:42 02/28/2003 I sounds like your boyfriend is experiencing a rejection episode. I don't know whether he is being followed by the transplant program or by his local kidney specialist. If he hasn't already done so, he needs to contact the transplant coordinator at the hospital where he got his kidney transplant right away. Based on his increasing creatinine, he/she can decide how best to treat him. Sometimes treatment will stop the rejection and sometimes even with treatment, the kidney will fail. If your boyfriend does reject the kidney, he can do dialysis. He can also get on the transplant list and get another transplant, assuming his health is OK otherwise. I've known several people who've had multiple kidney transplants. There is information on transplant rejection on Medline Plus at: www.nlm.nih.gov/medlineplus/ency/article/000815.htm |
| Gill Cragg | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 12:04:21 03/14/2003 My 4 year old son had a kidney removed due hydronephrosis when he was 2, recently he was admitted to hospital with a high grade fever, on doing blood test, it was found that his creatnin was quite high in his other kidney, further tests were done a month later only to find that his creatnin had not gone down so next week he has to go for a renal tract scan. I know it's it's a silly thing and i really should know the answer, but can anyone tell me what creatnin is. |
| mike | disablilty and student loans (Currently 0 replies) Posted At 00:32:04 04/30/2003 I am post kidnet transplant 3+ years. My creating has slowly crept up to 2.2. I am trying to plan as much as possible for the future. I am self employed and unable to obtain any disability insurance since my problem are congenital. I have two sons 5 and 5 months old and would like to spend as much quality time with them while I am still feeling fairly well. My question is if someone is post transplant and not working, do they automatically qualify for disablity? SSI? or do you have to be on dialysis? Does a doctor have to sign that you are unable to work? Also anyone with student loans, does post tranplant or dialysis qualify a person as being disabled enough to postpone loans? Any help is appreciated. |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 23:26:03 04/30/2003 Typically someone with a transplant can be evaluated for disability as soon as 1 year post-transplant. Check out the Social Security booklet on disability (called the Blue Book) online at http://www.socialsecurity.gov/disability/professionals/bluebook/. Be sure to look at the adult listings. Kidney problems are listed under Section 6.00. People with transplants do not automatically qualify for disability (SSDI or SSI), although those on dialysis are able to get disability pretty easily. Social Security looks at labs. x-rays, scans, and symptoms. You have to complete an application for disability. It asks the doctors you've seen. Social Security asks them for information about your medical condition. If necessary, Social Security will have you see a doctor they choose. I'd suggest that you contact the agency that has your student loan to ask about waivers of loan payments if you become disabled. I have known people that were on dialysis and able to get approval for this. |
| jane willis | dissociate disease (Currently 0 replies) Posted At 08:01:13 07/15/2003 Does one ever get well enough to return to work? |
| Beth Witten | Re: Welcome New Bulletin Board Members (Currently 0 replies) Posted At 22:40:05 07/22/2003 Patients with kidney failure on all types of treatment can and do work. About 24% currently work or in school, but Life Options did research that showed that another 21% of unemployed people felt they were physically able to work and wanted to work. What helps is is someone on dialysis is getting good dialysis (URR >65%), has anemia well controlled (hemaglobin 33-36%), is well nourished, physically active, and if they have support from their healthcare team and family. Dialysis clinics can prioritize shifts to help patients work and/or teach patients how to do home dialysis. There are work incentives in federal disability programs that help people ease back into the workforce. There are vocational rehabilitation programs that can help people get trained in new careers if that is needed because of kidney failure and demands of treatment. If you haven't told your doctor and healthcare team that you'd like to get well enough to work, do. Here are some other tips: 1) Don't miss or shorten any dialysis treatments. 2) Keep track of your lab values. Ask questions if your labs not within the normal limits for people with kidney failure. 3) Ask for educational materials to help you do the best you can. Many are free and online. Besides Life Options materials, check out www.kidney.org and www.aakp.org. 4) If you've become weak because of your illness, start slowly to build up your strength. The Life Options web site has information on exercise in its print materials at www.lifeoptions.org/combined/materials/indexpa.shtml 5) Life Options just posted an updated booklet called "Employment: A Kidney Patient's Guide to Working and Paying for Treatment" and can be found on the web site in #4. Don't overlook the resources section. 6) Check out Kidney School (www.kidneyschool.org). Some of the modules may help you get well enough to work. Good luck! |