Author Topic: Welcome to the Patient stories section  (Read 2513 times)

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Welcome to the Patient stories section
« on: August 31, 2009, 06:03:18 AM »
realdialysisethics



Joined: 06 Jan 2003
Posts: 41

 Posted: Mon Jan 06, 2003 8:08 am    Post subject: Welcome to the Patient stories section.   

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You can post your story here for all the world to see. We know how important it is for you to be able to tell the world what you are going through, and we want to provide this for you as a service. 
 
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Marty



Joined: 28 Oct 2002
Posts: 160

 Posted: Sat Feb 08, 2003 5:53 am    Post subject: Our Story-Getting to Slow Nocturnal   

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My father started dialysis in-center hemo dialysis in 1998. The center was 45 minutes 1 way from our home. He suffered all the side affects of dialysis and was hospitalized for hypotension on at least 3 occassions in 2 years. At the time, I had my own business. Because of the fatigue, hypotension diminished mental capacity I drove dad to dialysis and checked on him throughout the day. I never knew when it would be drop everything and go to the ER because the hypotension caused him to pass out. This had an impact on my business because I was loosing so much time. I became very concerned about my financial well being as well as my fathers health. <
><
>We were told at the beginning of dialysis home hemo was an option. My father expressed to me his last 2 wishes 1 to dialyze at home and 2 to die at home. Home hemo was what my father wanted and I saw it as a way to salvage my business as I wouldn't be tied up 5 to 6 hrs. 3x a week with the dialysis commute. <
> <
>When I mentioned our desire to the center, no one could help. Not 1 staff member knew where home hemo was being offered. I came to the web and started my search. The gov. dialysis board proved to be way out dated. I called every center within a 150 mile radius which they said offered home hemo. It took me hrs. writing down telephone #'s and making the calls. My phone bills were <
>atrocious. I tried the network they didn't know either. <
><
>The more I searched the internet in hopes of finding a place; I began to here about slow nocturnal. <
>There were postings on a dialysis website from a Canadian Patient and a Nurse at Lynchburg Nephrology and Arlene put me in touch with Ridgerunner. Now I was becoming more interested in slow nocturnal than home hemo.<
><
>I printed all the articles I could find about slow nocturnal and presented them to my father and we decided this was the way to go. However finding a program seemed like searching for a needle in a haystack as I hadn't even found a home hemo program. About 6 months into my search I finally heard of a place in Syracuse NY that offered home hemo. 3 hrs. from our home. <
><
>I mentioned slow nocturnal to dad's nephrologist and he told me he thought it was a better treatment but knew little about it. Anyway as luck would have it the Nephrologist from Syracuse called our Nephrologist to see if we would be good candidates for home hemo. <
><
>The Nephrologist from Syracuse then called us and told me our Nephrologist had confirmed we would be good candidates but also mentioned our nephrologist said he though we were interested in slow nocturnal. I told him we were but I couldn't find a program and home hemo was the next best choice. He then told me Saratoga Springs had a slow nocturnal program. <
><
>I talked it over with dad and we decided to take the 5 hr trip to Saratoga and move to train as this seemed to be his best chance of having his energy back and feeling good. I knew I had to take the chance for him but I was skeptical that the results could be so amazingly different. <
><
>We went for a consultation visit and were accepted into training. I closed my business and off to training we went. We lived in a motel during the week and came home on weekends. Within 3 weeks of having dialysis 4x a week 5 hrs a week my father started noticing a considerable difference in how he felt. At first I felt totally overwhelmed and scared of it all but I made it through. After 5 weeks of training we were home on our own. After our 1st week, I couldn't believe how normal we felt again. Dad was feeling good, lots of energy, no hypotension and I felt someone had given me my life back. I could schedule appointments without thinking dialysis. I didn't have to check on dad all the time. His mind was sharp again and he had no signs of fatigue and he was up every morning with a to do list. We now have been doing slow nocturnal for over 2 years, I consider<
>it the best decision we ever made and I thank "God" everynight that there are places like Saratoga Springs and Lynchburg willing to help make a difference. <
><
>I was extremely disappointed in the no help we received from our center when trying to find a place and the network. I was also disappointed that although everyone said home hemo was an option it really wasn't true. I hope to see the day the government mandates a form of home hemo for all patients that want it and I hope to see the day the government pays for the extra treatments so all patients have a CHOICE of daily or slow nocturnal if this is their choosing.<
><
>To this day I cannot understand how nephrologist and dialysis staff cannot know the freedom home hemo offers patients and families and at least want to give them this much. Asking for change means asking someone to overcome obstacles and initiate programs, I hope to see the day when more decide to do just that overcome their obstacles and set in motion a way to make home hemo dialysis available. <
><

 
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ridgerunner



Joined: 11 Jan 2003
Posts: 101

 Posted: Sat Feb 08, 2003 3:37 pm    Post subject: home dialysis   

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i think that i am a little younger than marty father. i am 75. it makes me sad to see the patients in the clinic who are in much worse shape than i am. i have been on noctornal for 5 years. it was hard finding a doctor who was interested. i can say i have my life back. it is a hard road but the effort is worth it. 
 
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jfwag



Joined: 11 Jan 2003
Posts: 140

 Posted: Tue Feb 11, 2003 6:49 am    Post subject: Re: home dialysis   

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Marty, a great story. I plan to post a story on Lois on her 1st anniversary in March. Good luck in the future and hope Dad stays well. 
 
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mad borris



Joined: 23 Feb 2003
Posts: 6

 Posted: Sun Feb 23, 2003 12:14 am    Post subject: Re: home dialysis   

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as a uk dialysis patient I have just come across your website and I was astonished to read of the difficulty some patients have in accessing home haeomdialysis which is quite common in the UK and is available {I believe, tho' have no direct experience of it as, living alone without a carer, I wouldn't qualify or want it] on request and I know several ex-hospital patients who are now on home dialysis. But what is 'slow nocturnal'? I have never heard the expression before. Is it the same thing as home dialysis? But my astonishment at your stories is because I thought that hospital care in the US [once one had insurance] was among the best in the world while we here in the UK are conditioned to believe that our hospitals, though free to all whether lord or pauper, whether living in a castle or in a cardboard box, ranks fairly low in gradings of excellence. Certainly I find that, on returning from holiday dialysis in Ireland, Spain, Portugal, Cyprus, Malta, Germany and South Africa, my London hospital seems positively third world in comparison. I can't dialyse in the USA or Canada or indeed anywhere outside Europe a] because of my age [78] I am told that I am uninsurable and b] the cost of dialysis, on top of holiday costs, outside Europe would be prohibitive. I could afford dialysis in South Africa because of the very low value of the Rand. But anywhere in Europe dialysis is free because of reciprocal arrangements within the European Union. 
 
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Marty



Joined: 28 Oct 2002
Posts: 160

 Posted: Sun Feb 23, 2003 2:42 am    Post subject: Slow Nocturnal   

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Slow Nocturnal is the same as home hemo dialysis except.....Blood Pump Speeds are slower (slow)and you hook up to the machine and night (nocturnal) and go to sleep while the machine is running the treatment. Patients run anywhere from 4 to 6 nights a week getting substantially more dialysis. I believe there are some places in the UK implementing this as I read a post on another board from a UK patient who was going to start this and was asking questions.<
><
>A lot has changed in health care in the US and it isn't what it used to be. Most insurances now are HMO which limit what Drs. and where patients can be treated. Most dialysis centers are run by Corporations who appear to look at how much money they make more than patient outcomes.<
><
>In the US if you live in the right place (where good health care is available) and you have insurance that is not an HMO you can get the best medical treatment. 
 
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Isabel



Joined: 11 May 2003
Posts: 25

 Posted: Sun Jun 05, 2005 10:42 am    Post subject: New in dialysis   

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My mother has been putting on dialysis twice a week because a kidney failure. I spoke with her doctor and he told me that her kidneys are not able to take the fluid out. I usually help her to take the toxins out by clense her kidneys and eating organic foods but the problem is the fluid. I read a message where the more you do dialysis better it is for the pt. My question is how can I learn about slow noctural in the Florida area. Second, How can I find out is her kidney are shut down. What type of test I can request to this doctor to verify this information. <
><
>Thank you, Isabel 
 
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FYI



Joined: 15 Feb 2003
Posts: 72

 Posted: Tue Jun 07, 2005 7:42 am    Post subject: gfr   

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You need to know her GFR -glomerular filtration rate - it is the best test to measure your level of kidney function and determine your stage of kidney disease. Your doctor can calculate it from the results of your blood creatinine test, your age, race, gender and other factors.<
><
>www.kidney.org/kls/public/knowGFR.cfm<
><
>also learn about kidney failure here:<
>kidneyschool.org/splash/toc.shtml<
><
>If your Mom isn't producing any urine it is unlikely she will do well (or live very long) dialyzing only two times a week. More dialysis is better, more frequent dialysis is best. 
 
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Marty



Joined: 28 Oct 2002
Posts: 160

 Posted: Thu Jun 09, 2005 1:35 am    Post subject: Frequent Dialysis   

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Check out the http://www.homedialysis.org/ web site. They have a section which tells you what centers offer home dialysis in the Florida Area. They also have a section for PD and Home Hemo Patients were you<
>can read post from patients actually doing the dialysis at home. 
 
"Like me, you could.....be unfortunate enough to stumble upon a silent war. The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing,becomes as political an act as speaking out. Either way, you're accountable."

Arundhati Roy