| Author | Subject: living with kidney failure |
| susan | Posted At 14:05:59 03/17/2002 this is a great site. Is this from the states? I had e.coli infection in 1989. MY daughter and I. We both ended up on dialysis. She was on for 3 weeks and then recovered. Thank god. I was on for two months. Then I was an outpatient for 5 years. Watching my diet. Then I seemed to have recovered. I worked part time for most of this period.Then I went to work full time. That's when my life changed. I think it was too stressful. I enjoyed working but it literally killed me. I am now on a disability pension. Things are tight financially. I have so many questions I don't know where to start. First of all I would like to know if there are any programs that will help with the cost of my meds. We have pharmacare in Manitoba, Canada, plus we have a health plan we pay for through my husbands work that covers 80% of costs until we reach our pharmacare deductible. But now with less income I don't think we can afford the 80% cost upfront and wait for the refund. Secondly, has anyone had trouble with weight gain from medication? I continually put on weight. I do try to walk regularly. Plus my appetite is pretty poor. But I continue to gain weight. I cannot fit into my clothes. Is there safe exercises that could combat this weight gain? I will probably need dialysis in 6 mths. to a year. I feel the changes in my body. My doctor doesn't tell me much. He is an optimistic person which is good, but I found out about symptoms and things to come from the internet. I am not scared of the kidney failure. I am more scared of not surviving a long time with it and my children having to live without me. I am not afraid to die. I do have days where I am mad,sad, angry, depressed about it all. But these forums are great for people like me to realize there is a whole community of people dealing with this is their families. It is true we must be positive about our futures. I just wish I could win a million dollars and do everything I ever wanted to do and my family would be taken care of. Silly? Well, I have typed to much. Thankyou, |
| Beth Witten | Re: living with kidney failure (Currently 0 replies) Posted At 18:58:04 03/22/2002 Hi Susan, Thank you for the compliments about our web site. The Life Options Rehabilitation Program is administered by Medical Education Institute, Inc. in Madison, WI. We have found that coping with kidney disease is much easier if people are able to keep as positive an attitude as possible, if they seek answers to their questions, and if they participate actively in decision-making about their care. Having a supportive family, friends, and community helps tremendously as does keeping active physically and mentally. Expect to grieve the loss of the life you expected to have if you did not have kidney disease, but understand that in spite of kidney disease, if you take care of yourself, you can live long and well. To find out more information about kidney disease and treatment, look at our chronic kidney disease pages that you can access from our home page and check out our new interactive patient education site called "Kidney School" which you can find at www.kidneyschool.org. We are adding new modules all the time so check back regularly. |
| BERELS | Re: living with kidney failure (Currently 0 replies) Posted At 12:10:27 04/06/2002 i AM ABOUT TO START HEMODIALYSIS IN 2 WEEKS. I ALSO HAVE PARKINSONS DISEASE AND TAKE MIRAPEX. UNFORTUNATELY MIRAPEX IS PROCESSED THROUGH THE KIDNEY. HOWEVER, NO ONE SEEMS TO KNOW WHAT WILL HAPPEN WHEN I START DIALYSIS SINCE I AM MAXED OUT ON MIRAPEX. I AM WORRIED ABOUT OVER MEDICATION WHICH IS SERIOUS, MY NEPHROLOGIST AND NEUROLOGIST BOTH DO NOT HAVE ANY PATIENTS WITH THIS COMBINATION. NUTRITIONISTS CANNOT HELP. BOTTOM LINE: WE WILL SEE WHAT HAPPENS. I AM WORRIED I WILL BE TOO SICK TO HELP MAKE LOGICAL DECISIONS......PERHAPS DISORIENTED. I HAVE WRITTEN TO THE PHARMACEUTICAL COMPANY. SUGGESTION: NOT SURE! |
| Beth Witten | Re: living with kidney failure (Currently 0 replies) Posted At 23:01:10 04/09/2002 It sounds like you've been very proactive about your healthcare. It's a great idea to write the pharmaceutical company. I hope someone responds to you. In the meantime, I found information on a web site called Virtual Drug Store (www.virtualdrugstore.com/parkinsons/pramipexole.html that provides information on use, how it works, side effects, cautions for people (including people with kidney disease), drug interactions, and further reading. Although you're concerned you may not think or make decisions correctly, these are not stated side effects. However, it sounds like this medication can cause low blood pressure when moving from lying or sitting down to standing, can make people sleepy during the day, and can even cause you to see or hear things that are not there. The Virtual Drugstore web site says that dosage may need to be adjusted in people with kidney disease so I'd suggest that you ask to be closely monitored especially at first. Since safety can be an issue, like it often says of medication bottles, see how this medication affects you before you attempt to drive or operate machinery. If you're concerned about whether you'll be able to make logical decisions, you might want to name someone you trust very much and who understands you and your values very well to make decisions for your healthcare needs. You can complete an "advance directive" (durable power of attorney for healthcare decisions/healthcare proxy and/or living will). Ask your dialysis clinic social worker for information about advance directives. I hope that the medication helps you and that you have few, if any, side effects while using it. |
| Patty | Re: living with kidney failure (Currently 0 replies) Posted At 12:44:50 05/31/2002 I do not have Parkinson's but do take Mirapex for Restless Leg Syndrome. I have had no side effects from the combination of peritoneal dialysis and the Mirapex. I have been taking the Mirapex for about a year now and wouldn't be able to sleep without it. I hope this info helps you. |
| elana j. rainey | Re: living with kidney failure (Currently 0 replies) Posted At 22:30:55 05/01/2003 dear susan, i care for an elderley man who is on dialysis and also has parkinsons..he is on mirapex and seniment,three times a day...his parkinsons is very well controlled, and other than falling asleep very easily i cahn see no side effects..and both drugs seem to work with his dialysis...he has been on dialysis for 6 years... i do hope things work out for you...and i feelthat they will..god bless you and your family..lillylady @sbcglobal.net |