What tips would you like to share with others that helped you get started and do well on home hemodialysis?
The first tip is to join this board! This is great! I know alot of people, including myself, who have been looking for this type of discussion board. Anf this is just in time. I am currently finishing a book about my dialysis experiences and am working on the homehemo part. I should be able to get some good info from here. I am not, myself on dialysi but my S.O. was. Will return regularly!
We’re glad to have you and hope you will tell anyone you know who has kidney disease or knows someone with kidney disease about our site.
I would suggest as a tip for patients to get their supplies well organized and establish a routine.
Marty, can you give us a little more detail? HOW do you get supplies organized–do you have some kind of a system that you can share? What does your daily routine look like on dialysis days?
I don’t want to answer for Marty, but Marty was a big help to me when I first started homehemo, organization is paramount! You will be given a list of things to do. Having supplies such as syringes, saline bags, heparin, tx sheet on a clip board, any bandages needed (the list goes on) set out on your table will greatly help you to remember what is needed next. As far as the machine goes, to have all your tubbing, dialysate, tanks and then the water testing equipment all out and ready to go helps. Things are easily done simultaneously once you have a routine down. The machine does alot for you while you might say be heparin dwelling or even drawing up saline in the syringes. Organization is the key. It will depend somewhat on the machine and its capabilities and since I have not performed a TX for a couple of years I am sure Marty can add to this. I remember the color coded charts Marty mailed when we first started and I used the majority of them. Good luck.
If you’d like to share your worksheets with folks, send them to us and we’d be happy to make them downloadable!
One thing to keep in mind is that you should always rotate your supplies. For instance if you keep your needles in a particular basket do not just add your resupplies on top of the old needles. Use up your oldest supplies before starting in on your new stuff.
When I resupply I write the date on the boxes with a marker and then when the time comes to open a new box I always make sure I am using the oldest. Of course this is most important for things like heparin but it is a good habit for everything you use.
I’ll share my sheets and I’ll also send along some pictures of our setup to give patients an idea of what to think about. E-mail me the address of where to send at Marty1@infoblvd.net or post it here.
I organized our supplies according to the space we had. But the important thing was that I always put things in the same place. So I can go right to the place where it is stored and know how much I have on hand. In the bedroom I have a table on top of that table I took empty saline boxes and put them on there side. In the bottom section I put a box of 5cc syringes, in another one I put a box of 3cc syringes, In the top section I put bottles of heparin, gauze pads, alchohol wipes, TLC’s, Calculator, Thermometer etc. (A picture will show this better than I can explain) In another room I have those cheap wire stackable cubes. The top one has dialyzers, the next blood tubing, the next saline. My routine is to walk in this room grab a dialyzer, tubing, and saline needed for the treatment. Go to the bedroom walk up to the table and grab the 3 5cc syringes I’ll need filled with Saline and the alchohol wipe to clean were I insert the syringes. During the venous prime I fill the Saline Syringes and then go to my table and fill my heparin syringes. About this time the machine has completed prime and I push the test button. While test is going on I prepare dad’s catheter for a betadine soak. After test is complete I connect the hansens, thread the air detector, and connect the tranducers. Now I am ready to push the recirculation button on the machine. During recirc. I take a 5 minute break and let dad know we will be starting soon so he can do what he has to. After recirc. dad comes in I get his weight , BP, and temp. He then gets into bed. I have 2 small garbage containers, one for paper and 1 for needles. I bring over a tray with the heparin and saline syringes and place them on the bed along with the small garbage cans. As I draw the old heparin from his lines I discard the needles in the small can
for sharps and the wrappers in the paper can. I draw the 10ccs of blood for recirculating in the lines. This is suppose to recirculate for 10 minutes. During this time I call the center and give them dad’s stats. I also put a box of gloves on top of the machine and a couple of masks in case I need to do something during the treatment. After the 10 minutes I proceed with hooking dad up. Once dad is on the machine I take the small waste cans and dump them into the containers they belong in. After treatment I bring over the tray that is prepared for the take off. I need to insert saline and heparin the cath. I also bring back the small waste cans. After I have Finished with the treatment I immediately do an acid clean, then a heat disinfect. We are instructed to do a chemical rinse twice a week. I always do mine on Wednesday and Saturday. This is what I mean by routine I always do them the same day so I don’t have to question myself on when and if I did them. I always give EPO on Friday. I always backwash the salt and carbon tanks on Wednesday and Saturdays. I have a calendar hanging on the wall with the days I am to draw bloods. My check sheet also hangs on the wall. I have everything I need located within 5 steps of the machine. While the machine is cleaning I put my trays in a small water basin to soak in bleach. I wipe the machine down with bleach, the table I use, my calculator, dads thermometer and the small waste baskets. While the machine is still cleaning it self and the trays have been in bleach about 10 minutes I take the trays to the kitchen rinse them and set them on the table to dry. After the machine has completed the cleaning cycles I rinse out my bicarb jug and fill it for the nights treatment. I take it to the our utility room where I have my testing supplies and test it for chlorine and hardness. If all is OK I cap the jug and at 4pm will return and add the bicarb for the nights session. The only exception to this is Wednesday I always do a bleach of the bicarb jug. Then that morning I fill the jug with bleach let it set and then go back and rinse it in the afternoon. I clean the RO once a month which I chose to be the Monday before I go back for a clinic visit. I found that by setting up a routine things were always done, and I am always ready to do dialysis. I don’t have to go home and think about did I do this or that and do I need to remember to do it at some other time? It goes faster once a routine is developed as you just know what to do next and there is no confusion or thinking about what you should do. I also created a very detailed step by step set procedure. When I first came home every treatment I would check each step off as I did it. By doing this I developed a routine for clamping clamps etc. and I didn’t get myself in messes setting up by wetting a transducer or something because I forgot to clamp a clamp or open a clamp. I also didn’t get alarms because I forgot to unclamp the heparin or set it up. After a month of check marks I had the routine memorized and I still follow it today. I don’t understand the RO’s so I have a very detailed list on how to clean which I check off step by step. My instructions go something like this Turn off the water, Check Mark. Connect the CIP line jug to machine Check Mark. Put the Drain Line in Jug Check Mark. Etc. Etc. It has been 4 years and I still use these sheets. It doesn’t take any time at all to place a check mark after I have completed a step and it keeps me from having to spend a lot of time thinking about what to do.
I will admit it took me a good deal of time creating my sheets, to get them to perfection but it was well worth the effort. I have total peace of mind about what I am doing.
Thanks this is VERY helpful detail for folks, and I emailed you about where to send your info and photos. What type of machine are you using at home?
We use the Fresenius 2008H.
For any of you who do nocturnal home hemo–how does it work to be sleeping with those needles in at night?
I did a study in May/June, where I dialyzed at night for 8 hours. This is the second time I’ve switched from my standard short daily run to a long nocturnal schedule. I have also dialyzed twice on a nocturnal schedule at a Fresenius unit in Evanston Illinois which I visit regularly because it is near where I grew up. In all cases I was able to sleep.
For me my arm stays very still but I know that some people on nocturnal toss and turn. I think this is a case where a good, thoughtful tape job goes a long way towards preventing the needles accidentally pulling out. During the studies I am supplied with a monitor that will alarm if it senses wetness. I think this is sold as a baby diaper monitor but speaking for myself I would rather rely on a good tape job.
I also use buttonhole needles which are dull so there does not seem to be much of a chance of infiltrating myself by moving around. I think some nocturnal programs require the use of buttonhole needles for this reason. I also know that some nocturnal programs require remote monitoring during treatment. However, at every conference I’ve been to I ask if there has ever been a case of remote monitoring saving someone or sending help in a timely fashion to someone on home dialsyis. To date I have never heard of remote monitoring actually being used to help someone on home hemo, it may have happened but I have not heard about it.
During the most recent nocturnal study I dialyzed in my standard chair, while all the other times I dialyzed in a bed. I think I prefer a chair. In a bed I kept feeling like I wanted to roll onto my side to get comfortable, while in a chair I seem to be able to sleep more easily on my back. My chair does have a drawback - when you lower the back beyond a certain point your feet come up to a point where they are above your head. This is on purpose: the chair, as all dialysis chairs should be, is designed to be able to go into the Trendelenburg position which is for helping counteract the effects of low blood pressure. The ideal home nocturnal chair would go flat before bringing the feet above the head.
In one of the member stories a resin bag is mentioned. The pt. uses the 2008F machine. The drawback to me doing home hemo involved extra costs for DI, and so I’m wondering exactly what is the resin bag, and does it replace DI tanks? Ty Lin.
Joyce, the person profiled, dialyzes at Lynchburg Nephrology. This program has a website (http://www.lynchburgnephrology.com) that lists the equipment that they use. The DI system they use apparently has a resin bag as part of that system. The Lynchburg website also has a way to use “contact us” to send an email. You might want to call or email them to ask how their DI system compares to what your clinic uses in cost and effectiveness or ask your clinic if someone could call or email them.
Thankyou Beth! I’m at a new unit now, but I’m hoping they will think about offering home hemo, as they currently don’t. Lin.
Lin, which part of the country are you in? Have you checked our database to see if there are any other clinics anywhere nearby that might offer what you’re looking for? The database isnt’ QUITE complete–we’re supposed to be receiving FMC’s data in the next couple of days, and they have the largest number of clinics. So if you did check and didn’t find anything yet, look again in a couple of weeks just in case.
By the way, in case anyone else has looked at our database–it’s entirely new, NOT based on Medicare data. We received information directly from the dialysis companies and called ALL of the independent clinics to verify their information, so what you find here is different than what you’ll find elsewhere–and links directly to the database are welcome, too.
Hi Dori, I’m in Northwestern NJ, way out in the burbs, actually better known as “the boondocks” lol I was in an FMC unit in Morris County which is where I initially signed up for home hemo through the Pine Brook unit (purchased by FMC). I was accepted to program but told I would have to pay a lot extra because I have my own well. I made it known I was dissatified with that arrangement since ins. co. was paying over 13k a month at that time, and also I knew of no one else who was asked to pay extra. No one even visited my home! After the problems staff removed the home hemo brochures and posters from the unit. The PineBrook unit is no longer there. It was to my knowledge the only unit in N. NJ offering home hemo… Looking back I think I was told what I was because they really didn’t want any more home pts… Another pt. applied to and was told he wasn’t acceptable at all because he has a well. They couldn’t explain why the two different stories. A nurse later told me it was her feeling they were only offering it because they have to, but really don’t want anyone to apply. When I started dialysis I was offered in center and PD. The same happened when I moved to new unit. When they mentioned home hemo I got all excited until I realized what they meant was PD. There is currently no information available on home hemo (hd) at the new unit I"m in, and when I asked about it staff didn’t even know who to refer me to.
I looked on site but there were no listings, but it said FMC section wasn’t completed yet. I 'm hoping that eventually I can talk neph. (head of unit I’m in) into offering a program. It’s not FMC; is headquartered in Colorado. Ty, Lin.
I hope you’re successful advocating with your doctor and/or clinic administration to get them to offer home hemo. It is amazing how many people don’t think of home hemo when someone asks about home dialysis. On the other hand, we found that many people we talked with when making calls to clinics to get info about their home dialysis programs didn’t consider PD “home dialysis.” A tremendous amount of education is needed.
On Home Dialysis Central currently we list 8 clinics in NJ that offer any kind of home hemo. I’m not sure how far you’d have to drive to one of these clinics. You’d probably only have to go to the clinic once a month after you’d finished training.
If you’re near PA, Home Dialysis Central lists 12 clinics there, all but one of which offer conventional (3x/week) home hemo. Once clinic (Aliquippa) offers nocturnal home hemo.
If you’re near NY, Home Dialysis Central lists 25 clinics that offer any type of home hemo and several offer either daily or nocturnal home hemo.
If you haven’t done so, check all 3 boxes for home hemo options to get a list of clinics in any state that offer any home hemo treatment. Keep checking back. When we get the list of FMC clinics and add them to the database, I suspect that you’ll find even more clinics that offer home hemodialysis. Hopefully one will be in your area.