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[This message has been edited by Gary Peterson (edited 11-11-2001).]

So where do we want to start? Lets go. How many people know if their cenyer even offers Home Hemo, Nocturnal, Daily etc...What is the latest on legislation. Has anyone ever heard of Dr. Lockridge in Lynchburg, VA

Try this page:

Daily, Nocturnal and Home Hemodialysis

[This message has been edited by Gary Peterson (edited 11-16-2001).]

Here are some Home Hemo Pix: http://communities.msn.com/DialysisTransplantCity/jfwag...howPhoto&PhotoID=193

From the earliest days of the Medicare ESRD Program, the regulations have required that patients be made aware of all the treatment options available to them, including home hemodialysis and transplantation. Unfortunately, today the best dialysis treatment � home hemodialysis � is only available through a few units in the United States.

Why is home hemodialysis the best treatment for patients who can do it? Because it provides the best survival, the best quality of life and the greatest opportunity for rehabilitation of any form of dialysis. This is not just because healthier patients are pre selected for home hemodialysis � even when this is factored into the equation, it is still the best.

Who can use home hemodialysis? Anyone with a suitable home, who is medically stable on dialysis, has the will to be independent and take responsibility for his own treatment and well being and has a willing family member or other person to assist them. Note that the assistant should be a helper � not a dialysis technician. Remember, independence is what is needed, not dependence.

Why is home hemodialysis better than peritoneal dialysis? Because most patients on CAPD or CCPD will have to change to hemodialysis after several years. In comparison, there are patients who have been on home hemodialysis for more than 20 years.

What are some other advantages of home hemodialysis? Rehabilitation, whether back to work or back to many of the things you enjoyed before you became sick, is important. In our Northwest Kidney Centers' home hemodialysis program, three quarters of the patients aged between 18 and 55 are working or going to school full or part time. Many of the older home hemodialysis patients are active in the community and with their family and friends. You will have more time with your family. You won't have to come to a unit three times weekly and mix with other sick people. You won't have to worry about transportation for treatment. You will become independent and confident in your own abilities to care for yourself.

Is it safe? With appropriate training and effective support services it is as safe, if not safer, than dialysis in a center. Remember, the patient is in control, not some technician.

Is home hemodialysis for everybody? No, but at a recent meeting several experienced nephrologists felt that some 20 percent of patients could be trained to do home hemodialysis if training programs and support services were made available.

What about the future? Every study of patients dialyzing five or more times a week ("daily dialysis") has indicated an improvement in well being. After all, the normal kidney works seven days a week, and if you dialyze every day or almost every day, this is much more like the normal kidney � fewer ups and downs.

What are the advantages of more frequent or daily dialysis? More energy and strength, better mental clarity, better rehabilitation, better sexual function, better sleep, better toleration of dialysis, better blood pressure control with fewer drugs, less anemia, fewer fluid problems and better appetite and nutrition. At the same time there is less thirst, itching, tiredness and depression, and fewer dietary restrictions, fewer hospitalizations, and fewer drugs are needed.

What does all this mean? If we are really going to improve dialysis and all aspects of the life of ESRD patients, the only way will be more frequent dialysis. This can be short � one to two and a half hours � or long � six to eight hours at night while sleeping. Several hundred patients in the U.S. are already doing this. Almost all of them say they hope never to go back to the three-times-a-week schedule because they now feel so much better. And, if you are going to dialyze more often, the obvious place to do this is at home. New equipment is being developed to make home hemodialysis easier to use and understand.

How can I learn more about home hemodialysis? There is nothing like first-hand experience. Talk to someone on home hemodialysis about the advantages and disadvantages of dialyzing at home. The AAKP Annual Convention provides kidney patients a unique opportunity to share their experiences with fellow kidney patients from all over the country.

Why don't you ask your doctor about home hemodialysis? This should be available to you now. More frequent dialysis will require changes in Medicare reimbursement to pay for more than three treatments weekly but if you are lucky enough to be able to do this, you can then add your voice to those of us pressing the government to change the rules to allow the best possible treatment for more patients.

I would like to see additional discussion in this category. I would like to discuss regulatory issues, staffing, coordination of care, etc. Any ideas on how to get this jump started?

Go ahead and ask, I am sitting here performing Home Hemo at this time on my partner. 2nd day alone, finished training etc...moved in machine and about ready to hook up. We were trained by a FMC unit in Mass. for about two months.

another possible advantage to home hemo is the fact that you can do "true" every other day treatments (without the gap of a weekend) there was an article about a home patient who dialyzed every other day (m-w-f-sun-tue-thr,etc.) and had a significant improvements in labs (better albumin, crit, etc) with no additional meds. Sounds like a winner. Nocturnal sounds like it would produce the same results with very little inconvience to the user.

I totally agree with jwag. My husband is one of the 20+ year home hemo people. I have had techs argue that doing dialysis at home is unsafe. We have never had a problem--think about the possiblilty of cross contamination in a facility. Luckily, besides our "home unit" where we go for checkups (which is about an hour away), we have a WONDERFUL center where we live for backup--this is handy for times we have machine problems, etc. I guess we have the best of both worlds.
Home hemo allows patients to run their own lives and treatments, rather than be at the mercy of a center's schedule. My husband has traveled, worked full time, etc. In fact, he's in the family room next door dialyzing, while I'm online now. There are times when it seems it would be nice to do center dialysis, but the unit here is even great about that and take my husband when I need to be gone or just need a break. (I would note that my husband's local nephrologist is one of three that run the hospital based center here.)

Over the years, other patients have expressed the idea of being intimidated by the machine, also stating they are afraid they will hurt the patient or cause "something terrible to happen." With proper patient education, hopefully, they would realize that, with reasonable care and concentration, dialysis is not that difficult.

Wow Dez, 20 years! Only two days for us. But with the proper training like we recieved this was easy. I was a nervous wreck the few days leading up to doing it alone but much to my surprise I was completely relaxed and confident the first day. The pressure was actually off unlike I sometimes felt during the training sessions. It was a small room with people always in and out being watched etc... At home it was a real breeze. We are basically the first clients for this modality to start from scratch for this unit. Like you, if I need a break, the unit will take her for whatever time I need. It is also amazing how many people know nothing about this. Are you doing it 3X's/week or more?

Wow, twenty years! There is hope I will se my kids grow up. We have been doing nocturnal home hemo for almost a year. I keep telling the other patients at the center how much better you feel, it is almost like a miracle.But most are content going incenter, sticking out their arm and going to sleep.
My only concern so far has been lack of technical support. We were the first in our area and Frecinious (sp?) said it wasn't cost effective to have technical support after hours or on weekends (when I actually run)until they had more patients. If I dialyze on Thursday and a machine breaks down on Saturday -- I can't dialyze again until Monday -- a four day wait.I never went four days while going incenter. In 10 months we have been though 3 dialysis machines, four R.O.'s and three D.I.'s (the last two are water treatment systems). If these were a washer and dryer I would have told them to take them back!!

What machine are you using? Fresenius 2008H?

A few points:
-We do traditional 3 times per week using an "old" Baxter 550 machine. In 20 years, we are only on our 3rd machine. It seems that, although ours doesn't have all the "bells and whistles", it does a good job with minimum breakdown. Labs are good, etc.
-Baxter offers tech support after hours. However, in reality, I call them, but they come out the next day. (That does include weekends though). this has worked very well.
-We normally dialyze on a Sunday,Tuesday, Thursday night schedule. This works for us, plus minimizes the chance of weekend breakdown.
-Your "home" training unit should also offer 24hour on-call support, although this is usually for nursing, non machine related troubleshooting.
-We have been known to dialyze an extra time (every other day)on occasion-due to fluid problems or to change our scheduled days to fit into a vacation schedule, etc.

Another general comment. My husband and I totally agree that home is better. Studies have shown that home patients overall "do better," even taking into account that the older, sicker dialysis population usually is not on home hemo. I'm sure this is due to home patients being responsible for their own well being. Psychologically, it is also less disrupting to an person's life.

I have been doing slow nocturnal with my father(age 77) for 13 months. The difference in him after switching to slow nocturnal was like a miracle. We haven't had the machine problems Carol has which seems very excessive. Carol what RO's are you useing? If you have to wait 4 days for a repair don't they take you in-center for dialysis?

I am using the fresenius 2008h - the problems have mostly been with the RO (Zyza tech) and DI. They say it is due to my poor water quality -- they said total disolveable solids (TDS)in city water is 15 -17 parts per million and my well water is over 1000.
But the last time they changed the filter sacks in the DI the tech put it together wrong and it leaked for 2 weeks before they sent somone from the manufacturer to fix it.
Just yesterday I called them with an alarm -- RO TDS was over 50, they brought me another RO and when they hooked it up it didn't work! So they just unhooked the alarms and said not to worry the DI will catch everything!
I really think it is just the tech's at my center. I am the first patient in their nocturnal program. They do not act familiar with either water treatment system.
As far as going so long without dialysis, they are supposed to leave a position open for us nocturnal patients but it doesn't always work. The big problem is when I have a problem on Saturday night. It is to late to go in center (I start setting up at 10pm)and the center isn't open again until Monday. So I have gone from Thursday until Monday without. Luckily i have never been seriously fluid overloaded, just uncomfortable.
When things are working, it is much better. I have gone back to work -- even if only part time. I just wish they could get their act together!